Having a Child with Down Syndrome, Part XCVIII: Department of Redundancy Department

Copyright © 2016 Stephen Hawley, all rights reserved.

It’s tiring. Seriously, bone-achingly tiring. This is what it feels like to parent a child with Down syndrome who has a couple other disabilities in the mix.

I know that every parent has a litany of phrases that you have to use endlessly with your kids to hopefully effect a positive change in your behavior:

  • Don’t pick your nose.
  • Use a tissue.
  • Put your clothes away.
  • Use a napkin.
  • Shoes off in the house.
  • Close the door.
  • Try harder.

I’m particularly proud of the last one. For both kids, I made a vow to avoid the phrases “what do you say?” and “what’s the magic word?” To me, those are both empty rhetorical questions. Of course, I’ve substituted an empty imperative, but it looks a lot different to the people around us who are used to “what do you say?”.

Still, Alice is another ball of wax. The damage to her frontal lobe from the stroke has hurt her ability to self-regulate. This means that anything that looks interesting, she will pick up and mess with, even (or perhaps especially) if she knows that it’s not OK. So with Alice, we have:

“Is that yours?”

“No!”

“Then why are you touching it?”

For the longest time, using the bathroom at home was:

  1. Shut the door
  2. Use the toilet
  3. Wipe your butt
  4. Wash your hands

Pick any 2 and it was usually 2 & 3. I think we’re much closer to ‘Pick any 3’, which is an improvement, I guess.

Then we have the dinner time manners with the constant reminders to use a napkin, chew with your mouth closed, chew first; talk later, pull your plate closer to you, push the food to the center of the plate, use a fork. Then we have the parental stink-eye for an unrestrained belch.

Progress is glacial. Guh. And, yes, I know every parent repeats these or similar reminders, but seriously you just have no idea.

And yes, we also try to reward and not just nag. Note the good behavior with heavy compliments. Does it help? How would I know?

On the other hand, we went to Costco last week and a woman in another checkout line struck up a conversation with Alice. Well after it was over, she made the point of getting my attention to compliment on how well-behaved my daughter was. That’s an easy thank you.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.