He s realizing he is different...

Jonathan joined public school is September 2011 after being in a wonderful private school for 2 years.  We made the decision to put him back in public school to force him to learn how to adapt to a mainstreamed environment.  Our goal was to give him the tools to be able to socialize with a larger group.  And for the most part, he has been able to do quite well.  He is a straight A student and he enjoys the school. He attended this school in the past during pre-K through 1st grade.  However, he still has trouble fitting in and understanding unspoken (and sometimes spoken) cues.  We put Jonathan in a private social skills therapy that has been helping a bit.  But not as much as we had hoped.

Last week he had a very open and honest conversation with me. He told me that he feels different most of the time. Weird even.  "Why do I walk around the classroom twice to get to the tissue box Mommy?  There is something wrong with me.  I feel that I day-dream too much.  I cannot control it.  I also have too many accidents.  I am very clumsy all the time.  Why?  What is wrong with me."  I spoke with him to reassure him that he was okay.  And in the end, he felt better.  The last thing I want to do is break his confidence towards himself.

Yesterday, he then again brought up that he felt weird several times during the day.  "There is something wrong with me Mommy.  I feel that I am in another place. I feel like I am weird".  It kills me that he is lucid enough to realize these things.  How do I handle this?  I need professional help.  The last thing I want is to break his own confidence.  If I am tell him that he has a small disability, he will focus so much in it that it might be counterproductive.  How to handle this?

Status Update

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

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

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

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

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!

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

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!

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

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

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

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

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

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

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

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

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

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

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

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.