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   Follow up to the Big Day (Autism board)

12th March 2005
Except that aspberger's is rarely diagnosised so young- yet the lack of a full range of emotion and behavioral symptoms are still there- its just too early to tell, and as I described in my case- doctors are few and far between around here and "waiting" lists are well over a year for the ones who do exsists! Recently the company who makes serzone discontinued making the name brand, we still had to wait two weeks for contact with the psychiatrist who writes my son's prescriptions (he usually available two days every other week I believe for the whole county) to return from his vaction. Serzone is not something you want to just stop- thank heavens Jay's pediatrician has known him from birth and reluctantly steps in when this happens- she's a PA and should not be writing prescriptions for psychiatrict drugs except under these emergency conditions. As it turns out the pharmacy was given incorrect info - the non-lable brand will continue to be available and they actually filled his prescription, just three days late.
To answer the Jeffrey's moms questions- when they put Jay in my arms at birth I was surprisesd and confused as to why to he didn't look at me like my daughter had. She never took her eyes off me or who ever held her- he never noticed who held him- but focused intently on fans, shades, patterns ect- just not people, he slept maybe two hours at a time until he was 3ish, he always fell back asleep but I had to be there to help him. I actually had to sleep with him from 18 months on- he climbed everything and anything- I wondered often -hmm,is this what adhd looks like but doctors have yet to identify in children under 5- time will tell of coarse and it did! And I should say he was a happy happy happy baby, not cuddly, haaaapppy- rarely cried unless pysically injured, There is no history of PDD or autism in my immediate family but my first cousin's son had autism. ( I do believe there is a gene component and this of coarse confirms that my mother's side of the family has the gene) I have ADHD as do my siblings. ( a gene we get from my father's side of the family) Before Jay was officially diagnosised he already had a one on one in preschool because he was such an escape artist and became enraged and dangerous when touched or his personal space was invaded. I insisted that we a "preventative worker" involved (they constantly tried to close our case but he was in crisis so often I insisted they keep it open so that when that happen they would know our home and family inside out and not confuse who he was or assume neglect) I was I guess relieved to recieve the PDD diagnosis because the school kept saying Jay was Oppositional Defiant which is a sad diagnosis with little hope but OD kids are rarely brilliant, and Jay is brilliant and they rarely get good grades in school and now with his learning diagnosis identified he gets 80's and 90's and often 100+ - the highest grades in science in 8th grade! Which proves the ignorant narrow minded educators from grade school wrong wrong wrong!
Jay would have been in a residential placement for years by now except for the glueten free caisen free diet that changed his symptoms, behaviors and growth. He is fourteen and just visited the pyschiatrist for his bi-monthly prescriptions. Jay always regresses in his office (doesnt like people talking about him or mirrors or cats for that matter- all things that look intensly back at him-aspbergers looks soo defiant- smile) - Jay asks again and again and again for this car in his office- its not really the doctor's office, he borrows who ever's office is available for the days he visits- yesterday he looked at Jay's step dad and said "ya-know that is really and 8 year old behavior don't you?" That says it all for Jay- his regression is usually about half his age- I am sure this is different with every child - my profession (I began in this field when he was 5) is to identify possible preschool delays and refer for evaluation- as I learned more and more about development I began to recognize Jay's 5 year old emotional behaviors on the toddler charts- and began to discipline him and set my expectations as such and wa-lah he stopped ragging and began responding! I also raised my expectations to at or or above his age level based on his attention and behavior. It is a daily roller coaster ride but it is who he is and how he functions and I have adapted as have his teachers in middle school.
He spent alot of the first three years of grade school crawling around under desks making bizzare noises because he couldn't write- but his vocabulary and drawing skills are more than four years advanced- but he couldnt access vocabulary functionally to solve problems that involved any level of emotion such as fustration and re-visited the terrible twos! I discovered that he couldnt even write the alphabet in second grade! Finally when evaluated in August before 5th grade for leaning disabilities (it should never never take this long) his reading and writing tested below a kindergarten level with him cooperating- the test was done over serveral days at the end of summer, not in his regular school- hence the cooperation level! (His non-verbal IQ is 118) Yet he had been disciplined and restrained and injured countless time while "refusing" to do activites he truely was no able to dothrough out grade school! arrrrrrrgghh.
The last two years his 8-1-1 teaching staff all have a background training in autism and writing disabilities. His teacher and one on ones have all attended trainings by Temple Grandin who's writings helped me understand and respect my son in ways that I hadn't before. He learns everything orally instantly (as long as there is not emotional component) and at 14 can actually write a paragraph in 30 minutes or so. All his school notes are "guided fill in the blank"
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