Recovering Jonathan!

Status Update

2012-01-06T19:04:00.000-05:00

My new year resolution is to start logging on this blog again, at least weekly if not more often. I am going through another wave of emotions and this blog has always been a great wait to offloads my feelings.

In the past few months, Jonathan seemed to have adapted to the new public school reasonably well. But after paying close attention to his behavior and after meeting with the IEP team, I am second guessing if moving him back to public school was the right decision. I guess I will never know. He has no friends. Not one single one. And I do not see him being more "street smart" or feeling like he can fit into large groups any better than before. If anything, I see him more isolated and driven into his world of video games. He does enjoy the chess club, and the violin classes the most. He has no problems academically (has As in all his courses except art in which he got a C). But no one has invited him to a birthday party or for a playdate. He has not talked about anyone and has no desire to have playdates with anyone in particular. In his old school, he loved having playdates and he was always invited to parties. As a matter of fact, his old friends still call him. His playdates are with his old school's friends. Mmmm. Food for thought.

When I asked him if he wanted to change back, he told me that not now because he did not want to lose his friends again. And even cried. So I am confused. He has no friends, but does not want to lose his friends. I need help.

I approached a mom from the previous school that I know, and asked her about the social skills group that she is taking her son to, and it sounded like a great idea. I contacted them and I am waiting for an intake appointment. She mentioned that I should have a private session with them to see if they can find out if Jonathan should go back to the previous private school, which was like a home for us, of stay in this one. I will follow her advise.

On a different note, I spoke with Jonathan's new DAN! Dr. 2 weeks ago and he told me that his lab reports show that he no longer has a "mitochondrial" dysfunction. This is huge. In 7 years, his blood work had never been so good. So that means something. I don't know why the social piece is still so problematic, but I am happy with the new combination of biomedical interventions that this Dr. put him on.

More to come...

Back to Public School

2011-10-15T16:09:00.000-05:00

For the past 2 years, Jonathan attended a wonderful private school that focused primarily in small classrooms (student to teacher ratio) and lots of movement. He did very well there. He overcame many of his behavioral problems. This year we decided to put him back in public school because an area where we believe he still need to improve on is in his social skills and street smartness. And the best way to learn is to be exposed to it. Since he has no major sensory problems anymore (he at times can get annoyed, but he regulates very well and ignores the person/people annoying him), and since he does well academically, we took a leap of faith and put him back in public school. So far, he is doing really well. He has an IEP to help him work on improving his social skills. The special ed teacher focuses on helping him fit in with other kids during recess and lunch. But he is rather happy right now. He attended this public school for pre-school (the autism program), kindergarden and 1st grade. So he was already familiar with the facility and remembered a few kids. He is not overwhelmed. He actually is in the before and after care and loves to go to school. He got sick 2 weeks ago and missed 4 days of school and was very upset about that. So far he is getting only As and Bs in all his quizzes. He is due to have his IEP redone by the middle of November as the school decided to do a full re-evaluation to figure out what exactly he needs help with.

Bronchitis

2011-10-09T16:09:00.002-05:00

Jonathan got bronchitis this year. Based on the Dr's chart, he had not been sick since November 2009. He had 103+ fever for 5 days in a row. He started feeling sick on October 2nd, and the Dr. did not give him antibiotics until October 7. Poor kid had fever an a horrible cough for 5 days. He is much better now.

NIH believes he is not on the Spectrum

2011-09-01T21:00:00.005-05:00

Got a call on August 31st from the National Institute of Health (NIH). I enrolled Jonathan on an Autism research study and he had a 4-hr evaluation last week. The Dr. that conducted the evaluation told me today that Jonathan does not qualify for their autism research study because he does not meet the Autism criteria based on the "Diagnostic and Statistical Manual of Mental Disorders (DSM-IV)". Although he shows some challenges in the executive functioning and general day-to-day skills and has narrow interests (mainly video games and electronics), he is otherwise an average kid. He also told me that his verbal IQ went from 80 in 2008 to 97 as of last week. The normal range is 90 to 110. We were aiming to get him to 100 by the time he started college. So this is a huge milestone for us. He recommended a re-evaluation so we better focus on his current needs because as he grows up, things might get more challenging for him. I am going to schedule an evaluation with Children's Hospital tomorrow. If they drop the formal diagnosis on his chart, we will open the Johnny Walker Blue Label bottle. Until then, we will just celebrate that we are getting closer to that day. I want to thank all our friends and family for sticking around and being so supportive. The past 7 years have been very challenging and we would have never made it without your support. WAY TO GO JONATHAN!!!

Guitar Lessons and Some Regressions

2011-07-03T00:04:00.000-05:00

Jonathan and Vanessa started Guitar Lesson last Friday. Their Grandaunt and Greatuncle gave them guitars for their birthdays and we signed them up. The class was a bit boring at first, but it picked up. Jonathan did well during their first lesson in class (and of course they have to practice at home). They also want piano lessons. They will come later in the summer.

Behavioral Regression Observed:

This weekend Jonathan was very defiant. He got up early to play video games and with this new Apple program (he is teaching himself how to program in Apple computer language), but at 10:30 when I told him to come bicycle ride with Vanessa and me, he complained. He rode his bike for less than 10 minutes and complaint of being tired. When we got him, I asked him to do some exercises with and complained. We went to the Farmers' Market, and he complained. He complained all day today. I have not given him yucca in a week (ran out). I am wondering if it is the ammonia talking. I'll go to Whole Food tomorrow to pick some up.

School Year is Over - Recap!

2011-06-21T21:21:00.064-05:00

School ended today. Jonathan finished 3rd grade with an excellent report card. It was a great year overall for Jonathan. Here is a recap:

School Year 2010-2011 (great): School started very bumpy last September 2010. He had a new teacher and new friends. There were 8 kids in his class with 2 teachers, but they were all too hyper and got on each other's nerves. So the school principal decided to break their class into 2 classes of 4 kids each. And that made a huge improvement. The kids did not have time to interact and fight with each other as they were always busy with school activities. During the recess and open gym activities, they were teamed up with kids from other classrooms so they would exercise their social skills. He had behavioral problems in December. The school principal brought it to our attention in January. He was not socializing, always grumpy and eating lunch alone either in a corner or in the Principal's office. This behavior was not letting him socialize and even learn. He also had issues with his new carpool ride. Always arrived at school very grumpy and unable to focus on his duties. So we changed the morning carpool and he went to school by himself and a few minutes earlier to give him an opportunity to warm up. That made a huge improvement and he did much better in all classes. I also decided to put him back on supplements. This truly showed that he needs supplements to maintain his high functioning behavior.
New Nutritionist (not good): Last year, in an attempt to find the next missing link, I turned into "food and nutrition" as being the missing link and reached out to a new nutritionist. She checked his hair and told me that he had very elevated copper and that is why he was walking in circles. Gave me a new set of supplements and foods to give Jonathan and told me to take him off chelation and Yasko supplements. She told me that Yasko had the right idea but she uses too many synthetic supplements which is not good for the body in the long run. I removed everything in October, but in December we noticed negative behaviors/regressions. He was always in a bad mood. Always fighting with us and Vanessa. I did not know how he was behaving at school until January. When the Principal told me, we added his Yasko and DAN! supplements back and within 2 weeks, he was back to "normal" (whatever normal means to us - he was happy, engaging and participating). I did notice a change in his behaviour. He was not walking crazy in circles that much. So this Dr. must have been right about the copper. So I kept all the apple sauces and juices out even thought I reintroduced the supplements.

This has been a great year for Jonathan. I sometimes even forget that he has a disability. I talk to him like I speak to his sister. I argue or have a profound conversations with him. In a way it is incredible how far along we have come. I still remember the day I wished he could just say the words "I love you mommy" and meant them. I remember when his DAN! Dr. told me that the major milestone was when he asked the "how" questions. We now discuss how the universe was created and play chess. Amazing!

Improvements this year:

Self-hygine: Jonathan now showers by himself. SUCH AN ACHIEVEMENT!. It started about 2 months ago - right around his birthday. I was joking with him about him being 9 years old. One day, he told me, "I am 9, so I am going to take a shower by myself and don't need your help". I was shocked. He told me 2 days later that he wanted a shampoo and body soap all in one because he was too confused with too many bottles. However, this is outstanding. He has been brushing his teeth by himself for a while already. Also, since his 9th birthday in March, I have not had to clean his behind when he want to the bathroom (number 2). Again, using the 9-year old concept made this breakthrough.
Language: his language and tone have really improved this year. I don't even make an effort anymore to speak to him. He hears me even if I am far away. I mix both Spanish and English and I add complex content to the conversation and he is able to follow me. He needs more vocabulary, but overall, his ability to both understand and respond has improved tremendously this past 8 months.

Areas were we still need to work on:

Social Behavior: he still has to improve greatly in this area. He has very narrow interests making socialization very difficult for him. The older he gets, the harder it is. He is a geek and needs to be with geeks. I get that now. But in life, he needs to be able to adapt. This is a trouble area for us.
Expressive Language: he has improved 200% in this area since last year. But he still needs to improve more. As of 2009, his verbal IQ was 89. I have not tested him but my goal is to make his verbal IQ reach 105 by the time he enters college. He is scheduled to be re-evaluated by Children's Hospital in September. When he speaks, he stutters and he sometimes sounds strange (tone not appropriate, some words he does not pronounce correctly, and sometimes he uses facial expressions that are strange - he turns his head one side and his eyes another)
Humming: he still does this and we keep reminding him. I know it is a way for him to self-regulate. I just wished I knew what else he needs help that requires him to self-regulate.
Hypotonia (low muscle tone): he still has trouble (1) tying his shoes; (2) buttoning his pants; (3) balancing when he puts his underwear or shorts or pants on; (4) does not run
Eating with his mouth open: this drives us CRAZY. He is just not able to remember to chew with his mouth shut. We tell him at least 10 time a day (and we are not with him during the weekdays). He know, but somehow his brain is not able to register long term. He is able do to it when we tell him, but 2 minutes later, he forgot. Very annoying.

Team Wins! Jonathan Influenced

2011-06-13T21:36:00.038-05:00

Jonathan's baseball team won the regional championship this season. What an achievement!. When Jonathan started, all Javier and I could think of was "Will he fit in? Will the coach tell us that he cannot play? Will he learn?" We did not tell the coach that Jonathan was autism. We were scared every time we went to see him practice. He sometimes was absentminded. He ran without energy most of the time and played with the clay instead of paying attention. It drove me crazy. Until the day the coach started screaming at other kids for being absentminded and not paying attention and sent an email to all the parents telling us to feed the kids before practice and games. Then I realized that it wasn't just Jonathan. He was behaving just like the other kids. Only 4 out of the 12 kids really were into the game. However, the coach they had this year was outstanding and was able to keep the kids in check. Out of 12 games, they lost 1 and tied 1. They were the best in every level!

Jonathan earned 3 game balls this season. The coach told us that he was the kid that improved the most (he had never played so we were and still are very proud).

The last baseball game of the season

We were so stressed. Jonathan's team was losing 5 to 2. We all thought that it was the end. Jonathan had a fight with one of the kids in the bullpen because he told the kid that they were losing and the kid screamed at him that they were not. That he had to be positive and the game is not over until it is over. Jonathan was shocked by that reaction and cried. But composed himself.

They were in the bottom of the 5th and last inning. Jonathan was the first to bat. We all thought that Jonathan was going to get punched out. The pitcher kid made 2 strikes and for sure the next one was going to punch him out. But something happened and Jonathan hit the ball that the kid pitched at him. It was good enough to let him run to first base. He ran as fast as he could and celebrated and jumped up and down feeling extremely proud of what he had just done. He set the tone for the rest of the team. He was the last one in the batting line, so the next ones were all the best players. Jonathan stole the second base and when the next kid batted, he ran to third. He ran to home when the following kid hit the next ball. He scored and the smile on his face was priceless!! His team won 6 to 5 in the bottom of the 5th inning. THE GAME IS NOT OVER UNTIL IT IS OVER!!!

New Dr. and Test Results!

2011-05-28T23:24:00.002-05:00

Jonathan has had the same DAN! Dr. since 2004. We love him and he was been great. In an attempt to learn what other biomedical therapies I can use to treat Jonathan's condition, I started investigating visiting other DAN! Drs. I wanted a different opinion. Sometimes it is hard to see what we have in front of us. I reached out to a couple that I found either too hard to visit or extremely expensive.

One of the things that has worked for Jonathan is that I never stop searching for alternatives. I have been fortunate to be surrounded by other parents that have done this stuff before me and have great tips. One parents in the area where I live brought one of the Drs. that she sees to give a presentation for the local parents. Something very impersonal to both help him gain more clients and help us parents learn about new strategies.

When I came to the presentation, I was very impressed by how this Dr. spoke, and how much he knew. Not all DAN! Drs know biomedicine like Yasko or this Dr. do. He also has a child with autism, so he empathizes well. I decided to go see him with Jonathan on March 25th. He saw Jonathan and all his test (a huge binder I have with all the tests I have done since 2004) and looked and me and said "you know he looks like a 1 million dollar child". I told him yes. Then he looked at me and said "but I bet you want a 2 million dollar one" and I said yes. He congratulated me for all the work and for how well he was. He ordered a number of tests and sent me home.

On May 27 we had a follow up meeting over the phone to discuss his test results. The biggest issues he saw were:

His cholesterol was too low (123). He told me to give him Sonic Cholesterol (2 pills twice a day) and test him in 90 days.
His zinc was too low, but his copper looked find. Just continue to give him zinc but try to do it away from any other metals or foods
His mitochondrial was a bit slow. Told me to give him L-carnitine and L-carnosine twice a day.
His oxydative stress is a bit high. Told me to treat it with antioxidants (Vit E and Vit C plus everything else I am giving him and test again in 90 days)
Prescribed Oxitocin since socialization was one of my major concerns. 1 pill twice a day, and
He still has MERCURY. Jeez, that darn thing won't go away after 6 years of chelation. He is not treating this yet.

Baseball, Here I Come

2011-04-10T22:35:00.002-05:00

Today was a very special day. Jonathan earned his first game ball ever for doing a very special play in the game. His team was pitching. They had 2 outs and he was guarding second base. I wasn't there, but his daddy described the play. The other team was a the bat, the kid hit a ball and it went right towards Jonathan. Earlier today we asked him to focus during the game because he noticed that the other 2 games we gets a bit distracted, and boy did he focus. He immediately reacted, caught the ball and threw it to first base with enough accuracy to make sure the kid on the first base could catch it. The kid on first base caught the ball right on time for the 3rd out. Everyone started cheering (including the coach) for a job well done. Jonathan was so proud of himself. At the end of the game, the coach game him the second game ball of the day for a job well done. He said "all plays are good, but some are very important. Today's second ball goes to Jonathan for doing a great job catching the ball and throwing it to first base for the 3rd out". I had tears in my eyes.

The coach later wrote to us: "Folks, 3-0 is a nice start. The team we beat today is a good team. The players should be proud of our early season start. Sitting in first place is a nice feeling." Daddy wrote back to the coach thanking him for recognizing Jonathan's play today, and he wrote to us: "Jonathan deserved the game ball. That was a very nice play he made under a lot of pressure. We will get the hitting going. I am very happy to have Jonathan on the team and enjoy working with him every practice and game."

No words to express my happiness today!

Back on Biomeds

2011-02-26T00:55:00.000-05:00

I stopped giving Jonathan his supplements the first week of December. I had decided to change Drs. last year and took him to a new nutritionist thinking that one of the missing links was related to nutrition. I am thankful because I learned that he has elevated copper in his hair which explains his walking in circle and lack of attention without being hyper (he does not have ADD per the ADD test), but he cannot stay still and the nutritionist explained that that was related to high copper and that the only way to bring it down is to supplement with zinc and remove fructose from his diet. I started him on a grate zinc supplement and removed all fructose, but he continues to walk in circles. So there is more to it than what this nutritionist told me. In addition, the nutritionist told me that I needed to take away most supplements because they are synthetic and the body needs natural supplements from foods and not from pills. It sounds great, but it is very hard to do in practice. She wanted me to put Jonathan on fermented cod liver oil (which I did for 4 months, but he was suffering too much), green grasses (which was impossible to get him to drink), probiotics, zinc and calcium. She took him off everything else and gave me a list of foods to feed him. I don't have time to cook, so this added stress to my already stressful life. I started this new regime in October of 2010, and by December I as burned out. It wasn't working and I was frustrated that I didn't have a good Dr. to help me with the missing link. So I threw the towel and stopped everything.

Unfortunately, removing the recommended Yasko supplements was not the best thing for Jonathan. It affected him negatively. He started to behave badly at home, at school, he started to get very frustrated all the time, lost his temper very easily, could not play with other kids well, could not relate unless the conversation was around video games, was very aloof, etc. Unfortunately, I was unaware of how severe the situation was at school until February 3rd. When I met with his teacher and school director to discuss his progress, they explain how bad his behavior was since the middle of December.

That was the push I need to get back to biomed. I started him back on some supplements on February 4th, particularly probiotics and yucca root to calm down his yeast and ammonia. 2 weeks later, he seems soooo much better. He is getting to school a few minutes early so he can jump for a few minutes before class and that has also helped tremendously. The director told me that he has made great improvement. We still need to work on more, but he is improved in just 2 weeks, so that is encouraging. I decided to change Drs, and found a great one. I am hoping to get an appointment in March. I need to get back to the DAN!/Yasko biomedical world. Out of everything I have tried, this is the best approach for Jonathan.

We enrolled him this year for the first time in Baseball League team and we were terrified that with this change in his behavior he was not going to do well, but thankfully he embraced it well. We are terrified, but we want him to start having more "neurotypical" activities. He had his tryouts this week and did well for his first time. He could not catch the ball, but he hit it pretty the ball. I am sooo proud of him.

We also noticed that his obsessions with video games and the computer were too much and decided that as part of this change (reintroducing biomeds) we would take them completely away to try to detox him. His brain would not stop thinking/dreaming about the video games. It was too much. Nothing else in the world mattered or could make him happy. Whenever we asked him to take a break, he would count the minutes to start again. It was getting insane. We hid away all video game devices and the computer this week and we told him that he needs to earn stickers to play video games during the weekend (10 minutes per sticker). At the beginning of the week it was traumatic. But today he was great. He counted how many stickers he has and decided he is going to play on Sunday (not on Saturday) so not to waste his precious 17 stickers. He has been writing on his journal, he has been reading his Wimpy Kid book (he is on the 5th one), he is doing a Ninjago Lego all by himself, he has been playing pretend with Vanessa, etc. He doesn't seem to be as obsessed with Mario Brothers stories as he used to be. Don't get me wrong, I am sure he is still thinking about his games, but his expression is more relaxed. He is working hard to get stickers and he is starting to value them. I told him that he could chose between the Wii, the DSi, the iPod Touch and the computer and he could use the time of his stickers for one or all of them as long as he didn't go over the time (which we will monitor closely) and he was very calm and rational and said that this weekend he will use them all with the Wii. Baby steps until he is able to just play for a while without making video games the center of his world. I was starting to get really concerned that he was missing out on a lot of things by not being able to focus on anything other than those darn video games. They are like a drug.

A Bit of Regression

2010-12-12T19:31:00.000-05:00

Jonathan is definitely a kid that needs supplements to maintain a higher level of functionality. I have been a bit lazy the past few weeks and have not been good about giving him his supplements. In addition, I tried going to a new nutritionist that told me that all the supplements I was giving were not good and made me change what I was giving Jonathan, but I don't that her new approach works for us. So he has been missing the multi-vitamins and other pills I used to give him.

This week he has been very absent-minded and his dad even got very upset with him on Friday as he could not follow directions at all. Daddy asked me to please give him his pills again because the difference is so noticeable that it is actually frustrating.

Celebrating that Daddy Finished his Master's

2010-12-09T21:14:00.000-05:00

Daddy finished his last class of his master's degree yesterday after 2.5 years of taking classes in the evening. So we decided to go to a restaurant today to celebrate. We went to a japanese restaurant. We had taken Jonathan to this restaurant before and he had always been very affraid of the fire the chefs make when cooking at our table. But tonight he was really excited. He couldn't wait. He loved the wonton soup. I was shocked. And when the chef came, he engaged with him from the beginning. If only had he been a bit less loud, it would have been perfect. He cannot regulate his tone of voice very well. He kept asking the chef what he was doing, he loved the fire and asked for more and he was very happy.

Summer and Fall 2010 Recap

2010-12-07T22:05:00.000-05:00

Sorry that I have been absent for so long. It turns out that I got sick. I had been suffering from intense stomach pain for quite some time and on July 26 I was diagnosed with Gastritis and Barrett's Esophagus (a pre-cancerous condition), which forced me to take a break from Jonathan's recovery and focus on mine.

After 4 months of changing my diet, adding a lot of supplements, medication, exercise, etc., the second endoscopy does not show traces of Barrett's. It is strange as this is a non-reversible disease. So I don't know if one the lab gave a false positive result or if what I had was so microscopic that all the aggressive interventions helped my body regenerate. In any case, I feel better, healthier and I want to go back to Jonathan. With my new lifestyle, I should be okay. They will do another endoscopy on 2 years. However, I do feel a side effect of the acid-reflux medicine. I feel more depressed than normal. I don't normally suffer from depression, so I am concerned about this because it is interfering with my daily tasks. But after researching I believe that malnutrition that can come from these medications can lower serotonin and dopamine levels. I checked with my nutritionist and she gave a few supplements to take to help me with these. We'll see.

With regards to Jonathan, not much has changed since July. Jonathan had a nice summer break. He attended various summer camps with his sister and learned a lot of new things. He is now in 3rd grade. He is back to the private school he attended last year. He is doing very well academically, but he is having some social issues with some of the kids there. He is now fairly conversational and he tells me about it. He is unhappy because he gets annoyed and either gets pushed around or yelled at or he does it to the kid that is annoying him. It is a lose-lose situation. I speak to him every night and he cries sometimes because he feels that he cannot control his emotions sometimes. He also has accidents and hits other kids by mistake and those kids get very upset with him and either yell at him or call him names. And he is really bad about defending himself, so he screams back and cries. This recovery mountain never ends!

To summarize the last few months:

CHELATION: Jonathan completed 67 cycles of DMSA/ALA and finished on 7/19/2010. The dose was 45mg of each chelator every 3 hours for a total of 22 times between Friday afternoons and Monday mornings. For 1.5 years, we didn't sleep more than 3 hours straight hours every weekend. That was rough but necessary.
NUTRITION: I found a new nutritionist who did a new hair analysis and told me that his copper was extremely high. Apparently copper can be the reason for him walking around. Although he is not hyperactive, he cannot stop moving or walking in circles at times and she indicated that that is the copper. The best way to get rid of it is by adding zinc and eliminating fructose. The latter has been extremely hard. Everything has fructose.
NEUROFEEDBACK: He started neurofeedback again late August. He has completed 22 sessions and on session 20, the Dr. did another TOVA test. She indicated that he no longer has any traces of ADD/ADHD per TOVA. But there is still a gap of more than 5 points between the 4 indicators, so she recommends that we keep going. It is just really expensive and we are running low in our savings. So I am going to finish the next 20 and take a break.

	4/11/2008	3/14/2009	11/20/2010
Response Time Variability	88	86	95
Response Time	106	78	87
Impulsivity	87	113	107
Inattention	90	90	102

Difference b/t lowest and highest	19	35	20

Normal range is 85 to 115. Scores above 115 are better than average, and scores below 85 are less than average.

SUPPLEMENTS: I removed a number of supplements that Yasko recommended per the nutritionists recommendation. But she wanted me to change his diet, add different foods, remove other foods and start giving him green grass mixed up with chocolate milk. Needless to say that given my condition, I didn't do that. And I believe that the lack of some of the multivitamins I was giving him is causing his serotonin and dopamine levels to drop. In addition, his mood is very volatile. He cries a lot for very small reasons. I am confused about what to do here. I don't have time or energy for what is needed with regards to the nutritional changes. I need to figure this one out soon.

I will start logging if not daily, at a minimum twice a week as I am seeing some subtle changes and school related issues that I want to track. In addition, we have not visited his DAN! Dr. in a while. I am going to make an appointment soon as I feel I need to go back to what I had been doing all these years. We are very close and I got side-tracked.

Wants to Be Tech Support - 66 DMSA/ALA Rounds

2010-07-10T23:39:00.017-05:00

Jonathan finished his school 2 1/2 weeks ago. He already started summer camp and has had 2 sessions. Vanessa just finished kindergarten and is old enough to start going to the same summer camp as Jonathan and they are very excited to be together. They fight ALL THE TIME, but they love being together.

Summer Camp

The first week, Jonathan and Vanessa went to a Farm camp. They both loved it. However, I got concerned when on day 4 I asked Jonathan how he was doing and he told me that there was a kid in camp that was hitting him all the time. I told him that he had to report it. His dad told him to hit him back next time. On the last day I asked him how the kid behaved and he told me that the kid did not bother him so he didn't have the opportunity to report him. However, both dad and I are concerned that Jonathan is too nice and does not know how to defend himself. It is hard to teach that.

The second week, summer camp was at their tae kwon do place. They loved it and got along with everyone. Today, during their TKD class, his teacher told me that she was shocked about his interaction with the team. He normally is very quiet during class, but during camp he was extroverted and funny and was great during a pretend drama game. She told me that they had spoken among the teachers about how smart Jonathan is and that I should look into putting him in drama school because he was great. I started talking about his strength and physical weakness and told her that I was very proud of Jonathan for making it to bo-black belt but I didn't think he was ready for black belt yet due to his poor coordination and low muscle tone. Although she agreed with my assessment, she looked at me like there was something she didn't know. Noticing her reaction asked if the previous Master (who had left 7 months ago due to a broken foot) had told her about Jonathan's condition. She said no. When I told her that he has autism, she was on denial. She kept telling me "no way, impossible". She said that the previous master had told her about 3 other kids, but never mentioned Jonathan and she is glad that he didn't because she treated him as any other kid, pushed him like she pushed the other kids and didn't make any exceptions with him. So he is where he is because he deserves it, not because he has a disability. She told me that she agreed on the black belt, just didn't want to tell me yet and told me she will work with him so he can take and pass his test next May. I will work with him also on physical strength and coordination.

He wants to be Technical Support when he grows up

Jonathan is turning into a techy guru. He learned how to configure all his toys (i.e., DSi and iTouch) to connect to a wifi network whenever he can. We went to a restaurant 2 weeks ago that had free wifi, but his DSi did not see the broadcasted name. He took his grandpa iPhone, looked inside the settings, and figured out what IP address the iPhone was connected to, typed in that IP address into his DSi network settings and got Internet access. My jaw was down on the floor. I told his dad that we need to be careful because right now it is cute, but when he is 15 years old, if he does something illegal, we are going to have the FEDs knocking on our doors. 3 weeks ago a friend of mine asked me during a birthday pary if I could help her with her iPhone problems and I told her that I had no idea but if she asked Jonathan, he could help her. And not only did he fix her iPhone issues, but gave her an explaination of what happened and told her to call him any time she needed help. Added him in her contact's (including a picture of him) and then came to me and told me that he wanted to be in the Apple technical support group when he grow up. The kid is so smart it is crazy.

4 days ago, his iTouch's speakers stopped working. He told his dad to schedule an appointment with Apple tech support. We went yesterday and he told me that he wanted to be the one to explain the problem and talk to the technician. And he did. The lady technician was very pleasant and worked with Jonathan. I was so proud. It was wonderful to see him so "independent". He got his iTouch replaced and was very happy.

He decided over a month ago that when he grows up, he is going to be an Apple Technical Support technician. I told him that that was fine, but before that, he needs to finish college. He agreed. I am planting my tiny seeds right now before he starts thinking too much about grown-up careers.

Observations

I met with his school teacher a week before the school finished. They had great things to say about him. Academically he is very strong and passed to 3rd grade with no issues. But they also had some concerns which I want to log so I can reference down the road. In addition, I have been analyzing him lately and comparing him to how he was 6 months, 1 and 2 years ago, and a couple of improvements are actually quite dramatic. I take it for granted, but he has had a great year.

Improvements:

Expressive language: Jonathan is pretty conversational when he knows the topic or is interested in learning something. Since I first met his DAN! Dr. in November 2004, my number one concern was Jonathan's expressive language. We have worked very hard during the passed 6 years in this area. Now, I can have a normal conversation with my son about stuff I want to communicate with him or if he wants to communicate with me. His comprehension and vocabulary have improved dramatically. A friend of ours with a child on the spectrum told me last week that she also noticed it right away. She had not seen him in over 2 month, and even since then he has improved. For me, what I see as a major improvement is how much he now understands, rather than how much he speaks. We are not done here because his vocabulary and topics are still very narrow (i.e., technology), but he can now talk my ear off and at times I have found myself asking him to be quite. Something that I never thought before I would ever do. I am trying to expose him to many experiences so he can learn from them and relate them to other things in the future. His brain is like a sponge now, and I am taking advantage of it. Also, his intonation is has improved dramatically. He still has a bit of a flow issue when he speaks. Twice already he has been told that he speaks funny (although I don't know if it is because of his flow/intonation or his narrow topics of interests).

Issues to continue to address:

Offensive behavior when frustrated: Jonathan tends to get frustrated easily. At school, he is verbally mean to his classmates when he gets frustrated. He is even hurtful without knowing. When his teachers tell him, he get very sensitive and sad that he did such thing. However, while he is reacting, he cannot seem to be able to control it. His school director mentioned that she was going to record him and play it back to him so we could see. They didn't have enough time before school ended, so I am going to try to do that myself during the summer. He needs to learn how to channel his emotions so he can express his frustration in a more civilized way.
Low coordination / muscle tone: Jonathan still has trouble controlling his body correctly. His dad and I noticed yesterday that he is clumsy completing all personal hygiene chores such as brushing teeth, cleaning when going to the bathroom, bathing (shampoo, soap, etc.), or other tasks such as cutting his food, riding a bike, sparring at tae kwon do, chewing with his mouth close, etc. I am perplexed and do not know what therapy would be best. We stopped OT due to insurance issues and have been on a waiting list for 2 years. Time to call them back.
Language: although he has improved dramatically, this still is a huge reason why he is still on the spectrum. Both expressive and receptive.
Tone: he still screams when he speaks. He has trouble controlling this.
Limited interests: I already documented this in another blog back in January. Although he is more social, his limited interests for only technology stuff is causing a problem when he is with other kids his age. He copes, but it is hard.

Nutrition Is Our Next Step

2010-06-16T12:48:00.000-05:00

For the longest time, I have been battling with Jonathan's health and developmental delays. I concentrated for the past 6 years on biomedical and physical interventions, but I have neglected the nutrition part. I put him on a gluten free dairy free diet (GF/CF) for 3 years, then took him off and recently put him back on it. However, I never paid close attention to what he was getting in his body. The work surrounding getting therapies in line, the GF/CF diet, the supplements and other interventions has been so overwhelming that I didn't focus on a "nutritious" diet. I saw a nutritionist at the beginning of this journey, but she focused only on supplements. So quality of food has never been my forte.

However, this stress is paying its toll on me. I feel sick and tired all the time. So in trying to find a way to get my stomach and overall body in better shape, I ran it some interesting people who have opened my eyes to another dimension.

I knew that Cod Liver Oil was very good for the kids. The brain is fat and needs fat to operate optimally. I also knew that EPA was important for inflammation and I have been giving Jonathan those from different manufacturers for a number of years. What I didn't know was that the best type is the fermented type. I recently ordered a new CLO from Green Pastures. Jonathan likes it and Vanessa hates it. But I was told it is the best quality out there.

We have been battling Jonathan's weight for years. He is not obese, but he is heavy for his age (90 lbs). And I believe that he gets tired so quickly because he is heavy. I was convinced it is a thyroid problem. However, after seeing this chiropractor/nutritionist, I am not so convinced anymore. He may be suffering from a bit of Adrenal Fatigue, which causes his thyroid to act up. Or it could be something else.

I scheduled an appointment with this doctor last week, and we talked about a plan. First, they are going to do a hair analysis on both Jonathan and me. We went yesterday and they took the sample. After we get the results (3 weeks), we are going to make an appointment to review the results along with the intake forms. We need to provide a Candida self-test result as well as a diet diary log that documents what we eat during 1 week.

I am excited and concerned at the same time. They are probably going to tell me that he has to give up all flours (including the gluten free ones) and I don't know how I am going to do that :) But I am willing to try things that are reasonable. I am giving them the benefit of the doubt because they come highly recommended by another Mom I know, and during my first office visit, I mentioned that I don't have a gallbladder and I was told to take Cholacol II (1 pill 15 minutes before each meal). It has turned out to be miraculous for my digestion issues. I am sure I have other issues to attack, but not feeling sick and bloated after eating is pretty priceless.

Putting Things in Perspective

2010-05-24T22:39:00.002-05:00

I spend the evenings with the kids, fixing dinner, going to Tae Kwon Do (on Mondays), bathing, sometimes doing homework, sometimes out shopping. We spend the weekends together going to places, parties, movies, parks, etc. These past 2 weeks, I have been paying more attention to how Jonathan interacts with others, how he talks to others and me, etc. And I have to say that I give thanks to God because he is a very engaging kid, with a strong personality, intelligent and sweet. We argue and after a bit I actually laugh internally thinking that I am happy I am arguing with my son. Today for instance, we were in the car coming back from Tae Kwon Do, and I heard him playing with his DS. We told him no DS during the week, but he sneaks it from time to time. I told him "Jonathan, please turn off your DS". After a very brief pause, he said "no DS for the rest of the day?" and I said "that's right. You know we don't want you to play with electronics until the weekends". He pauses and says "ok mom, what about I play with it until we get home and then I turn it off?" Clever I thought, but I didn't want him to win this, so I said "if you do that, I won't pay you for today's homework". He said "Oh no mom, here, it is off". I pay him $2 a day if he completes his homework before I get home. This interaction was not there last year. He speaks more fluently. But he still has a strange tone, and he doesn't have a large variety of topics to discuss. So that prevents him from fitting in with other kids his age.

So if I have to put things in perspective, he is not regressing to where he was before. But because of his limitations, his social skills are not developing as fast as he is growing and I can't help but feel worried that he is going to suffer in life because people are cruel. The other physical regressions are starting to settle a bit. I started him back on the homeopathic drops and he is not scratching his throat as much anymore. I heard him humming today, but it has actually gotten better. He is more alert, perhaps because of the gluten free diet. So I see a bit of progress.

Dilemma: He is not severe enough to be in the world of autism alone, and he is not fully recovered to be in the mainstreamed world alone. Therefore, he is the middle which is starting to make things hard for him. He is starting to get teased and he gets very offended. He is very sensitive. I want to protect him, but there is so much I can do. I talk to him and tell him to defend himself, but defending from being teased is hard to teach, if not impossible. It should be an innate reaction, a "reflex" which he might be lacking or having trouble using. But understanding what the core issues are helps me focus on what I need to seek to help me improve.

Unexplicable Regression

2010-05-13T22:09:00.000-05:00

The past month has been very frustrating as Jonathan started to progressively regress socially and in some aspects physically. I don't know what it is. But today I felt really bad because during shower time he told me that some kids in McDonald's made fun of his speech. They told him that he speaks funny and laughed at him and he asked me if that was true. I told him no, but the truth is that he does speak differently.

I have not been as aggressive in the past year as I was before and I am afraid that he has plateaued and in some cases regressed. I am desperate again, looking for other things to do, reading books again, thinking about attending conferences. I am desperate. As he is growing, the things that I was scared of are starting to take place. How do I protect him from what his future is going to be? A future where mainstreamed kids, teenagers and young adults won't be able to realize that he has an issue and instead are going to make his life miserable as they make fun of him and reject him. How do I make things a bit better so his future is not so painful?

I watched "The Horse Boy" the other night and all of a sudden I realized that one of the things I should be doing with Jonathan is taking him to new places that force him to pay attention, learn, survive and mature. It is hard for me being a full-time professional. But I am going to try to find the time, at least during the weekends, to go to new adventures. It would be great to go to a place like Mongolia for a month where the environment is completely foreign, where the food has different good and bad bacteria to populate the digestive system and add to the immune system, but we cannot afford it (time and money-wise). Therefore, I need to find my own ways.

Regressions observed:

Stims: he is humming again. After all these months (about 6 I think) the humming is back.
Tics: he is scratching his throat again. I thought it was the gluten, but he is doing it (not as often as before) even when he eats gluten free foods. The homeopathic drops are not working as they did in the past. Perhaps they worked in combination with a different supplement, but I don't know which one.
Attention issues / distractions: he is totally distracted. This is one of the worse issues we are dealing with. I have been telling him for over a month, every day, to put his backpack in the back of the laundry room when he gets home from school, but it does not stick. I have to tell him twice or three times everything. It seems like he is not listening at times. I thought it was the gluten, but even with gluten free diet, this is still very evident.
Gluten issues: I noticed how he went from a semi-alert kid to totally drugged and in a fog in minutes after eating 2 small slices of pizza. It was scary to watch. I put him on the gluten free diet and told him what that was so he helps me stay on it.
Weight issues: he is 93 lbs and he is 8. There is something very wrong. He eats lots of carbs, but in my mind not enough to be so heavy. Especially with all the exercise he gets at school (he is going to a private school that focuses on movement before each lesson) and tae kwon do 3 times a week. I removed most of the high carbs from his diet (sugars and breads) and I hope that in 3 months he loses at least 10 lbs. I am also investigating a potential pituitary or thyroid problem with an endocrinologist. I need to call tomorrow and set the appointment.
Sensory issues: he is lately overly sensitive to clothes tags and foods textures.
OCD: this is just never going away. I am frustrated about it. He has absolutely no interest in anything other than his electronic toys. I want to burn them all.
Social skills: he is not fitting in with mainstream kids anymore. He is having a very hard time playing with our friends' kids. The last two times, they ran away from him and he came to me crying telling me that they ran away purposely. That they told him they didn't want to play with him. He is actually quite social and cares about what others think of him. He is simply different and the other kids are now starting to reject him. It breaks my heart.
Cannot control emotions well: he cries for everything instead of coming to us to talk about what he is not happy with. He also tends to boss around and even yell at people but when people respond back, he acts as if he is scared that we are going to beat him up and then cries to a point that is hard to console.

I decided to go see another DAN! Dr. to help me diagnose issues that I can work on. I need time and money to run all the tests again and figure out what is going on. Perhaps some other bug got into his body. It could be a huge yeast overgrowth coupled with bacteria and other issues. I am venting. But I need to let all this out of my chest. I need time and money.

It Seems Like So Long Ago

2010-02-03T23:59:00.001-05:00

I was reading old emails and came across one from the National Autism Association promoting a new plan for assistance, research and education support. They had a very pretty video (Chase the Hope for Autism) and in it, I saw Jonathan's little face shown for just 1 second. That was very unexpected. It made my heart jump. I had sent the NAA a picture of Jonathan covering his ears 3+ years ago which made it to one of their calendars. Back then, his autism was very evident. He covered his ears ALL THE TIME when he was anxious or when the sounds were too loud for him to bear. Almost 4 years later, all I have is this picture and tons of memories. But I don't remember the last time he covered his ears. It was a while ago. Which shows how much progress has made. He was 4 in this picture. He is about to turn 8 soon, and about 85% recovered. More research is needed. Recovery is possible.

9 months - 42 rounds of DMSA/ALA

2010-01-28T11:35:00.005-05:00

It has been a very long time since I last wrote. I had mixed feelings about what to post since I was not seeing a lot of progress. But since October, I can see that I have seen enough improvements to post another log.

Jonathan started a new private school last September. They focus on tons of moments before each academic class, they do additional therapies like speech, tomatis, brain exercises, OT, etc., and they do fun things like Tae Kwon Do, swimming, fun social science classes, etc. Jonathan really loves it there. I can see that it has been a very good experience for him with regards to this academics, his vocabulary, his exposure to different hands-on activities, and the love he receives is priceless. He adores his teachers.

With regards to his eccentricities, Jonathan's humming is completely gone. I don't know when it happened, but I noticed 2 days ago that he stopped humming a while ago. He started singing a song in the car and I almost said "no humming" as I normally do since he as 3 years old, and suddenly I noticed that he was not humming. I turned and asked him "when did you stop humming?" and he looked right into my eyes and said "I don't know". It was kind of strange.

Same with the scratch in his throat - which seemed like a tic in his brain. I posted last time that the homeopathic drops that I started him on late summer had stopped the scratch. And since then, he probably has scratched his throat 3 times in the last 4 months.

The items I am very concerned about are his social skills, processing, attention and language.

Social: Jonathan is actually a very social kid. He loves to be with people, interact with them and play. The problem is that his interests are not of a typical 7 year old and hence he doesn't fit in with other kids and sometimes with adults. He gets bullied a lot when around kids that are not into technology like he is. But his interests are more than just video games, he is into emails, contacts and different applications and how the work. So it creates a challenge and frustration because he feels left out. He is a very sensitive kid. After a lot of frustration on our part (his dad and me), and talking to his doctor, we came to terms with the fact that Jonathan needs a different social setting to succeed. His doctor said to me "Forget about the word autism because that is not the problem here. The problem is that he is a very left-brain child and needs to socialize with kids like him - kids that like technology and that he can relate to. Not with with disabilities, but kids with the same interests. He will not be the kid to play with action figures and dinosaurs, so find the right setting for him and he will thrive." He is obsessive compulsive when it comes to electronics, but he uses them to interact and it is easier for him to be part of a social group under those conditions than with kids that play Batman and Spiderman. So we are on a quest to finding groups where he will be happy.
Processing: This is definitely the biggest of all his problems. It is at a minimum auditory and visual. It is also executive functioning, which plays a huge role in his attention problems. Sometimes he does not understand what he hears, or he does not see stuff in front of him. Sometimes he cannot express his thoughts verbally. I have noticed that he can express himself better when he writes an email or a letter than when he talks to us. He has made huge progress on this area. But it is still an issue. Perhaps one that will follow him the rest of his life and he will need to learn how to live with it and adapt his life accordingly.
Attention: he does not have the typical ADD symptoms, but he has attention problems that prevent him from comprehending books when reading, or understanding conversations. He can remember things that other kids with ADD cannot remember, but when he sits down to read a fantasy story, he cannot follow up well. Before the page is over, he already forgot the topic. I am working with him, but this is a hard one. If he is interested in the topic, he remembers it well.
Language: his receptive language continues to improve. He has little problem understanding a question or short conversation as long as he understands all the words. Long conversations are a bit more challenging when the vocabulary and situation is more complex unless it relates to technology or science. Expressive language is still an issue. I want to have his verbal IQ retested again this August to see if it has gone up from 82. His intonation is much better. He does not sound like a robot anymore. But he needs to improve a bit because he has trouble pronouncing some of the words. His tone (volume-wise) is better. He still has a high volume tone when he speaks, but better than 6 months ago.

DAN! Dr Visit

We had a meeting with his DAN! doctor on Tuesday. It went really well and was refreshing. We did some blood work before the visit and the results were provided to me during the visit. His liver functions are a bit high but the Dr. believes it is because he is growing. But what caught my attention was that his TSH (thyroid function) is normal high and he wants to look into this. He gave me a prescription drug (very low dosage) to lower this value and that might help him lose some weight (he is 20 lbs overweight for his age - 89 lbs and he is 7, almost 8), and it might help with his energy level (he is a bit lazy when doing things but mitochondrial disorder has been ruled out). I am going to schedule a meeting with pediatrician to do more thyroid and other glands tests.

6 months - 30 DMSA/ALA rounds

2009-10-30T20:10:00.004-05:00

It has been 6 months since we started the Andy Cutler chelation protocol. Jonathan had a rough start, particularly with the intestinal yeast. But he has really adapted to it. I eliminated the intestinal yeast with a product called In-Liven. He has perfectly formed stools now and he has no other adverse reaction.

Sick for the first time in almost 2 years

For the first time in almost 2 years, Jonathan got very sick. Vanessa caught a virus from school on Monday and came home with a fever. This turned into a very high fever with a dry cough that evening and all day Tuesday. Jonathan seemed fine. I took Vanessa to the Dr's worrying that it could be H1N1, but the Dr. said that she was fine. Just a virus and that I had to keep her fever down. He expected her fever to last 24 to 32 hours. On Wednesday she was all recovered. But Jonathan came down with the same virus. It hit Jonathan harder than Vanessa. He developed an extremely high fever of 103.9 almost the entire night. I took him to the Dr's on Thursday and he came to the same conclusion. A virus and I needed to keep his fever down which proved to be challenging. Jonathan had very had fever the second night and the second day. We all got pretty scared at some point when it reached 104.5 and the Motrin was not working. I was at work and my dad bathed him with cool water and put some ice on his head. I don't recall Jonathan having such high fever since he was a baby when he had pneumonia. After 48 hours, his fever started to go down. But it was very scary. He also had a bad cough that stated to get better after 48 hours.

New School

Jonathan started in a new private school this year. This school was built for kids with certain types of learning challenges such as anxiety, ADD, and high functioning autism to mention a few. The children-teacher ratio is small so that the teachers can focus on the children. They also offer a number of therapies that we did with Jonathan via private sessions, so we don't have to do them after hours any more. We love it. Jonathan loves this new school, he is doing great and he is learning a lot.

General Observations

In the past few months, Jonathan has continued to improve. I sometimes sit back and reflect on things that he says or behaviors and realize how far he has come. The combination of the neurofeedback, the Andy Cutler chelation protocol and the new school has made a huge impact in his progress the past 6 months.

His brain continues to "wake up". And I don't notice it so much any more because it is second nature now. But I notice it more when other people point it out. When I took him to the Dr's office yesterday, his former pediatrician saw him. Jonathan doesn't like him as much as his regular Dr. because he is a bit rougher. Vanessa doesn't like him much either. The nurse took us in and asked what was going on. I explained and Jonathan added some comments and then he asked which Dr. was going to see him. The nurse told him that is was Dr. M. Jonathan's eyes opened up and he turned to me and said in low voice "I don't like Dr. M Mom. He is rough. Is he going to do the stick in the mouth?" and I said that I knew he didn't like him, but he needed to be brave. He stared at me and I said "be good and do what the Dr. tells you so it doesn't hurt. It hurts when you fight him". And he said "ok mom". When the Dr. came in the room and asked Jonathan what happened (since we had been there 2 days before with Vanessa), Jonathan had a fairly normal conversation with the Dr., explaining that he was sick and that at 2am he had 103 fever and he missed school because he was sick, etc. The Dr. checked him thoroughly and when done, Jonathan turned to me and said "I did it mom. I was brave". And I cheered him and explained to the Dr. that he didn't like the stick and that I had asked him to be brave. The Dr. asked him a few other questions and told Jonathan that he had a "big brain" like his mom, and Jonathan said "yeap, I know. Humongous". The Dr. laughed, turned and said to me "Mom, you made my day. It has been a rough day, but witnessing such miraculous progress made my day. You have done a great job with him. This is fantastic. You made my day. This is just a virus like the one Vanessa had. He'll be fine by Friday. Happy Halloween". My eyes got tearful and I thanked him. I see that there is still so much work to do, but I really appreciate outside feedback to keep me going.

He continues to be obsessed with electronics, now into listening to music and creating contacts in my iPod and sending emails to friends, family and even his school principal. We are working on a reward system so he starts earning electronic playing time because it is becoming uncontrollable.

Despite the electronics obsessions, I am very happy that he finally has gotten into Lego's. I always, since he was a baby, wanted him to play with Lego's and he never liked it. But something changed in the past few weeks. He likes the Lego's with the books so he can follow instructions. He does a very nice job completing them. It is now turning into an expensive hobby.

My concerns continue to be:

Expressive Language: he still says things that are off, or not socially correct and sounds flat sometimes. He is also very loud. He simply does not speak like other neurotypical kids his age. There are times when he sounds neurotypical, but not 100% of the time. My personal goal is to see his verbal IQ reach 95 by the time he goes to college. With a non-verbal IQ of a genius, he needs to be able to articulate better as he grows up so he can be part of society and become independent by the time he goes to college. But I now realize how hard reaching this goal is. Just before Kindergarden, his verbal IQ was 77. Before first grade, it was 79. And before second grade it was 80. And it is shocking to me because the overall improvements each year have been dramatically, but his expressive language continues to improve slowly compared to other areas of his autism. And his expressive language continues to be my main focus.
Social Adaptability: he has a serious trouble fitting in with other children his age. If the situation does not involve electronics, he does not play well. Sometimes he becomes preoccupied and rigid and tells the kids not to break rules. If the game is fun, he will play for a while until something makes him get upset and then he turns away. This is another one of the areas I am worried about. As he grows older, he needs to learn to adapt more.
Playing Skills: Jonathan simply won't play with toys other kids his age like to play with. He doesn't have the initiative to imagine situations and play with action figures, cars, dinosaurs, etc. Despite all the play therapies he has gone through, despite Vanessa's attempts, he simply cannot on his own pick up a toy and play with it. If he doesn't have an electronic toy, or a board game to play with, or Vanessa to guide him, he will simply lay on the couch and suck his thumb. Because he is not able to do this, it affects his playing skills with other kids, which affects his social adaptability.

Overall I am very pleased with the accomplishments. He is more engaged and more social these days. He is doing very well at school, so that part I don't have to worry about. And he is a really good kid, very sweet and with great intentions.

18 Rouds of DMSA/ALA

2009-08-11T21:09:00.003-05:00

It has been a while since I last wrote an update on this blog. For a while I didn't see much difference in Jonathan. And my current job is so incredibly demanding, that I rarely have any time lately to search the web or update this blog. However, I want to note some nice improvements so I can keep a record of them.

He starts a new school this year. It is a private school that will incorporate most of the therapies that he normally obtains privately in his daily routine. We are extremely excited about it and I know we are going to see great improvements this coming school year.

Here are some areas that I have seen major improvements and wanted to highlight:

Haircut Mastered: Last weekend we took the kids to get a haircut. I have to note that for the first time EVER Jonathan did not move an inch. The lady cut his hair and when she used the clippers, he simply said "when you cut my hair behind the ears it tickles my back a little bit", but he didn't move. He was GREAT!!!!!! If you have followed this blog for the past 2 years, you'll know that this has been one of areas that I use to compare his sensory integration issues and recovery. Even with high yeast (his yeast is out of control) he did not move. Big plus here!
Passed Swimming Test in Public Pool: This past weekend, we took the kids to the pool at his grandmother's community and the lifeguard told us that the kids could not go passed 3 feet by themselves unless they took a swimming test. At first I was worried. Jonathan has been taking swimming lessons since last October, but he repeated Level 2 and he is going to repeat Level 3 because unfortunately he is not very athletic and has trouble with the forms. Vanessa however is turning out to be a pretty athletic kid and she is going quite well in her swimming lessons. However, Jonathan decided on his own to take the test, and Vanessa decided not to do it. Jonathan had to go from one end of the pool in the deep area to the other end and back and then stand in the middle moving his legs without swimming for 30 seconds. I watched nervous that he was going to get tired in the middle of the pool and sink. But he didn't. My heart almost came out of my chest when the lifeguard told us that he passed the test. I was so worried that I didn't even record it. He was so proud of himself that he went to the deep side after that several times. I am very proud of him. This is a great great accomplishment.
Coping Very Well with Summer Camps: We enrolled him in regular summer camps under the local community center. They have several types of classes. We selected mostly sports camps to help him lose weight and keep him moving. At the beginning of each week, I turn in all the forms. In one of the forms I disclose that the has Austim, but I don't tell the teachers the first day. By the end of the week, Jonathan is acquaintance with all the kids and first with 1 or 2, and with the teachers in his group. He has enjoyed all the camps. His favorite has been the Gym and Dance camp and wanted to be sent back there. They didn't offer any more sessions, but I will keep in mind for next year. Check out the video below. He is the only boy and loved it!!!

Board Games: He started loving playing board games last year. He is either an electronics kind of kid or board games. He is not a "doll or monster or lego" kind of kid. His grandmother got him playing a couple of years ago and played with him every time she could. But all of a sudden, in the past few months, Jonathan developed a passion for Monopoly. He is learning the rules about money, property, trading, taking risks, etc., so well that he beats us. Sometimes he wins, sometimes he loses. And he takes each time very well. He loves to talk about it. He loves to beat us and laughs at us in a "ha, gotcha!" kind of way. Although it has turned into an obsession and we are unsuccessfully trying to get him to play other games, I do believe that this is a very positive because it shows him rules of life, engages him with a group, teaches him strategy, etc. His math skills are also improving dramatically.

I am sure there are other areas that I am missing, but these are the ones that come to my mind at the moment. He is having some trouble with the chelation because has produced a great deal of yeast. But overall, I am very very happy with the DMSA/ALA combination and I wish I had done it 4 years ago. Better late than never. It is opening a new door, cleaning up some residual stuff that prevents him from continuing to recover. I ordered a new probiotic and will test his liver functions to check if I can get him back on diflucan. He is ultra sensitive and whenever we tell him not to do something, he cried. That is typical of high yeast in him.

Overall, he is doing great!

9 Rounds of DMSA/ALA

2009-06-08T22:38:00.003-05:00

We completed 9 rounds of the DMSA/ALA quelation this past weekend. We all have the schedule down pretty well now (including Jonathan). He is reacting well. I do believe his candida has increased. But he has not regressed, nor has his OCD increased.

Observed improvements:

Expressive language: His language has really improved in the past month. But I don't know if it is the left-over reaction from the neurofeedback or the chelation. His reading comprehension has improved. He gets what he reads much better.
Memory: both his short-term memory and long-term memory of experiences he lives have improved dramatically. He is retaining experiences better and can remember them. He really does not recall much of anything that he lived the first 6.5 years of his life.
Social interactions: His social skills are also improving. We went to a sports store this weekend to get him swimming goggles and he saw a ball he wanted to buy. After much convincing (I didn't want to buy it, but he begged), I gave him a $10 bill and he paid for it. He started a bit weird with the cashier telling him that he had "magic money" but the cashier was very nice and played along. After he paid, the cashier gave him the ball back and Jonathan said "thank you man!" and the guy responded "your welcome bro!". That was incredible. He is really starting to pick up on idiomatic expressions. That is very exciting to me. He also loves to order his own food at restaurants. He is even funny sometimes.
Play skills: his pretend play is resuscitating. He is playing a lot with Vanessa lately. And he even likes to carry a dalmatian puppy stuffed animal with him around when Vanessa has hers.
Empathy: he is more affectionate lately and when he hurts someone, he is now saying "I am sorry" and really meaning it. So I believe this area is improving too.
Asking questions: he is asking a lot more questions lately. We went to the movies to see Night at the Museum and he asked a lot of questions. Then, when Roosevelt came up, he said "Mommy, when you were my age, who was the president of the United States"? Well, I could not answer that. I really don't know my American history that well, but I it impressed me that he asked me such question.
Humming: he is humming 1/3 less the time that he used to. I am not sure what helped with this. But it is great. His humming drives me crazy.

Areas of concern:

Strange movements: I did notice today that he was making strange hand movements, but nothing too annoying.
Stims: besides the humming, he now talks to himself more than before. That is driving me crazy. And he is continuing to walk with the tip of his toes a lot.
Weather Awareness: this question keeps coming up in assessments and I keep noticing that Jonathan does not get it. He does not pay attention to weather it is cold or hot to select the appropriate clothes to wear. He has swimming lessons on Sunday. I told him to change and he came back with his swimsuit and a long sleeve shirt.
Language: this is still not age appropriate, but he is really making nice progress here.
Voice: he is still loud. His voice is not as flat as it used to be, but it is still a bit flat and robotic.
Too sentimental: he cries whenever I say no, or if I get upset for something, or if he doesn't get what he wants. And whenever something does not go his way, he is very dramatic and says "I will NEVER ..."
Low muscle tone: I continue to struggle with his low muscle tone. He cannot sparrow at Tae Kwon Do (at all). He can't kick, punch, etc. He is a strong kid, but cannot control his muscles well. He can do the form very well, but cannot sparrow. He is having difficulties with riding the bike. The bigger he gets, the worse it is because he is heavier. One of the things that will help him is lose weight.
Low metabolism: he is overweight, but he does not each lots of sweets. He eats lots, but not so much to be a good 10 lbs overweight. I enrolled him in 9 weeks of sports summer camps. I hope that helps him lose some weight and increase his metabolism. I am working on changing his diet a bit to decrease the carbs a bit and increase veggies, and fruits. He does well with protein and I don't need to increase that.

Last week I ran out of one of the homeopathic drops. I didn't buy it (forgot) and 3 days later, Jonathan's throat tic returned! It excites me to know which homeopathic drop is the one that is turning that off. I have run out of the other ones for a couple of days without the same reaction. It is the apo-INFEKT. It is supposed to help with the strep.

I like this new method of chelation. I believe it is working for Jonathan.

6 Rounds and Well

2009-05-17T01:09:00.002-05:00

We started his 6th round of the low dose high frequency DMSA/ALA chelation this weekend. Jonathan has actually shown some nice progress in the past couple of weeks, mostly in comprehension and memory. But it is hard to say if it is due to the Neurofeedback sessions he had (he completed 40 sessions and we stopped 2 weeks ago), the new homeopathic drops (which miraculously stopped his throat tic) and the DMSA/ALA chelation. Or a combination of all.

The DMSA/ALA seem to aggravate this leaky gut. His stools are well formed but they have small white dots only during the weekend while he is taking the pills. But I don't see any sulfur related issues. I was worried to give him DMSA with ALA because of his nutrigenomics genetic mutations. But, aside from the extra yeast, he is doing quite well. We (my dad, my husband and I) have been incredibly disciplined to give him the pill every 3 hours. We have not missed a dose yet.

I am planning to try a new probiotic that was recommended by one of the autism groups that I belong to. It is called In-Liven.

Jonathan's motor skills are concerning me. He is having a hard time with physical activities: riding a bike, skating, climbing, even running. He gets tired very quickly. But the other issue is that any activity that requires him to use his arms to help him, he simply quits on. Climbing is such an issue. He has a terrible time pulling himself up. He doesn't seem to have strength in his upper body. I believe part of the issue is that he is too heavy. He is 7 and weighs 75 lbs. But he likes to eat (and not junk precisely) and changing the diet to low carbs would be very hard. It is better to get him to become more active. For the summer, we enrolled him in sports camps. I need to find a solution to this problem. The new school he is going to attend in the fall will have tons of physical activities which I hope will help him build his strength.

Muffins for Mom

2009-05-08T19:05:00.002-05:00

Today was pretty special. Last night, while I was giving Jonathan a shower, he told me that I needed to come to his school today for a mother's day event. I was shocked because his teacher had not sent a note home (as far as I knew). As we conversed about it, he told me that he had done a card for me and a book and a flower and that he had picked out a muffin for me and that I had to come. At first I said that I couldn't because I had a meeting (thinking that he was making it up or saying something out of context), but then he looked at me with tears in his eyes and asked me to please go. Of course I said yes. When I put him to bed, he again made me promise that I was going to his school. I said yes.

In the morning, he came to our bed and as I was getting ready to go downstairs to fix breakfast, he asked me if I remembered that today was Muffins for Mom's day and if I was coming. I told him yes. At 8am, I called the school and they confirmed that it was an event for first graders and for his class it was at 9:30am. I took him to school and on our way, he spoke out the schedule, by this making sure that between taking him to school and going to work, I was going to his school first.

I showed up at 9:15am to sign in. When the teacher saw me, she was very happy. She expressed that she was very worried that I had not RSVPed to her note. I told her that I did not see the note and apologized. I am very glad that Jonathan told me the night before, because 25 out of 26 moms went and the kid whose mom did not go was very sad. I know how traumatic these things can be.

He was so excited to see me. He showed me to his desk and gave me all the things he made for me. And hugged me and kissed me. He was genuingly happy to see me. That made me very happy. The event was only for 45 minutes. The kids had to take their mom's breakfast order (1 of 3 choices of muffins and a juice) and the kids picked it up and brought it back to them. It was funny to them balance the huge muffin on one hand and the juice on the other, but they did it. We ate and talked to our kids and looked over their journals and other working books. It was truly special and I am very happy I did that. Jonathan appreciated it too. When he went to bed tonight and I kissed him, he told me that he was very happy that I went to his school today and that he loved me very much.

Round 2 - Very Sentimental

2009-04-22T21:49:00.001-05:00

We did a second round of the DMSA/ALA this past weekend. Same small dosage (1/4 DMSA and 1/8 ALA) every 3 hours. It went well. I did notice that Jonathan was more emotional than normal. On Sunday, he had a meltdown because he wanted to show his friend C. his new Nintendo DSi; and when I told him that he had to wait until later in the weekend, he could not regulate that. I bent the rules and let him show his friend for about 15 minutes. We were at a park. After that, he was happy again. He is normally pretty good about regulating his feelings. So this is definitely a detox reaction.

Homeopathy

In the past week, he has hardly scratched/cleared his throat. I heard him twice. And he claimed it was food stuck just after he ate. After he cleared his throat, I didn't hear him clear his throat again. I am starting to believe that homeopathy might be a good intervention after all.

He is on 20 drops of all 4 homeopathic supplements plus the pill. He is taking them well.

Neurofeedback

This intervention has been very good for Jonathan. He has one more session left to complete 40 sessions. When he started, his reading comprehension was very poor. If he read a book, he could not tell me what he read unless he read it at least twice more. Now, he does much better. Although he may not comprehend everything in the story, he is able to articulate what happened and even ask wh questions.

His language has really improved too. Even though the topics he chooses to talk about are not exactly age appropriate at times (lots of talk about the video games he plays and he loses people half the time), he won't stop talking. He is getting better at using common idiomatic expressions and pronunciations like "didn't", "don't". He used to say "I did not ..." or "I do not...". He is using more complex thinking like "mommy, can you take the Nintendo DS back home after you take me to school and before you to go work? Do you promise?".

Unfortunately, we need to stop the sessions because my insurance will only cover 40 sessions since this is an out of network therapy. Too bad, because I really think that this has been very helpful.

Miracles Do Happen

Today I received a phone call from a good friend with a severely affected child. Her son is a non-verbal teenager with seizures. He is very sweet. I met her about a year ago and have helped her to the best of my time and ability with new things she wanted to try for her child. I told her about HBOT, Yasko, Tomatis and Neurofeedback. She attempted all those interventions. Today she called me to thank me for introducing her to Jonathan's Neurofeedback Dr. He started Neurofeedback at another organization a while ago and saw no results. She switched to Jonathan's Dr. about 3 months ago. The Dr. learned, through her initial assessment, where to concentrate to help him. Her assessment seemed to have been right. The sessions have helped with his seizures. He has not had seizures in 3 months. And today, he spoke for the first time. She took him for a walk since it was a nice day. After a bit, he told her "go home". He said it 3 times. This news made me cry. We fight so hard to find these puzzle pieces and when we find one, we claim victory.

She is going to continue with neurofeedback for a while needless to say, as she continues to try other biomedical approaches. I told her about the Zyto energy and homeopathic therapy and she is interested in that. It might give her other clues that can help her son continue to improve.

Never give up! That is today's message. Never give up!

3 Days with no Throat Scratch

2009-04-14T20:03:00.009-05:00

This is truly remarkable, so I need to log it. It has been 3 days since we heard Jonathan scratch his throat. He would do it every few minutes, sometimes seconds. He'd make a noise like something is stuck in his throat and he needed to clear it. He has been doing that since he was 3, but lately it got really bad. I got so worried, that this year I spoke with his DAN! and pediatrician about having an ENT do a full exam, including an X-ray. He is old enough and has overcome his sensitivity issues and can be examined by an ENT with no problems. This was driving me crazy.

His pediatrician, during his well visit 3 weeks ago, told me that it was probably a tic and there was nothing to do but try to bring it to his attention often enough so he could control it himself. Believe me we have, and it has not made any difference. I always thought is was an allergic reaction to gluten or spring/fall allergies because it seemed seasonal. And it is hard to control an allergic reaction.

During the Zyto reading (energy reading via the hand) last week, the practitioner told me that normally the throat scratching noise is due to a tic that comes from strep in the brain. Actually, he told me that it is typical of PANDAS syndrome. I have not had Jonathan go through a formal PANDAS diagnosis, but I might. Nonetheless, I thought it was interesting; even more so because he was the only person that possibly knew what it was, and that confirmed that it was not a physical problem with the child's throat.

I started him back on all the Yasko supplements (my poor baby, back to over 50 pills a day, but he is a champion and takes them without making any complaints), but I doubt that the pills have done much with respect to the throat noise because he has taken them before for over 2 years with little effect on the throat issue. Same with the probiotic.

The new things are a very low dose of DMSA/ALA chelation and the homeopathic drops. I discard the chelation pills because I have been chelating Jonathan with other chelators for the past 4 years and they have not had this type of effect. So it must be the homeopathic drops. I started them last Friday. On Sunday, I heard him do it once. Nothing yesterday, nothing today. My dad has also paid attention since he spends the afternoons with him, and he too told me that he has not heard him make a noise. And today, the neurofeedback Dr. noticed it as well on her own. Since I started them together, I have no idea which one caused this reaction.

I'll keep logging my observations. This is very cool.

Round 1 - Reacted Well

2009-04-12T20:43:00.001-05:00

We started the DMSA/ALA low dose high frequency chelation on Friday 4/10/2009 at 12noon. We also started the homepathic drops. 5 drops of each twice a day. The tablets are on back-order.

I thought it was going to be really hard to wake up twice in the middle of the night to give him the pills, but it wasn't so bad. I did 3 hours both during the day and at the night. The protocol allows for 4 hours at night, but from what I read, it is better to keep it at 3 hours to prevent metal redistribution in the body.

Each weekend is considered a round. From what I have been reading, Jonathan will need about 100 rounds (over 2 years) of the DMSA/ALA combination to see the improvements we wish to see. Some kids may need up to 300 rounds. I hope that 100 rounds are enough :) Time will tell.

I didn't see any bad reactions this weekend. On the contrary, there were a couple of positive observations this weekend.

Expressive language was better. He articulated more complex sentences. But I am not sure it is related to the chelation or homeopathy. Nonetheless, it is important to note.
Non-verbal language much much better. On Saturday night, we went to a restaurant with friends. After his food arrived, and looked at him and he must have felt that I was looking because he looked right back at my eyes. I signaled with my finger to him to eat his chicken and he used his hand to signal me to wait and then pointed at the french fries and ate one and I nodded okay with my head. Then I realized that I had just had a perfectly normal non-verbal conversation with my autistic son. That was an AWESOME feeling. Progress!!!! I am not sure it is related to the chelation or homeopathy. Nonetheless, it is important to note.
Throat tic was vastly improved. On Saturday he scratched his throat less than normal, but today, he only did it one time in the morning. That is pretty freaky. After years and years of this, it was weird to realize that he had not scratched his throat for an entire day. I credit that to the homeopathic drops. I was told that 2 of them would help with bacteria and strep. I am ready for more!
He is having better bowel movements. They are not as stinky (the past month, his stools were intolerable) and he did not have accidents this weekend for the first time in weeks. The stools are still softer than they used to be, but better somehow. I re-introduced Klaire Labs Detoxifying probiotics on thursday night. Perhaps the probiotics helped with his stools. Or perhaps the homeopathic drops have. That is hard to tell.

Still Mercury - Change of Protocols

2009-04-09T23:12:00.014-05:00

It has been a while since I last wrote a post. For the past few months I felt very lost with regards to Jonathan's recovery program. He reached a plateau a few months ago and I was sad and frustrated because I, for the first time in 4 years, didn't have a plan. I was hanging on a thing threat with respect to the neurofeedback and I wholeheartedly think that it has helped him, but it is not enough. It is not the "missing link(s)". That somehow has changed in the past week, so I am back on.

Last week, we ran his urine porphyrin again, and it came back with a high mercury toxicity read. It frustrates me that after 4 years of biomed, the mercury toxicity still shows so high.

The first urine porphyrin showed very high levels of mercury, aluminum and lead. We then implemented the Yasko protocol and the levels dropped down to half. It was very encouraging. However, the protocol required additional detox and we could not afford the metals program along with the HBOT. So we chose HBOT and the Yasko supplements, but used suppositories instead to chelate rather then Yasko's metal program. 1.5 years later, the level of toxicity has minimally dropped. That is frustrating. What a waste of time.

Last month, I learned about an energy reader device called Zyto. I decided to have Jonathan do the hand test, and it showed that he has a lot of mercury, that he is a vaccine injured child as his body reacted very badly to the Hepatitis-B vaccine (which I have been saying for the past 4.5 year), the rubella, varicella and flu shots. Vaccine is the major cause of his autism. It infuriated me, but I already knew that. So life goes on. It showed huge amounts of candida as well as strep. Although I thought I had eradicated his gut strep, it seems like he has strep in other areas of his body, including his middle ear and brain. I finally learned that the annoying throat scratch sound he makes is a throat clearing tic from strep in his brain. He seems to have a slight low dopamine issue which we knew from Yasko's mutations and a pituitary problem.

So in an effort to shake things up a bit, I made the decision to do homeopathy along with the Yasko supplements to bypass his methylation mutations and the low dose high frequency chelation protocol from Andy Cutler using DMSA and ALA. Even though Jonathan has a +/- CBS upregulation problem (which causes high levels of ammonia and some intolerance to sulfur), since he doesn't have the SOUX mutation, I have decide to give the Andy Cutler protocol a try. It is pretty much one of the only popular chelation protocols I have not tried. And I am trying to leave IV chelation as a last resort.

I know nothing, absolutely nothing, about how homeopathy works. But many people swear by it and from my conversation with the Zyto practitioner, he indicated that there are certain areas in the body that only homeopathy has a good change of reaching to. There is nothing I can lose and much I can gain. So I am going to give it a shot.

I will log the homeopathy and Andy Cutler rounds weekly and include anecdotes on improvements and regressions so I can keep a log.

Homeopathy

5 products:

Pekana
- Pk - AILGENO (oral drops)
- Pk - apo-INFEKT (oral drops)
- Pk - NEU-regen (oral drops)
Syntrion
- St - SyAllgen (tablets)
- St - SyDetox Complex (oral drops)

The protocol is as follows:

Day one:
Pk - AILGENO - 5 drops twice a day
Pk - apo-INFEKT - 5 drops twice a day
Pk - NEU-regen - 5 drops twice a day
St - SyAllgen - one subligual tablet (on back-order) once a day
St - SyDetox Complex - 5 drops twice a day

Day three:
Pk - AILGENO - 10 drops twice a day
Pk - apo-INFEKT - 5 drops twice a day
Pk - NEU-regen - 10 drops twice a day
St - SyAllgen - one subligual tablet once a day
St - SyDetox Complex - 10 drops twice a day

Day Seven:
Pk - AILGENO - 20 drops twice a day
Pk - apo-INFEKT - 5 drops twice a day
Pk - NEU-regen - 20 drops twice a day
St - SyAllgen - one subligual tablet once a day
St - SyDetox Complex - 20 drops twice a day

On day 35, we will do the Zyto test again

Andy Cutler's Chelation Procotol:

Chelation agent(s): DMSA + ALA

Dose frequency: DMSA + ALA (together): every 3 hours, including at night.

Dosage:

DMSA (alone or in combination with ALA): 1/8 to 1/2 mg of DMSA per pound of body weight, per dose
ALA (alone or in combination with DMSA): 1/8 to 1/2 mg of ALA per pound of body weight, per dose

Ratio of DMSA to ALA (if using both): A 2:1 ratio for the first 4 weeks. 1:1 ratio after.

Length of cycles: 3 days on, 4 days off.

Friday after school until Monday morning = 2.6 days.

Supplements:

B complex, C and magnesium should be given 4 times a day. The B and C are not effective if not given 4 times a day due to their pharmacokinetics.
Zinc, E, carotenes, etc. at least daily.
Yasko supplements for body support, mitochondrial cocktail and methylation mutaiton by-pass.

Jonathans' weight: 71 lbs

Chelator	Date	Dosage	Dosage Per interval	# of Dosages
DMSA Dosage	4/10-4/13	1/4	18 mg	22 (1 every 3 hours)
ALA Dosage	4/10-4/13	1/8	9 mg	22 (1 every 3 hours)

DMSA Dosage	4/17-4/20	1/4	18 mg	22 (1 every 3 hours)
ALA Dosage	4/17-4/20	1/8	9 mg	22 (1 every 3 hours)

DMSA Dosage	4/24-4/27	1/2	36 mg	22 (1 every 3 hours)
ALA Dosage	4/24-4/27	1/4	18 mg	22 (1 every 3 hours)

DMSA Dosage	5/1-5/3	1/2	36 mg	22 (1 every 3 hours)
ALA Dosage	5/1-5/3	1/4	18 mg	22 (1 every 3 hours)

DMSA Dosage	5/8 - on	1/2	36 mg	22 (1 every 3 hours)
ALA Dosage	5/8 - on	1/2	36 mg	22 (1 every 3 hours)

After 5/8/2009, same dosage for 6 months and I will do another urine porphyrin test to check progress.

28 Neurofeedback Sessions so Far

2009-03-16T15:57:00.002-05:00

It has been a while since I wrote. My life is very hectic at the moment. And I don’t see the big gains anymore, so I am not as motivated. But it is very therapeutical for me, so I’ll try to get back into the routine.

Jonathan has completed 28 neurofeedback sessions. We started back on January 6th. I feel he has made some progress. His language is more complex, his thought process is more complex. He seems to think things through a bit more than before. For instance, this weekend we went to visit our friends and Jonathan started playing the Wii with his friend C. After while, they sat down to eat and when Jonathan was done, C asked Jonathan to go back and play one of the level by himself. Jonathan must have thought that it was odd because he turned and asked him “why?”. C. told him that it was because he wanted to see how he got past a bad guy while he finished his dinner. And Jonathan said “ah, ok. Sure”. In the past he would have just said sure instead of thinking about the reason behind the question. I find that to be positive.

He had the TOVA test done this past Saturday and the Dr. believes that his attention span has improved. His agility has slowed, and that is because he is now thinking things through more than doing things impulsively. She is going to concentrate on the frontal part of his brain to speed that up a bit.

We are looking into moving Jonathan from the public school into a private school that will give him all the therapies that he needs throughout the day. I am very excited about it. We are in the registration process. In the meantime, I need to find summer activities for him.

Improvements:

Language (expressive): intonation is better, thought complexity, he can express his needs better.
Comprehension: I believe this has improved since January.

Areas of concern (besides language):

Language (expressive): there are words that he is having trouble pronouncing.
Stims: He is still humming. He also walks in his tip-toes more frequently lately.
Auditory Memory: Even though his attention seems to have improved, he is having a hard time responding to people when people ask him questions if his attention is not grabbed first. If I walk by and ask him to put his shoes on while he is watching TV or playing something, he completely ignores me. But once I call his name (sometimes loudly) and he turns to engage me, he can often do what I ask him to do with one or 2 prompts.
Sensory: he still needs sensory input. He keeps moving. And he is very sensitive to haircuts again. I thought we had overcome that issue, but it is back.
Lazy: I don’t know if it is laziness or low muscle tone, or other issues, but he doesn’t like to do things on his own. And when I confront him he tells me that he is tired (brushing teeth, changing clothes, biking, climbing). But as soon as I give him the ok to play the Wii, his energy is back.

Time to Rethink My Strategy

2009-02-04T21:28:00.005-05:00

The time has come to re-evaluate my strategies. I have been easing off for the past 2 month. Part being overwhelmed with work and autism stuff. Part not feeling as much pressure on my shoulder because the doctors are giving us a good prognosis. However, I think that was a bad move. I see his language getting dramatically better, but his behavior is regressing.

This weekend he did something he had not done in a long time. He put music CDs in the DVD player to listen to music. But what was worse is that he realized that the PlayStation 3 can show images on the TV while the music plays (much like Microsoft Media Player) and wanted to do that for hours. What a set back. And today, he begged me to let him watch his favorite VHS from when he was a baby: Baby Einstein. He sat on the sofa, and hummed the music while he watched the images spin. Now, that is total regression.

I am getting all his supplements back into a regimen again this weekend. I am missing few, so I'll go to the apothecary and get some on Saturday. I am also thinking that the neurofeedback therapy must have triggered something in his brain. His language (vocabulary and sentence complexity) is really much better than the past 2 weeks. Something is working. But something is not also. I am not going to stop, but I need to find out what is going on. He is now very irritable and does not tolerate routine changes without putting on a fight. He was always pretty flexible unless he was really obsessed with something. He is now very defiant. I don't get it. Not aggressive physically. Just with words and language tone (high tone, almost screaming).

We went to see his DAN! last week. Vanessa came with us and he behaved very well. He seemed pretty neuro-typical to the doctor. But that is the problem. He is not always NT. His obsession with only playing with electronics and ZERO with other toys is really bothering me. He started getting interested on board games, but he quit them also. The Dr. gave me a couple of tests to do. I will do them this weekend. And start chelation again next week.

NeuroFeedback Therapy

2009-01-25T00:27:00.003-05:00

It has been almost 2 months since I last wrote a post. I have to be very honest and say that I burned out.

Jonathan is doing well. But he has plateaued. I am burned out and don't want to deal with the supplements, the diet, the therapies, the endless nights reading about new findings, trying to put the 3000 piece-puzzle together. I needed a break. I still have not gotten a full grasp, but I did start something new and I want to track it.

We started neurofeedback therapy on January 6th., 2008. He has had 8 sessions. I don't see much improvement (any really) and I hope that we get reimbursed by the insurance because it is expensive. But he is off all supplements and that may be a reason why this is not showing the improvements I expected. Time will tell.

IEP Updated - Social Goal Added

2008-12-01T11:29:00.000-05:00

It has been a while since I last updated this blog. I have to admit that I have been having a difficult time trying to deal with regression and with the new social issues that Jonathan has at school. But time mends things.

I did make mention I believe that I was going to start Jonathan on a homeopathic drop to address his intestinal strep. I started him on the San Strep a couple of weeks ago and to my surprise, his stools normalized. They are whiter than normal which is strange, but they have a good consistency. His OCD has not changed, but his sensitivities have. We took him this weekend to get a haircut and he did not move while the lady was using the clips. I also cut his toenails and he did not complain or moved. He had mastered this a few months ago, and then his gut got out of whack and he went back to being very sensitive. Now that his gut seems to be in better shape, he is back to not being so hypersensitive to touch anymore. To me this has always been yeast, but it could be leaky gut issues that are being addressed with the drops. Hard to tell.

We met with the school representatives a week and a half ago and updated his IEP. The speech therapist was nice and said that she was going to work on his tone (sometimes he screams to his classmates in class when they are not doing something right, sometimes he doesn’t understand social cues). She said that there were a couple of programs that could help him. In addition, he is going to be pulled twice week during lunch to sit with the school psychologist and a social group that she created and also with the special education teacher assigned to him (separate days). They did not say how they would report his progress. I am a bit tired of them lying to us by telling us that they would report weekly or monthly or via email and they never do. I want him to finish this year and if I don’t see improvements by March, we are thinking about private schools.

The past 2 weeks he has been playing lots of pretend with Vanessa with small toys, mostly animals. On the downside, he has been very intense, crying all the time if he doesn’t get what he wants, or being very pushy.

Social Problems Continue at School

2008-11-18T21:56:00.000-05:00

Last week was a very frustrating week for me. I know that our lives with autism and dealing with school are going to be hard, but I am starting to feel what it is going to be like and I really don't like it. I am not sure what to do, how to react.

Jonathan is having a hard time socializing with the kids in his 1st grade section. I don't know if it would be better in a different section. I don't know if this teacher is better or worse than other 1st grade teachers. I don't have time to volunteer in his class to observe the dynamics. But I do know that Jonathan had mastered social skills in Kindergarten with the teacher he had (she was (is) awesome) and here they are going to add a new goal in his IEP this coming Thursday to handle social skills because he is not doing well.

Last Thursday, while he was in class, sitting at his desk doing his morning work, he felt someone push him very hard and since he wasn't expecting it, he couldn't control his movements. The top of his head hit the edge of his desk. He was taken to the school clinic and the nurse didn't see anything major. When he returned to class, he thew up a lot so they took him back to the clinic and called me. The nurse asked me if I could be there in 10 minutes because throwing up right after a head injury means concussion in their book. I told her that I was 20 minutes away, and she told me that they had to call 911. I told her to go ahead and ran out to the door. When I arrived, I spoke with the paramedics and the guy said that he believed he could have had a concussion and urged me to take him to his pediatrician. He asked Jonathan to again explained what happened and he showed us. He was very detailed. But he didn't know the names of the kids that were standing behind him. He still doesn't know everyone's names. The assistant principal was there and told me that she was going to investigate.

I took Jonathan to see his pediatrician and he told me that indeed he had had a concussion but it was mild and didn't need to have x-rays done unless he threw up again. He told me to keep him awake until the evening and to call him if anything changed. But I noticed that the had forgotten somethings like he forgot that he hadn't had breakfast that morning. I didn't make much of it, but it seemed strange because he has a very good memory.

The next day, I called the school and spoke to the assistant principal. I asked her if she had investigated the event, and she said that she had, and after asking the kids that Jonathan thought he had saw behind him and they all said that they didn't push Jonathan, the assistant principle asked Jonathan if he had done that to himself and he apparently said yes. That comment infuriated me, but I chose not to fight with her. Jonathan has NEVER self-injured and that was just something he would have not made up. But if you sound convincing, he might give into what you said and I feel (even if it was not the case) that he was manipulated to admitting that he did it to himself. The next day, his memory was not perfect and when I checked with the doctor he said it was normal. But he did not lie (he doesn't really know how to lie that well).

A couple of months ago, he was in a situation with another boy who hit him intentionally in the lip breaking his lip and sending him to the clinic because the kid didn't like that Jonathan didn't want to do what he asked him to do. When I told Jonathan that it was probably and accident, he told me that it wasn't. The same situation happened here. He told me with details what happened, but his memory was blurry the next day and the school put it back on him because he cannot express himself perfectly. I feel betrayed by the school and the system. If this is happening now, when he is only 6, what should I expect when he is in middle and high school?

We have an IEP meeting this coming Thursday to discuss the new goal and I will challenge them about what happened. If I know of any new abuses, I will request that he is moved to another section.

Back on Gluten Free - Regression Stopped

2008-11-10T11:00:00.002-05:00

Last week I decided to go back to the GF/CF diet. I had the feeling that Jonathan’s intestinal strep returned and he has tremendous leaky gut (his dad had strep throat 3 weeks ago). So I went cold turkey on him and just gave him gluten free foods. Boy I am glad, because on Thursday he was speaking very nicely and his pretend play returned. The fog lifted again. Not 100%, but enough to give me an idea that his gut is out of shape. On Friday, he had pizza, and he started making a strange sound with his throat which he does whenever he eats gluten and it affects him. So, back today on gluten free again. I did tell him that he needs to be on this diet, and he was mad that he couldn't eat pizza. So I promised him that I would go today to the grocery store and get him the special pizza. He was happy with that and promised not to eat anything that mommy didn't give him.

I decided to search my Yahoo groups for ideas and learned about a homeopathic drop called san-strep-drops. I read that it is very helpful with intestinal strep. I ordered them and I have not received them yet. I want to give that a try.

Also, since he is now taking pills (life is good!), I decided on Friday to add Phosphatydilcholine back to his diet. The pills are huge and they were hard to open. But he is taking them easily. I can’t say that I see lots of improvements with it yet, but I know he needs PC.

This week I ordered a number of supplements that I had not given to him in a while. I believe he is ready for them. His stools are better (I believe it is because now that he takes the pills, I don’t mix them in prunes). I am going to finish the EDTA and DMPS that I have in the refrigerator, and I am going to give that a break for a couple of months so I can see if the new supplements work. I also stopped the diflucan. I didn't see improvements and I know it hurts his liver. I ordered candex to help control his yeast.

I feel better this week. He has returned to how he was about a month ago (actually, I think he has improved) and I can talk to him and he can clearly understand me, and his language has gotten smoother. He is now self-sufficient (he dresses completely on his own - both pajamas and regular clothes, sweaters (if they are inside out, he will fix them before putting them on), jackets, shoes, etc.), he brushes his teeth on his own, he even wanted to shower on Saturday by himself, but I told him he needed to wait for me. We are doing more complex negotiations.

So I am ready for the next steps.

I have put together a new nutritional supplementation plan that includes a number of supplements that Yasko recommends for his mutations, plus supplements for the Vitamin K protocol, the homeopathic drops for strep and the new glutathione patches. I should receive everything this week.
I got him back on gluten free and casein free diet (except I give him yogurt). That I feel will help tremendously. He might have to be on this diet for a very long time. I thought we were good to go, but we are obviously not.
We are also going to start on the home listening program again today. I bought it a couple of months ago, but when I attempted, he was so weird that he didn’t pay attention. He is ready now.
And I need to find time to meet people in my neighborhood that he can play with. He needs to have more play-dates. I am going to give the top 3 items a chance to start working before I start putting a play-date plan together. I am also going to contact the RDI person that the Children's Hospital doctor recommended. She might be covered under my insurance.

Parent - Teacher Conference - 1st Grade

2008-10-30T23:52:00.000-05:00

We are beginning to worry that Jonathan's minor regressions are sticking. He seems very absentminded, he is moving a lot again, his OCD has returned, and he seems in his own little world more than normal. I believe it has been 2 weeks since we noticed the regression.

Javier and I are a bit down this week after having the parent-teacher conference with his 1st grade teacher and also seeing that he is regressing. Academically, the teacher said that he is doing really well. He is even a bit more advanced in writing and math. She told the OT, ST and special ed teacher that she didn't understand why he has an IEP when he is a very good student and they told her to make sure to tell us because they know how far Jonathan has come these years and they fully credit it to our hard work and dedication. But the area that the teacher is very concerned about is his social skills. He has no friends. He doesn't hang out with anyone. Had not identified himself with any of the little groups already formed. He is a loner. During recess he is always by himself. His social interaction is so isolated, or better yet non-existent, that the Special Ed teacher and the 1st grade teacher suggested that a short-term and long-term goal are added to his IEP asap. In addition, they suggested the he starts participating in a social program that the school psychologist has. They are going to speak to the psychologist and let us know when he can start.

In kindergarten, he seemed to have more friends than now. But even though it hurts me dearly, it is no surprise. I have been trying to tell everyone at school that he has a social problem and they removed the goal from his IEP while he was still at kindergarten. But his 1st grade teacher spoke to the Special Ed teacher because she has seen hundreds of 1st graders and Jonathan's lack of friends and social involvement in the classroom worries her. She also witnessed a situation that raised a red flag in her head immediately. There was a child this past Tuesday in recess that fought with another child and was by himself. The teacher noticed that Jonathan was alone in a corner walking around and approached him. She asked Jonathan if he could play with the child because he was a great friend and Jonathan, after seeming like he was thinking about it for a few seconds, turned to his teacher and said "my brain is very big". The teacher could not say much and told Jonathan that that was great. She didn't tell us whether Jonathan did play with the kid or not, but I didn't care to hear anymore about it either.

Minor Regression / Started Swallowing Pills

2008-10-26T21:57:00.004-05:00

It has been a few days since I last posted any observations. He seemed to exhibit some minor expressive language improvements, but nothing very dramatic. Last week, we all got home at home. I had a bad cold and his dad had strep throat. On Saturday 10/18/2008, he seemed to exhibit some signs of a cold. But the next day, all symptoms were gone. He has progressively since last Saturday regressed behaviorally. Not too much to be too disruptive, but enough for my husband and I to notice and worry. But what is bothering me is that he is not responding to his name when we talk to him unless we get in his face.

Yesterday he had 2 slides of pizza and his eyes simply looked totally drugged. That is so scary to me because I thought he was over with his insensitivity to gluten, but he is not. In fact, there is something really wrong with his gut. His stools are a mess, the diflucan is not helping and now gluten is affecting him again. Also, the past week he has been overly obsessive about watching a movie (Madagascar) like in the old days. 3 or 4 times a day and melts down if we say no. That to me is strep. He has viruses and bacteria in his body again.

On a positive note, this week he started swallowing pills. I was so worried for years to have him do it (lots of kids start as early as 4 years, but I was not ready to teach him), but lately he could not take the mesh that we make every day with all his pills (we open them into prune baby food). His taste is getting better and with that comes rejecting really nasty stuff. Today he swallowed all but the Vit. C which is very very big. That one we opened into the baby food.

Very Active Weekend

2008-10-14T17:02:00.013-05:00

This weekend we decided to take the kids to an amusement park with several friends since it was a beautiful weekend. There were 15 of us (8 kids, 7 adults). Jonathan was very excited. He loves this park. When we met the other folks, Jonathan immediately joined the other 3 boys in play. They got on most of the rides together. We later broke into separate groups because some wanted to do rides that Jonathan doesn’t like. We went on a 3D ride. Later that evening, we went to a restaurant to have dinner, and Jonathan was playing with his Dad’s iPhone, when one of the boys took it and started playing. Jonathan did not say anything and just watched him. Another other boy came and started talking with the boy that took the iPhone and pushed Jonathan to the side and told him that they didn’t want him to play with them. Jonathan was heartbroken. He cried and I took him to the bathroom when he told me what happened. He asked me “why mommy, why don’t they want to play with me?” I told him that I thought it was probably a mistake, but it wasn’t. These are the types of problems that Jonathan is going to face now. Since he doesn’t quite know the unwritten rules of society yet, he gets pushed to the side. The other 2 boys have ADD and are having trouble at school with their academics and memory. I was talking to their moms before that happened. They are so worried about how to get them to pay attention, learn and complete their work. I, on the other hand, have no trouble with academics or memory. Jonathan is advanced in those areas. But he evidently still has social problems that will become more prominent in the future. The other 2 boys are very social. Funny how these things work.

On Sunday I took the kids to the museum. Jonathan started to show lots of interest a couple of weeks ago to things that he never cared about before. So my new therapeutic strategy is to expose him to as many experiences as possible. Less TV and video games during free time and more nature and other activities. He was very excited in the museum. We went to the insects exhibit and he loved having insects in his hand. We entered a room full of butterflies and that was great. He was so gentle yet started matching all the live ones to a cheat sheet they gave us. He was amazed to see one eat. We saw dinosaurs, and whales. We went into a store (Vanessa wanted to buy a stuffed whale) and he bought a necklace with a blue whales . He sleeps with it he loves it so much. He prefers live animals to museum skeletons. I am going to make a schedule of activities that will include going to see live animals (zoo, aquarium, horseback riding, etc.)

Since Monday was a holiday, I took the day off and took the kids to a park that is by a river and has lots of rock to climb. We made a barbecue and Jonathan was very curious. First he reacted like the teachers are teaching him at school “mom, fire, smoke. You have to dock if you see smoke”. And he did. I told him that it was a BBQ and that was the way to start it and it was not going to get to anyone. So he relax and watched his grandfather set the BBQ with charcoal and a match. Then he watch me put the full on the grill and was curious how the food was going to cook if the fire was gone. And I showed him that the charcoal was very hot and that is how the food cooks. He later played ball with Vanessa, and collected leaves that fell off the trees. Then they played climbing on the rocks. It was a fun day and full of new experiences.

This morning, he woke up and thought that he had his field trip to the pumpkin patch. I couldn’t find the note, but he remembered that something was due on the 14th and that he had to wear long pants and long sleeves. So he changed back and when I found the note, I learned that what was due today was the authorization note with the payment. So he is remembering things. So he changed back to shorts.

I changed his probiotics on Friday to Klaire Labs Detox formula. I was giving him VSL#3. That is the only change and on Sunday his stools were finally firm. He has had very soft stools for the past 4 to 5 months. It could have been the very strong VSL#3 formula. I’ll keep monitoring.

(HBOT 160) - First Fight at School

2008-10-07T23:09:00.001-05:00

Today was the last day of HBOT. We completed 160 hours. Amazing. I need a break. Over two months of getting home at 9pm was getting old. He did well during all the dives. I noticed some subtle improvements, but I expect some more a few weeks after the sessions are over.

Today he had his first fight with another kid at school. It wasn't his fault and the teacher was extremely apologetic. But it was a new experience. He decided to join a couple of classmates during recess for play. The game was about super heros and one of the kids told Jonathan to be the bad guy. Jonathan refused and the kid got mad at him and hit him in the mouth with his head. Jonathan was taken to the school clinic and treated while the other kid was taken to the principal's office and his mom was called in. School called me too to let me know that he was in the clinic but I didn't get any more details. Jonathan was upset about it when he got home. During the HBOT he told me what happened and I told him that it was probably an accident and he said "no mommy, it was not an accident, the boy really wanted to hit me". When I got home, I read a note from the teacher and called her at her house. She explained what happened and apologized. I feel bad for Jonathan that this happened, but it is all normal stuff and that made me very happy. Kids fight all the time. Although I don't agree with the boy's tactics, I love the fact that Jonathan went to play, did not agree with the rules and expressed himself. Perhaps next time he will defend himself.

(HBOT 156) - Hungry for More Independence

2008-10-02T21:53:00.002-05:00

On Tuesday, when I checked Jonathan's backpack and the "Tuesday folder" (public schools send information home for parents to review in a special folder every Tuesdays) I found October's school lunch schedule and Jonathan was very interested in reading what the cafeteria had to offer every day. He told me which days he wanted to eat at school "like other kids" and what days he wanted me to pack his lunch.

He has been buying lunch on Fridays since he started. And he likes doing what other kids do. But he is a picky eater, so he won't eat quesadillas if that is all they are selling. But he really likes using his own lunch money. He knows his "lunch money" number and feels like the other kids. So he picked more days he wanted to use his own lunch money and order himself.

Same thing applies to snack time. I know that for snack they can get ice cream, so I asked him if he was going to also buy snack, and he said "mommy, on Thursdays they only have orange ice cream. Yikes." He was so cute.

He has been reading a lot this week on his own. Particularly a couple of books that he brought home from his school's library and from his own book collection. He is reading fast lately. But I have been paying attention to his eyesight when he reads and he tends to move his eyesight. The lady that wrote to me a couple of days ago about the vision problem might have hit a good point. What I thought could be dyslexia can actually be a vision problem. I am going to look into that. Thanks Tammy.

Another note for this blog is that he has not had a single bowel movement accident since he started diflucan again. His stools are not yet in the consistency they used to be, but he is able to control his BM. That is a big relief.

(HBOT 153) - Summary of Outstanding Issues

2008-09-29T21:07:00.007-05:00

I am over Jonathan's DAN! Doctor's observations and prognosis, and back to my "looking for a cure" mode. For the past 4 years I have been focusing on sensory/OCD/stims/anxiety/language problems. And he has overcome many many obstacles. But he still shows ASD symptoms besides language. So this week I observed him very closely to try to pin-point those areas:

Stims: he hums constantly. He cannot help it. I tell him and a second later, he is humming again.
Odd behaviors: they are subtle, but they exist. For instance, yesterday when we arrived at the rec center for swimming lessons, he went to the front desk, got really close to the clerk and just stared at her with his eyes exaggeratedly opened and a big smile. He didn't say hi and he looked weird. So I immediately intervened and told him to say hi. He does this behavior with strangers all the time. He also likes to get very close to people's faces, particularly other kids or people very close to him like parents and grandparents.
Play skills: even though he has shown to be able to do some pretend, it does not come naturally for him. Vanessa yesterday sat on the floor at my cousins house with 7 princesses dolls and played making up stories and having each doll talk to each other. Jonathan on the other hand was bored. He doesn't know how to entertain himself unless it is with video games or playing with other kids (particularly when it is tag or hide and seek). I keep getting small toys, but he looks at them and then puts them down and moves on.
Empathy: Jonathan shows some type of empathy, but lacks in my opinion the ability to put himself in someone else's shoes. If he hurts Vanessa, he is not concerned about how Vanessa feels but that he did something wrong and I am going to say something to him so he apologizes to me instead of Vanessa. When someone cries around him, he points it out but doesn't really go to the person and hugs the person. Vanessa, who is only 4, will do that. When Vanessa is watching a movie and something bad is going to happen, she covers her eyes as she can put herself in that actor's shoes. Jonathan just watches what is going on, and may get scared, but does not put himself in the actor's shoes. Or if someone is sleeping, he doesn't care to wake them up. Vanessa on the other hand is very gentle.
Dyslexia: as part of 1st grade, Jonathan has to read for 15 minutes every day. We read at night and I noticed the past week that he skips words, reverses words and puts words where they don't belong. I need to put my finger on each word so he can concentrate.
Eye contact: his eye contact is odd. His eye contact is best when he is listening to instructions or comments, but he has very poor eye contact when he speaks. I keep forcing the issue and tell him "look at me" every time I remember to. It is hard for him. Facial expression looks a bit weird when he does engage in "forced" eye contact. It is like his eyes are looking at me, but his sight is lost somewhere. But because he has fairly good eye contact when he is listening (his expression is normal), most Drs. make a note on this behavior as "good eye contact".

I will continue with the therapies that I have in place, and will continue to look for new and innovative ideas. I am not sure how much actual brain damage there is and how much of that damage can be "reversed" as Yasko puts it. But I guess that is my quest.

New observations:
I started him on diflucan last week and his stools are getting better. I am also waiting for the Listening Therapy home program which should arrive sometime soon. I am considering, after HBOT is over, to do a few neurofeedback sessions at 7am so he doesn't miss school. That may help with some of those brain connections. I am also considering re-doing Yasko's nutrigenomic test since there are a few new mutations that I don't know about. Always looking for new alternatives.

(HBOT 149) - 4 Years Ago Today

2008-09-24T21:50:00.002-05:00

4 years ago today, Jonathan was diagnosed with Autism. It was a Friday, 11am. I remember it as if it was yesterday. After spending a week long vacation with our best friends and their kids, we noticed something was very very wrong and different with Jonathan. We spoke with his pediatrician a week after we returned from vacation. Finally, after a year of being told that “boys are always delayed and he will come out of his “universal stage””, he referred us to a pediatric neurologist who, on September 24th 2004, gave us the devastating news. “Your son has autism. A life-long disability. He will need to be institutionalized”. Our lives changed that day!

4 years later, looking back, it is amazing everything that has happened and how different things are today. It has been a true marathon and we have not reached the end-line, but I feel we are getting closer and life has a brighter future.

Today we went to see Jonathan's DAN! Dr. When we arrived, Jonathan asked me in front of the Dr. if he was going to get blood today. And I asked the Dr. He said no because we had done that before, so Jonathan looked at me and smiled. He was not anxious though, nor was he hyper or bouncy. The Dr. asked him how he was and started asking some questions about school, what he did during school, what he likes to do, how many friends he has, etc. They had a nice conversation. Jonathan was engaged and responded well. Good eye contact. Did not get up in the middle of the conversation and left the Dr. talking or avoided talking to the Dr. altogether like he has done in the past. He had to think hard on a couple of questions, but answered them and kept listening and answering. I knew the Dr. was trying to assess where he is, and I felt so proud of my baby. A dream come true. The Dr. turned to me and said "amazing, simply amazing. I can't believe I am having a conversation with the same kid that 4 years ago was diagnosed with autism. I am very proud of him and I am very proud of you. You did it".

We spoke about my concerns: (1) language; (2) attention; (3) gut issues; (4) humming.

For language, I told him that I felt like Jonathan was learning a foreign language. He inverts some words and has trouble sometimes putting the sentences together. Also understanding some language, primarily spoken. And the Dr. said that he indeed is learning a new language. Since he missed that growing up, now he is learning. But he will eventually catch up since he can communicate simple and some slightly complex thoughts. He recommended that I increase the speech therapy. He also agreed to continue with the Listening Program. We are starting the home program in 2 weeks.
For attention, this is a major concern for me, since he misses out on instructions. He is easily distracted. I told him that I didn't want Ritalin. Jonathan got to where he is without Ritalin, and I am sure not going to give it to him now. He concurred. We need to continue to fix his biomedical problems so that his body can relax and pay more attention.
For Gut issues, he got the CDSA results and his gut has high yeast. I knew it. He gave me diflucan again. His liver enzymes are back to normal, so it is safe to start it up again, and also told me to start him back on IgG2000. I also need to change probiotics. I give him VSL #3 which is very strong.
For humming, he didn't have much input. It is the only stim that Jonathan still has and because the EEG showed tons of activity in his brain that he is not filtering (for whatever physical or environmental reason), this seems to be his way to control it.

I told him that I want to do Yasko's Advanced Language Program with stem cells and although he has not tried it, he told me that he would be very interested in my feedback. It may help with more than just language from what I read.

Another thing he noticed is that Jonathan's voice intonation is not robotic anymore. That was one of the first things he noticed. His voice is not flat anymore. His tone varies appropriately. He asked me what I thought contributed to that dramatic change and I told him that I thought it was the Listening Program (based on the Tomatis' protocol). Because we have done over 140 HBOT dives and the tone never improved. But in a matter of a month after a 10-day session of the Listening Therapy, Jonathan's voice has pretty good intonation.

******************Unofficial Diagnosis Change******************

Even though this Dr. told me back in April that Jonathan had a future and that he would change the diagnosis to Aspergers, yesterday he told me that he would even drop that diagnosis altogether. My heart sank in a good way. "I did it". The Dr. told me that he completely disagrees with Children's Hospital's diagnosis and that I should look into getting a second opinion. “This child does not have autism anymore. Not even aspergers”. I told him that I will leave the Dx as is for now so he can get the speech support he still needs. But I will get a second opinion soon.

So in a matter of 4 months, he went from aspergers to no autism. And although this is not the "official" diagnosis, it made me feel very optimistic. It only matters because it is today, exactly 4 years later, that I get a “Dr.’s” opinion again. And this time, the news is very positive and optimistic.

In my eyes, we are starting a new phase. He may not have autism anymore, but he is still somewhere in the spectrum. His autism has moved within the spectrum into some type of ADD/Language Disorder. But I am optimistic that this is the tail-end and we will be able to help him control ADD type behaviors and improve his language so he can be successful in life. Thankfully, Yasko treats most learning disabilities the same way. So I am going back to Yasko. She has new research, new mutations, and new protocols and as soon as I recover from the 40 days of HBOT (sleep deprivation), I am going to start the new ALP protocol.

We will continue to see this DAN! Dr. until I can take him off all supplements. So we still have some more months to go.

A note to my husband: no, we are not stopping the interventions because the Dr. said that we did it. We need to fix the language and attention problems before we count victory.

Thank you for reading and for being a part of this recovery journal. This journey, although hard and overwhelming, has been very educational and very enriching.

(HBOT 146) - Language Improvements

2008-09-21T20:40:00.012-05:00

Jonathan and Mommy inside the HBOT chamber. I give this chamber a very large credit towards Jonathan's recovery. 140+ hours.

During dinner tonight, Jonathan said "mommy, does Maine have a beach?" and I asked him why he was asking me that question and he said "because Maine does not have another state to its right. What about Florida and California?" and that blew my mind. He is definitely making some major brain connections, probably beyond my understanding.

Today, both Javier and I noticed that his language has improved. His intonation is much better. He does not sound so robotic anymore. And the verb tenses are more accurate. Is it the HBOT or the Listening Therapy or both? Who knows. Whatever it is, it is working.

Yesterday, we spent the day out at friends house, and he played beautifully with all the kids. Better than ever because he normally gets so bossy that the other kids push him to the side. But yesterday he just played along really well, never showed a moment of boresome or tiredness. And used language very efficiently to communicate. Yesterday I would say is the most "neuro-typical" I have seen him be. A great feeling.

The things that still make his voice sound a bit flat or strange is that he would say for instance "I do not know" instead of "I don't know", or "I cannot do that" instead of "I can't do that". But he is speaking with more confidence, so these are not as noticeable.

Today, he had swimming lessons and we were pretty shocked at how well he is doing in just 3-45 minute sessions he has had. The teacher does not know he has autism and talks to Jonathan like he would to any of the other kids and Jonathan responds and follows the instructions. As a matter of fact, they are having more trouble with other kids understanding and following instructions than with Jonathan.

Today we also noticed that he was a bit more distracted than normal, yet less hyper.

Improvements:

Language (expressive): this week we noticed a huge improvement in his intonation, sentense structure and fluency.
Language (receptive/comprehension): I don't have to rephrase as much anymore.
Auditory Memory: I can give him 3 instructions at a time and 2 out of 3 times he gets them right.
OCD: his normal obsessions have minimized. He only played less than 1 hour of Nintendo Wii each day. And he played a bit with a couple of games in his dad's iPhone, but not obsessive.

Areas of concern (besides language):

Stims: He is humming more than ever. I keep telling him "you are humming" and he goes "ugh!", he stops for a few seconds and starts again. Unless he is watching a movie or playing a game, he hums. Even when doing pretend play on his own. If he has to converse, he doesn't. It seems as though his brain is so active that he needs to hum to keep it under control. That is my hypothesis.
Bowel Movements: still very loose. We are going to see his DAN! this wednesday. I sent in CDSA 2 weeks ago and I hope it will arrive by the time when go.
Attention: he seems to be more distracted than usual.
Sensory: he needs sensory input. He keeps moving, rocking.

(NO HBOT) - Distracted and Hyper

2008-09-20T00:38:00.002-05:00

Jonathan is a great HBOT responder. And in my observations, he normally responds right around the same amount of dives. Right around the 20th day, Jonathan gets hyper and absentminded. It has happened on all sessions. We completed 25 dives and Jonathan has been very distracted since Monday (his 21st dive in this 4th session). So it is nice to see some reactions, because it means that there will be some improvements soon.

Thank you Cindy for your kind words in my previous blog. I am hard on myself. Thanks for the hugs and kisses.

I am much better. And I realized that the lack of sleep and exercise, and the horrible diet I am following (skipping meals and eating tons of chips) were probably also a big influence in my nervous breakdown. Since then, I have been eating better (except today I skipped lunch again) and I started taking vitamin and minerals. That has given me a huge booster. I don't feel as tired and sad. I don't feel sad at all.

And today I saw Jonathan again with my optimistic eyes. In the morning, as we were all getting ready to leave, Vanessa left her blanket in the house. Daddy and Vanessa were outside in the garage getting ready to leave. I asked Jonathan to pick it up and take it to Daddy. He did it and came back in when I realized that Vanessa's change of clothes were also inside the house. I gave them to Jonathan and told him to run outside to catch daddy before he left. Daddy was pulling out and stopped when saw Jonathan. He took the bag and told Jonathan to get back inside the house so he could close the garage. He waited for Jonathan to be up the steps and closed the garage door. Jonathan came inside the house and told me that daddy was gone and he had given him Vanessa's change of clothes and that we were late. So I grabbed my PC, purse, he grabbed his backpack and we left. But while Jonathan was out in the garage I realized how close to being "neuro-typical" he has become. He can do what I ask him and still be independent and responsible. I don't fear that he is going to run out to the streets and get run by a car. That is typical of an autistic child. To run without understanding danger or the unknown.

This evening he surprised me again. I heard the kids playing and they normally play pretend where Vanessa is a character and Jonathan is another. So as I heard their conversations, I figured it was because they were playing mom and dad as they normally do. But when I got close, I learned that they were using Vanessa' tiny dolls and started a soap opera of their own. That really we a wonderful thing to see.

Thanks for reading.

(HBOT 143) - Lots of Auditory Processing Needed

2008-09-16T22:45:00.002-05:00

Today I feel like venting. I am normally very positive and optimistic, but today got to me. Just like that day I went to Children's Hospital.

As part of his first grade homework, Jonathan has to read (on his own) every day for 15 minutes and record it in a log. We are reading the Magic Tree House book number 1. I know that it is an advanced book, but he can read it quite well. So I decided to read that book instead of other easier ones because this book has very few pictures in it. I want Jonathan to work hard at imagining what he is reading. Once of the comments I received from both evaluations is that Jonathan is very visual (biggest strength) but has auditory processing issues. So if he cannot see the picture, he has to work harder to comprehend what he is reading.

Last night, Jonathan and I read again but he was so tired that he did not want to read. So last night, I read one chapter to him. Stopping after every paragraph to ask him what is going on. He did not get a word. He did not comprehend anything I said. And it stroke me that he could comprehend fairly well if he read it by himself, even without the pictures, but not when I read the book.

Today I had my follow-up meeting with the auditory processing therapist and she told me that Jonathan's biggest issues is his auditory processing. This affects comprehension, language, attention, etc. She suggested an intense home program for 8 weeks, 4 weeks off and 8 more weeks and return for a re-evaluation next year and another boost. She explained that the reason why Jonathan can comprehend more when he reads than when I read is because there is an extra step that his brain has to deal with when the sound comes from someone other than himself. And he is having serious trouble decoding other people's voices and putting them in organized input in his brain.

I was so thankful that I know better what I need to target, yet furious with myself for not having enough time to dedicate it to research and to working with him when he is back from school. My job is more demanding every day. I can't breathe I am so busy. I hardly even eat lunch. And it bothers me to be in this situation. He needs me so much right now. And with this market the way it is, I cannot imagine being able to find another job. I simply felt very sad and impotent today and I hate feeling this way.

The other thing that bothers me is all the false positives that people like to give. I have been hearing this "he is going to be okay. he is one of those kids that will recover. he is going to make it. I don't say this about all the kids that I see, but Jonathan is definitely within the kids that will come out of this. etc". Over and over I hear these comments from doctors and therapists, and yet he is not out of it. As a matter of fact, his DAN! Dr. who told me when he first saw him that he didn't have autism, later told me to come to terms with the fact that he would always be on the spectrum. And the Children's Dr. who told me that she could change the diagnosis but didn't want to so I could get the services, told me that I would not need to come back ever for a re-eval because he is where he is. So I need to fix the problem. If I have gotten this far, I need to finish it. But I am not sure how to get out of my current situation. I guess time will tell.

He was very absentminded today and hummed a great deal. He also rocked his legs a lot.

(HBOT 141) - Second Week at School

2008-09-13T21:46:00.003-05:00

Jonathan is adjusting well at school. They moved him a bit closer to the teacher's desk, but still not right next to her. We went to "back to school night" and saw where he sits. He can see the teacher easily. What worries me is whether she can see him. Depending on how he does this first quarter, I will request that his desk be moved again to even closer.

He is not as excited about 1st grade as he was about Kindergarten. We need to wait and see. I like his new teacher, but it is too soon for me to know. And since I cannot volunteer time daily to get to know her better because my job is so demanding I have very little flexibility, I need to wait and see.

I am very very worried about his very soft stools. And he is a bit extra sensitive again, which can only mean yeast. I started him on s. bolardis probiotics 3 days ago. But the consistency is still very soft, almost diarhea. I am scared that his colon has severe inflamation and I am not sure how to make it better yet. I sent in a stool test last Monday and I am waiting its results. We are due to see his DAN! Dr. in 1.5 weeks and hopefully the results will be in so we can get this kid's gut back to normal.

(HBOT 136) - First Week at School

2008-09-07T21:08:00.004-05:00

Jonathan had a very successful first week at school. He was energized and happy to go back to school. I had a couple of comments from both the 1st grade teacher and the special ed teacher in charge of his IEP.

1st Grade Teacher:
"I have to tell you that I absolutely adore Jonathan. He is so good natured and he works hard. Any first grade teacher would be impressed by his positive attitude. We are still in our "settling in" mode, but we did do a first writing sample and I was impressed with his effort.

Please give him a pat on the back for me!"

Special Educator:
"Jonathan is having a fantastic first week of school! He has been staying on task and following directions. It seems like Jonathan is smoothly transitioning to the first grade."

This is just the first week, and I know that he will get bored and start to shift if they teacher doesn't keep him challenges and happy. But this is a great start.

Observations:

Positive - expressive language: His language this weekend had a bit of a twist. He spoke with more complex meaning. On Saturday morning, he came to the bathroom and told me that he wanted to play Playstation. I told him that he could and I asked him if he could turn it on by himself of if he needed help. He said "mommy, I can turn it on by myself, but if I need help, I will come get you, ok?". The "but if" statement is new. That is awesome!!!!.

HBOT - everything is going well. Uneventful. We have already completed 16 dives.

Stool Test - I collected samples to send in for a comprehensive stool analysis. He continues to have very soft (almost watery) stools causing him to have accidents in his underwear. I will send it in tomorrow.

(HBOT 130) - Listening Therapy Ended

2008-08-30T21:37:00.008-05:00

It has been 10 days since I last blogged. A few things have happened. I will try to segregate them as best as I can.

The Listenting Program therapy (new version of Tomatis)
Jonathan completed 10 days of an intense TLP therapy. Because he had gone through 7 loops of Tomatis before, the therapist believed that a 10-day refresher focusing on his weak areas would be best.

He did quite well, but I don't really see much of a change in him. However, I know that he usually reacts 4 to 6 weeks after therapy is complete. So I should see (hopefully) some nice gains in a few weeks. I have a follow up meeting on Sept. 16 to talk about what they observed and how he reacted to the therapy. I will also take an opportunity to talk about their report.

Someone asked a question in my previous blog about being able to use headphones after this therapy. This therapy is pretty save and does not disrupt the ear as Berard's therapy does. Therefore, yes you can use headphones safely after the therapy is done. People that decide to use Berard's therapy, cannot use headphones after completing the therapy. Depending on the problem that is being targetted, Berard's therapy might be better. Just research and ask lots of questions before picking one versus the other. Here is what I found on their website: "It is strongly suggested that an individual who completes the Berard AIT program not wear headphones to listen to music. It is permissible to use headphones for listening to books on tape, for example, or to do spelling drills. Dr. Berard found that listening to music on headphones minimized the efficacy of the training."

Behavioral changes and other observations
Jonathan has been a bit less focused the past week and has terrible diarrhea. I got the CDSA kit and I am going to collect his stools this weekend to figure out what is going on. I suspect yeast overgrowth. But it is so bad, that not even he can control it. and I am concerned about first grade. He has accidents every day and he is very concerned when he dirties his underware. I need to fix that problem asap.

Also, last night (08/29/08), he had a very high fever of 103.8. After a couple of hours, it came down to 101.2. After another 2 hours, it came down totally. I gave him motrin and 3 hours later tylenol. This morning, he had a fever of 101.8. I gave him some motrin and sent him to HBOT (I checked first to make sure it was okay). He doesn't have any upper respiratory problems, no ear infections, no pain in his body whatsoever. Very strange. We went to a friend's house, and this afternoon he didn't have any fever at all. Very odd.

He has also been acting very silly. The auditory processing therapist noticed it 2 days before he finished. It could be a combination of gut issues, HBOT and auditory therapy regression. His regression however seems so minor compared to what regressions used to look like 1 or 2 years ago. So I don't mind them too much.

The Listening Program evaluation summary
I received the report of the assessment that was conductec on July 24, 2008. I was both pleased and worried about the results. I liked that it gives me more information that I can use to continue this road to recovery. Because the more concrete the information you have, the better your possibility of finding alternative approaches to solving the issues.

Here are the areas that he was tested on and the results:

FAIR: The SCAN Test of Auditory Processing Disorders: This test consists of one syllable words that are filtered to pass through information of frequencies of 1000 Hz and below. These words are presented to one ear at a time under headphones. This task requires the listener to use "auditory closure" skills in order to complete a word. Poor functioning of this skill could result, for example, in difficulty understanding a teacher who is speaking with histher back to the class when writing on the chalkboard (especially when the child is seated toward the back of the room), or difficulty understanding someone who has an accent or speaks too rapidly. Jonathan's performance on this test revealed a raw score of 29, placing him in the 371h percentile, which is essentially within normal limits for auditory closure skills.
POOR: Auditory Figure Ground test: consists of one syllable words presented to one ear with a competing background of people talking.Jonathan's raw score was 22, which places him in the 5" percentile, which is below normal limits for single syllable words. These Results indicate that Jonathan has great difficulty filtering out unnecessary information and focusing on the primary message when background noise is present.
POOR: Competing Words test: It consists of one syllable words presented to each ear dichotically. This task required Jonathan to repeat different words that are said simultaneously to each ear, meaning one word is presented to the right ear and a second word is presented to the left ear at the same time. Jonathan's raw score on this was 21, placing him in the 91h percentile, which is below normal limits. This skill should be monitored closely as it emerges at around 5-6 years of age . These test results indicate weaknesses in interhemisoheric communication between ears. If the hemispheres are unable to share linguistic/auditory information in an efficient and symmetrical manner, then hig-h er order skills such as attention, focus and working memory may be compromised. THIS IS ONE OF MY BIGGEST WORRIES. This explains a great deal about why Jonathan doesn't understand certain things.
POOR: Staggered Spondaic Word test (SSW): This test is composed of two spondaic words (two syllable words with equal stress to both syllables, i.e. playground, ice cream) presented in a "staggered" manner for each ear. The SSW is a dichotic listening test. An example of the presentation method is:

----------1st time frame----2nd time frame----- 3rd time frame
right ear -----------play-----------ground
left ear---------------------------------ice--------------cream

A score can be obtained for each ear in a competing and non-competing listening situation. Jonathan scored below normal limits on this task. For a child his age he should have a maximum of 38 errors and he had 50 errors. He had difficulty on this test because there is more information to process and verbally recall in competing environments. Test results indicate a breakdown interhemispheric communication between ears.
GOOD: The Test of Auditory Analysis Skills test: It was administered to test Jonathan's auditory perceptual skills and to identify goals for teaching these skills. This test involves sorting out the individual sounds within a spoken work. For example: Say, "cowboy". "Now say it again and don't say boy". Jonathan scored at the second grade level for this test indicating some excellent higher level decoding skills.
GOOD: The Beny Test of Visual Motor Integration (VMI), Visual Perceptual, and Motor Coordination test: The Vh4I requires the child to copy a developmental sequence of geometric forms with a pencil. This test is designed to assess the extent to which the child can integrate their visual and motor abilities. Jonathan had a raw score of 15 points, which gives him an age equivalent of 6 years, 6 months old.
GOOD: Two supplemental standardized tests -(1) Visual Perception and Motor Coordimation are administered to compare Jonathan's individual VMI results with pure visual and motor performances. On the Visual Perceptual Test Jonathan had a raw score of 21 points, which gives him an age equivalent of 9 years, 8 months old. (2) The Motor Coordination Test requires an individual to connect the dots, while staying within the boundaries of the shape. Jonathan had a raw score of 21 points, which gives him an age equivalent of 9 years, 2 month old. These tests findings indicate above average visual motor skills and above average visual perceptual and motor coordination skills. However, it should also be reported that when visual eye tracking was assessed Jonathan had difficulty dissociating eye movement from whole head movement. Additionally, he had difficulty with eye convergence at near point.
POOR: Vestibular processing. The vestibular system detects motion and gravity and is an individual's main balance organ. The vestibular sense also helps maintain muscle tone, the coordination of the two sides of the body, arousal level, and holds the head up against gravity. It automatically coordinates the movements of one's eyes, head, and body. The proprioceptive system gives an individual feedback as to where your muscles and joints are in space (spatial awareness). During the assessment Jonathan was unable to assume and maintain a prone extension posture. This indicates low muscle tone in his extensor muscles. However, he was able to assume and maintain a supine flexion posture for the full 20 seconds; indicating adequate tone in his flexor muscles. Jonathan demonstrated difficulty with static standing balance both with his eyes open and closed. With his eyes open he was only able to balance on his left foot for 6 seconds and his right foot for 5 seconds. With his eyes closed he was unable to balance on either foot for more then 3 seconds. Overall, Jonathan appears to present with depressed processing within his vestibular/proprioceptive system.
FAIR to POOR: Motor planning or praxis is the ability to spontaneously sequence and organize movements in a coordinated manner. Imitating postures is a measure of motor planning abilities. Jonathan was accurately able to imitate simple gross motor postures, but was slow in his execution. It should be noted that he appeared to be cog~tivelyth inking through each movement prior to executing the posture. He clearly had a more challenging time organizing his body to imitate fine motor postures. Jonathan had easier time sequencing the movements of his thumb to opposing fingers. He was able to complete this task with one and two hands, both with his eyes open and closed. Motor planning difficulties may be contributing to the speed at which he is able to complete new or unfamiliar activities.

Their recommendations were:

Jonathan should receive preferential seating in all academic settings to facilitate attention and obtain the best auditory and visual advantage.
Competing auditory information should be minimized whenever possible. Frequent checks should be made to assure what is heard. Auditory information shoild be rephrased rather than just repeated when communicati& breaks down. Multiple step instructions should also be broken down into parts and repeated when necessary.
Given Jonathan's weaknesses in auditory processing, it is highly recommended that there is simultaneous visual cue in a learning environment to supplement the auditory message as much as possible.
A multi-sensory approach should be utilized when teaching Jonathan new information.
It is imperative that Jonathan has an appropriate sensory diet throughout his school day. The more sensor-y in-p ut Jonathan receives during- his day the more regulated he will feel; and consequently present with better attention.
Jonathan should continue to receive occupational and speech therapy.

It was great to have this evaluation and recommendations done. The afternoon I read this report, I also met with the Children's Hospital doctor that saw him on 08/04/08. She, in her own words, gave me the same comments and recommendations that the auditory processing therapist gave me and added "looking into medicine" for minor attention problems. BTW, my meeting with the Children's Hospital Dr. went well because it was very focused. She did tell me that she could drop the diagnosis today but she wasn't going to because of his language deficiencies. If she did, we would not get the support we need to address his receptive and expressive language problems. So, after an hour meeting, I left feeling greatful for continuing to have the diagnosis knowing that it is only a language issue at this point. He does have "social cognition" areas that need to be addressed, but she believes it is also due to his language deficiencies. She told me to work on the problem areas and come back in a couple of years. She highly recommended that I look into RDI and gave me the name of a therapist that will hopefully be covered by insurance, also told me to have 2 hours of one-on-one speech therapy and 1 hour of group therapy a week and added looking into medicine.

However, these recommendations are not going to "recover" him. Just help some. So besides these recommendations (which I clearly stated to the 1st grade teacher and special ed last Thursday), I need to explore other avenues. I am still researching. But I am greatful for this indepth evaluation because between this, the neurofeedback EEG and the Children's Hospitals observations, I again have a goal. I will email Yasko for her feedback.

(HBOT 122) Camp Ended, HBOT and Tomatis Started

2008-08-20T22:42:00.005-05:00

Jonathan concluded his summer camp last Friday with a very nice note from one of his councelors. It is so great to get such nice feedback. Jonathan became very popular in the recreation center. Even though I signed him up for 7 different camps, the councelors across classes got to know him. He was always happy to go, engaged and eager to join the teams. He always had 1 or 2 friends at the end of each week. He doesn't carry the friendship one step further to try to stay in touch or ask them over to his house, but one step at a time. For now, the fact that he makes friends and gets along with his peers and councelors is a huge step.

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Listening Program (new Tomatis) Therapy started on 08/18/08 for 10 days:

In trying to continue to help Jonathan improve his skills and recover from autistic symptoms such as language delay, flat voice and some verbal stims, we decided to do another loop of auditory processing therapy. He did 7 loops 3 years ago. Each loop was 8 days with a 2 month break.

This therapy is a bit different and it is targeting his areas of concerns. It also runs for 10 days and his next session (or re-evaluation) would be in 6 months. He has had 3 sessions already. The therapists are giving positive feedback. However, it is hard to tell if it is helping. As any therapy, we need to wait a few days or weeks after it is over to see results.

******************
HBOT Days 121 and 122

We are back to Hyperbarics Oxygen Therapy. It was a last minute decision based on our frustration from our meeting with Children's Hospital, our rush against time, and our continued drive to recover Jonathan. HBOT has been a critical, almost miraculous, therapy for Jonathan and I wanted to do another set now before he starts 1st grade. The sessions will end October 3rd or 4th, a month after school starts, but the potential benefit a month later is huge.

We are rushing against time. Pragmatics is a problem and although I want to do neurofeedback, something deep inside tells me that I need to do this set of HBOT and Tomatis now and leave neurofeedback to next year. It is a hunch, but I need to follow my instincts. Besides, there is only so much that we can afford.

He has been doing fine. He is a veteran, so we just go in, watch a movie and leave. No problems with ears, or behaviors.

*******************
We took Jonathan on Saturday to Quest Labs to get some blood work done (CBC, Vit D, Vit A, Cholesterol and a couple more) His DAN! Dr. communicated with me yesterday to let me know that he only received one test result and believes that Quest did not do the other ones. I am going on Saturday to find out what happened.

However, his DAN! Dr. told me that his SGOT and Alkaline Phosphatase were both elevated which is more likely caused by a growth spurt than an actual liver function abnormality. Other liver functions, especially the SGPT, were normal.

Since we started DMPS and EDTA suppositories again, knowing if the liver is functioning well and normally is critical.

*******************
Jonathan's stools keep getting worse despite giving him Candex and VSL #3 (the strongest probiotics I have ever given him - 225 billion microorganism). I sent a note to his DAN! to get a CDSA test kit to find out what else he has in his gut. This is worrying me.

*******************
The only other item I want to note is that Jonathan's humming has turned into a high pitched noise. He is constantly making it and at times I notice that he hums a bit and then he makes the noise. It is driving me crazy. Humming did not seem as odd and autistic as the high pitched voice. I will record him to keep audio record of this. I don't know why he is doing this. It started last week. The only new thing is EDTA and DMPS on 08/04/08.

Tae Kwon Do - Green Belt!!!!

2008-08-11T22:18:00.007-05:00

Jonathan took a Tae Kwon Do test last week to earn his green belt and he passed it. He and Vanessa took the test the same day. Jonathan had a little bit of trouble at first. He got confused. But as soon as he sat down and another child did his routine, the master called Jonathan and he did his perfectly.

**************

On a separate note, this is Jonathan's last week at camp. He has enjoyed each week and the counselors have given me very good feedback, which is very encouraging.

**************

With regards to the diagnosis, we have a meeting on the 21st to receive the "formal" results. However, I am already starting to be skeptical. The Dr. called me today to tell me that the speech pathologist had an opening this Thursday to evaluate Jonathan. I immediately questioned her and told her that I thought part of the 6-hour session we had last week was to do a speech evaluation and her response is that she did a high level evaluation and it is not in depth enough to tell me where he is and that I need to take him to a specialist. I swear my blood started to boil and I told her that I didn't have time this Thursday to take him. She told me that on the 21st she would give me her recommendations.

I have to admit that I am disappointed with this Dr. Very disappointed. She kept emphasizing that she is very amazed about Jonathan's progress, particularly after reading the first report written 3 years ago, yet her objectivity is questionable (in my mind).

I have gotten over that bad taste though. I know my son better than she does. I know how bad he was 3 years ago. I know he is mainstreamed and requires little support now. I know he is still somewhere in the spectrum. I just don't agree with her on where on the spectrum he is. And that is okay. The whole spectrum evaluation is vague in my opinion. To give you an idea, she told us last week that after talking to the other Dr., they believe that he still has some "repetitive" behaviors that make him fall in the "autism" bucket because he has a bit of echolalia. And their evaluation of his echolalia is that he sometimes repeats after someone tells him something. If it wasn't for that minor observation, she would have moved him under PDD-NOS. So I paid attention after that, and noticed that he repeats, but he repeats in a question format, not as a straight repeat with no intonation. That was my first observation. Then I noticed that we all do that to him and Vanessa. Then I noticed that it wasn't just us (parents and grandma), but we went to visit my sister-in-law and she and her husband would also repeat in amazement whenever the kids said something that they felt was important. So we started making jokes that we all must have autism because we all repeat. And even Vanessa repeats sometimes. So my point is that his so called "echolalia" may not be such. It is a behavior that he learned by imitating because he repeats the phrase at times as a question as we all do. I agree that it is not the best way to use language, but it is not inappropriate either. Hence my quest for helping him with language. But all his other major "autistic" behaviors have disappeared (except for his humming which drives me crazy at times)

But what bothers me is that I was trying to get her to recommend more than 1 hour a week of speech so I can get the insurance to pay and now she is going to send me to yet another specialist. What a waste of my time.

Neuropsychological Evaluation

2008-08-04T15:32:00.006-05:00

Preliminary Diagnosis: keeps High Functioning Autism (HFA)

We went today to Children's Hospital to have Jonathan re-evaluated. We spent 6 hours with the 2 doctors that saw him. One interviewed both daddy and me while the other evaluated Jonathan. She did a number of cognitive tests. Towards the end, the Dr. that interviewed us worked with Jonathan for about 1 hour.

After our interview was over, she scheduled an appointment for August 21st to review the results. They use a computer program to analyze the data and they need time to enter all the results and review the output before they can tell us what is going on. However, she did tell us that although Jonathan has made outstanding progress in the past 3 years, he is still on the spectrum. She mentioned that she was going to recommend they leave the diagnosis as High Functioning Autism although PDD-NOS is most likely the most appropriate diagnosis at the moment. But since he has a little bit of speech echolalia which is considered repetitive behavior (this is the only repetitive behavior they could find), she is going to use that to leave the diagnosis as is. Her reasoning is that it will allows us to continue to receive additional help.

On one end, I understand what she is saying, but given that we have gotten very little support from the government with the diagnosis (actually, I avoid mentioning it to the insurance because they will reject claims) and the school recently denied summer school services because he does not qualify (too high functioning) to receive county services other than speech, it bothers me that she is not changing the diagnosis to PDD-NOS. I may fight it on the 21st. It marks progress in my mind, which after all the hard work, we deserve a step above HFA. Actually, I would say he is High Functioning PDD-NOS, because there are different levels of severity in PDD-NOS as well and he is high functioning despite the area in the spectrum where he might fall. Perhaps the original diagnosis in 2005 was incorrect and should have not been HFA. They only gave it to him because he smiled and at times would look at the Drs. in the eyes. But he was sooooo lost and had soooo many sensory problems, that all the therapists that we had at the time mentioned to us that he was more severe than HFA. So one of the two diagnosis is wrong, because I don't understand how after the 180-degree progress he has made in 3 years, he is still in the same bucket.

In my mind, I knew he is PDD-NOS. I mentioned it in one of my blogs a few weeks back. His DAN! thought he was going to get re-diagnosed as Aspergers, but I knew he is not Aspergers. Aspies have different behaviors. They are subject matter experts in a particular topic and speak like professors. Jonathan does not fall in that category. I actually discussed it with the Dr. this morning and after a brief break that we had, she consulted with the other therapist and then told me that he does not qualify for Aspergers for the same reasons I just mentioned above. I have read enough literature to know that he is still in the spectrum and given where he is right now (particularly in speech and some social behaviors), but the improvements or total recovery on the repetitive behaviors, sensory problems and anxieties, that puts him in PDD-NOS. It relieves me that today's Dr. also agrees that PDD-NOS is probably the best diagnosis for him right now (even if she doesn't put it in the report. We'll see)

Somehow, deep inside, I was hoping the diagnosis would change to something that would show significant progress. I need it. But on the other hand, I am happy that Javier came with me and heard from the Dr. that Jonathan is still on the spectrum because he thought (or perhaps hoped) that Jonathan had recovered although I kept telling him that he still needs more work. We have been talking about the types of therapies that I would to do the next year to help Jonathan keep advancing (more auditory processing, neurofeedback, more HBOT, and continued supplements) and Javier kept asking me how much more we have to do because compared to how he used to be, he seems recovered. Javier's biggest worry is our financial situation since all these therapies have been very expensive and we have received very little coverage from our insurance and are in major debt. But today was an eye opener and the bottle of Johny Walker Blue Label will remain closed until we get that letter from Children's Hospital. I need to strategize and I know we will have to make some sacrifices because we cannot continue to do these therapies without a major financial impact. But I want to see him fully recovered. It is my dream and I hope to see it one day. I want my kids to have a normal life, to have friends, do well at school and be happy.

Busy but Fun Weekend

2008-08-03T21:51:00.004-05:00

This weekend we were very busy. Spent all day out. On Saturday, we started by going very early to the shopping mall to get daddy an iPhone. Jonathan loves electronics and he was very excited to help daddy pick out all the accessories. After that, we went to the movies to see Flying to the Moon preview. Vanessa got very bored. But Jonathan loved it and was totally into it. He really liked the astronauts. After the movie was over, we went to eat lunch. Both kids wanted to go to the pool, but since we had just eaten lunch, we first went to Walmart to get the school supplies (that was very stressful - too crowded) and then we headed to the pool. We spent almost 2.5 hours at the pool and the kids loved every minute of it. Here is a 5 minute long video. They are starting to learn how to swim. They want to take lessons, which actually start September 7th.

Today, we had a birthday party at 10am at a moonbounce type place. The kids loved every minute. They played for 1.5 hours (and daddy joined them - I didn't have socks. That is why I didn't join them) and after that, they had pizza and cake. I wasn't too excited about all the gluten he ate, but I don't want to make him feel different since it is not hurting him nearly as much as it used to. Watch a short video below. I am into videos now because the kids love to watch them on TV after we take them. So I am going to start recording more often. After the party, we went to my cousin's house for an early dinner. The kids were very well behaved. I didn't have my camera with me to take pictures there unfortunately.

I am concerned that Jonathan's stools are softer day after day. This week he even had diarrhea and so did Vanessa (sorry to be graphic, but I want to log this because stool analysis is critical to the recovery process. They tell what is going on in the gut which is one of the main areas we target in biomedical interventions). I am going to stop by the Apothecary tomorrow and purchase strong probiotics (VSL #3) and start them on that (1 capsule for Jonathan and 1/2 for Vanessa). I am going to order a comprehensive stool test kit for Jonathan from his DAN! doctor. If Vanessa's stools don't get better (they are green - very strange), I'll ask her pediatrician to do a stool analysis before I order the same one I order for Jonathan.

I re-started Jonathan on DMPS suppositories yesterday (August 2, 2008).

Dancing & Gym Camp Act!

2008-08-01T16:31:00.003-05:00

Jonathan that a great week. Another camp (yes, he has attended 5 camps so far). He has adjusted very well to each one and has enjoyed them all. There is 1 more 2-week camp left and then he is not going to any more camps because he is going to be receiving auditory processing therapy for the last 2 weeks in august.

This week the camp was about dancing and gymnastics. They took the kids to a gym every day and showed them new things to do. Jonathan is better at climbing than gymnastic-type activities, but still enjoys them. Today they had an act for the parents to appreciate what they had learned in the week. They had a choreographed dance that they practiced every day and each kid had to show a gym-type move. It was quite entertaining.

Auditory Processing Evaluation

2008-07-26T23:16:00.004-05:00

I took Jonathan to an auditory processing and speech therapist for an evaluation on Thursday. Since my new goal is to fully recovery his language now that all his other autistic type symptoms are 90% recovered, my next approach is to go back to the beginning: Tomatis. We did 7 loops 3 years ago (each loop is 10 days with a 2-month break). That was the very first therapy we did after his diagnosis, even before we started the gluten free/casein free diet. And he was a good responder. No miracles, but good improvements were observed, particularly in the area of motor skills.

I know that language is the last thing to fully recover. He did 2.3 years of ABA and learned a large vocabulary from that. But even with speech therapy, his language is still not where it should be. He currently is 3 waiting lists for speech therapy. One is about 2 years old and they still have not placed him. Due to his school and activities schedule, I can only do late afternoons and speech therapists that participate in my insurance are booked. But he received speech at school plus as I mentioned above, 2.3 years of ABA.

My biggest concern is expressive language. He does not speak like a 6-year old. He speaks like someone that is learning a new language. He needs to think through his sentences before he speaks or when he speaks without thinking, we switches words and makes some grammatically mistakes. And his tone is someone flat - 80% of it lacks melody. My other biggest concern is that his DAN! Dr. said that his flat tone will probably stay forever. And since I am more optimistic than that, I need to find a way to bring melody to his voice. The fact that he can demonstrate that he is capable of speaking with melody leads me to believe that I can bring that out. But it won't be easy. That I know. I am shooting for 1.5 years.

So, my two choices right now (besides continuing biomedical interventions) are auditory processing and neurofeedback. I already did the neurofeedback evaluation and I need to find the time to take him to therapy sessions. The other important one is auditory processing. I took him for an evaluation and I was very happy with the outcome. I like knowing where the physical problems are so I can concentrate on those areas. I don't do well without a target.

During the evaluation, the first thing that both the Occupational Therapist (OT) and the Speech Therapist (ST) told me is that "there is no autism in him". The one therapist that first helped me back in 2004 when we did the first loop was still there. And she had tears in her eyes watching the new Jonathan speak to her. "He is talking!!!". She hadn't seen Jonathan in 2 years. But when she met him, things were really bad (and no language). So her comments are a great benchmark. I remember when Jonathan first communicated his feelings during the second loop through drawing a happy and sad face. She was there and was amazed to see that. Now, he was telling her all about summer camp, and played beautifully and did all the exercises they asked, was always engaged, happy, humorous, etc.

After the evaluation was done, the OT and ST explained the tests. In the visual evaluations, he did very well and rated as a 9 year old. Except for an exercise where he had to follow a pen with his eyes, and he had his whole head follow the pen. However, in his auditory processing and sequencing test, he only reached the standard deviation for 1 of the 5 major tests they did (was in the 47th percentile which is just 3 points below the standard deviation of 50 and very normal). The other 4 were below 10th percentile. They noticed that if they introduced visual help, he could do them and reach the 50th percentile. But ears only are not working optimally. That is great news so I can concentrate on this. It actually explains a lot.

They proposed one 10-day loop and a re-evaluation in 6 months with a home program. I am excited about it. I need to get everything setup to do it the last 2 weeks in august. I have confidence that the insurance will cover a large portion. Once this is done and I have received payments from the insurance, I'll do the neurofeedback.

The fact that these therapists told me that they don't see autism anymore (although they do see other problems like auditory processing and sequencing problem) is very encouraging. I am having Children's Hospital do a re-evaluation on August 4th. Same department that gave him the High Functioning Autism 3 years ago (almost a year after the first pediatric neurologist diagnosed him with severe autism). That way I can match apples to apples. I do believe he is still in the spectrum, he is still hyperlexic (reads and writes but has problems with pragmatics), has some social problems (particularly due to language), and has some obsessions. His DAN! believes he will be re-diagnosed with aspergers. I'll keep you all posted.

3 1/2 Weeks of Summer Camp Down

2008-07-23T22:51:00.002-05:00

It has been a while since I last updated the blog. Jonathan started a two-week sports camp and finished it and he did very well. I am very proud of him. He lost quite a few items in the process, but he loved it and learned so much. My heart filled of joy this past weekend when he asked me to play something and it was "rock, paper and scissors". He learned how to play that in the camp. He learned lots of games. Every morning, when I dropped him off, the kids were playing ball and a couple would call Jonathan up to come join them. That was music to my ears.

His receptive language has really improved tremendously. I know I keep saying that, but it seems better every week. This week he is attending a different camp. He got used to it very quickly. When I took him yesterday, the girl asked her a few questions about his classroom. He answered everything. Then she asked him for his last name and he told her without hesitation. I asked her how he was doing and she said that he was going great.

The most important thing to note in today's blog is that I got the results from the mitochondrial exam that was done a month ago and all the results were normal. One thing the Dr. noted is that Jonathan fits all the criteria for EDS (Ehlers-Danlos Syndrome) and in the report she encourages to keep him away from contact sports and to have his heart checked for a potential issue with the great vessels. I took him on Monday to a pediatric cardiologist who checked him with an EKG and an ultrasound. Everything was normal. The cardiologist suggested that we check again when he is a teenager, but for now he is totally normal. No signs of any type of heart abnormality.

The genetic Dr. concurred that Jonathan's history of low muscle tone could be an indicative of mitochondrial disorder, but since it cannot be accurately tested (not even with the muscle biopsy) and he seems pretty energetic now, she suggested that he keep him on the mito cocktail he is on and add creatinine. I haven't done that yet. She wanted to wait for the genetic test results to come back before going to different levels. She suggested that if I really wanted to test the mitochondrial theory, I could get an MRI done. But again, the treatment is the same mito cocktail I am already giving him. So I decided to wait for the genetic test results to arrive and if normal, I will just continue with my current plan. The results arrived today. "No evidence of an inborn error of metabolish was found". With that, I close this chapter and continue with other therapies.

Overall, Jonathan has improved in the past 3 weeks. Particularly his language has improved. He is very excited about summer camp. Has no anxiety. And when he comes homes, he does fairly well telling us about what he did. It is still all over the place, but he tries. When we ask him the names of friends, he tells us that he doesn't remember.

He is Making Comparisons

2008-07-14T09:31:00.002-05:00

Jonathan continues to come out of his bubble. Every day is a new experience for me. This morning, he and Vanessa were talking and she wanted to see his belly. Vanessa told him that her belly was smaller. And he said: "Vanessa, I am fatter than you. You are skinny" Then Vanessa said: "But mom is skinny too Jonathan" and he said: "Yes she is, but you are more skinny than mom". Then Vanessa said "but Dad is fat like you Jonathan" and Jonathan said "but that is fatter than me". Now, what kind of conversation is this for a 4 and 6 year old to have I ask? However, I enjoyed it. Then I told them that they were both fine and didn't need to worry about being fat or skinny, just being healthy. That they have to eat lots of fruits and vegetables.

Second Week at Summer Camp was Successfull

2008-07-11T21:40:00.005-05:00

I am learning so much from Jonathan and from life. This week has been particularly difficult, yet rewarding. One of Jonathan's uncle, daddy's older brother, passed away on July 4th. It has been a very sad week. Daddy is away until next Tuesday and I am home with the kids and my dad. My dad has been a tremendous help and company. The kids have been great. They miss daddy and Vanessa cries every day because she wants daddy, but they have behaved beautifully.

This week's summer camp has been different than what I expected and due to our recent loss, I had a mixture of feelings. A realization of what is important versus what is not. An appreciation for life and for what we have. Jonathan has been a little miracle in my life. He has taught me more about life than anything or anyone else without really knowing. Every day to me is like a little miracle. New words, no behaviors, the "awakening" phase as I call it. And Vanessa has also been a miracle in my life, complementing what Jonathan has given me. Her energy, happiness and charisma are contagious. She has been Jonathan's best therapist. And this week I have appreciated them more than before.

During this week’s camp, Jonathan had to really be on his own. I have been so scared, but I contained myself from pulling him and played it by ear. I wanted to push the envelope a bit more to see how much he can tolerate. And to my surprise, he has coped quite well. It is hard to fully know how he is doing compared to other NT kids since I don't get feedback or a report from the camp organizers. But since I don't get negative notes nor have I been called, I assume he has done well enough to fit in with the other 6 year-old kids.

Each day went something like this: I dropped him off at 9am every day. I signed him in their master book and he would put his backpack on the floor among all the other backpacks (at least 20 other ones) and would join the kids in the playground. They would remain in the playground until they were pulled together to board a school bus that would take them to a local elementary school. It was his responsibility to pay close attention and when his group was called, he had to go join Miss Shana and his classmates, without forgetting his backpack. And he did. They would remain in the elementary school until 11:45am, when they would return to the recreation center for lunch and afternoon activities. He had to feed himself (which he was very used to because at kindergarten he learned to do that) and clean after himself. I put 3 bottles of water in his backpack hoping that was enough for the day. He told me it was. In the afternoon, they would go to the indoor swimming pool for an hour. He had to change and put on his bathing suit all by himself, remember to put all his clothes in this backpack and put his backpack somewhere in the pool area. When the hour was over, he had to go to the boy’s bathroom, dry up on his own, and change his own clothes and put on his shoes, put all his wet clothes in the backpack and follow the group to another activity area. They were supervised but there was no hand holding from the leaders (I asked about this). The first day, he came home wet. It was a little bit of a mess. And he lost his snack bag and flip flops at the pool. As time has passed, he has learned to take care of his belongings, dry up better and change his clothes appropriately. So far, he recovered the flip flops but lost one of his bathing suits. And today, he came home wearing someone else' underwear. However, given the circumstances, I am very proud of his accomplishments. I honestly say that I underestimated his ability to take care of himself and his belonging and I will start to push him more to be more self-sufficient.

He told me today that he really likes summer camp. He has another week of sports camp next week. I am more comfortable now.

He is also more talkative this week. It could be because he is now spending 7 hours a day with other children, older than him in most cases and he is learning from them. This week he is very interested in watching Ben 10 on TV and he is really getting into it. He also told me today that he wanted to go see the journey to the center of the earth movie. And we are now having meaningful conversations like never before. We had a very long conversation for about 10 minutes on Wednesday regarding life and death. It was coincidental to our current circumstance because he doesn't know what is going on. But it was sparked by a Ben 10 episode when Ben 10's grandfather dies. The day after watching that episode, he asked out of the blue "mom, where do people go when they die?" As you can imagine, that caught me by total surprise. I said “to the sky” which is what we Hispanics believe in. He kept asking why. So I improvised some of my answers. This is a tremendous breakthrough. This is my "why is the sky blue" kind of why question. In my opinion, we have graduated from the “why” questions and need to continue to observe how the “how” questions mature and evolve.

He is also reasoning very well. A note to make is that although he is recovering and improving all around, he will always be a "numbers and letters" kind of kid. He may always carry the "aspergers" diagnosis (whenever he gets it, hopefully soon) because he is just so fascinated by numbers. His latest fascination is people's age. He wants to know everyone's age. But now, when he is pretending with Vanessa, he adjusts their ages depending on the game and makes sure that Vanessa is always 2 years younger than him. He says "well mommy, if I am 40 then Vanessa is 38". We went to his pediatrician’s office yesterday for his allergy shot, and he just spoke away with the nurse like never before. This nurse has administered the shots for the last 3 years and she knew Jonathan at his worse. Her mouth dropped after a few minutes into the conversation. He told her where daddy was and where he was going for camp, answered every question she asked and if she said something incorrect, he would politely tell her the correct answer, etc. Then he goes "hey Mrs. Karen, do you know how old my daddy is?" and she started guessing ages. He played along until the 4th miss, when he told her 36. Then she said "wow Jonathan, you know? I am 20 years older than your dad. Do you know how old I am?" And he looked up a bit and then said "well, that makes you 56 years old". His pediatrician was there, listening in the background and they looked at each other’s eyes and said "wow Jonathan, you are really smart" and then told me how incredible it was that he could do math like that. To me is like Dustin Hoffman in Rain Man and I reject that a bit. But I know that he will do well in math. So that is a relief. I am grateful that he is starting to come out of Autism and if he is going to keep some traits, I welcome math.

For the record, I took Vanessa to her 4 year-old checkup and brought the measles vaccines to have her pediatrician inject it. I spoke with her about it last year and told her that I wanted to break them apart. She told me that she only purchased the MMR together, but if I purchased it on my own, as long as the vial was intact and with a good expiration date, she could administer it. Jonathan’s DAN! Dr. carries them and I purchased it last month. The pediatrician injected it on July 9th. That day she seemed a bit more tired than usual and irritable. But I pumped her with probiotics and Vitamin C. Because we travel, I feel more comfortable if my kids are protected. If I didn’t have a chance to separate the MMR, I would never give it to Vanessa. But since they can be administered separately, we decided to do it. I will have the doctor administer the Mumps vaccines late November and the Rubella in May 2009.

Started Regular Summer Camp

2008-07-07T21:15:00.010-05:00

Jonathan started summer camp last week. He attended a regular summer camp at a farm and loved it. I was so worried, but the leader said that he did great. He fit in and did everything and made 1 friend. He had no trouble understanding and following directions. Each day they had different activities. "Mom, I saw the cows today and their poop is really big :)". "Mom, I saw the pigs today and they stink". "Mom, I made honey bread today". Those are just a few samples. He was excited to come home and tell me about his day. The last day, they had water day and he had no trouble getting wet with the other kids. He even took his shirt off.

For the July 4th weekend, we went to his aunt's house in NJ and it was quite incredible to observe him. He loved it: "Mom, this is a really cool house. I have never been here before. I love this house". We could not understand why he kept telling us that he had never been there before. I even asked him to find the bathroom and he didn't really seem to remember but suddenly he did. Then he said "Oh, I remember the bathroom". It is quite an amazing thing for me to witness. This awakening. He even played with the dogs and threw the balls and was totally into it.

Today he started the new summer camp - Sports. He is going to be in this camp for 2 weeks. One different sport each day. He did really well. He seemed a bit lost this morning since all the kids went to play in a big circle and he didn't really know what was going on. But he was not anxious and went voluntarily. He said bye to me and walked towards them. I was worried all day. But when my dad picked him up, he said that he sounded very happy. When I got home, he told me that it was a fun day and they played basketball and went to the pool.

I did tell the leaders in advanced that Jonathan had high functioning autism and both (last week's and this week's) seemed okay with it. They both had the same reaction - "don't worry. I've had autistic kids before". But once I dropped him off, the leaders did not hold his hand for anything. He was treated as a regular neurotypical kid. That is what I want (I think). He is doing well so far.

Tonight, as I got the kids ready for bed, Jonathan noticed the word "PRINCESS" hanging on one of Vanessa's walls. It is a decoration that someone gave Vanessa when she was born. Each letter is hanging on its own. He came to me and said "mom, why didn't you make the word "PRINCE" for my room? I want to be a PRINCE". I loved it. He is just noticing everything and behaving as any neurotypical kids "I want what my siblings have". I love it!!!

Things that worry me:

He keeps making noises with his throat as if he has something stuck. Today he even said that it bothered him. I am going to make an appointment with his pediatrician. This is a daily event. I don't think it is allergies anymore.
He still hums, although he has dramatically improved
He is holding his private areas constantly. He says it doesn't hurt and he doesn't need to go to the bathroom. So I don't know why. I need to ask his pediatrician.

Fantastic Summer Vacation (long post)

2008-06-29T22:31:00.027-05:00

We spent a week in Orlando with the kids. It was a wonderful vacation. We went with another couple and their 2 boys (4 and 6 years old). We have been friends with this other couple for 12 years and have made it a tradition to go away together on vacation once a year. This is our 11^th year travelling together. We have become best friends and spend a lot of time together. During Jonathan’s the most difficult times, this couple always stood next to us, helping us and being with us. I admit it was hard for me to go away and watch how normal and happy their oldest kid was (same age as Jonathan) and see how lost in his world Jonathan was. They didn’t play together; they didn’t even acknowledge each other. When Vanessa was 2 and 3, she would play with their boys (the 3 musketeers we called them) and Jonathan would be in his own world, playing the Leapster or watching TV. But we (the two couples) have grown up together in the good and the bad times and we never stopped our annual tradition despite Jonathan’s most difficult times. So this year, we went to Disney World!

The entire trip was an adventure. We took the auto train last Friday (June 20^th) and arrived in Orlando on the morning of June 21^st. We got a resort with 2 bedrooms and a kitchen and decided to bring our cars and food to save on car rental charges and eating out every day. The 4 kids did great. The train left at 4pm and the kids watched movies, played video games. We had dinner together in the dinner train car. They were very well behaved.

We arrived the next morning, got our cars and went to the resort. We had decided not to go to the parks either Saturday or Sunday and spend time at the pool instead. Jonathan and Vanessa loved the pool. They spent a large portion with Christian and Nico Saturday afternoon. On Sunday, Jonathan didn’t want to go to the pool. Vanessa went with Daddy and Jonathan stayed with me while I got ready. I gave him breakfast thinking that he needed food. But he still didn’t want to go. I grabbed his bathing suit and headed to the pool with him anyway. I told him he could play his Leapster and didn’t have to go in and he was okay with that. On our way to the pool I asked Jonathan why he didn’t want to go back and he told me that it was because the water is too high and he didn’t like it that he couldn’t touch the floor. When we got to the pool, he noticed that Vanessa had “brasitos” (arm floats) and he decided he wanted to try it. He loved it and spent hours at the pool that day with the kids. In the afternoon, we went to Downtown Disney for fun and ice cream.

Magic Kingdom

The first park we went to was Disney’s Magic Kingdom. We got up early and made it to the entrance by 9:30am. It was hot and sunny. Disney has services for kids with special needs and people with other disabilities. I had researched it a few months back. I went to the Guest Services desk with a letter from the neurologist to explain that Jonathan has autism and they gave me a pass that allowed us to by-pass some of the very long lines. That was helpful because Jonathan still has trouble coping with certain things like long lines, heat and really hates the sun. The park was very crowded but Jonathan had no issues with that.

When we entered the park, Nico and Christian ran to get their picture and autograph taken with several Disney characters. When Jonathan asked Christian what he was doing and Christian told him about the autograph book, Jonathan immediately told me that he wanted an autograph book too. So Daddy went to buy an autograph book and pen for both Jonathan and Vanessa and we spent about an hour getting autographs and pictures. That was awesome. He was very excited and knew all the characters.

By 10:30am, Jonathan was very annoyed with the sun and we decided to go to rides. The first place we went to was the Haunted House. We waited in a long line because we didn’t really know how to use the special pass Guest Services had given me. Jonathan was moving a lot, in circles, from left to right. He hated the sun and asked for a shadow. When we made it in, he absolutely loved the ride. He wanted to do it again, but the park is so big we told him next time. The next ride, I decided to figure out how to use the pass. It would allow the 8 of us to go through the handicap entrance. I am glad that we got that pass, because it made a world of difference. We went to 3 worlds (there are 6 worlds I believe) and made almost all the rides with little wait time. Jonathan enjoyed the park tremendously. We left the park at midnight. Jonathan did not complain about being tired, not even once. He was rigid about food and we needed to feed him when he said he was hungry. And when he was really hot, we gave him ice cream and he was happy. He loved the parade. We had taken Jonathan to Disney twice before, but he didn’t remember. He never cared about the characters the way he did this time. He never cared about the parades. He never cared much about the rides (would suck his thumb and go into his own world). This time, he loved the park.

Water Park – Typhoon Lagoon

Since Monday was so hot, we decided to go to a water park on Tuesday. It was a very VERY fun day. Jonathan loved it. He got on a couple of slides where he had to get on a small raft by himself and totally loved it. As long as he was on that, he was not scared. But he didn’t do the slides without raft. I am going to take him to swimming lessons (both Jonathan and Vanessa) because Vanessa was scared too. We closed that park too at 8pm.

Sea World

On Wednesday, we decided to go to Sea World. I had been when I was 8 years old and I didn’t really know the park or what to expect. It was hard to get into it at first because we soon realized it was a park of shows and we needed to plan our day around the schedule. Jonathan liked watching the dolphins and orca whales. And he liked a sea lion show very much. It rained on us for about 1 hour with strong thunder and lightning, and he was calmed and not scared. He was annoyed about getting wet (even though he had a poncho on), but was not scared about the noise. He really wanted to get on a tower and the others wanted to do something else. He was soooo excited to go on that tower. It was great to watch him. Again, we stayed until they closed the park and we watched the fireworks. Jonathan loved them.

Disney Quest

On Thursday, we stayed at the resort in the morning (pool) and then took the kids to Disney Quest because we knew it was going to rain again like Wednesday. And I am glad we did because it rained for almost 4 hours. Disney Quest is a building with 5 floor of virtual reality games and an arts section. Jonathan liked most games. We spent almost 7 hours there (and I lost my small digital camera J - I was hoping someone would turn it in, but no one did. I even checked today). It was too much for Vanessa, but Jonathan enjoyed it. There were a couple of games that scared him. We went to dinner from there and made it back to the vacation house (as the kids called it) late that evening.

Universal Studios – Islands of Adventure

On Friday, we decided to go to Universal. At first, we wanted to go to both parks, but since we had made it in so late on Thursday, we let the kids sleep in and didn’t make it to the park until noon. At that time, we decided just to stay in that park. It was incredibly crowded and the sun was strong again. I went to Guest Services and they gave me similar passes as Disney so we could by-pass some of the long lines. That again made the experience very enjoyable for Jonathan as we were able to get on all the rides. Except for roller coasters and rides with steep drops, Jonathan got on everything else. Vanessa however got on all the rides her height would allow her. She loves roller coasters. We didn’t push Jonathan do anything he didn’t want to do because he was having such a fun time, it was not worth forcing him. I know that if he gets on those rides, he enjoys them. It is just getting him on them that is tricky.

That evening we went to eat dinner at Bubba Gump (restaurant from Forrest Gump's movie) and Jonathan ordered popcorn shrimp. I was concerned because he had never tried shrimp before and he just wanted it because of the word “popcorn”. But to my surprise, he ate the entire plate. Amazing.

Summary

It was a great vacation. Jonathan was always part of the group, hardly ever on his own. Enjoyed everything, never complained about anything other than the sun being too shiny and being hungry at times. We did not stress about him for the first time in years. It was great!

Spending an entire week with Vanessa, Nico and Christian was great. I can more clearly see Jonathan’s strengths and weaknesses. It is helpful to compare with neurotypical kids, so that I can better concentrate on the areas that he still has issues.

Mild hyperactivity – cannot stop moving, but it is not obnoxious. I keep telling him to stop moving. He does for 2 seconds and starts again. If I grab him so he doesn’t move, he stops but gets desperate and takes my arms off him so he can move
Eye contact - still has a hard time fully locking eye contact when I ask him to look me in the eyes. However, he has pretty good eye contact when he initiates it
Expressive language – sometimes doesn’t make sense or cannot construct large/complex sentences on the spot. But he has become quite verbal, so he tries hard to explain himself if we don't understand what he means
Appropriate playing – still not interested in playing with toys other than electronic toys. Not interested in building complex pretend games with toys on his own. He can do it for a few minutes (playing with a couple of tiny figures and making them talk to each other) and can play some pretend games with Vanessa but cannot build complex scenarios.
Tip toe walking – he is doing it again
Getting too close to people’s faces – when he is playing with kids or adults, he tends to get too close to their faces
Voice volume and intonation – when he speaks he still uses a very loud voice and his intonation, although better, is still flat
Humming - he still does it
Mild OCD - with time lately. He wears a wrist watch so he knows what time it is at all times

"How Many Uncles Do I Have, Mommy?"

2008-06-16T20:45:00.003-05:00

School is over, but Jonathan is attending the public school child care program today and tomorrow. He normally just attends the morning; and the 2 times in the past that he spent the entire day there because of school closures, he was not very happy. However, today he was very happy to go. He has changed so much in just 2 months, it is weird (in a good way).

When we arrived, as soon as he was done putting his lunch bag in his cubby, a boy called his name "Jonathan, come on". He looked at me and said "bye mommy, I'm going to play". That was music to my ears. The ladies in this place love him. They told me that he was a very good boy and does quite well with the group there.

Grandpa took care of the kids this afternoon because I could not leave work early. He picked both of them up at school, brought them home, dressed them up for Tae Kwon Do and took them. It really shows how much they both have matured, because he tried to do this 3 months ago and Vanessa had a fit.

This evening, Jonathan and Vanessa played very nicely. They pretended that Jonathan was a daddy and Vanessa a little girl and that they spoke Spanish. They really tried to speak to each other in Spanish. It was quite cute to watch (where is the video camera when you need it, right?). Jonathan told me about his experience playing basketball today at school and that he learned that you use your hands to play basketball and cannot play with your feet. And he told me that he learned the "rules". That explained a lot because earlier today, when I got home from work, he came and asked me what our house rules were. I didn't understand and he said "I know 2. Put the caps in the markers and clean up. What else mommy?" So I came up with a couple, starting with "always be nice to your sister and be obedient".

After a while, Jonathan asked me to put Harry Potter 3 on because they had not been able to watch it yet. We saw number 1 and 2 last week. We sat together and watched some of it. They both can only tolerate so much of the narrative, so after the first 10 minutes, they were up and about. I made dinner and then watched the end together. I tried to explained scenes as they happened. Vanessa was very interested in the werewolf.

All of a sudden Jonathan asked me "do I have uncles, mom?" I looked at him and said "yes, tio hugo is your uncle, and tio Carlos too" and he was excited to hear those names. He was shocked they were his uncles. It was like an awakening moment "wow, I have uncles" is what he said. "How many uncles do I have, mommy?". So I counted 5 "Tio Hugo, Tio Carlos, Tio Juan Carlos, Tio Hernan and Tio Billy". Then he asked "how many aunts do I have?" I counted 5 again. "Tia Neni, Tia Nelci, Tia Michelle, Tia Sarah and Tia Sara". And he jumped "I have 2 aunt Saras'?" So I explained. Then he said "wow, I have aunts and uncles!". A few minutes later he asked "mommy, does Harry Potter have uncles? who is Harry Potter's uncle?" (and by the way, he is using prepositions correctly which is a big improvement). I thought hard as I had just told him that Sirius was Harry Potter's GodFather and I couldn't remember the uncle. But a few seconds later I remembered and said "yes, Harry Potter has one uncle. The fat guy, remember?" And he said "oh, yeah. the guy at the beginning of the movie that is mean to Harry". Wow, Daddy and I looked at each other in dismay. I said "yes, sweetie, that is exactly right". He is truly amazing me lately with his comments.

One thing that Jonathan is doing now is that he really wants to know what we are saying. If we say something and one of us laughs, he asks again until he understands the joke. He wants to know everything. If we say something and sound surprised, he wants to know too. So now we find ourselves explaining a lot.

DETOX
Two days ago, he had a horrible meltdown. I think it was detox. He normally recovers quickly when he gets upset, but this time it took him over 20 minutes to get over being upset. On Saturday, I took Vanessa to a playdate. I left Jonathan home with daddy playing the Wii because I didn't know where I was going. Since Vanessa was the one that was invited, I decided not to risk it. When I got there, the girl's mom asked me why I had not brought Jonathan and I told her that I didn't know and would bring him next time. She has another boy same age as Jonathan who happened to have ADHD. When we got home, Jonathan immediately asked Vanessa where she was. When she told him where she went, Jonathan got very VERY upset that he didn't come. And told me that he was mad at me for leaving him at home, that he didn't want to play Wii anymore. That he wanted to go with Vanessa to the girl's house and play. And just went on and on and cried uncontrollably for over 20 minutes. We had to get out of the house to just get him to think if something different.

Today his language was much better than usual. He used well structured sentences, prepositions and long sentences. Intonation is better. Still a bit flat, but much better. He is really trying. Vanessa mentioned a boy name George from school and he said "what many years George is" and I corrected him to say "how old is George". These are the types of problems that Jonathan is experiencing. But today he made less mistakes of this nature than normal.

Last Day of School (Kindergarten is Over)

2008-06-13T22:21:00.008-05:00

It was an emotional day for me. Jonathan's kindergarten teacher had a "last day" ceremony this afternoon and all of a sudden I realized what a major accomplishment today was. I had a huge nut in my chest and tears in my eyes watching the video the kindergarten teacher made and seeing the teacher give each kid their report cards and awards and telling them that they are now "First Graders".

I approached the teacher and she again told me that she really enjoyed having Jonathan. He is very sweet and loving and she is going to miss him. She was an excellent role model for Jonathan and I could not be happier to have had her as my son's kindergarten teacher. The teacher did a great job teaching them positive behaviors that they will carry for many years.

In Jonathan's report card note for the 4th period, the teacher says "Jonathan has made excellent progress and successfully completed the kindergarten curriculum as defined by (local county) program of studies. Jonathan should be very proud of his accomplishments this year. I would strongly encourage you to enforce Jonathan's literacy development throughout the summer by reading and writing daily. Continued reinforcement will maintain your child's literacy skills and facilitate a smooth transition to first grade. It has been a great joy having Jonathan as a member of our classroom!".

The report card has 6 sections. They are rated between 1 (progressing) and 5 (exceeding objectives). To pass kindergarten, each area must reach level 4 (mastery of kindergarten objectives). Jonathan reached level 4 in 5 of the 6 areas. He reached level 5 in "Reading". But no surprises here since he started reading since he was 18 months. It was a very good report card.

In addition, Jonathan took a test twice this school year called DRA Word Analysis. There are 8 sections in this test. In the Fall, he scored 159 and the class average was 61. In the Spring, he scored 192 and the class average was 167. The maximum score someone could receive in this test is 193. He missed it by 1 point. The teacher was very thrilled. This continues to show that his receptive language and overall understanding has caught up. His major problem continues to be the expressive language.

On May 30, 2008, we had his revised IEP. The Special Ed teacher provided a report based on the new 2 goals already. For the written language goal (Jonathan will compose 3-5 sentences on a given topic using correct grammar over a three week period), she gave him a 3 out of 5 (which is appropriate. This goal was written less than a month ago). 3 means The student has demonstrated some progress towards achieving this goal. Her comments were "Jonathan has started to make great strides at the closing of the school year with his sentence choice and structure".

For the communication / speech goal (Jonathan will communicate with age appropriate syntax and oral communication skills in 4 out of 5 30 minute sessions) she gave him a 4 out of 5. 4 means The student is making sufficient progress toward achieving this goal within the duration of this IEP. This IEP is not even 1 month old. Her comments were "Jonathan has demonstrated growth in his ability to communicate with appropriate syntax within the classroom setting this quarter". If he continues to improve at this rate, I am sure we will need to call in for another IEP meeting when first grate starts.

All these observations are very positive and make me feel very proud of Jonathan and give me the push to continue this recovery journey. There is still lots to do. I notice things that others don't because he is my kid. For instance, he could not sit still today to watch the movie. He needs to focus more. He still lacks some social cues (e.g., when he hugs, he turns his head away. Just need to teach him the proper form. It is not sensory related any longer). And still has a bit of low muscle tone which makes him uncoordinated.

Here are some pictures of Jonathan and a very short video of the teacher giving Jonathan an award.

WHY Questions

During our second visit to Jonathan's DAN! Dr. 3 years ago, Javier asked the Dr. how would we know when to stop all the interventions, and the Dr. said that it was hard to tell, but the milestone we wanted to look for was "Why" questions. When Jonathan started to ask "Why" questions, we would be towards the end of the race.

Javier bought a Johny Walker Blue Label bottle and said that he would open it when Jonathan asked his first "why" questions (which in our mind meant recovered).

Last year, Jonathan started to ask Why questions, but something told us that these were not the right why questions. He first started to ask why if we told him he couldn't do something. Then he started to ask why if we told him he could do something. But we noticed that he never spontaneously asked why questions to satisfy curiosity. So we decided that was not the type of "why" question we were looking for and decided not to open the bottle.

This year he started asking more complex why questions, on some how questions, but these were not the true "curiosity" type questions. They were more to satisfy reasoning.

Today, on our way back home from a restaurant, he looked outside the window of the car and said "look mommy, the moon is moving". And Daddy said "no sweetie, the clouds are the ones moving". I was sitting next to him (in between the kids as my dad rode with use) and he said "but mom, how are the clouds moving?" and I said "because of the wind. The wind is making them move". And he looked outside again and said "is there wind out with the clouds?" and I said "yes honey, the wind is out with the clouds" and asked why and I said "because the wind is always outside blowing sometimes hard, sometimes soft". He kept looking out the window and said "look mommy, the moon and the clouds are following us". That was cute. I said yes. Then we turned and he and I started talking about something else and he turned outside and didn't see the moon. He started moving around looking for it and said "the moon is gone", I said "it is hiding from us. Do you know why we can't see the moon anymore?" and he said "because we turned. But when we get home, I can go outside the car and see the moon and the clouds again". Then I realized that he is starting to ask the appropriate why questions.

We are not going to open the bottle yet!

A Fun Day with The Kids

2008-06-07T23:28:00.002-05:00

Jonathan woke up at 6am today ready to play Nintendo Wii. Since he is only allowed to play electronics on the weekends, he dreams about Saturday mornings. In fact, he told us last night "I want to go to bed early because I want Saturday to come quickly". He tried to get both Daddy and me up but he was not very successful. We were tired. So at 7am, he went downstairs to play on his own (he did ask his Daddy first if he could). By the time I made it downstairs (8am), he was done playing with the Nintendo Wii and transitioned to the Leapster toy. I was glad to see that.

At 10:30am, the kids had their Tae Kwon Do belt ceremony. We thought it was going to be a quick ceremony, but it turned out to be over an hour. Jonathan has received 3 belts already but this is the first time that the Master does an actual ceremony. So we did not really know what to expect. We had to leave early because Daddy had to go take a test for his Master's Degree application form, and missed the end. One thing I liked very much today was that when I moved to another spot and Vanessa could not see me, she got a bit anxious and went to Jonathan to have him find me (there were tons of people). Jonathan did and brought Vanessa along with him, and told me "here mommy, Vanessa was looking for you. I am going to sit down again". He is always so worried about her and looking after her. The other thing that I liked (although it broke my heart that I couldn't do it) is that towards the end, the Master told all the kids (by belt color) to have their moms go to the front to break a piece of wood. I was in the bathroom with Vanessa and Jonathan started crying looking for me. When I came out, some Dad was with him helping him look for me. When I asked him why he was crying, he told me "because I was looking for you. You need to go break the piece of wood. All the other moms are there breaking the piece of wood." I told him that I couldn't because we had to go. He calmed down and we left. The fact that he notices that everyone else's moms are out there and I need to do it too is great. He did something similar a couple of weeks about about the umbrella.

The kids that received belts today

The Master called Jonathan's name. He quickly stood up and ran towards the front.

The Master called Vanessa's name. She was so proud of herself.

After Tae Kwon Do, Daddy went to take his test and we went to eat lunch and then to a recreation center so they could play in an indoor pool for a while. They had a blast. Actually, I really enjoyed being out there with them. It has been getting easier for me to be with both lately, but this was a total test. We went to a local Diner and spent about 45 minutes there. The kids were great, behaved very well, ate all their foods and we all played with books and stickers (and Jonathan played with the Leapster when he got bored with the other stuff). After that, we went to the pool. They were very well behaved, stayed in the kiddy area so I wouldn't have to worry sick that one could drown. It was a great afternoon. We spent 2 hours at the pool.

They discovered the world of "Shakes" and drank my entire chocolate shake

At the Pool

Vanessa is the one with a one-piece white bathing suite with color polka dots. Jonathan has a blue bathing suit with light blue vertical stripes on the side.

Green Our Vaccines & Orange Belt Test

2008-06-04T20:35:00.015-05:00

Today was Jim Carey and Jenny McCarthy's "Green our Vaccines" Rally and both Javier and I attended. I have never been to a demonstration of any kind because I don't ever feel that passionate about a particular cause. But Autism and Vaccines are way to close to my heart and I couldn't ignore it.

I am glad we went. Thousands of people went. The march took almost an hour to complete from the moment people started walking from the Washington monument to the last person that entered the Capitol's ground area. It was very spectacular to be honest. And very touchy. There were a couple of moments during some of the speeches that I wept.

There was a child next to me that was severely affected and he kept holding my hands and pulling me down to him so he could see my face, and kept grabbing my purse and hand and camera. And I felt so bad for him and thanked God a thousand times for giving me the strength, energy and perseveration to bring Jonathan out of that world. So many people brought pictures of their children and big signs. We just showed up with our supportive t-shirts but didn't bring the kids or pictures or anything. We didn't really know what to expect. Next time we will be more prepared.

I am not anti-vaccine. I actually believe they are important, particularly if you travel outside the US. Vanessa has gotten all her vaccines except the MMR and flu shots. Her schedule was very different from Jonathan's and her pediatrician carries only thimerosal-free vaccines. Because Vanessa is a "gut" kid (she is severely constipated and I believe that the problem started with the Hepatitis B shot at birth), I purposely delayed the MMR. I am now going to administer it separately, giving 4 months in between them. Also, never use Tylenol before or after vaccination because Tylenol uses up glutathione. Use Motrin. I wish I had known that before too.

I am sure articles will be posted on newspapers and TV news. I hope that this is the beginning of change. Everyone has different expectations about these types of demonstrations. I have 2 goals: (1) preventive: take out bad stuff in the vaccines and educate parents about how to schedule vaccines safely; (2) insurance coverage for affected kids: we need insurances to cover for the treatments that kids need to get better. They do get better. Some more than others, but they do get better. The problem is that not everyone has the financial means necessary to pay for these interventions (from biomedical to behavioral). And therefore, make kids never get better. We need money.

This was very touching. The folks that organized the event created a flower arrangement with 150 white flowers and 1 yellow flower to represent 1 in 150. Made me cry.

A short video to show the type of energy and event we experience today. It was a very good event. Very well organized and speakers were great!

Tae Kwon Do Test for Orange Belt - June 3, 2008

I was reluctant to letting him take this test because I thought he was not ready. But the master told me that he was ready so I signed him up. He did great. I have not edited the video, but here are a couple of pictures. Vanessa also did her test to get her white belt and passed it with honors.

The Belt Ceremony is this coming Saturday. I'll make sure to add pictures then.

This form is actually to put the combat arm down. There are different forms.

Master congratulated Vanessa for a job well done! He is very impressed with Vanessa's skills. She actually has very good form and he keeps bringing that to my attention.

Sparring

Last week, Jonathan was given the opportunity to try sparring. As expected, he did not know exactly what to do, but I was so very proud of him for trying, keeping his eyes focused on his target (the other boy) and not feeling intimidated by the other kid. I did not film the second try-out he had, but he kicked better. You can see that in the couple of pictures below the video. Jonathan is the boy that has the 3 blue dots on his sparring vest. Before we decided to invest on this, we are going to let him try a couple more times. He came running after he was done begging me to buy the equipment, but the master told me to wait and try 2 more times before deciding.

Autism Spectrum Disorder

2008-05-31T21:51:00.010-05:00

I wanted to take this opportunity to explain something that I am sure it is very obvious for those of us that have a child on the Spectrum, but not so clear for our family members and friends.

In my previous blog I mentioned that Jonathan's DAN! Dr. believes that Jonathan does not meet the criteria for autism but believes that he is still somewhere in the spectrum and would diagnose him as "very high functioning aspergers".

The word "Autism" is used to describe someone that may be diagnosed with any of the Autism Spectrum Disorders (ASD), but it is also one of the ASDs. And this makes the term complicated to understand (at least it was to me).

ASD is a spectrum of psychological conditions characterized by widespread abnormalities of social interactions and communication, as well as severely restricted interests and highly repetitive behavior.

The autism spectrum disorders are categorized by 5 different forms: the severe form called Autistic Disorder (also called “classic” autism), to a milder form, Asperger Disorder. If a child has symptoms of either of these disorders, but does not meet the specific criteria for either, the diagnosis is called Pervasive Developmental Disorder not Otherwise Specified (PDD-NOS). These forms range in severity levels from low functioning to high functioning. Other 2 rare, very severe disorders that are included in the autism spectrum disorders are Rett Disorder and Childhood Disintegrative Disorder.

The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) provides the criteria for the diagnosis of autism spectrum disorders.

Doctors diagnose based on observations and parental anecdotes. They perform a number of psychological assessments to gather information that will help them better assess the condition of the child. But there are no blood tests that can diagnose this disorder. Therefore, the diagnosis of a child can vary from doctor to doctor.

Jonathan was first diagnosed to have mid to severe autistic disorder. After a few interventions (6 months of gluten free / casein free diet, supplements, intestinal yeast protocol, Tomatis auditory processing and ABA behaviroral therapy) he was evaluated by a different group of doctors and the diagnosis changed to high functioning autistic disorder.

What his DAN! Dr. meant was that he believe Jonathan no longer meets the DSM-IV criteria for autistic disorder; but because he still has some odd behaviors and language problems, that will keep him in the Autism Spectrum.

Based on the DSM-IV criteria, I agree with the Dr. that Jonathan does not meet minimum number of items under the "autistic disorder" to be labeled under this category. I believe he still meets 4 of all the items listed, which means that he is still in the spectrum, but he needs a minimum of 6 to be categorized under the autistic disorder. And after reading the criteria for Aspergers, I disagree with the Dr. about the Aspergers diagnosis, because Aspies speak very well and that is Jonathan's main problem right now. I would consider him high functioning PDD-NOS. We'll see what Children's Hospital says.

Having said all that, I feel that we have reached a very significant milestone in our recovery journey, and I thank all of you who have reached out to us to give us their good thoughts. It is huge to be out of the most severe form of ASD. And we have worked very hard to reach this point, but we are still in the ASD world and we need to continue everything we are doing to make Jonathan as high functioning and indistinguishable as possible so that he has a fully independent and happy life. The good thing: we are definitely on the right track.

Chelation information

In very simple terms, chelation is a therapy used to detox the body from heavy metals. You can use natural chelators, like high doses of vitamin C or E (anti-oxidants), or ALA, or you can use chemical chelators like EDTA, DMSA or DMPS. There are other products that claim to chelate metals like zeolites , clay baths and others.

All the doctors that are currently treating children with ASD agree that one of the main issues is the amount of heavy metals trapped in these children's bodies and they all treat the heavy metals. Each doctor may have their own protocols and preferred chelators, but what is important is that they all agree on treating heavy metals. Therefore, chelation is a critical part in the recovery of our children.

I have used transdermal (TD) DMPS (cream), transdermal Glutathione (cream), NCD (zeolites), high doses of Vit C, DMPS suppositories, EDTA pills and suppositories and through Yasko, I have worked on getting Jonathan's body balanced enough so that he can produce his own glutathione (the most powerful antioxidant that the body makes) so he can auto-detox.

I have tested his urine, hair and stools to check for high levels of heavy metals and he has been dumping metals for the past 3 years. The most significant time was when we went to step 2 in Yasko's protocol. His urine was crystal clear for weeks and had a very strong metallic smell. I never tested it, but based on Yasko's experience, I know that clear urine means metal dumps.

We have been using a French lab to test his levels of mercury and even though they have dropped in a year, they are still 300 points above normal. So that is the reason why his DAN! Dr. decided that we still have about 2 years of chelation. We will continue with suppositories (DMPS and EDTA) and zeolites and the Yasko protocol. I haven't graduated to IVs yet, and I don't know if I ever will. But I know a number of parents who have been and continue to be successful with IV chelation.

Interested in Family Members and Pictures

Out of the blue, Jonathan asked my dad yesterday what his dad and mom's names were and if he knew them. My dad answered all of Jonathan's questions. Minutes later, my dad left with Javier and Vanessa to the grocery store, and Jonathan came to me and asked me if my dad had brothers and sisters. I told him yes, and asked him if he wanted to see pictures and he jumped and said yes. We sat for about 30 minutes looking at pictures of my dad and his family and my mom and her family and then Javier's family. He then asked me to show him pictures of him when he was a baby. And I did. Soon after Vanessa arrived with Javier and my dad and she sat with us. We saw lots of pictures together, from when they were babies to recent ones. They had a blast.

This was the first time ever that Jonathan does something like this. Vanessa had sat with me a couple of times in the past 6 months to look at pictures (she loves to see pictures of family members), but Jonathan had never cared.

Happy Birthday Marco

We had a birthday party at a local gym today. The kids had a great time. I filmed most of it, and took few pictures. I haven't edited the film but here are some pictures. Jonathan interacted and played like any other kid. The only thing that made him different was that his voice was louder (e.g., when the girls asked all the kids to tell their names and age, all the kids used a tone that was loud enough for everyone to hear, but without screaming. Jonathan screamed both his name and age.) He was also loud when he responded to the teachers questions/comments. Everything was appropriate, just the volume in his voice and the intonation were off.

Other than that, he listened and followed instructions and played and ran and jumped and did everything the girls told the group. We was a bit loud when he laughed. I stayed away watching him and the other kids and the teachers. He behaved as one of the kids. That was great for me to watch because that gives me an idea of how he is going to be in summer camp. I didn't tell the girls that ran the place today that he had any problems. And they didn't treat him any differently than the other kids. I know I'll need to tell the summer camp instructors just in case he has a bad moment. But I feel better about it.

Dismissal of some IEP Services

2008-05-30T09:22:00.007-05:00

Quarterly DAN! Dr. Visit:

I took Jonathan to see his DAN! Dr. on Wednesday. The Dr. was happily surprised to see Jonathan's improvement. They are quite remarkable. Jonathan was talkative, interacted well, asked a couple of questions. I explained to the Dr. the drastic changes I had made to his supplements since the beginning of April. He asked me to what I credit such fast improvements, and I told him that I believe it was due to a combination of HBOT's healing process, stopping all the herbs and supplements completely for 2 weeks allowing his body to jump-start, and the new supplements I am giving him. I know for a fact that when I stopped CCK, he stopped being hungry all the time. Since April, Jonathan has lost 4 pounds, looks healthier and has tons of energy.

The Dr. told me that Jonathan no longer meets the criteria for Autism. He still has language issues and some minor stims that are hardly noticeable. So he still considers him somewhere on the spectrum, but not autistic. Perhaps very high functioning aspergers or minor case of ADD with language delay. In either case, his point to me was that Jonathan was out of the danger zone and he will have a full and independent life. Now we need to work on the remaining items, which could take another 2 years. His porphyrin test still shows high levels of mercury. So we need to continue the detox route for a while. And he prepared me for the school. He believed the school would take away most of the services and perhaps just leave the expressive language services since that is his only major problem at the moment.

I submitted an application to have Children's Hospital re-evaluate him and I am waiting for an appointment. 3 years ago they gave him the label of "High Functioning Autism" after 8 months of biomedical intervention. I wonder how they would qualify him now. He hardly spoke 3 years ago, had terrible sensory problems, tons of stims, little eye contact, had a receptive language of a 12 month old child and they still said HFA. I'll keep you all posted.

I spoke with the Dr. about Jonathan's flat voice (lack of proper intonation), and he said that he would always have it. Some kids when they recover still have a flat voice. There isn't much I can do. But if you know me well, you know I cannot just take a "no" for an answer. I am a masochist because I have kept going to this doctor for years even when he told me that I had to come to terms with his condition. Well, I proved him wrong and I will prove him wrong again. And this is yet another challenge. I will fix his intonation. This is my new challenge.

We also spoke about some social deficits that I still see. He sometimes misses some social cues (like when other kids do something and he misses the facial expressions or words (like when it is his turn), or when he wants to do something and other kids don't want to do what he wants and then he gets bossy). But it is not so bad that it would be too disrupting. Once the kids tell him twice, he gets it for the most part. He has actually gotten even better in the past month. Unless he is really into something, he catches on; otherwise he keeps insisting. But I have seen neuro-typical kids do the same. The Dr. said that Jonathan will catch up. He imitates so well and he is able to understand most body language and that what he needs is to be exposed to situations that will teach him. I agreed with him. I mentioned to him that we had enrolled Jonathan in regular summer camps this year for the first time (sports camps, farming, gymnastics, dancing) and he was very excited and said that Jonathan is ready. These situations will be ideal to teach him social awareness and social cues, because he is capable of getting them. He just missed the milestones when he was a baby and needs to relearn all these.

We also spoke about low muscle tone. I did all the blood work for mitochondrial disorder and they results came back normal. A couple were a little high, but within range. But he agrees that he does have a little bit of low muscle tone and that in his case, his mitochondrial disorder is due to a damage after he was born and not genetic. The genetic mitochondrial disorder is very uncommon but the mitochondrial disorder due to environmental insults (virul, metals, etc.) is very common, particularly in the autistic population. I told him that I will still take him to the specialist in June just in case we missed something, and he agreed that that was a good approach.

Lastly we spoke about Jonathan's obsessions. He is obsessed with academic type materials and with electronic devices. But his obsession is used well. He teaches himself how to operate the devices and uses them appropriately. The video games help him with eye-hand-mind coordination. And after we did his brain-map, I can see that his brain is craving the information. However, because he is willing to transition well when we ask him and is willing to even drop them when we offer something fun like going to a fun park or to get ice-cream, the Dr. does not qualify them as "autistic type obsessions" where the kid is so obsessed they can't be taken away without a meltdown. That is not his case anymore and he believes that since his brain has already developed and craves these devices, he will end-up using them when he grows up for something good. He actually does not consider this typical OCD. But rather inclinations and hobbies. We all have them. And he will learn (as he is already) to control how much he craves them.

First Grade IEP Meeting:

We had his 1st grade IEP meeting today. It went well, but as expected, they took away 3 out of the 5 services they had been providing since he was accepted into the program 3 years ago. The Speech Pathologist made a comment about how remarkable his progress has been since he started when we was 3 years old (he has been going to the same school since 3). We are dealing with a very different kid: loving, social, talkative, intelligent, active, eager, hard working, no sensory issues, etc. I almost had tears in my face, but I contained myself.

IEP Present Level of Performance:
Strengths:
Jonathan has demonstrated significant progress regarding his receptive and expressive language skills. Within the classroom setting, he is able to answer yes/no questions and WH questions, follows directions given to the entire group, follows directions with a discrimination (all kids with green shirts get up), and participates in small and large group language activities. His knowledge of basic concepts and curriculum vocabulary continues to emerge. His expressive samples are becoming more complex with regard to sentence structure, and errors in syntax are decreasing.

Needs:
Jonanthan continues to evidence a deficit in oral language skills, characterized by a weakness in sentence structures, use of proper syntax, morphological rules (word endings such as plurals and "ing") and proper vocal intonation.

The only 2 services left (as foreseen by his Dr.) were oral language (expressive language) and grammar (sentence construction). He has mastered everything else: receptive language, social skills and OT. The label "autism" was kept, but he will continue to receive "Learning Disability" services. He will be placed in a mainstreamed First grade, with 5 hours a week of LD support (1 hour a day of help in the classroom), and 1 hour a week outside the classroom support with other LD (non-autistic) kids. These are kids with reading problems (dyslexia) and other learning disabilities, but otherwise neuro-typical. There will be 26 kids with 1 teacher. But the current teacher believes he will thrive.

His current kindergarten teacher shared some experiences and told us that Jonathan was a wonderful kid. She is completely blown at his progress, particularly this past quarter. She said that Jonathan does not stand-out at all anymore. Anyone that comes to the room and does not know Jonathan, could not tell that he has a problem, let alone autism. He blends, he plays, all the kids love him and get along with him, he pays attention, does his work with minimal prompts, asks questions and participates, and he is now even joking. She has enjoyed working with him and wants me to send her pictures of him and progress comments during the summer. She got attached to him being that he is the only kid with autism left in her class. The class started with 4 kids, and he is the only one left. The other ones moved back into the special classes for kids with special needs as the environment was too difficult for them. My baby survived it and excelled :)

His K teacher told us a funny story that I wanted to include in today's blog. On Tuesday, I told Jonathan that we were going to see his DAN! Dr. on Wednesday and that he was going to get some blood out. Well, he went to school and told all his friends that he was going to be absent on Wednesday because he was going to the doctor to get ALL his blood out. The teachers laughed and asked him if he was sure it was going to be ALL his blood out, and he said yes. Then his teacher said, no honey, the doctor is just going to get some blood out in a small tube (now I know why he asked me about the tube). Anyway, the next day, the teacher had forgotten why Jonathan was not in school and all his friends said "because Jonathan went to the doctor to get ALL his blood out" :) The fact that he is sharing so much with the class and they remember fills me of happiness.

The K teacher gave us already his readiness score. This is the test that kindergarteners take to pass to first grade. The maximum score is 193. The kids took this test 2 weeks ago. His score was 192. I cannot remember what the average score is. But regardless, she was extremely excited to share this with us because it shows that he already behaves, reads, and writes as a First grader.

I told everyone in the room that since we were told that he does not qualify for the county's extended school year program, that we had enrolled him in regular summer camps with the county's park program and they were all thrilled. Particularly his teacher said that he will love them and excel. He is ready.

Summary:

The fact that two independent groups of people (his DAN Dr. and his school teachers) feel that he has mastered most developmental issues except expressive language and that needs to mature on social cues and interactions and that he is ready to be in regular summer camps give me a good indication of his progress. It has been quite amazing.

But I can't say that he is recovered yet because recovery to me means indistinguishable. I admit though that he has come a very long way. And, like a friend of mine says, "you cannot tell that he has any problems at all until he starts talking. That is when you know he is a bit different". So he is not indistinguishable yet. I agree with the doctor that we have 1.5 to 2 years of chelation left. And in addition, I really need to work on his expressive language skills and voice intonation. I would like to do 3 more loops of Tomatis auditory processing therapy, I would like to do 60 sessions of neurofeedback therapy and I would like to enroll him in more group speech programs where the kids read stories and need to express what they are reading and get corrected by a speech therapist. In addition, I will continue with chelation and biomedical interventions until Children's Hospital drops the label. I am going to finish the alternative biomed program I am doing this summer and then go back to Yasko.

We are almost there!!!!

"I Wish It Was Saturday Already"

2008-05-27T21:25:00.009-05:00

It has been a couple of weeks since my last update. So I'll try to keep it short and sweet.

Improvements:

Expressive Language: Jonathan's language keeps improving. I notice improvements daily.

I was shocked today when he told me that he wished that it was Saturday already because he wanted to play with his Wii. We were so active this weekend, that he had little time to play with the Wii. But it isn't just that. The fact that he understands and can appropriately use the word "wish" is a tremendous milestone. I had never heard him use it before.
More language examples. He came and asked me where his computer was. Daddy told him that it was in the living room and he came to ask me where the living room was (remember that he is just learning all these new words and definitions, so living room is new to him). I told him and he went to check it out. He couldn't find it and came back to tell me that he couldn't find it. I went with him and said "yeap, Daddy lied to you, it isn't here". Daddy screamed from the back telling us where he put it. I opened a drawer, and there it was. But I asked him why he wanted it since he couldn't play with electronics during the weekdays, and he said "I know mom, but I want you to put it on the table so I can see it. I won't touch it until Saturday. But on Saturday, I am going to play with my computer and my Wii".
Another example was this morning when I dropped him off at school. I took him with Vanessa and getting them ready to go to school in the morning is challenging. They are both high-maintenance. Today was going to rain and Jonathan asked me yesterday to give him his umbrella (he has a dinosaur's umbrella that I bought him a month ago). Today he reminded me, and I told him that I didn't want him to take it to school because he was going to lose it and I didn't want him to lose it. And he said "but mom, I am not going to lose it. I promise. Please, I want to take my umbrella to school." When I asked him why he said "because everyone has one and I want to have my own umbrella too". That was pretty incredible to hear, so I let him take his umbrella. I didn't even care if he lost it. However, I made him promise me that he wouldn't lose it. When I got him, there it was!!!

Social Interactions: Jonathan really enjoys playing with other kids and in groups.

Lately, it has been wonderful to watch him play with other kids and get along and follow their leads. He is not overwhelmed. And if he doesn't care about someone, he will tell me. He now can tell me who he likes to play with and who he doesn't.

Energy Level: out of nowhere, he is always full of energy.

The past month has been incredible. I have not heard Jonathan complain that he is tired in a month. Anything we do, everywhere we go, he is engaged, curious, energetic. At home, he won't stop. He is either playing with Vanessa or looking for things to do. He is always on his scooter. Quite a change. Pretty dramatic actually.

Reading: He can read full sentences and small books.

He is reading better and now is paying more attention to punctuation and meaning (pragmatics).

Areas of concern:

Obsessions: he is still obsessed with electronics.

The Nintendo Wii, our telephones, PlayStation, Daddy's iPOD, my digital cameras. He is very drawn to electronics. Since we cannot remap his brain not to be to drawn to electronics, we are trying to control their usage. No electronics during weekdays and limited hours during weekends are the best approach. We let him play with the Wii on Saturday and Sunday morning and then we do activities outside the house for hours so that he does not have the temptation to play. We also let him play for 30 minutes to 1 hour before bedtime.

Social Interactions: he is bossy.

If things don't go his way, he gets confrontational and bossy. He will argue, and sometimes he will compromise and others we need to intervene. This is one of the hardest things for him because he is still lacking social cues.
He has turned into a sentimental and also empathetic kid. He is particularly concerned about Vanessa's well-being. A couple of weeks ago, at a playground, a kid threw a ball at Vanessa and Vanessa started crying. He confronted him and said "hey, do not hurt my little sister", and threw a ball back at the kid. That was quite incredible to watch.
He is learning to express his emotions much better. He came to me a couple of weeks ago and looked at me and said "Mommy, I love you very much. I want to be with you forever." And when someone pushes him or tells him something he does not like, he is doing much better at controlling his emotions and letting them know that he is not happy.

Stims: Self-stimulatory behaviors

He is still humming quite a bit.
He is not walking on the tip of his toes that much, but he still does it.
He is still sucking his thumb, but has dramatically reduced the frequency and length.

Health / Gut: still not healthy

Since I removed a number of supplements, he started having gut problems. His leaky gut returned and he is having bad bowel movements. He actually had an accident last Thursday and my dad had to go get him at school. Nothing bad. I had ran out of Candex, and he is a yeasty kid. I added it back on Saturday, and his gut is doing much better.

Expressive Language: still a bit rote and lacks melody. Not age appropriate either.

My biggest concern, even more than the lack of melody, is that he still does not speak like a 6-year old and therefore in certain situations, he does not know how to play with other 6-year olds. He understands a great deal, but since he has a lot of catching up, games like treasure hunts are not known to him and he cannot follow and direct other kids as well. But he is getting better and does not feel intimidated.
Also, sometimes when he speaks, other kids and adults don't understand him. I don't know if it is because his language needs more melody and intonation or if his is just not pronouncing certain words correctly. I have a meeting tomorrow with a speech pathologist to assess him.

Despite the items in the "areas of concern", I must say that Jonathan has come a very long way. It is like a dream come true. 3 years ago I cried when he came to me, out of the blue being in his own little strange world, and gave me a kiss. I thought that was the biggest breakthrough. Then when he could tell me with drawings (happy and sad faces) how he felt. That was huge. I have somehow forgotten the terrible and saddest moments. The improvements from the therapies are sticking and we see little regressions when we change things in his protocols.

Last week I was notified that he is going so well in Kindergarten, that he does not qualify for ESY (extended school year) in the county. I was counting on that for the summer and we saw ourselves drowning with anxieties regarding what to do with Jonathan. I don't want to send him to camps with kids with special needs that are in worse shape than he is because I want him to be around neuro-typical kids his age as often as possible. First grade is going to be tough and I want to expose him now when kids are not as mean and he is still pretty innocent. So after much research, we enrolled him in 4 different camps with the county parks. I hope he enjoys them. A couple of weeks of sports, a week at a farm, an a couple of week doing all kinds of indoors and outdoors activities. I am scared of how the teachers will react to the fact that he is on the spectrum, but I will meet with them personally the first day to explain and hopefully they will embrace him. The public school system and public parks have an obligation to not discriminate. And since he does not qualify for special services, he needs to be admitted in regular classes. Keep your fingers crossed.

Okay, this turned out longer than I originally anticipated. I have an appointment with his DAN! Dr. tomorrow and I will write more about it then. Here are a couple of pictures from this past 2 weeks. Enjoy!

Improvements Hold

2008-05-18T21:59:00.004-05:00

I have not written in 2 weeks. It has been busy. But Jonathan is doind very well.

It has been 7 1/2 weeks since he finished HBOT and 6 weeks since I stopped the majority of his supplements (including enzymes and herbs). I actually stopped all supplements for 2 weeks. Then, I restarted some supplements.

Because of his high liver enzyme, I decided to give him a break from most supplements and chelation. I added supplements from www.GetHealthyAgainStore.com and removed all the enzymes and herbs. I have kept the mitochondrial cocktail, vitamins and minerals, MB12 shots and cod liver oil. I started him on 6 supplements from GetHealthyAgainStore.com on April 25 (Rejuvin, DHLA Nano-Plex, Zeolite Enhanced, PRP-Factor, Glutathione PleoLyposome, and Carnosine). He has reacted very well to these new supplements. I know these are not approved by the DAN! community or Yasko, but I read information about these and decided that Jonathan needed a change to spark improvement. I want to do this for 90 days and then run some tests to see how I can get back to a more "Yasko" type approach.

His improvement in the past 6 weeks has been phenomenal. My father left on vacation for a couple of weeks (just a week after I stopped the supplements) and when he returned he was shocked with the improvement.

The most noticeable is his energy level. He is not tired anymore. Not ever. From school, I have not received a note from his teachers in about 5 weeks and last week his teacher wrote me that he is doing absolutely great. Here is what she said: "He is doing such a fabulous job. He needs very little redirection, if any. He pays attention, participates, and even helps others. He is such an eager learner. I have seen so much growth in him. I can't wait to show you his DRA Word Analysis Assessment. I can already tell that he tested high. 3rd quarter and 4th quarter are proving to be very successful for him."

I credit the majority of his improvement to the HBOT. We noticed in the first 2 sessions that the biggest improvements were noted 6 weeks after he had finished all the dives. But since I started giving him the new supplements, that is when we noticed a huge improvement in energy level, attention, interest, engagement with others, etc.

Today, I opened the car's trunk and a bag of clothes fell out. There was a glass container and I thought it broke. We have been very careful lately with our language not to curse in front of the kids. However, I said the "sh" word. He calmly, from his car seat, said: "no mommy. don't say that word. Say "Oh man!"". That blew my mind. And like that, he is processing input better, he is expressing better, he continues to have little if any sensory problems.

One new thing is that he now has to sleep with a stuffed animal. An animal of his choice that will keep him save from monsters. He has been having night terrors. But the fact that he asks to sleep with a stuffed animal is a huge milestone achievement. He is also telling me that he wants to be with me "forever".

The issues we continue to observe are: (1) expressive language is still difficult. It is hard to describe in words why, and I'll video tape him and add a clip to the blog to keep as a record. But he cannot control his volume, his tone is very flat, and when he speaks in large sentences, his words are sometimes not in the right order and sometimes he speaks and cannot be understood. (2) OCD. He still has obsessions with electronics - phones, video games, digital cameras are his favorites. He is not even playing with the Leapster any more which used to teach him a great deal. Now he grabs our phones and plays with the settings, he plays with the settings of the Nintendo Wii instead of playing with games, he takes pictures and plays with the settings and changes the pictures formats, etc. (3) humming. He still hums quite a bit.

He Is Amazed with the Caterpillar

2008-05-05T21:26:00.004-05:00

During this school year, Jonathan has been particularly interested in books about caterpillars. I don't know why, and it has not been an obsession. He simply likes caterpillars.

Today, he saw them in person (no books or pictures) all over the back yard and loved to play with them. He was so happy following them and staring at them really close. He kept saying that they were looking at him. I loved seeing his big happy smile.

He has been doing incredibly well the past week. I made a really big change in his protocol on April 25th, and we are seeing remarkable improvements. My dad came back from his vacation and is amazed at how much he has improved in just 2 weeks. His energy level in particular is high. I will post more about the new protocol soon. I believe the improvements come from a combination of making changes to his supplements along with the improvements that we were expecting from the HBOT. We normally see the dramatic improvements 4 to 6 weeks after we are done. And we are right about there.

For my own record, just want to note that his expressive and receptive languages have improved, but his comprehension and retentive memory has exponentially improved. We had a terrific weekend. He played with everyone, he participated in every family activity, he is even understanding simple jokes. It is awesome.

Other improvements we noted are: he is hardly sucking his thumb and touching his ears when he does; he is not scratching his throat like he has allergies; he is still humming, but less than before.

He is still obsessed with electronic toys and will not play by himself with regular toys. But if other kids or adults are playing, he will play.

Sensory Sensitivity Issues are Dissapearing

2008-04-27T22:16:00.004-05:00

Between yesterday and today, I realized that Jonathan's high sensitivity to touch may be totally gone. It started to improve when we started biomedical interventions. And since last summer, he has been more willing to try more things. But this weekend was exceptional.

Yesterday, he played at a birthday party with other kids barefooted and in a bathing suit without a shirt, getting wet and walking and falling down on grass. Last summer, he had to wear swimming shoes to walk on grass. And he would not touch it. Yesterday, he did not have any issues walking barefooted on it. He did not have problems playing with a bunch of 6 and 7 year old kids (rough kids - Vanessa could not play for more than a few minutes without getting hurt). He was not overwhelmed about the number of kids and the types of games they were playing.

He was very curious about the piñata

But I test the level of tolerance based on his reaction when getting his hair cut.

Haircut Problems History

I have been posting about his improvements when getting a haircut. But today was by far the best ever!. I feel that he mastered it. Here is a recap.

When he was a baby (7 months), I cut his hair real short (Old Wives' Tale that if the head was shaved early in life, their hair would grow thicker and fuller). I used a hair clipper and shaved it all off. He had no signs of sensitivity problems. Actually, he was smiling.

When he was 18 months, I took him to Cartoon Cuts and they cut his hair and put it in a small bag labeled "my first haircut". He did not have any problems.

His hair was so fine, that I decided to just trim it once in a while instead of taking him to the hair cuttery. He was very good. I would sit him in his high chair, put a towel around his neck and he would be watching a cartoon while I cut his hair. No problems.

During the summer 2004 (he was 2y 4m), Daddy and I decided to take him back to Cartoon Cuts to get his hair cut really short because he sweats a lot and I could not get it really short with just scissors. I sat him on my lap and although he was a bit uncomfortable with the clipper, it wasn't bad.

Jonathan's sensitivity to sound, touch, light, and different tastes became exponentially out of control about a month after his second flu shot when he was 27 months.

We went back to get a haircut when he was 28 months, before we went to the beach, and the lady could not use the clipper, and had to use baby scissors because Jonathan would scream if she used bigger scissors. It was a horrible experience and I decided to cut his hair from then on. I would trim it in the bathtub. He was diagnosed when he turned 30 months.

We decided to try the hair cuttery again 2 years ago, when we turned 4. His touch sensitivity had diminished tremendously by addressing yeast. So we decided to give it a try. It was a horrible experience. It was so bad, that the lady even cut him a bit on his back neck because he could not stop moving and screaming. From that day, every time we went, we told them no clipper.

After we were done with the first 40 HBOT dives (summer 2007), we took him and he was able to tolerate it better. Just like the dentist, if he knew ahead of time what to expect by touching the device, he could control himself a bit. However, he had to hold my hand and would move uncontrollably. The neck clipper was always problematic.

The last time we went (I logged it in this blog), he was much better. The clipper would give him a tickle sensation in his back and that made him move, but at least he would not cry or scream or move uncontrollably.

However, today he totally mastered getting a haircut. The video is a bit long, and unless you have a child with autism with sensory integration problems and have lived the nightmare of getting him/her a haircut, this looks like a normal behavior. I wish I had taped him in the past, but it was so overwhelming to deal with this, that I never video taped his horrible behavior. So to us, this is actually a huge milestone in our recovery journey.

Energy and Endurance Keep Improving

2008-04-25T22:26:00.002-05:00

I received the blood work for the mitochondrial disorder markers. I must admit that I was disappointed to see that they are normal because I continue to look for his missing link. The search continues...

This past week, Jonathan has shown to be more energetic and coordinated. In the past month, since I stopped the CCK, and a few herbs, his hunger has dropped. And as a consequence, he has lost 4 pounds. I think that he lost them because he is not pigging out like he used to and he is jumping on the trampoline more and doing more exercises both at school and through Tae Kwon Do. Don't get me wrong, he still eats like a champion. Just not all the junk food anymore. And I am going to continue to increase the amount of vegetables and fruits. Little by little.

We got the report card for the 3rd period and he got a 4 out of 5 in all areas. That is what he needs to pass Kindergarten I believe. The teacher also made a comment that Jonathan has improved in this period and urged us to read with him more to help him understand what he is reading. That is the hardest part right now for him. It is called "hyperlexia". He reads very well, but does not understand what he is reading (pragmatics). He is getting better.

He had a rough day at school on Wednesday it seems. I didn't get details but got the log marked with half the square. Which means lots of prompting took place. However, there were no issues the other days. Perhaps a bad day (like we all have sometimes).

Here is a short video of him at Tae Kwon Do. Notice how he is paying close attention to the Master, he turns to read his body language, he starts quickly and with good balance (they did this for 15 minutes and by the end, all the kids were practically walking), and he works hard to tag the kid in front of him until he does. Notice his reaction when he does it. Very appropriate for a child his age.

4 Weeks After HBOT

2008-04-19T23:03:00.001-05:00

This week has been phenomenal. Jonathan has been doing very well at school, he has been very engaged at home, his language is much better, he is much better at reading body language and facial expressions, he is also much better transitioning from activities to different ones.

We went to a party yesterday, and he was happy and social with everyone. He is not the type to invent games, so he stuck to playing with my phone. But one of our friend's come over with his kid and Jonathan really likes playing with him. A. was great and flexible and played along with whatever Jonathan wanted to do.

Today we went to the amusement park, and I was truly amazed to see how well he did. He was a "normal" kid. Had so much fun, was so engaged with the other kids, played all the games, even asked us to get him a sword and played with it.

We had a very fun day with the kids. Here are some pictures.

Anxiously waiting for his turn. No pushing, no strange behaviors. Just stood and observed the ride until it was his turn. When the lady opened the gate, all the kids ran to the helicopter. He wanted that ride also, and noticed that there was another one, so as soon as he saw 2 kids started climbing into one of them, he ran to the other helicopter and when he got there, he turned and yelled at C. and N. to come join him. Another kid got in as well. He had excellent motor planning today.

He loves to drive cars. And C. was so excited to spend time with Jonathan, he wanted to get on all the rides with Jonathan. So they both drove this Jeep twice together.

He loved climbing these rocks and had pretty good balance, but I can tell that he needs to do it more often to gain more confidence.

While Jonathan was with Daddy at a ride that Vanessa cannot get onto (she is not tall enough), she decided to get her face painted.

Jonathan really liked it and decided to get it done also. He picked out the design he wanted.

Vanessa was very proud of her unicorn face :)

We had attempted in a couple of occasions in the past to get Jonathan to get his face painted. But due to his sensory integration problems, he could not tolerated it. Today he amazed us. He did not even move. He sat still and enjoyed every bit of the painting.

This is a great milestone that we have mastered. Sensory Integration dysfunction was the first thing that was diagnosed. No one could even touch this kid he was so sensitive. And now, he can get his face painted. Amazing!!!

He is turning out to be quite independent. He knows how to get his own tokens and will not let me do it. I give him the money, he gets his tokens, put them in his pants' pockets and goes to play. My baby is growing up.

He absolutely loves air hockey.

The improvements are truly amazing. In the 7 hours we were at the park, he did not complain once that he was tired. He actually was full of energy.

On the way home, he spoke to me for about 10 minutes about the solar system, the planets, the earth's core and crest, etc. These are topics that he has been reading in a book at school and he is very curious and likes this subject. After he was done, my husband and I discussed how we know that Jonathan will always be driven to those subjects, math, physics, etc. And I told him that my biggest concern is to get him to speak like a 6 year-old so that he can have a normal life. He will always have his intricacies and passions. But the important thing is that he is almost out of the trenches and we need to fine-tune him so that he has a decent life at school. 3rd grade is very scary to me. I have 2 years to fine-tune his language so that he can survive mainstreamed 3rd grade.

Continues to Do Well at School

2008-04-16T22:28:00.007-05:00

I started him back on the supplements on Sunday and Jonathan didn't seem to have any problems.

Sunday was a very special day because Jonathan did something that was out of the ordinary. He spent almost 4 hours with 5 other kids playing on the backyard of a friend's house. This friend lives in a nice and secluded neighborhood and his house backs to some woods and a small pond. The kids walked around, and played with rocks and sticks and played games, talked to neighbors, etc. Jonathan stayed with them and not only did he follow other kids directions but gave some ideas about the things they could do. For the first time, I didn't feel fearful that something was going to happen to him that he couldn't handle. He walked on big rocks, and fell down on the grass. When he got his feet wet, he was a bit disturbed and came to me. I took his shoes off and about 30 minutes later he was out, wearing just socks, went back to playing again. It was awesome.

This week, the teacher sent a note saying that Jonathan is doing well at school. No additional prompting to complete his work is needed. That is encouraging. But I admit that he still needs extra help doing his homework. He is better than before, but he still gets distracted easily.

His conversational language keeps improving. And he is now describing things to us. He does what he can to describe items or situations with his broken English, but he is doing it better than ever before, to the point that we now understand what he means.

Someone left a comment asking me to expand on the neurofeedback information. I don't think that regular neurologists do this therapy. You need to find a specialist. Neurofeedback is a type of neurotherapy - a type of alternative therapy. It uses technology that trains the patient to regulate brainwave frequency by rewarding the beneficial brainwaves and inhibiting the less desirable ones. After a few sessions, the patient learns to gain the ability to self-assess and self-regulate. It has been shown to improve motor and mental planning and sequencing as well as processing speed, organization, and focus.

High level overview from what I understand, a digital EEG amplifier reads brainwaves signals from electrodes placed on the person's head. Brain frequency patterns are then transmitted to a computer operated by the therapist (brain mapping). The patient then learns how to play a video game in which the action can be started and maintained by the correct brain frequencies (no hands, just brain frequencies). After several sessions with the video game, the patient will have developed the ability to recognize and alter particular brain waves. Practice sessions allow clients to sustain brain control in everyday life.

After speaking with several parents that have tried this therapy, it seems that it works best on the high functioning kids. The lower functioning kids do not respond as well, or don't respond at all to this type of stimulus.

You can learn more about neurofeedback from this website - http://www.crossroadsinstitute.org/ - , but I don't know how you can go about finding a local therapist. Check with your neurologist.

Regarding the MAP test through Amy, I have not done one in a while. I need to re-run it. But last time I did it, she emphasized on more ATP, more CoQ10 and Acetyl Carnitine, along with many other supplements including the Mood D and Mood S, and Clostridia support. I have been giving him those plus the other supplements she suggested in his GAR, but I think I needed to increase the ATP. I called her office (because she even wrote it in one of the urine metal tests), and they suggested increasing it to 1.5 pills form the .5 I was giving him. Then, just last week, our DAN! Dr. recommended increasing the CoQ10 to 100mg (from 50mg that I was giving him) and the Acetyl L-Carnitine to 1000mg (from the 250mg I was giving him). I did that this week, and he is less tired, actually he is more active, always looking for something to do. So that seems to help. I don't have the blood results, so right now it is just anecdotal.

Regarding clostridia, even though his MAP showed that the marker was a bit high, after I did a full round of Flagyl, I honestly did not see any changes. Now that I have completed 120 dives of pure Oxygen through Hyperbarics Oxygen Therapy (which I was told kills clostridia), I am going to run the MAP test again to see if the markers have improved.

Dr. Amy believes that Jonathan has the ACAT mutation, but since I haven't ran the latest SNPs, I don't know. I added some of the ACAT supplements and I honestly did not see much improvement with them. When I run the test again and find out what other SNPs he has, I will add the necessary supplements. Until then, I am following the Vitamin K2 protocol to lower his oxalates and that actually seems to have worked better than the ACAT supplements. I don't think that there is a problem with the ACAT supplements. But I believe it has to do with the dosages. I give him 5mg of Vitamin K2 instead of 1mg for instance. But there are more supplements in the ACAT list than the Vit K2. I cannot give this child more supplements than what he already takes. It is crazy.

My Son Gave Me Flowers

2008-04-12T22:21:00.007-05:00

I took Jonathan this morning to the lab to get the blood work done for mitochondrial disorder markers. Jonathan behaved incredibly well. The people were extremely nice. And since I put the anesthetic cream on his arms an hour prior to appointment, he did not feel any pain. Making the process very smooth. They took 6 tubes full with blood. The tests are for Lactate, Pyruvate, Ammonia, Carnitine (free and total) and Creatine Kinase. I assume we will have the results next week and adjust the mitochondrial cocktail according to these results until we see the specialist on June 19th.

After that, we went home to get Vanessa and headed over to a very good friend of mine's house. We spent the day with her, her husband and her 2 kids (one is almost 3 and the other one is almost 1). We first went to eat lunch and then to the playground. At lunch, Jonathan was very well behaved and ate all his chicken with no issues.

On our way to the playground, Jonathan realized that there were daisies all over. He picked one out and came towards me and told me that he loved daisies. They are beautiful flowers and make him happy. Then he gave it to me and said "for you mommy. I love you". I totally melted. He had never given me flowers like that. A few times in the past, Daddy would get one and tell him to give it to me, but he would just give it to me without words and turn around. The action didn't mean anything to him. But today, it did. And it was totally spontaneous

When we arrived at the playground, he played with Vanessa and E. (the 3 year-old boy) for almost 3 hours. He complaint at some point of having a stomachache, but for the most part, he did very well and had a lot of stamina. He went to a little garner nearby were flowers were just starting to bloom and brought me another one.

He also wanted to plant trees. He found a big dead branch, and he insisted he wanted to plant it. I tried to explain to him that it was dead, but he insisted that if we planted it, it would grow again. So I helped him plant the tree.

At my friends house, Jonathan played beautifully with E. and Vanessa. He realizes that E. is little and had a lot of patience with him. E. liked to push him, and jump on him and Jonathan tolerated it well. Towards the end of the day (we spent 6 hours with them), Jonathan was tired and asked me to go home.

Again, I do not notice regression of any kind yet. I have not given him supplements since Tuesday morning. I am going to start back tomorrow and see what happens.

Without the supplements this week, he has been waking up with more energy and earlier than normal all by himself. I wonder why.

Kids playing at the playground.

Jonathan enjoyed climbing on all the different figures

The kids played running down the hill for a while. Jonathan got tired after about 5 times. Vanessa and E. kept going for about 5 more rounds.

It is hard to tell unless you click on the picture to enlarge it, but here is the dead branch that Jonathan planted. He was very proud of it.

A picture of E. and Vanessa.

Jonathan walked around the park on his own and found this. He pretended it was a coconut. He was very protective of it (both Vanessa and E. wanted it) because he was the one that found it.

My beautiful flowers!!!!

A Week with No Supplements

2008-04-11T22:32:00.003-05:00

This week has been particularly interesting. As I finished reading the book from Dr. Bryan Jepson, quite a few theories came to my mind. But the one that I decided to investigate more deeply was "mitochondrial disorder". His low muscle tone and excessive tiredness is sending me towards that path. For the past 2 years, Dr. Yasko has kept pointing out that I need to focus on the mitochondrial cocktail. And whenever I give him CoQ10 or Carnitine in higher dosages, his energy level gets better. So I contacted his DAN! doctor and he told me to run some blood work this week along with making an appointment with a specialist. I got the appointment and I am going tomorrow to Quest to get the blood work done.

In order to get a good baseline from his blood work, I stopped giving him all supplements, shots, chelation, probiotics, everything, on Tuesday.

Surprisingly, he has done quite well this week with no supplements. He did very well at school. No negative comments all week. The only problem I saw is that he immediately got constipated.

On Wednesday, he had his Tae Kwon Do Yellow Belt test and did very well. See the video. I am so very proud of him.

Today, we went to see a neurologist who ran an EEG and an attention test to see how Jonathan's brain is doing. She does neurofeedback therapy. I have to admit that I was totally shocked with the results. His attention test shows some attention problems, but what really made me drop my mouth was that his brain activity is extremely high. All around his brain, but particularly in the back right side of the brain, which should be the calmest during a relaxed test. He has so much activity going on that the doctor feels that he is tired because his brain is working too much all the time. Our brains normally use 20 to 25% of energy during a typical day, but Jonathan's brain, if it is the way it was today at 9am, it looks like it needs about 50% to 60% of energy. No wonder why he is tired, she said. He takes everything in. His brain is doing little filtering. However, he has learned very well to control it. She said that she was impressed that given his current brain activity, he was able to do the attention test and get the scores he did. He was below the median, but right within the standard deviation.

So perhaps a combination of both mitochondrial and high brain activity. She told me that he would greatly benefit from the neurofeedback to get even more control of his brain and improve his attention and focus. And she told me to continue with biomed because it is imperative that we get the metals out. The more the merrier.

We went to the movies today to see "Nim's Island", which is a rated G movie, not a cartoon, and he was totally engaged until the last 7 minutes when he didn't see much action going on.

He has been talking a lot this week. Very engaging. Lots of humming. Less toe walking.

2 Weeks after HBOT

2008-04-06T21:28:00.012-05:00

This past week has been encouraging. I have a love-hate feeling towards HBOT. Jonathan starts well, then he regresses, then he gets better, then he regresses even more. But he normally starts to show some nice improvements about 3 to 4 weeks after we are done. That has been the experience in the past 2 sets of dives. This time, he regressed tremendously the first week after we were done (which worried me very much), but started to show good improvements the second week.

He had 2 very good days at school this past week. The teacher sent a couple of nice notes. On Thursday, he didn't even need any prompting to do his work. He has been doing very well at Tae Kwon Do as well. He is ready for next week's yellow belt exam.

On Friday, we went to visit our friends and Jonathan played with the kids Nintendo Wii and then other games and they all got along very well.

Jonathan's receptive language and attention has gotten better in the past week. For instance, today we were in the car and Jonathan was playing with the GPS, when Vanessa asked "Mommy, when we get home, can I play with the number one?". She meant the Nintendo Wii remote control number 1, which is the one that controls the games. She was not talking to Jonathan, and Jonathan was mining his own business. But Jonathan immediately responded (before I did): "yes Vanessa, you can have number one" as he continued to play with his GPS. His is doing this a lot. He is paying attention to our conversations now also, which means that we need to start watching more closely what we say.

He made a few comments today that made Javier and I stop and think that his language has improved in the past week. I can't really write any examples, but both expressive and receptive language have improved this week. It seemed easier to speak to him this week.

He also seems more social. We went to his pediatrician's office to get his allergy shot, when he noticed someone walk into the office and write his name down and looked at me and asked me if I knew him. When I said no, he went to him and asked him what his name was. It was weird and not appropriate, but I look at it as a sign of more curiosity.

I am still concerned about some of his behaviors. He has been walking on his tip-toes more than ever. He is also humming more than ever before. And he is walking without really paying much attention, more than ever before. However, he is rocking less.

Javier and I met with a director of a new school last week. It is a private school. Their mission is exactly what I would want for Jonathan, but we cannot afford it. However, it was good to go and hear about some of the challenges that Jonathan might be facing in the near future (3rd grade in particular). And besides the social relationships and the bullying he will need to deal with, it is the entire "pragmatic language" problem that he and all the children with autism have that might make his educational years more challenging. We are not really addressing that in his current IEP and I don't know how the public school system will deal with that. I am going to bring it up in the next IEP meeting which will take place in June.

Here are some pictures I took from this past week.

Teaching his grandfather how to play with the Nintendo Wii

Jonathan and Vanessa play all the time. Here they built their own train track and brought the trains up from the basement. They did a lot of pretend play where Vanessa needed help, and he came to the rescue, etc.

Jonathan loves air hockey and had a blast playing with C. and N. last friday.

Notice how Jonathan is paying attention to the body language of these two boys. Also, how he is so excited when he makes a point (making him competitive) but does not mind when the other kid makes a point.

April 2 - First World Autism Awareness Day

2008-04-02T00:07:00.001-05:00

In November 2007, the United Nations declared that April 2 would be an annual day to “encourage Member States to take measures to raise awareness about children with autism throughout society.”

In the United States, the Centers for Disease Control and Prevention estimated in 2007 that as many as 1 in 150 children in multiple areas of the United States had an autism spectrum disorder. Parents must often navigate their own paths to find helpful therapies and finance expensive education and other services independently.

CNN.com is helping spread the word.