Posted: Feb 17, 2014 8:00 AM
 
There's a ton of information for parents of kids with special needs, but what about the siblings? They have a different kind of special needs. I know, because I'm one of them.

For 39 years, I've been asked this question:

What is it like having a disabled sister?

My short answer is something like this:

What is like to not have a disabled sister?

"Regular" sisters — in most ways

I can't remember where I put my keys, but I have a vivid memory of being 2 years old when my beloved babysitter prepped me for the impending arrival of my parents and sister home from the hospital. She told me my sister would be special. She was right. My sister has severe cerebral palsy.

So what is it like having a sibling with special needs? My long answer is something like this:

I have two kids; she is an awesome aunt who calls them every other day.

We both love the arts, especially musicals. She is neat; I'm messy. We both have strong, independent personalities and aren't afraid to speak our minds. I have two kids; she is an awesome aunt who calls them every other day. I can take care of my basic everyday needs; she has around-the-clock aides to shower her, take her to the bathroom, dress, feed and transport her. We laugh and hang out and FaceTime nearly every day.

Sisters looking toward the future

We are sisters whose parents are growing older as we are, too.

Someday, we will be more than sisters — I will also be in charge of her care.

flowers in vase

There's a lot of information out there about parenting young kids with disabled siblings, like treating each child equally and making sure the non-disabled sibling (like me) also gets special attention she deserves. I am forever grateful my parents made sure I knew I was special, too. (They still do.) I hope parents of children with and without disabilities understand how important this is.

When I think about ultimately taking care of my sister when our parents are gone — which I hope and pray will not be for many years — my emotions run the gamut of being confident to terrified. Having a disabled sibling certainly means a realm of responsibilities that "regular" siblings don't have. Right?

I'm not sure because I don't know any different.

What's it like having a disabled sister?

Pretty awesome. I hope she says the same about me.

Read more about siblings with special needs

Parenting a child with a disability
How siblings cope with a disability
Parenting a disabled child: The teen years

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