What the future holds for my Asperger child
What happens after high school?
Last month, my son started high school. Like many parents, we are faced with the impending thoughts of "what next?" Most parents are thinking about college, the high cost of it, the possibility of an empty nest when their child goes away or what occupation their child will choose either at the end of high school or after college.
We face a different challenge. Unlike his autistic counterparts, there are grey areas for him in the world of education. The law states that he should have transitional training and support due to his diagnosis, however, he will not be receiving those services through the Department of Education as he has received all of his services since he was 4 years old. He will be basically tossed out into the street to fend for himself.
The reason for this you ask? Its amazing, truly amazing. The reason is the same reason that has haunted us for his entire academic career. He is DIPLOMA BOUND. Our child has the nerve to be intelligent. He has the nerve to have the ability to attend school and be placed in honors level classes. He further insults our system by being successful in that placement.
Last year I once again went on a hunt for more assistance at home. It is difficult to be tied to him during homework hours. Those are also the hours that I take the younger children to their sporting activities. The younger children also require my assistance with THEIR homework. My oldest child procrastinates so much that I am cooking dinner and making the lunches for the next day while he is still doing homework. If I dare take my eyes off of him for a moment, he will stop what he is doing. The other trick he has developed is to show me classwork and tell me that is his homework so I will believe that he is done. He will do this when I am very busy so that I cannot discern between classwork and homework. Thus, I applied for an at home worker to stay with him, for respite, for homework help, for anything. This is what I was told:
My son has ALWAYS excelled in school. He has ALWAYS been in honors classes. He received a President's Acheivement award for academic achievement. He receives the Social Studies award at every graduation he takes part in. He is too high of an achiever to justify helping us.
While I am very proud of the above, and I completely realize that there are children failing that desperately need the help, I must acknowledge that Asperger students are normally VERY intelligent. He has a photographic memory. He normally performs well on tests. That does not mean that he is not crying and stressing over simple homework problems on a daily basis. It does not mean it is easy in our home. His testing IQ is high, but his ability to cope and his emotional stamina is low. We need help with that.
So yet once again, he is punished for excelling. He is punished for being bright, for having the ability to memorize and comprehend. He is punished for not being disabled ENOUGH.
We have spent ten long years fighting with the department of education trying to get them to understand what his needs are. We have endured his abuse at the hands of a private school teacher who was ignorant and refused to learn. We have had to listen to the pencil pushers every year tell us what we can and can not have for our child for the sake of the budget. We have had to go to court. We have spent endless hours on the telephone, internet, writing letters, doing research, fighting for our child. I have had to give up working full time, so we have given up financial security. We have given up vacationing with our children the way other families do. We have to go without so that our son can have a fighting chance in this world. Our other two children have to listen to their friends talk about Disneyworld and other places and know that it just isn't in the cards for us right now. We have had to give up social gatherings, friends and family members who didn't understand where we were coming from with our child. Its not an easy life to live. But it is worth it. He excels. He is making friends this year. He is smart. He will not be a burden on society. He will get a diploma.
Yet, its wrong in the eyes of our government once again. Its wrong that we work and earn more than the money alloted for social security, so our son receives none to help with all of the medications he needs, or to help pay for the karate classes he would like, that would help him. Yet others who are far less disabled than he get it because they know how to work the system. What lessons do we learn here? If you work hard and do the right thing, you are punished in this country. Scary, isn't it?
But there are some answers. I received an email from a friend who has an asperger son and is an awesome advocate. Another parent in my area has information. She is also an advocate who has helped countless parents and their children. We have to do this on our own. The burden of proof always lies on our heads. We were not only blessed with a tiny miracle when we gave birth to this child, we were given more responsibility than anyone person can imagine. Thank the good lord for people like the two women I mentioned and the countless others I have encountered in my search for help for my son.
We will sending our child's information to a wonderful group in the hopes that we finally get some sort of reward for his hard work over the years, and ours. He needs and deserves transition services just like any other special needs person. He cannot just be thrown out into the cold world and told now you are on your own. This is one of the basic reasons we end up with so many people who are dependent on our government and taxpayers to care for them rather than be the asset to the world that their gifts can allow them to be.
My son, like other Asperger teenagers, adults and children is bright, gifted and a pleasure to know. He can and will be a valuable part of society. He has the ability to make a difference in this world and deserves the chance what he can be with a smooth transition from high school to the real world.