Finally! A new picture ;)
How Philes can help Ben and get something in return!
I am the mother of three children ages 7, 5 and my youngest will be three tomorrow. Our youngest son, Benjamin, was diagnosed with autism in May of last year. We were having a very hard time with Ben, at about age 15 months we started to notice that Ben was different from our other two children. We spoke to our doctor about it and he told us we should just wait it out some. By the time Ben was 2 we had seen the doctor 3 times and were finally being taken seriously.
From what we could see Ben was not developing normally. At the age if 2 he was not talking at all despite the fact that he had had a few words when he was younger. Not only was he not talking but he was also not using any nonverbal form of communication whatsoever.
It started to become incredibly hard with Ben. Our house was beyond baby proofed simply because he didn't seem to be able to understand that there were things he could not touch, things that would hurt him. We had out silverware on top of the fridge and kitchen chairs were no longer an option since he used those to climb wherever he pleased. Ben did not have any sence of danger.
Benjamin also liked to pull his sister's hair and bite, he liked the reaction he got when he did it. He did not realize he was hurting someone. His frustration levels were incredible because of the lack of ability to communicate. If he was thirsty he would throw a tantrum because he didn't know how to ask for a drink. Sometimes there were days on end where all he would do is cry. We were helpless, we didn't know what to do for him, how to find out what was wrong.
We were understandably devastated when we received the diagnosis, more so when we were unable to find help for him. We turned to every source we could find only to meet brick wall after brick wall. Apparently the general medical profession as well as social services center's are of the opinion that autism is an untreatable condition. They're dead wrong.
After weeks of research and weeding through many ridiculous therapies we finally came across something called ABA, short for Applied Behavior Analysis. It was the ONLY thing we came across that seemed viable to help with the autistic symptom's instead of coping with them. The most frustrating thing about our whole ordeal at the time is that we thought there was nothing we could do. How do you just sit by and watch your child retreat into himself? We couldn't fathom it.
We began to look for as much information on ABA as we could. We found lots and lots of web pages and began to get a better grasp of what it was all about. The more we read the more solidified our decision became. ABA was originally developed by Dr. Ivaar Lovass at UCLA in California, in the original study the results were 40-60 % of the children that received 40 hours per week of therapy 'recovered'. The term recovery is somewhat miss leading, all it means to us is that to a person with an untrained eye no autistic symptoms are visible.
Since Dr. Lovass' trials there have been many many more people jumping on the bandwagon and doing tests of thier own. The results vary but all boil down to 40hrs/wk = 40-60% chance of recovery provided the child starts before the age of 5. This therapy has been tested for 20 + years and is only now being recognized as a viable treatment for autism. Our government and the US government have taken thier sweet time recognizing it simply because it's expensive. Very expensive.
ABA gained popularity when Catherine Maurice wrote a book called 'Let Me Hear Your Voice' a mother of two autistic children's story. I could go on and on about how it works, why it works etc but that would take up too much time. If you require further information on ABA itself I would be happy to get it for you.
When we finally figured out this was the ONLY way to go we started looking for information on how to go about it. This I think was the most frustrating part of it all. We knew what we wanted, we knew it would work, if not recovery than to drastically improving Ben's situation, but we didn't know how and there were no resources to find out.
We were lucky enough to meet a family close by that had already started a program, they helped us tremendously. Without their help we would still be eternally lost. Which brings me to one of my points, my story is not an uncommon one in the least. This therapy is scientifically tested and proven to work but no one tells us about it, the information is there but only if you know where to look for it. This is not only a Canadian or US issue either as both countries are almost equally low in the information giving. The only differences there are is that the US offers ABA in schools when it is asked for and therapy is more readily available for those who seek it out. In Canada we do not receive it at all, in the states it's available but they have to fight tooth and nail for it.
We came across two problems when trying to set up our program. First there were no agencies in the area for consult. Consultants are necessary to a program to determine where a child is. They help you to figure out where your child should start and where your child is going making various changes to the program along the way. They are the voice of experience, a program can be done without them but it is very hard with all of the intricacies involved in ABA.
We ended up having to use an agency from the US, Project Pace. Here is the second problem. ABA is incredibly expensive. You pay therapists 40 hrs per week, consults once a week plus speech therapy and other specialists that are needed. Only 7 hrs/wk is covered by the government and that is simply for occupational therapy not ABA. Ben is not receiving everything he needs for this reason. We just don't have it. I don't know how we've made it this far with 5 hrs a day.
We are now involved in a suit against the Canadian government for failure to provide adequate health care, educational services and funding for children with autism in Ontario. For more information on the lawsuite please see the News page. That is probably neither here nor there it only goes to prove the validity of our stories. There are 20 families involved in the suit at this time.
The changes in Ben are astronomical. He has been in his program for almost 5 months now and you wouldn't believe he's the same boy. He's happy, verbal, communicating and a complete joy to be around. There's still many more issues to deal with concerning Ben and a long road ahead but somehow we'll find a way.
Feel free to send me your questions, concerns or anything else.
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