Plinth Blog Special Needs Parenting

30Apr/160

Some Miscellany

Copyright © 2015 Stephen Hawley, all rights reserved.

For the past week, I was away for a company conference. Of course I brought home goodies for the kids. One of the things I brought home was a little stuffed monkey, which I inferred from our customers is very sought after. I gave one to Alice:

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Here you can see Alice in her new Gryffindor t-shirt, holding her Xamarin monkey. I asked Alice if she named her monkey. Of course she had named her monkey.

"What did you name it, Alice?"

"Boyfriend."

"You named your monkey 'Boyfriend'?"

"Yes."

"Okay."

Getting back in the swing of things, Alice and I went out shopping today and after she was done, she decorated her list:

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Two smiley faces and a "Great Job". That's the mark of a young woman who takes pride in her work. And the fine motor control on the two tiny smiley faces was not lost on me at all.

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19Apr/160

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.

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13Apr/160

Special Times, Conducting

Copyright © 2016 Stephen Hawley, all rights reserved.

Remember when Alice conducted the middle school band? Yeah, me too.

15 years ago, Priscilla Ross founded the Florence Community Band with the goal of bringing live music to the area. I showed up at the second rehearsal and have been a regular member since then. I love music and making music and have come to accept that regularly making music is important to my mental and emotional health.

One of the good parts about being a member of the band from the beginning is that I know the director and after Alice conducted the middle school band, I teased her, "looks like you're out of a job". And Priscilla was thoughtful enough to make the offer of letting Alice conduct a piece in the 2106 spring concert. I asked Alice, because even though I know that she would likely say yes, I felt it was important for her to have a say in the matter.

At that point, the question was, "how do we make this happen so that it is a success?" It involved me making sure that Alice came to rehearsals and practiced. Priscilla did a great job coaching her and Alice, well, she was in it for the fun. Think about it - she waves a stick and 56 musicians respond. Wow!

She went through a quick dress rehearsal before the performance, and being Alice, she kept trying to angle for going out to a restaurant. No, I don't think so. Not today. Her grandmother, mom and brother were in the audience and were a bit of a distraction to her while she was on the podium, and mid performance, she stopped to turn around and sign "I love you" to them.

Although I feel that she could have done better, I recognize that Alice had a whole lot of fun.

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4Apr/160

Having a Child with Down Syndrome, Part XCVIII: Backstage Dad

Copyright © 2016 Stephen Hawley, all rights reserved.

Another spring means another ballet. Alice was cast in Sleeping Beauty as a Forest Nymph. Usually, the ballet has a parent for every group of younger kids who will help supervise, but Alice's group is fairly push button. Well, except for Alice. E and I agreed that I would be backstage dad so that she and Stuart could watch her perform. This meant that I took her to the theater, ensured that she got her make up on and kept it on, got into costume, helped her up the rickety stairs to the wings and back down again at after her time on stage.

Part of the process of being a parent of any child is being able to reliably predict what your child is likely to do and to have appropriate rewards and consequences for their actions, choosing which battles to fight and which to let slide.

In Alice's case, I knew that impulsivity was going to be a problem and that it would be best to promise a trip to Herrell's ice cream between her two performances today as a reward for good behavior. This also solves another problem of her being cooped up the basement of the theater. When Alice gets bored, she starts getting into things and I wasn't going to willingly put us both through that.

So hooray, her behavior was good and we went to Herrell's for the reward:

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And, of course, because I know my daughter, there is no chocolate in that cup. You'd think chocolate sprinkles or chocolate sauce would make a great addition to this, but for whatever reason, chocolate kicks Alice's salivary glands into overdrive which ends up leaking out the side of her mouth and given that her leotard is white, well you understand.

Waiting for the second performance was harder. I gave Alice a little more rope and she did well up to a point, playing Go Fish with some other girls, but I had to step in when impulsivity took over. I had her sitting next to me on the bombed out couch with a litter of younger girls, which was tantamount to trying to sit on a couch with 5 very large wiggly puppies. They had a lot of energy to spare.

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I don't know how much longer Alice will be doing ballet, but I believe that at present, it is still a very good thing for her.

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