Yesterday I got an email from one of my autism connections about a work program for  adults with autism to work at a car wash.  Like many other things, what upsets me is not what was actually communicated but rather what it may or may not represent for Bryan or other kids on the spectrum. I know it is just a summer job program and it’s good experience, but I feel like it is such a low skill job for such highly intelligent individuals. Now clearly there is absolutely nothing wrong with working at a car wash, I’m neither a snob nor an elitist. But this posting just touches a nerve. What will Bryan do when he grows up? Will he be able to have a job? Will this job be something that has meaning for him or will he just be the awkward person in some company that people are polite to but don’t want to interact with?  Earl and I had lunch yesterday and I shared my thoughts about this with him. Typically he would tell me, no, stop, don’t go there, Bryan will do this or that. He didn’t. He felt my pain, he got it. We sat for a minute and held hands and I felt the onset of tears but managed to hold on. Years ago when I worked at my previous company we hired a young man to do some scanning work. Bryan was a baby or toddler and I had no idea where my life was headed. This young man was very awkward and clearly had some issues; he either had autism or tourrettes or both. We hired him and he was great at his job but people were very cautious around him since he behaved strangely. He liked  to sit in our mailroom and touch things and he didn’t socialize at all.  In retrospect I know I did not understand him and I too was a little uncomfortable in his presence. He did a great job but I can’t help feeling like it was some sort of cosmic foreshadowing. Ugh, the brain, shut this thing off!!!

It is so hard to truly explain these  emotions. But that “will he ever” feeling is not something that ever goes away. At times it gets buried under everyday nonsense. When it bubbles back up it always seems to catch me off guard. Or perhaps that is the  point;  I should not be focused on the  “will he ever” and keep my focus on today. However, as his mom I feel it is my job to keep the near and far always in my grasp. I guess it’s not possible to do both at the same time all of the time. I went to the Autism Speaks award dinner last night. This is where you get a little plaque for your fundraising activities. It is always nice to be recognized but more importantly it is good to connect with my peeps. I went with my friend Jen and it was so nice just to chat. We met a woman with a 31 year old son with autism and lives in a group home.  That is another thing that yanks at me. Group home? I know they are great and all but I don’t want to go there in my head or my heart. This is the thing about a child with a disability, any disability. The band-aid gets ripped off and the wound is exposed again. Time for a little antibiotic ointment and a new band-aid….But a bandaid unfortunately does not heal a broken heart.

Bryan and Earl are flying up north tomorrow and Bryan starts camp on Saturday. So to answer one “will he ever”, we can say yes, he can go to sleepaway camp and be responsible for himself and grow. I am filled with anxiety about him leaving. I keep thinking about last summer and that is very traumatic for me. For Bryan, however, he seems excited to go and he follows the rules and knows when he is going and when he is coming home. Next stop, visiting day. XXX

6 thoughts on “Deflated…

  1. I want you to know that I saw a piece the other day about redefining the spectrum. I know it is controversial and I don’t know how you feel about it. But in the piece a comment was made ‘these kids are the future silicon valley’. Think about that, it’s a much more appropriate and positive future for these children of special talents in my opinion.

  2. I know the feeling. Ironically, I chalk it up to the same reason all of our peers sit on someone’s couch.

    We are applying our own, learned, parental, guilt-laden sensibilities. Setting “should-be” expectations for our kids. I’m not saying we shouldn’t have dreams for our kids, but if Bryan or Sydni, or anyone is happy, what does it matter if he is making copies, pumping gas, washing cars.

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