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Monday, May 2, 2016

"I want more than a future in a regional center making refrigerator magnets"

This week I wanted to share an article from The Washington Post entitled, "Want To Know What It's Really Like To Have A Child With Autism?" Author Katherine Osnos Sanford puts it all out there in a frank and poignant way, painting a picture of what really keeps us up at night.

Katherine's daughter, Mae is mostly non-verbal and autistic. Like all children on the spectrum, she struggles with sensory issues and can't always process the world around her in a calm manner. My David is fairly verbal and has adapted well to his sensory issues, but he still has them, and they still overwhelm him at times. I may not have all of the struggles that Katherine has, but I relate oh-so-much to so many points in this article.

I worry about my son. I worry about him now, I worry about his future. I get sick to my stomach knowing (and this is a certainty) that someday, he will have to experience my death, and his father's death, and then he'll have to navigate the world without either of us. I'm not even sure he'll be able to hold a full-time job. And while he has trouble putting his emotions in proper context, he feels them. He feels them too much. What will it do to him, to have us gone?

And this paragraph:

"It’s a struggle to reconcile my love and acceptance of my child with my resistance to settling for the world as it is. I won’t dance at Mae’s wedding, and I may never hear her say “Mom.” But she’s an amazing kid."
Oh, that one got me right in the heart. I will probably never dance with my son at his wedding. Or watch him go off to college. Or babysit his children. All the lifetime milestones melt into "God, I hope he can take care of himself after we're gone."

And then he's on his own. Because the country pretty much only worries about his autism when he's a child. They aren't in it for his adulthood.

Or his lifetime - beyond mine.

Welcome to the world of being an autism parent.

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