Our journey through autism

Posts tagged ‘high functioning’

US autism journey

Before we had left the US for Saudi I was unable to get insurance or an evaluation for my son, my pediatrician said I could get him evaluated for free by the public school system and that I should add my name to the Marcus Autism Center’s waiting list, maybe by the time it was our turn we would have insurance. So I did that.

I call Marcus and they email me a medical history form to fill out and email back, they add me on the list and say it’s anywhere between 6-12 months. I call the elementary school and they mail me a packet of questionnaires to fill out and mail back, which I did the day before we traveled. This was all at the beginning of Nov 2010.

We come back to the US at the start of April and I get busy with phone calls, I call Marcus and ask what the status of my son’s placement on the list is and they tell me to come in for an initial evaluation by the head nurse for the beginning of May. I call the school and they said they were currently on spring break, so after spring break they schedule him for a hearing test for mid April and an evaluation for the beginning of May. He passed the hearing test, and both evaluations at Marcus and the school were filling out forms, answering questions and observing Bilal while he put puzzles together, or colored, he was asked to throw and kick a ball, to answer questions, follow a story book and the like. Marcus scheduled me for a psychological evaluation for the beginning of August and the school said we would have our first IEP meeting at the end of May. I had never heard the term IEP (individualized educational plan) which has the goals and objectives of my son’s progress according to his current level, what he should be able to master by the end of the semester or year. I learnt later that the IEP is a legal document, where parents may bring an educational advocate or lawyer to attend the meetings, where I can sue the school if I find they were not meeting my child’s needs adequately and that it is a BIG deal. Not knowing all that I attend the meeting bringing Bilal along, where he got bored and started acting up and kinda rushed the whole process, signing where they told me to sign and walking out the door before an hour has passed.  Thankfully I’m dealing with a good, honest and conscious team, they do want to help Bilal improve and reach his full potential, and they did address all his issues and write out a good plan for his IEP.  In June he was scheduled for an OT evaluation where I had to fill out yet another long questionnaire and Bilal was observed holding a pencil, writing, using scissors, building with blocks, doing puzzles, stringing beads and his preferred sitting position and the like, a week later had another IEP meeting this time without bringing Bilal and they just included his OT goals into it. The OT therapist asked me whether I’ve had him tested and have an official diagnosis or not, I told her I was on the waiting list at Marcus and just waiting she told me I should see a developmental pediatrician as they are better trained in diagnosing developmental delays and she suggested a doctor that had a short waiting list. I set up an appointment with her for the next month, a series of 3 appointments.

At the developmental pediatrician its much of the same, filling out forms, going over medical history from pregnancy until today, milestones reached, observing him as he played and did a quick medical check-up of weight, height, head circumference and muscle tone, etc… The second appointment was more like a child IQ test, having Bilal identify pictures, play with toys, copy patterns, building blocks, writing and a repetition mainly of his other visits with Marcus and the school. At this point Bilal had so gotten used to the process he had no trouble separating from us and playing along and following directions. The third appointment was at the beginning of August and it was the results and diagnosis. Even though I was told before that Bilal had mild autism and even though I read several books from the library about autism and could clearly see he had all the signs, having the developmental pediatrician tell me that it was in fact mild autism came as a shock, I was hoping it was anything else, holding on to that chance. She goes on to explain the CARSII (Childhood Autism Rating Scale, second edition) testing  scores, and she gives me pamphlets about autism, the Georgia chapter, flyers from feeding programs, social skill groups, a list of therapists, ABA (applied behavior analysis) therapists, FloorTime, nutritionists, the Toys R Us differently abled toy guide. She suggested doing ABA and maybe following a diet or going on supplements,  and I walk out devastated and overwhelmed, what do I do? who do I choose? she was so serious and made it feel like that’s it, he has autism and you should do all these therapies and live with it. I was lost, and I do the only thing I can do, start making phone calls, I take her doctor’s order for speech and OT therapy to the Children’s Healthcare of Atlanta, I get the blood testing done for Fragile X syndrome and food allergens, he was negative for both alhamdullah, and just read more about autism and all these different therapies both online and from books at the local library.

11 days later I have the results and diagnosis from the psychological evaluation at Marcus Center. According to the testing scale they used he would be diagnosed with high functioning autism and she first started by stating all of Bilal’s strong points and how well he was doing in certain areas and then she went on to explain his weak points, which were mainly social skills and fine motor weakness, he also has speech delay problems but not as low on the scale as his social and fine motor skills. She also suggested a list of therapists, and FloorTime. She said that she didnt think ABA would be beneficial for Bilal’s level and that FloorTime, speech and OT were adequate, she also suggested looking into a feeding program and doing something for fun like Karate, social skill  play groups, scouting, etc. I told her that with this meeting I feel more optimistic than after the developmental pediatrician’s visit, she said that maybe I’ve had time to understand and digest it all, could be, but her method of breaking the news and her suggested therapies made more sense. The Marcus center doesn’t support special diets or supplements as a treatment for autism which made it easier for me to deal with, crossing out something from the looong list of therapies suggested. She told me to apply to the Katie Beckett Deeming waiver and call her at any time for anything. I leave her office feeling pretty optimistic, we were finally done with the whole evaluation process (From Nov 2010 – August 2011), we had 2 similar opinions from 2 different areas of expertise, he was registered for school and we had our speech and OT scheduled and we could start prepared on this long journey ahead of us.

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