There is a widely accepted theory on the grief process of parents with children with special-needs. It's called The Chronic-Sorrow Theory. Sounds delightful, doesn't it? Basically this theory states that the typical stages of grief do not apply to us. Sure we have those stages but not in any particular order and they don't go away after we've dealt with them once, twice, or ten times. It's a constant flux of these stages and we may never truly accept the situation. Why? Well it's simply because our source of grief is always a concrete presence in our lives.
Now I hate to refer to my son as grief, because I never ever think of him that way. But it's always in the back of my mind that the child I had planned for and the future I had hoped for disappeared a few years ago.
I'm rambling on about this because I came across pictures of Brian playing on Corbin's soccer team last year. Brian had just started kindergarten and I wanted him to have all of the same opportunities Corbin and every other child had. I wasn't going to let his ASD stop him from being just the same as every other kid. I thought I was doing him a real service.
We did one game. It wasn't that he had a tantrum or hated it, it was just that when I finally coerced him to get on the field he just ran in circles and didn't seem to even notice or care that there were other kids or a ball on the field. I realize that 5-7 year olds playing soccer do not usually contain much athletic ability, and it's not that, it was just that he was seriously not aware of anyone else out there but himself. He was smiling, I don't think he hated it, but he would've been just as happy running in the empty field right next to the one being played on.
This is during the actual game- the ball and other kids are on the opposite side of the field. |
I thought about it later and really asked myself- "Who am I doing this for?" Because I was really starting to think I was doing it for myself. I wanted him to be "normal". I wanted to prove that he was just as "good" as any other child. I wanted others to not look at him like he couldn't do something. Yet I really just drew more attention to his deficits.
Did Brian want to play soccer? Geesh, I never really asked him. I always ask Corbin and never make him play a sport or do any after-school activity unless he makes that commitment. Did Brian care if he wasn't included on a sports team? I hardly doubt it.
I needed to realize that I have to accept Brian as he is, the beautiful, happy, silly boy that he is. I needed to realize he wasn't Corbin. Brian didn't need to be accepted by others to be happy and I shouldn't need that either.
3 comments:
I've never heard of Chronic Sorrow, but that pretty much nails it for me too. You come in and out of the other phases, but there is always sadness. I've done many similar things with my daughter like your soccer story...we’re supposed to have them around typical peers right? But if they are oblivious to the experience and it throws our “chronic sorrow” into high gear, is it worth it?
I have an online friend with a daughter with Down Syndrome who wrote almost this exact post last week in regards to getting her to participate in T-ball. ((((HUGS))))
Chronic Sorrow. Yep, I've got it, too. This is a great post, Heather. I'm gonna link to it, ok?
Sending hugs across the miles...
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