This past week I spoke to a woman who has an autistic son. Her son goes to Virginia Tech and is majoring in history. He loves reading and writing papers and is doing very well. Of course he is - after all, college is all about reading and writing papers. His memory is exceptional and exams are a breeze for him. He is on the honor roll consistently. I listened as she told me all these things and found myself excited for her. Yet underneath my excitement I felt something else too. I felt myself getting anxious – my heart even raced a bit. I felt a few pangs of sadness. It haunted me to the point where I wanted to put our conversation out of my mind. Unfortunately, I found it to be quite impossible to forget. Instead, I ended up thinking about her son all weekend and wishing terribly that my son was engaged in college activity. Don’t get me wrong, I was truly happy for her and her son. But to be honest, I couldn’t help but wish Matt was at Tech, learning, exploring, and making new friends. I hate to admit it, but I think my sadness was intricately tied to another emotion - jealousy.
Matt wants so badly to go to Virginia Tech. He wants to be a part of the college crowd and take in the feel of the campus and campus life. Unfortunately, Matt hates to write papers and he absolutely hates being tested – on anything. To be at VT he would need a facilitator – a very good one. Someone who could focus him and make him feel comfortable during exams.They would need to have a great deal of patience and provide him with alternative explanations for each lecture. Matt’s ability to both socialize and learn is very fragile. If I could be his facilitator I would. But it isn't as simple as that. Matt needs more time to become his own person. This means he can not fulfill his dreams – at least not yet. This is what makes me sad and yes, a bit jealous.
ASD (Autism Spectrum Disorder) means that his autism lies somewhere on the vast spectrum between mild and severe. It means that his skills are not the same as other autistic individuals, nor are his weaknesses. Matt is unique in his combination. Each individual on the spectrum is also unique – in their behaviors, their skills, their personalities and their weaknesses. This also means that each of us who cares for someone with autism deals with different challenges and different circumstances. What we all have incommon is our desire that our specific child will excel in their life activities and continually overcome the hurdles placed before them, especially those associated with autism.
Who has not heard of Temple Grandin? Don’t we all want our autistic children to shine in similar fashion to Ms. Grandin? Don’t we all want them to go above and beyond the suspected limitations that were presented to us so coldly by the medical professionals upon diagnosis? I don’t know how everyone else feels, only how I feel. I don’t know what everyone else can do for their child, only what I can do for mine. I can’t push Matt too hard and I can’t give up on him either. I know his capabilities but I also know his weaknesses. I’ve seen what happens if I push too hard or push him in a direction he is unprepared for. He regresses. He burrows inward away from the stress. This is how Matt copes. I can’t bear to watch him regress and so I take it slow, very slow.
And then I hear about a young man Matt’s age and how well he is doing in college and I wonder if I have done something wrong. Have I gone too slowly with Matt? Have I really kept his best interests at heart? Where would Matt be now if I were a better mother, a better teacher, a better advocate?
I am happy for that mother and her family and proud of her son at Virginia Tech. I am also a bit jealous – of her, her child, Temple Grandin and other high achieving autistic individuals. Not because they are any better than my son Matt. No. No. I’ve done a lot of soul searching this weekend and have found my sadness and my jealousy actually stems from her confidence - she seemed so sure of her son’s future. She knows her son will be fine on his one day because he can handle college life and college-level stress. I, however, am not certain of my own son’s future. What will happen down the road? Will he live on his own? Will he be able to handle the stress of life without me as his shield? These are the things I fear and struggle with each day. It isn’t how far one goes in their education, but how well one can deal with everyday stress. In the final analysis I find it isn’t so much jealousy as it is simple fear. Hearing about the success of another gives me hope (as well it should), but it also reminds me of how far we have yet to go to secure Matt’s future. Matt may be high functioning but he is still autistic. What do I really, truly want for my son? When it comes right down to it, I want him to be happy.
Matt isn’t in college right now. He isn’t dealing with deadlines, exams, peer pressure or reading assignments. He doesn’t use an alarm clock or punch a time clock. Presently, Matt is . . .happy. After thinking on this for several days I have finally found peace within myself.
Matt is happy, and that means I have exactly what I want.