Allen Jaymes

In Dec.of 1995 my daughter had a big 9lb. beautiful baby boy. We named him A.J. It stood for Allen Jaymes. He was 2 weeks late arriving and when the Dr's induced labor he got stuck in the birth canal and they ended up doing a c-section 2 days later. He came home with his Mom and for the first 10 days everything was great. On day 10 he didn't wake up to eat and when he did eat he wouldn't suck and breathe at the same time and his breathing was fast. By the time he got to the hospital he was turning blue. He was rushed right in and ended up in Syracuse with left lobar emphysema and had the lower half of his left lung removed the day after Christmas. He spent Christmas and New Years at Crouse Irving Hospital and came home on the 10th. of Jan. After that he went through a series of colds and developed asthma. That was the first thing Allen had to deal with just to be able to survive. But he did survive and Potsdam Hospital calls him their Christmas Miracle Baby of 1995! As an infant dealing with a lung developing and growing at the same time with only half a lung he wasn't developing at the same pace as other children. He would lay in the middle of the floor and watch the fan go round and round until you took him away or shut the fan off. He didn't sit up till 10 mos, walked at 2. Had mid line tongue protrusion and drooled constantly until he was 3. He also banged his head on the back of his hand repetitiously. The list goes on of the numerous delays and inconsistencies. At 13 months we took him to his pediatrician. The Doctor stated that he felt Allen was showing signs of delay and he had some dysmorphic features. I would have never imagined that my grandson was dysmorphic. What was that? It was recommended we take him to Dr. Copeland in Syracuse and Allen was found to be globally delayed. Services had to start for speech, PT, OT, and Special Instructor. We had thought the delay was due to the operation he had. But the dysmorphic features pointed towards signs of it possibly being fragile X. and genetic testing was done. The first devastating thing we went through was his lung surgery. The second was being told Allen had dysmorphic features and was globally delayed. And third he may have fragile X. We just asked a lot of questions and learned as we went along. We just knew whatever he needed we were going to make sure he got no matter how long and hard we had to work to get it. Allen was tested twice for fragile X. Once in 1996 and again in 2000. Both came back negative. He was sent to Watertown for genetic testing and everything came back negative. So what does dysmorphic mean and in who's eyes? He had behaviors of banging his head and withdrawing from playing with other children. (We always said he was a thinker not a doer). Allen also cried from touching grass, foil, wet washcloths, noodles and would cover his ears from noises. He would even cry when the wind blew through the trees. My daughter got a referral to take him to Rochester to have him evaluated in Burlington VT. Both came back with a diagnosis of High Functioning Autism. His speech was good and he was developing better with his therapy. But we were all so overwhelmed with Autism. I had no idea what that entailed but it sounded like something he was always going to have. A.J. was 5. We tried and tried to get ABA which was recommended for Allen for a good 8 mths. But he was diagnosed with Autism at 5 years old and up here ABA services are far and few between. We finally switched service coordinators and went to ARC in Canton. They were new to working with children and only started a new program for ABA for early diagnosis to be able to reach children a early as possible. He was their first. Allen was getting the following services: Speech, OT, PT, Social Skills counseling, and 27.5 hours of ABA in the home. He had to have a monitor on the bus for his safety as well as the other children. This was in Kindergarten. He had the same in 1st and this year he has improved out of speech and OT and PT and only getting the counseling. Allen is still receiving 27.5 hours of ABA at home for his aggression and compliance which flows over a bit in school. He no longer is a head banger. His aide is fading out this year and he only needs a monitor on the bus. Because he is mainstreamed in 1st grade and has a report card of 90's and 80's, ARC feel they may no longer be able to carry Allen as a client because they only service consumers that are low functioning. That actually made us so happy to know he is improving so much. This is my point: The only thing that I can recommend for other who have their loved ones stricken by this unforgiving neurological disorder is that they give them a half-way chance at any kind of normal life is therapy, therapy, therapy. Get it as early as possible and as much as they can get. The end of this story is sweet! Allen is 8 years old now and went from being globally delayed and a diagnosis of Autism then to Asperger's Syndrome then to having just a few issues with social situations. His last neurological diagnosis was last month and the doctor can not believe the improvement. We are so happy. The doctor seams to believe he couldn't even say he would have a diagnosis of high functioning Autism at all at this point and we contribute it to all to the people who know about what to do for these children and all the therapy he has had. We feel the more people hear about Autism and it's effects on children and what can be done to improve if not diminish the diagnosis the better each and every child would have to stand any kind of a chance of leading a normal life as anyone else would want. It is a struggle for parents with children with autism just to find the help their child needs. The more people who learn about this disorder the more excepting their child will be, and the best they can possibly get for help for their child. Thank you God for our little boy back! He is our miracle baby. For everyone who has a loved one with Autism...I know you won't but don't give in or give up.... it is worth the wait! (Even for the small steps). Diana Barkley, Allen's grandmother. Lisbon, NY. The larger picture is Allen last year. The inset is Allen at 20 days old at Crouse Irving Hospital.