IEP Updated - Social Goal Added

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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:

1. Jonathan should receive preferential seating in all academic settings to facilitate attention and obtain the best auditory and visual advantage.
2. 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.
3. 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.
4. A multi-sensory approach should be utilized when teaching Jonathan new information.
5. 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.
   
6. 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

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!!!!

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

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

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!

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

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

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

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

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

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)

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