A glimpse into the future

I often worry about what the future holds for my son. In a lot of ways it can be hard to picture him as an adult as we are currently focusing on potty training, having him make verbal requests, and trying to reduce the tantrums. It is almost like an oasis, the fact that he will one day hold a conversation with us or be able to tell me if he is in pain or something is bothering him. I can’t wait! I know the time is coming but the road there is and has been a long and arduous one. I want to be able to ease his discomfort at the doctor or when he gets a haircut because these trigger such angry and upsetting responses from him. Most of all I wish I could take away that fear…

A recent event really got me thinking about the future of not just my son, but for all children on the spectrum:

On my way home from work this past Friday I stopped in to pick up some Chinese food to bring home for dinner. It was really warm inside the restaurant and I noticed a few people had ordered and were waiting outside for their food (even though it was hot outside as well). I decided to wait inside by the fan and realized that a young woman was actually sitting there eating and suffering in the heat. Another woman waiting outside was talking on her cell phone but would periodically walk in and turn right back around to go outside. I figured she was waiting for her order as well. Then, about 10 minutes later, this woman (still on the phone) came in and very rudely spoke to the young lady about whether or not she was finished with her meal. She demanded to see how much was left in the container and scolded her for eating so little.

“Do you want to take this home?”, she asked, and the young lady must have said yes because she took the food away and placed it in a bag and started to leave. I heard the woman say, “Take the tray up to the counter” and then she walked out, but not before shouting, “Hurry up!” I realized this woman was an aide of some sort, tasked with assisting the younger woman with daily activities. I was appalled at the way in which she was treated and I was immediately overcome with such a feeling of dread and sadness. How could she speak that way to the person she was supposedly helping? Is this a common occurrence in the care of individuals with special needs? It was so hot in there and she was just sitting there all alone…

I know there has been a lot of progress in raising awareness for autism but there is so much more work left to be done. As children with autism grow up, some will require the help of an aide or other service to help them live a more fulfilling life. We need trained educators and professionals to assist them. As a parent of a child with autism I know that I have to fight for him to get the services and individualized education plan that he needs. For now, my wife and I are his voice, and we use it to help obtain the classes, therapy and resources that will assist him in his development. It is amazing to read and hear about all the parents out there advocating for their children and their needs. I hope that by raising awareness, no one else will have to be subjected to the same treatment as that young woman in the restaurant. I take solace in the fact that with all of our combined efforts we are helping to change the future of autism for not just our own children but also those of the next generation.

Worlds Collide

I spend a lot of my 'free time' reading and learning as much as I can about autism. I avidly read blog postings, books, articles, and Twitter updates in an attempt to understand what my son goes through on a daily basis. I remember leaving the neurologist's office the day we received the diagnosis and I knew what I had to do. I would have to educate myself, but it has never really felt like homework. The process has always been enlightening and I have to say I truly enjoy learning new things on a daily basis. It's amazing to see all the networking capabilities that we can now use to our advantage. Parents in similar situations reaching out for help or to share their children's latest accomplishments are what I find helps me the most on an emotional level. The challenges that my wife and I face are not unique even though there are times when we feel we are all alone and up against this baffling disorder.

I did not know much, if anything, about autism when Diego was diagnosed in 2008. Now things like echolalia, occupational and speech therapy, tantrums, ABA, TEACCH, and IEPs are all a big part of our family life. I feel so proud when he makes progress and we love celebrating all of his achievements, big and small. The speech has been extremely hard for him but he is making progress.
So now that I have immersed myself in his world I can find it difficult to relate to parents of 'typically developing' children. Our daily lives are just so different on almost every level.

It is ironic that as much as I am trying to pull my son out of his own world and into ours, I am drawn more and more into the world of autism...