Where My Son Lives

When he travels around the house doing what the doctors call “stiming” he looks at us like we are the strange ones that don’t do this that we don not require such activities in order to survive. “Stiming” is self-stimulation, which can be opening and closing the window blinds for extended periods of time, watching the tap drip or carrying around a shoe. In my son’s case it is flicking a soft cloth right in front of his eyes, which is visual stimulation. Sometimes it calms him and other times it gets him all excited but it is as necessary to his existence as air is. When he is stiming he leaves our world and goes into his. I’ve asked him what makes his different and he says in his world he is popular, understood and feels happy. It saddens me that this world cannot offer that to him.
I knew that there was something wrong at a very early age but it took me years to convince the doctors. I was just another mother over reacting to what was perfectly normal. As an infant he was colic and it wasn’t only at certain times it was 24hrs a day. The first time I slept through the night was when I purchased a jolly jumper for him and he basically jumped himself to sleep. I curled up around the bottom of him and we stayed there for 5 hrs. To this day sleeping is still a big problem for him.
As my son grew there was more and more strange behavior. He never played with toys or with other children for that matter. He walked on his tiptoe never flat foot. He was always flapping his hands and would spend long hours playing with a pen that made a clicking noise. If he became overly agitated I would put on high-heeled shoes and the clicking sound of the heels on the floor would calm him. As long as he was awake he was either rocking or bouncing. We had to put his high chair up against a wall so he wouldn’t tip it over he rocked so hard. Once my son reached the age of 4 his behavior turned aggressive and out of control. It was a nightmare of hospitals and doctors and he became a guinea pig for various medications. Over the course of a few years he was diagnosed with various disorders such as Attention Deficit Hyperactive Disorder (ADHD), tourette syndrome, obsessive compulsive disorder and Non Verbal Learning Disability (NLD). Finally at the age of 9 he was diagnosed with Asperger’s Syndrome.
Asperger’s Syndrome is part of a sub group which is part of a much larger category called Autistic Spectrum Disorders or Pervasive Developmental Disorders (PDD). Asperger’s Syndrome (or Asperger’s Disorder) is a developmental, neurological disorder characterized by severe impairment in social development, obsessive traits causing repetitive patterns of behavior and very narrow and focused interests. They are usually very clumsy and have awkward movements. Unlike with Autism, children with Asperger’s show no delays in the development of language skills. Once we actually knew what was wrong with my son a whole new avenue of opportunity opened up for us. As a mother the first thing I did was research. I spent hours with my nose in a book or staring at the computer screen. The one piece of hope that I found in almost all of my research was that with treatment children with Asperger’s can grow up to have fulfilling lives as adults. Of course the earlier they receive treatment the higher the rate of success but my son only started receiving real treatment when he was 11 and we have still seen great improvement.
I know from personal experience that the frustration of trying to find out what is wrong with your child is at a level that only parents who have gone or are going through can understand. It seems like the world is against you as doctors treat you as nothing but paranoid parents looking for a reason to excuse their bad parenting. Of course that is where the blame will always be placed by others…that as parents it is YOUR fault. There is no blame when it comes to Asperger’s or any other PDD disorder. There has been some research that shows a possible genetic connection but that is still not an excuse for blame. If I could offer any advice it would be to never give up. If one doctor won’t help you find another and do research especially on-line. There is excellent advice, support and resources to help you help your child. Saying that you need to mourn for your child probably sounds ridiculous because you have not lost him or her. I advise the mourning as a way of dealing with the fact that that perfect child you always dreamed of having who would be so popular and a star athlete just is not going to happen. That is not to say your child will not accomplish great things but it may not be in the way you had hoped. Once you accept who your child is you will be much better equipped to help him focus on all the special qualities he has. It will never be easy but with treatment programs and a lot of love, the life of an Asperger’s child can be one of great joy and fulfillment for him and you the parents.

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