Wednesday, January 7, 2015

More Different Than Alike

More Alike Than Different has been a rallying cry of some parents who have kids with special needs and I'm not against that statement. When it comes to hopes and dreams and a desire to be needed, that statement is very true. Everyone is alike in that area. But this post is about the things we can see.

This is about a mom who, for the last 10 years has watched her adult daughter try to function in this world, along side other adults who don't have special needs. Every day her differences stand out like a sore thumb. And it hurts.

Beth was in the kitchen this morning putting her breakfast dishes in the sink and she coughed. Just a little cough, more like clearing her throat really. But then she said, under her breath but definitely loud enough for anyone in the room to hear, "You okay? Say yea." Then she headed into the bathroom.

I was at work yesterday and got a text from her saying she had put her calendar on the prize table. On her bowling league they have a prize table where the bowlers can bring gifts or gently used items to give away as prizes when someone gets a Turkey (three strikes in a row.) I gently told her that no one will want her 2014 calendar and they'll just have to throw it away. "Oh."

When she comes upstairs and needs to ask us something, she'll stand in the hallway, partially hidden behind the wall. We'll ask her to come out to the living room and talk to us but she just wants to stay hidden. 

We're in the car, talking about a road trip we'd love to take, the route we'd take, places we'd see along the way and Beth will say something like, "Mine was chocolate." We all stop. Chocolate?? "What Beth?" "The cupcake at bowling." "Oh, your cupcake was chocolate?" "Yep!" Then we all sit there in silence for a few seconds. Sometimes we'll continue with her train of thought and ask her more questions about bowling and what happened that day, or we continue on with our original conversation. And I often feel guilty when we just continue on with ours cause I know she can't keep up mentally but it's hard to always be at her level.

I used to beat myself up over the fact that she only speaks in 4-5 word sentences. Why didn't I fight harder to keep her in speech classes after high school? Why didn't I do this? Why didn't I do that? I tend to blame myself for the way she is.

But I'm realizing that she's that way because she has Down Syndrome. Ds causes the brain to function slower than normal. (Whatever normal is!) It's no ones fault. It just is. But it's hard to see how different she is. And it seems the differences become more extreme as she gets older. As a kid, she ran and played and jumped on the trampoline with the best of 'em. But as a 30 year old? Her speech, her thought process, her physical limitations just seem so far apart from her peers. The kids she grew up with are married, they're taking their own kids to the doctor, they're upgrading their phone plans. Beth just lives at a different level.

When it comes to the stuff we can see, Beth is absolutely more different than alike.

3 comments:

Stephanie said...

I really hope you don't beat yourself up over this, Cindy. You are a great mom and I am thrilled that you share Beth and your family with us. I actually don't really like the phrase More Alike than Different because really, we are ALL different people, with or without disabilities. I'd much rather like to hear people say, "I'm different and that's OK."

Caz said...

To be honest, the scenario's you describe here sound charming, eccentric, GOOD different. But I can imagine the worry, frustration, exhaustion that goes along side that for you. Your honesty is a gift. I wish I could take away any trace of blame you feel in return for the gift of your honesty in this post.

Crystal Rhew Staley said...

I echo what Stephanie and Caz said. And I also know that it's hard not to beat yourself up. I do it too. Much love to you.