Dismissal of some IEP Services

Quarterly DAN! Dr. Visit:

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

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

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

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

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

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

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

First Grade IEP Meeting:

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

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

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

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

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

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

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

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

Summary:

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

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

We are almost there!!!!