Plinth Blog Special Needs Parenting

19Sep/160

Having a Child with Down Syndrome, Part CVII: Alice Eats the World

Saturday started out like a typical Saturday. I was trying to be lazy in bed and heard some suspicious noises downstairs, so I dragged myself out of bed to go investigate. Alice had taken out the eggs, a pan which was now on the stove (pro-tip: take the knobs off and keep them out of the way), the gluten-free bread, and the milk.

"Alice, what are you up to."

"I'm making eggs and toast."

"Not with that pan," I thought. "You want some help with that?"

"Yes, please."

I made a quick over-easy egg, one slice of toast with butter, and a short glass of milk.

Alice made short work of it and asked for more.

"I think that's enough, don't you?"

"Yes, daddy" - Alice's standard reply of resignation.

She went off to do her "morning things": get dressed, brush her teeth, etc.

E started making her breakfast and asked me if I knew where the yogurt was.

"Nope. I bought a new tub of it yesterday."

"I know - I had a little bit of it but I don't see it."

More searching, no paydirt.

I went down to the basement where Alice had been watching TV, and there on the table next to the couch was the open tub of yogurt with a spoon, a napkin, and a glass of milk. Alice had eaten all but maybe 6 ounces of it. Here. Let me give you some perspective.

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She ate nearly 24 ounces of yogurt in one shot. That's about 3 servings or 900 calories. And then she decided she wanted breakfast.

Evie used the rest in her breakfast, then Alice came down.

"Hey, Alice."

"Yes, daddy."

"How many breakfasts did you eat today?"

Alice holds up one finger.

I look at her using my +2 Stare of Bullshit Detection.

Alice holds up two fingers.

We talked to her about why you only need one breakfast, hoping it would stick and suspecting that it wouldn't.

An hour later, Alice came up to me.

"Daddy, I want snack please."

"No." I replied firmly.

"But why?" (which is Alice's new standard response for 'you said no and I disagree')

"Alice."

"Yes, daddy."

"How many breakfasts did you eat today?"

"2" (no hesitation)

"That's why."

"Yes, daddy."

Alice eats the world.

 

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1Sep/161

Having a Child with Down Syndrome, Part CVI: Camping

Copyright © 2016 Stephen Hawley, all rights reserved.

Both E and I camped when we were young. Like all campers, we've experienced successes and disasters and everything in between. As adults, we decided that we wanted to share the good parts, as much as possible, with our kids. When I was a scout, camping to many forms - from riding a bus to a campground to being dropped off at a trail head with back packs. When you've got a child with significant disabilities, the slider gets adjusted to the "easier" camping where we load up our car, drive to a state park, set up a tent and camp site and stay for a couple nights.

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There is a picnic table in here as well: a luxury, as is being close to a bathroom/dish cleaning station. I don't believe in bad camp food and Alice has Celiac disease, so many pre-packaged camp foods are out of the question. We plan and pack accordingly, including a cooler packed with ice packs to keep the perishables fresh for our stay.

E wanted to bring s'mores makings, which was never really a thing for me. As a kid, I roasted marshmallows, but never did the s'mores. I think they're too sweet and heavens are they messy. That's why I brought these:

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Having a pack of these around is so good for many things, besides s'mores cleanup. I went fishing with each kid and as a result, I ended up with worm guts and fish slime all over my hands. I washed my hands twice and still had "eau de worm" and was able to clean my hands of the remaining stink with these.

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Alice insisted that she wanted to go fishing, and I'm OK with that. For her, that means blue gills. They're plentiful, voracious, dumb, and hand around fairly close to shore. That makes them the perfect target for her. She had her Disney princess rod and I rigged it with a bobber, hook, sinker and worm. I cast out and she very slowly brings it back in, which is a near guarantee for a strike. They hit the hook hard enough that she doesn't really need to worry about setting it, just winding it in. And that is fabulous two hand physical therapy for her.

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E took her for a walk, and it was a 1/4 mile to where we were fishing, so she got some exercise.

As to sleeping. Both kids were totally wound up the first night because CAMPING! and CRICKETS! and S'MORES! But E and I were able to sit by the dying coals of fire without too, too many interruptions. Still, as an adult, I typically don't end up sleeping a lot. On the first night, I had a about an hour of sleep which finished with me dreaming that there was a family of skunks outside out tent and Alice was inviting them in. I woke up to see her sitting up right at the door of the tent. I was bolt awake, ready for skunks. Fortunately, I just had to get Alice into her sleeping bag and zipped up, but that was challenge enough. The next day, Alice was not at her best, which is usually the case when she doesn't get a full night's sleep. I didn't get any more. I "counted sheep" and got well into the 31,000's before I gave up in frustration.

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E had packed some games and we played several rounds of "Goblins Drool, Fairies Rule!", which is a fine game. The rules aren't too complicated and he game play requires simple pattern matching as well as being able to spot rhyming phrases. Stuart was at his patient best with her and we had a good time, even though both Alice and I were not at our best.

The second night, Alice had unzipped her sleeping bag all the way before bed, so I had to fix that. 20 minutes later, she called for help and she had unzipped the bad again and looked at me with a solid "what's this shit?" look. I zipped it back up and got her in. When I checked on her later, she was out of the bag and sound asleep facing the wrong direction. In the words of my mom, "let 'em lay where Jesus flung 'em". She woke me up 2 hours later because she was cold. I tried to get her in the bag and it was like reliving the scene from Monty Python and the Holy Grail:

"Make sure the Prince doesn't leave the room until I come and get him."

"Not to leave the room even if you come and get him."

"No until I come and get him."

"Until you come and get him, we're not to enter the room."

etc.

In this case, it was "Alice, you need to come here and get in the bag." Nothing. "Alice, you need to come here and get in the bag." "But daddy, my sleeping pad!" "Is right here. Under your bag. You need to come here and get in the bag." Nothing. "the bag. Here." I gesture going from right in front of her eyes to the bag, making sure she's tracking. "Come here." nothing. "Alice. Come here." nothing. I lose patience and firmly grab her biceps and haul her to the bag. "Here's your bag. You need to put your feet in." nothing. "your feet. Put them in here." Alice puts her head in the bag. "That's your head. I need your feet." I touch her feet "Hey! Don't touch me!" "Put them in bag. Great. Now scoot." nothing. "Scoot. You need to scoot." nothing. I put a hand under her butt and give an assist. "Scoot. Scoot in the bag." She scoots in. Finally. I zip her in and go back to sleep. Two hours later, she's awake and shoving me because she scooted out of the bag.

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Frustrations and lack of sleep aside, it was still a great trip. Lovely scenery, reasonably quiet, great weather, no injuries, not too many bugs and we were out just long enough.

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