Plinth Blog Special Needs Parenting

17Dec/150

Sometimes You Can’t Help But Be Grumpy

Alice has been off her game the last two days. She's been kind of irritable and not listening well (for example, we made cookies yesterday after school and she turned on the mixer when I directed her to wait please). As a parent, you can't help but be grumpy when you see behaviors that are well beneath the best or even the typical for your child.

Then there are the moments like this morning when I called Alice for breakfast:

Me: Alice, breakfast!

Alice: Breakfast ti-i-i-i-i-ime! (woot, woot, woot!)

Me: Did you say, 'woot, woot, woot'?

Alice: Yup.

And I couldn't help but be vicariously joyful. It stinks sometimes to be a jaded adult that I don't see the joy in an over-easy egg and a piece of toast.

Then again, Alice cured that joy with a good solid shot of "I'm going to play in my room and not get dressed in a timely manner."

Some days it's this clip from Parenthood. It really is.

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17Dec/150

Having a Child with Down Syndrome, Part XCI: Band Concert (a.k.a. The Parent’s Prayer)

Copyright © 2015 Stephen Hawley, all rights reserved.

Alice and I have been practicing French Horn on and off since the beginning of school. A typical practice session is mouthpiece buzzing, long tones, then some attempt by me to get her to do lip slurs, then Valve Simon Says. Although I have succeeded in improving her long tones (well, long tone, really since there's only one), I have yet to find the right recipe to get her to change pitch. Smiles, frowns, moue (kissy face), vowels (ooo, eee, aaa): nothing has worked for her.

Tonight was the winter band concert. She plays in the 6th grade band which has 91 kids. Ninety one. That's a very big group, akin to the size of a symphony orchestra.

The school arranged to have an aide help Alice get her seat, but after that, it was all on her.

Alice had a rough afternoon. It was very difficult for her to attend to the task at hand and I was having a great deal of difficulty imagining her succeeding this evening when she would be tired on top of the rest. I let the aide know what I had seen and then gave Alice a final encouragement ("I can't wait to see you do a good job tonight!" "OK, daddy!").

I took my seat, well away from the stage (if Alice sees a family member, she'll perseverate) and silently recited the parent's prayer:

Dear Lord,

Please let nothing go wrong.

And if something does go wrong,

Please let it not be my kid.

Alice attended mostly - there were some people close to the stage that she wanted to wave/talk to. Alice brought the horn to her lips at appropriate times. I have no idea if she was making any sound at all since she was surrounded by the immense wall of sound coming from 90 other beginning players. So, yay?

Her band director should be canonized, though. 91 kids. Wow.

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15Dec/150

Having a Child with Down Syndrome, Part XC: In On the Joke

Copyright © 2015 Stephen Hawley, all rights reserved.

"Ev, where's the pepper?" I asked this morning after rummaging throughout the kitchen and dining room. I found the salt, surely the pepper couldn't be far?

"Oh! It's on the table in wrapping paper."

"..."

"Alice was fixated on wrapping presents yesterday, so Alice [her namesake] helped her wrap it up."

"Good to know."

IMG_20151214_183649368_HDR

I filled up the emergency backup pepper mill (just visible, propping up the present), addressed the present to me and then put it under the tree.

11 more days until comedy gold ensues.

Sometimes the jokes just write themselves.

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