Monday, April 2, 2012

The Story of J, Part One

As many may know, today is World Autism Day. According to the CDC   1 in 88 children have autism. For boys, the number is much more prevalent at 1 in 54. Those are some sobering odds. Yet some still don't find it serious enough to stop patting parents on the head and do something. We hear about autism mostly during the month of April and then it's quietly shoved back into the closet to forget. As a parent with a child with autism, I live autism awareness 24 / 7. 
   J is nineteen years old. Although he says a few words appropriately, his communication is mostly through simple sign language, gestures, and pointing. He sometimes will take a trusted person by the hand to show what he wants or needs. Very few get that privilege. Although considered nonverbal, he is not quiet by any means unless he's asleep or contemplative. He is quite vocal whether he's happy, sad, angry, or just wants to tell the world, "Hey! I'm here!"  J loves being the center of attention and will call out in public so that everyone knows he is there. He doesn't care that the attention he nets is usually curious stares or blatant looks of disdain. 
   J isn't fully toilet trained at this point although we haven't given up yet. Adult pull ups work when we are out and about but honestly, he has sensitive skin and does not tolerate them very well at all. He will look for the first opportunity to rid himself of the nuisance and if he can't, there almost certainly will be a meltdown.
   When visiting others, J tends to be quiet unless he's hungry or he's comfortable with the people there. He loves for people to talk directly to him but don't always expect eye contact. If he has decided he likes you, he loves giving hugs. He interacts a lot with men. Women usually merit a shy smile.
  As for his likes and dislikes, J loves food. A typical teenager, the words he uses most are food related. He also loves music. Almost any type will do, but he prefers Latin hip hop, classical, classic rock, International, and Michael Jackson. He rocks to almost anything upbeat.  He's not big on movies and television, but will watch if there is a lot of action and/or music. Although surrounded by cats, he's not a big fan of them. He merely tolerates them in his world but he prefers them to be out of his room and off of the furniture. In the past he has shown a like for horses and bigger dogs such as retrievers.  Smaller dogs get the same treatment as cats.
   As far as whether J was born with autism, although one doctor said he was, I disagree to a certain extent. Looking back, even as an infant he had a certain quality that set off the "mommy radar" but that really didn't show up until he had a well baby visit that included a vaccine or two. Although I had no qualms with his brother getting vaccinated, without even hearing any of the controversy (I was blissfully unaware until J was 6), I felt in every fiber of my being that vaccines were wrong for J. Especially when he emitted a high pitched wail that I've never ever heard another infant make. He also held his breath, which is something that he does to this day when needles are involved. After that (and I was told his reaction was normal, btw) I noticed he loved watching ceiling fans. There wasn't a lot of eye contact from him, even during nursing. 
  As I watched J grow, I was somewhat in a fog because we had lost J's older brother at the age of two and J was 6 months old. J didn't babble the way kids his age did. He did some, but it wasn't to the point of trying words. `He hit other milestones pretty much on time, holding a spoon, walking at 13 months, that kind of thing. Words didn't come till later. I expressed concern about this at a checkup and was again patted on the head. "Do you talk to him?" the nurse asked with a smile. I think I answered Of course, but what I was thinking was, "NO! I stick him in a corner all day and ignore him! Sheesh!"  Of course I talked to him! I talked, I read to him, sang to him. 
  I saw him walk on his tiptoes a lot, and he turned his head to scream sometimes. I thought he was simply playing when he did things like that. He spoke about ten words at 15 months. At 18 months he began losing those words. He would sit and play by himself, stacking legos taller than himself or spinning objects. I would call his name and he would ignore me. I thought he had a hearing loss. I talked to his doctor and got the brush off many times. I was just a mom, what did I know?  I finally convinced the doctor about the hearing problem (only when my husband came with me and agreed there was a problem) and he was sent to an audiologist.  The audiologist tested him as best he could: J paid attention the first time or two and then tuned him out. We were told two things: J could hear just fine but there seemed to be a developmental delay. That diagnosis, along with setting J on the floor and letting him do his normal thing convinced the family doctor to send us to the specialist. The specialist took about ten minutes before diagnosing autism.  Of course, we had to have tests run and this and that done before it was official. So just a few months before J turned three his pdd(pervasive developmental disorder)/autism diagnosis was confirmed. 
    If you've read this far, thank you. I'm not sure where I'm going on this, but I want J's story to be told. I want him to not be ignored or discounted. I am his voice. I want to encourage other parents who have that  mommy or daddy sense to be able to speak up. I want parents to be educated and to be able to speak up for their child or children. We as parents know our children better than doctors, teachers, anyone out there. 

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