Having a Child with Down Syndrome, Part LXXV: Watching Her Growing Up

Copyright © 2015 Stephen Hawley, all rights reserved.

Whether we’re ready or not, Alice is transitioning into adulthood. Sure, there will be years of this, but they will go by in the blink of an eye.

Alice is going through mood swings and I’ve heard heard this bit of high-volume communication from her in one go: “I love you so much daddy. YOU GO TO WORK! I HATE YOU!” which means that I’m probably doing my job right.

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Still, we walk to the bus stop together every morning and wait for the bus. Some days like today, Alice is very touchy and is talking about her day: who will be at drop-off, if her regular aide will be there, what specials are part of her school day. While her hand is still and always will be tiny compared with mine, I see a change in the shape as she is growing up.

We still have problems with her impulsively touching things that are not hers. Alice has also recently learned that she can access our fridge and pantry as she wishes, although we’ve levied some weighty consequences for that, she recently went through a quart of ice cream.

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Alice doesn’t distinguish between flowers and weeds. She frequently stops to pluck dandelions to bring in to her teacher. This day, she decided that she would pick clover and tucked them into the strap pocket of her backpack.

Before school today, since we had some a few minutes and Alice had done well with independent self-care, we watched some Phineas and Ferb songs on YouTube before we headed out. We had watched the fictitious band Love Handle and on the way she to the bus she was analyzing the meaning. “Love means kissing and handle is the guy.” Not bad and good to see that there is some analysis going on.

In spite of some of the truly boneheaded things that Alice has been doing recently that smack of behavioral regression, there have been some serious, “holy shit” moments. For example, my dad called and we put him on speaker so that E and I could both speak with him to plan a visit in the late summer. Alice heard this and came downstairs and walked up to phone and said, “Hi Grampa George! Can I talk with you for a minute?” That was some nice speech pragmatics and I was very happy with how she pulled out that phrase. It’s good to see that when on a given day she still has trouble with the difference between “may I” and “would you” and “it is” instead of “it be”.

I think perhaps the hardest thing for me is the frustration of the spottiness of her behaviors. E had been reading about anger and frustration and one book had noted that anger flares when there is a divide between expectation and delivery. That helps me understand why I spark hot when Alice does something that is very much beneath her capabilities, especially when she seems to have done it intentionally.

Still, she grows up just a little more each day and I feel like we’re racing for independence before then.

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