Having a Child with Down Syndrome, Part LXXVIV: Every Day is Not a Step Forward

Copyright © 2015 Stephen Hawley, all rights reserved.

Alice has not had the best of weeks. She has decidedly moved backwards in toileting and we think that it has a to do with her being in “Elbow Camp”. Elbow camp is a 3 week program that we have been doing for many years wherein Alice and other kids with similar issues spend each day wearing a cast on her good arm and are required to do all kinds of activities with her stroke-affected hand. This year, we think that Alice has been depending on other people to do the clean up after toileting and this has carried over to home where she’s had a number of “accidents”. It’s not been pretty and we thought that this issue had been solved years ago.

Every day is not a step forward.

Every day is not a success.

Every day is not sunshine and butterflies.

We do what we can with what we have in front of us and try to position things to get better, but not everything is within our ability to improve.

A bright spot to keep in mind, which is shared with all parents, is that there are a number of words that every child mispronounces. Most we correct.

Some, we don’t bother.

Here are two that we don’t bother with:

  1. Packpack (backpack)
  2. Armpips (armpits)

We have been struggling with Alice to have a better sense of personal boundaries. We’re worried about other people taking advantage of her naivete so we have to be very careful to make sure that she understands that there are body parts that she only shows to parents or her doctor. That list includes:

  1. Boobies
  2. Hoo-hah
  3. Butt
  4. Armpips

We didn’t include armpips, Alice did. For some reason, she thinks that armpips are taboo. I think it carries the name nuance as ‘bare naked’ did when I was a kid, or as we have said in this house, ‘nakey butt’.

Moving on, struggling forward.


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