Our son Mattie was diagnosed with Asperger’s syndrome at age 2. Although we were fortunate to obtain early direction in securing services for our son, this doesn’t mean it was easy. The services were sporadic, qualifications of therapists varied, staffing problems ensued. Waiting lists to see practitioners ranged from 6 months – 2 years (and still do!)
I took it upon myself to get educated in both special education law as well as the intricate details of Asperger’s Syndrome as it became quickly apparent that this was my purpose. We stopped at nothing and worked with Doctors and specialists throughout the greater Boston area.
It helped that before we had Mattie, I had worked as a guidance counselor and had obtained a Master’s Degree in Applied Educational Psychology. I had also worked in a locked child psychiatric unit at a local hospital, so Special Education was not foreign to me.
To increase my knowledge about Asperger’s syndrome, I attended conferences, seminars, and consumed hundreds of books on the topic of Asperger’s Syndrome and Autism Spectrum Disorders. Mattie received early intervention services and attended integrated public preschool. We spent hundreds of hours and spent $1000’s of dollars to get him private occupational therapy, private speech therapy and attended private social pragmatic groups. He made great progress, but the amount of effort was overwhelming and even more challenging was the fact that there was no clear advice on what to do. Although Autism Spectrum Disorders have been around for years there are no real answers and parents are left to figure out on their own what is right for their children.
The progress continued until his second year of preschool, when he was met with a teacher and learning environment that did not do well by Mattie. During this time from September 2004-April 2005 was the lowest point we have ever had. Our son did not want to live as he was in so much pain. Mattie was on sensory overload and he was responding to it by shutting down. He would either curl up or lie down in the vestibule of his school everyday in the morning and afternoon due to the noise and commotion. School officials were at a loss and could offer no help. Our family was in crisis and we were scared for our son.
At home, he would cry for hours and tell me that he wished he was never born. He was 4 years old.
We took him to a psychiatrist from the LADDERS program at Massachusetts General Hospital who asked us if we would be willing to fly out to the National Institute of Mental Health due to his level of concern. Surreal can only describe this experience. We were numb, but eager to press on and ready to fly…except…We had previously made plans to fly to West Palm Beach for April vacation and Mattie was willing to go. I remember his doctor saying, “This may be the worst vacation ever, but try it, it might be just what he needs.” Well it wasn’t the worst vacation ever because once Mattie hit the pool, it was like instant therapy! Our son was back!
Mattie was in Sensory Heaven. I decided at this point we needed daily access to water for Mattie. Mattie, who the week before told us he wished he had never been born, now told us that he wanted to move to this hotel because it has the ocean and a pool in its backyard. The change was unbelievable…Stating to my husband that we needed to buy a house with an indoor pool, his response was filled with financial concern. I was frustrated because I did not know how we were going to upgrade from the plastic pool we had for our son. My husband worked in Commercial Real Estate and the hours were long, the money although pretty good was inconsistent and truth be told he was not very happy. Working long hours at something that doesn’t make you happy is not the recipe for success.
A couple months later I stumbled across “The Success Principles” by Jack Canfield. I had picked it up for my husband, but started reading it and felt it speak to me. I was walking around unconscious and not giving back what I have to give. I had learned so much over the years with Mattie. Strangely enough, things started happening.
My friend called with upset in her voice and said that she needed help with her son. The discipline techniques that she and her husband were using weren’t working and did I have any ideas? The problem was when he was tired or emotionally overloaded he wasn’t able to express himself without hitting. I had hoped that if he was given visual support with choices that he could find an alternative more appropriate outlet for his frustration. I made a visual support for him and it worked!
A few months later I saw a five year old kindergarten student on television being handcuffed by school staff as a means of disciplining her. I thought to myself as I watched the video of this child that these adults were provoking a young child without providing choices for what she could do in the given situation, thus resulting in behavioral outbursts and what appears to be non compliant behavior. I created a second visual support for her. She clearly had special needs and the adults interacting with her were not recognizing them or communicating with her on her level. They were communicating at her.
In addition to those two supports, I also created a visual schedule board. I realized that all children benefit from structure and knowing what is expected from them. Children don’t like to guess, they have too many other things to figure out in life so if you can provide some basic organization for them they can become more successful. Matthew struggles severely around transitions and while it has gotten better over the years from banging his head on glass, vomiting, tantruming to relying on visual schedules to prepare him ahead of time resulting in fairly seamless behavior.
My husband and I joked with each other after we had made a crude prototype that it would be “funny” if we made these visual supports into a product. We said that if everyone would just “be visual” and explain what they expect from children visually, that children no matter what their learning ability would be better off.
It is now one year later and we have risked it all as a family to bring this project to life. When I say risked it all I mean it. My husband quit his six figure job for no salary, the first engineers we hired to make our prototype quit so they could steal our idea and make a similar product. We now have 2 lawyers helping us on this matter and keep in mind we have no salary. On the bright side, we have the support of the Asperger Autism Publishing Company along with Brenda Smith Myles who was rated the number 2 Asperger Autism researcher in the world by the University of Texas and we have hired a new engineer who was clearly sent by an angel. Our new company, Bee Visual LLC, will have my visual supports available by January 2007 through the Autism Asperger Publishing Company and we believe it will not only help children with ASD, but also be a benefit to children with other developmental delays and families with “typical” children just looking for more structure.
We truly believe that if you have a child with special needs then you are a family with special needs and you need to accept it, understand it and embrace it. We hope that our risks and experience will help many families in a positive way. Mattie continues to thrive and has successfully entered the 1st grade with his peers. As far as the pool, we have a picture of it hanging in our kitchen and know it will be ours someday soon.
