At the museum on Sunday we observed an adolescent boy boarding our “chugga-woo-woo” ride. His ears were covered in earphones (but not the kind that play music) and he clearly had that “trapped inside this body” look that we have come to know well. This incited a discussion with Tavi about what Peter’s future will be like.
I have to admit that this is one of the things I try not to think about. Autism is a Spectrum Disorder and each individual affected has a unique affliction. Our therapists (and us) like to believe that Peter will eventually be diagnosed as “high-functioning” as he is certainly presenting that way at this point. But it’s all so “two steps forward, one step back” with this game. And nothing is for certain…ever!
Like any mother, I imagine my little boy going to college, getting married, giving me grandchildren. Or bumming around Europe for a few years if he’d rather. I have the same dreams for him that I had the moment I found out I was pregnant. This may very well be too optimistic, but honestly, I cannot bear to think any other way.
I feel that if I set the bar for Peter at level 5, he will only achieve level 5. Yet, if I fail to set a bar at all and believe the sky is the limit he can only excel. It might be hard to understand how someone who is notorious for planning for even the smallest and most uncertain details of life can have such a laissez-faire attitude about their child’s future. I can only qualify it by saying I really have no other choice. To peruse research with a fine toothed comb would only drive me crazier than I already am and most importantly take away from the work at hand…preventing the worst case scenario we all dread.
Peter is my life’s work now. Raising him is the single most difficult job I have ever had. If I had the energy to “think” at night, I’d probably be able to count a hundred ways I’ve failed him each day. Fortunately, I am so emotionally and physically exhausted I don’t. But then there are moments in the trenches that ground me and fill my heart with so much pride I feel as if I may burst. These “successes” sneak up on me, and I relish them with great anticipation and excitement. Every new thing he does, each and every minor milestone, is a miracle in its own right. Because of Autism I appreciate them more than I ever could’ve imagined.
Yet sometimes I yearn for a “normal” child. I long for that typical experience that defines Mommy in all worlds. To join a playgroup, or bemoan the fact that my child is asking “why” for the millionth time, or that he won’t stop calling my name or clinging to my leg. For a brief while I thought I’d have that someday. I thought I’d have my special Peter, and another little one too.
Yet, sometimes in life we allow ourselves to believe that we have options that do not really exist. For the past six months I have convinced myself that it is my choice not to have a second child. I suppose this should make the coping process a bit less harsh, that I should feel some sort of control or power here because I chose this path. It hasn’t.
The truth is that I didn’t choose this path. I lost the dream of having a normal mother/child relationship on early on with Peter and I rationalized this by promising myself a second chance at finding out what everyone else has. There are a litany of reasons not worthy of listing here as to why Peter won’t have a sibling. The genetic risk involved with Autism is a major one. And I don’t say that because I would love a second child with Autism any less. I say that because I couldn’t bear to carry the responsibility of potentially burdening another precious child with this debilitating disease. I’ve read articles by adults with Autism and while they can find happiness in this world, it’s a very difficult disability to live with.
Perhaps the biggest reason I cannot imagine having a second child is that I don’t think there is enough of me to go around. Peter needs my undivided attention. We have therapy seven days a week and every moment of our day involves active engagement. My ass is already seriously getting kicked!
So, while I’m grieving the baby that never was, I’m also trying to hold on to the baby that is as long as I can. I might not be rewarded with hugs or kisses, or “I love yous” but once in a while he does something awesome like falling asleep in my arms after a long day and I wonder what the hell “normal” is anyway? Besides that infectious laugh, which he incidentally shares with his father is medicine to my soul. I wish I could bottle it and share it with everyone I know. That laugh is going to change the world. Of course, I should expect nothing less from the boy who has already changed mine.