by Lillian Csernica on November 22, 2013
Today I had to accept the fact that my son John may not outgrow all of his symptoms of autism. When he was first diagnosed, the neurologist was optimistic. Than was ten years ago.
John is having a really hard time in some of his high school classes. Some of the content is too abstract for him. The workload is intense, much more so than in middle school. His anxiety behaviors are more frequent and noticeable. His stress levels are high and we’ve had to increase his dosage of medication.
Today I had the annual meeting with one of John’s caseworkers. We discussed John’s difficulties at school. My husband and I had hoped John would be capable of graduating from high school with a diploma. That would limit the services available to him after graduation, but it would be proof of John’s intellect and capabilities. If John takes the other option and receives a certificate of completion, there’s a postgraduate program he can be in from age eighteen to twenty-two. (That’s the program Michael will enter next year.)
Our caseworker helped me understand that I had to consider the reality of John’s capabilities, and what kind of future would guarantee him the highest quality of life. What would be the point of pushing for a high school diploma if the stress of achieving it turned these four years into a nightmare of stress for all of us? Would it really be best for John to push for that diploma which might not really do him any good after graduation? The certificate of completion doesn’t have the same cachet, but it would mean four more years of support and services to help John mature into the independent living skills and community integration that will help him move on into adulthood.
I want the best for John. I want him to have all the opportunities and choices and hopes and dreams out there waiting for him. There’s a problem with these two statements. They begin with “I want.” This can’t be about the future that I want John to have, not if it means pushing him to struggle through classes that demand too much from him and attempt to wring from him results that are beyond his comprehension and therefore don’t do him any good anyway.
I had to live through this once already when I finally gave up any hope of Michael learning how to walk. I had to live through it again when John was diagnosed. This is how life is for the parents of special needs children. This is why we celebrate every victory, every bit of progress, every triumph no matter how large or how small. Doing that is part of what helps us live through the crushed hopes.
I love John and I hope we can find the right way for him to discover what’s best for him. I hope John can learn how to build a future that brings him all the joy and satisfaction of a life well-lived.
Tomorrow is John’s fifteenth birthday. He wants to go to the Monterey Bay Aquarium, so that’s where we’re going. Then we’ll go pick out his birthday cake and come home to the party and the presents and all the other surprises that await. We will celebrate this handsome, smart, talented young man who has so many discoveries ahead.
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