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.