When Oscar was born I grieved that he would never go to a good college, that he wouldn't have children, that he would never live independently. I thought these accomplishments were important, the components of a worthwhile life. But, slowly, really slowly, the standard by which I measured "worth" and "success" started shifting.
What I hope for Oscar is simple in expression though not necessarily in realization. I want him to live a happy, fulfilled life. I hope that he will always have friends and family that love and appreciate him, and work and interests (paid or not) that engage and sustain him. And, of course, I hope he will be safe.
We are heading in the right direction, but today, seeing him so happy and in the mix socially, I started to wonder how will we be able to keep providing him with these types of accepting (fleece pjs? stuffed giraffes?) yet stimulating (teenage flirting?) environments. Most of the kids he goes to school with will go on to college, live independently, hold jobs, have families. At some point Oscar will be left behind.
"But I can't think about that now," I told myself on the drive home. As I listened to Oscar chat on about the walk to the beach, the chasing of chickens, the sheer outdoorsy fun of the trip, my mind drifted to the early conferences we went to, when all the PWS experts kept hammering the importance of social skills training. He's finally in a place where that's happening consistently and I can tell.
(Oscar's school uses a few programs, but the predominant one is the Social Thinking curriculum that Michelle Garcia Winner developed. Social Thinking helps kids learn to think about others in social situations, and in turn, consider how others think about them....when they speak, interact, even dress. The curriculum is rich and tangible and we use much of the vocabulary at home to help reinforce the concepts.)
Oscar with his first giraffe, now one of the fourteen or so he sleeps with each night.
Such deep and interesting, albeit conflicted thoughts arise in me, reading this post. I can relate in so many ways to the worry about the future, although my own worries for Sophie are very different. I think about my boys, their schooling, their needs and what it means to be successful, to be educated and whole. While Oscar might be "left behind," we really can't know what paths any of these children -- both typical and non -- of ours will take -- what sorrows will befall them, what disease, what sort of relationships they will forge and lose, what their choices will be. What stands out, though, is that notion that they are on their own journey and that we as their mothers have to release them in whatever capacity to that.
ReplyDeleteI agree with you completely Elizabeth. I almost took out that "Oscar will be left behind" because it was misleading. (I was thinking of the fact that he would "lose" these particular friends, the ones with whom, for the first time, he truly fits in.) But I think often about how we don't know, really, what path any of our kids will take...and how in so many ways that is a relief, to know our job is to support but not control. Or as you say, to release them to their own journey.
ReplyDelete"But, slowly, really slowly, the standard by which I measured "worth" and "success" started shifting. "
ReplyDeleteI could read a whole book about a mother who learns how to do that. :-)
Oh, wow, just as I was typing that I didn't yet know how I was going to do that...I remembered some key moments along the slowly, slowly path.
Delete