Why Sabrina WON’T Always Live With Us

IMG_3101A lot of people ask us if we think Sabrina will live with us for the rest of her lives. Those are people who have never met her. Those people who have met her just assume she will. I always assumed the same.

I no longer do.

My thoughts on this have changed dramatically since I’ve been involved in attending conferences about inclusion, and have had the opportunity to hear stories about adults with significant disabilities who are leading self-determined lives.  After attending CalTASH’s Regional Conference last week, I’m again reminded of the reasons I no longer envision that Sabrina will always live with us, and the reasons I don’t want her too. Here’s why.

She won’t want to. | What early young adult wants to live with her parents? Well, OK, more and more these days do. But Sabrina is a kid who on the weekends will bring us her backpack, start rattling off her friends’ names, say things to us like “line up”, and then bring us her shoes. And she’s only 9. What makes us think that she’ll want to hang out with us even more when she’s 20?

Because Ken and I need to have a normal life, too. |  Enough said.

{And the kicker, right here…}

Because we need to have a great plan in place for her before we’re gone. |  I’ve heard people say that never in their lifetime would they allow their child to live somewhere else, that they won’t feel safe unless their child is with them.  But isn’t that a somewhat false sense of security?  The  fact is that unless something unfortunate happens, Ken and I will pass away before Sabrina does.  And that’s the scariest thought to a parent of a child with a disability.  I try to not let it keep me up at night.

But I have to believe that I would feel much more at peace with that time coming if I knew that my daughter was already living in a situation that was safe, that made her happy, and that was sustainable.  

And no, I don’t expect Sabrina to live with Alexa after we’re gone. Because in my opinion, that’s just unfair. What I do expect is that Alexa makes sure that Sabrina is OK.  That may mean a variety of things. But it won’t mean living together.

So now what?  What does a life for an adult with significant needs look like? Stay tuned for Part 2!

One Comment

  1. zuirn: so can you!food: eton mess is made with hard meringue and i'm not crazy about tt but it does sound delimious.kikukat&acp; janine: try making it soon.

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