Uncle Trey

As you all know, Maybelle's Uncle Trey is moving to Charleston.  What you might not know is that he's moving this weekend.  As in, two days from now he will be living in Charleston!

In honor of this fact, Maybelle's speech therapist made Maybelle a book so that Maybelle would have some visual cues to help her make sense of her Uncle Trey's arrival.  Last night Biffle videotaped Maybelle's excellent reading of this excellent book.


Uncle Trey Book, 6-27-12 from Alison, Walter, and Maybelle on Vimeo.

The only acceptable princess

Last night Biffle had to run to the store to get Maybelle some pull-ups (diapers pretending to be big girl underwear).  He came home with princess pull-ups, with Disney faces on the front.

"It's all they had!" he said immediately.  "There was almost nothing there!"

I was grouchy, needless to say.

This morning, as I was getting Maybelle dressed, she took a look at her new pull-ups and pointed at Bella.  "Princess Leia," she announced.

I was grouchy no more.  That's my girl.

Cummins Falls

Check it out!  Biffle's first Wikipedia page!

What he didn't say on this page is that Cummins Falls is the place we went on one of our very early dates.  He was into rappelling back then, so he hooked up some ropes for us to rappel down the cliff beside the falls.  As I looked over the edge, I felt my stomach start to drop.

"How far is this?" I asked.

"About fifty feet," he said confidently.

So over the side he went, cruising down to the bottom.  Then it was my turn, and I nearly peed myself with fear.  It seemed really, really high.  He was so far down below me!  But I got off the edge and was able to make it to the bottom, with the only catastrophe being that I lost my Birkenstock along the way (who the hell wears Birkenstocks rappelling, anyway?).

When I got unhitched and was standing in the water with Biffle, he said, grinning, "You know, it was actually 150 feet."

And thus began my life with Biffle.

Granola

Here's a random update about Maybelle:  she's started eating homemade granola (which she pronounces "gra-no-lalala").  It's actually a bit more significant than it might initially seem, because Maybelle is someone with very stubborn food preferences.

She has a healthy diet--one that's fueled her growth physically, mentally, emotionally, etc.--but it's limited.  She eats a couple of things of Chobani yogurt almost every day.  She eats applesauce, Nutrigrain bars (or the Trader Joe's high-fructose-corn-syrup-free version), bananas, Multigrain Cheerios, waffles, pancakes, scrambled eggs, some toast, an occasional bite of a peanut butter and jelly sandwich, and ice cream.  She loves yogurt and ice cream most of all.

This limited diet makes it challenging to pack her any diverse lunches.  Almost every day she gets the same lunch (because of course it's hard to pack ice cream for lunch).  And although she's a child who loves the routine (she's my daughter, after all), even she gets tired of eating the same food all the time.  The last two times we've eaten pancakes she's been less than thrilled, and that's worrisome.  If one item gets boring and falls off the list of approved foods, what can we replace it with?  Pirate Booty already fell off the list, and that's led to challenges when we go to other people's houses for meals--Pirate Booty was a food she could eat entirely by herself and generally didn't lead to a nightmarish mess.

So, speaking of a nightmarish mess, let me tell you about granola's entry into her diet.  My mom was here last week, and one of the things she routinely does when she visits is makes a batch of the world's most delicious granola.  And it's incredibly healthy.  Healthy enough that my mom has suggested it can cause "mega-poops":  it has quite a bit of wheat germ, wheat bran, flax meal, chia seeds, and probably some other food products that are essentially laxatives.  Maybelle loves it.

She got interested in it by wanting some bites of mine when I'm eating it.  This is a new thing of hers:  she's curious about most things I'm eating, and often will ask for a bite--and when she asks for a bite, she always gets it, and I'll try to get her to try more than one bite.  Granola didn't take much marketing on my end.  I told her that it was crunchy (and wrote "granola is crunchy" on her dry erase board--visual cues are helpful for her), and with that warning, she was prepared.  She tried several bites of mine and was enthusiastic enough that I started giving her her own bowls.  One day she ate three bowls!

The stuff is so loaded with nutrition that it's an ideal food to have in the diet of a person who doesn't eat that many different things.  The texture can be unpredictable, so she sometimes spits out a bite, but by and large it goes down.  And something to be aware of:  granola is a good food to have in the diet of someone who's getting closer and closer to being potty trained.  The mega-poop in the potty is effortless to clean up, since Maybelle herself loves to flush.  I'm glad we haven't had to deal with it in a diaper.

That's it for today.  I promise that soon I'll write you about the progress we're making toward potty training (I know you're all very very eager to read that post).

People who are related

I know that very often Maybelle looks like a small, beardless Biffle. I'm happy to say that today I inadvertently got a picture that demonstrated the fact that she's related to the Piepmeiers. Check it out. Like me, I think she's got a wider mouth than her Uncle Trey, even though he's trying harder.

Spectrum

The other day I was talking to a woman who's pregnant and has recently learned that the fetus she's carrying has Down syndrome.  She asked me several questions during our conversation, and one of the questions was about "the spectrum."  She said, "I know that there's a spectrum for Down syndrome.  Is your daughter just on the high-functioning end of the spectrum?"

I really question this whole "spectrum" rhetoric that's circulating around Down syndrome.  I don't think it's legitimate medical terminology, even if health care professionals are using it.  What does it mean, "the spectrum"?  How are we supposed to use that to categorize people with Down syndrome?

What I told the woman I was talking to was a story that I think captures my skepticism particularly well, so I thought I'd tell you all.

Since she was born, Maybelle's been friends with a girl I'm going to call Marie who's just two months older than Maybelle.  Last summer, we were hanging out at this family's house.  Maybelle was already really working on talking and reading last summer, and Marie wasn't doing much talking.  However, while we were at their house, Marie climbed up on the kitchen counter, got a jar down from the counter, and unscrewed the lid of the jar.  Inconvenient?  A bit, but let me tell you, she was demonstrating some serious gross and fine motor skills.  One full year later, Maybelle is talking up a storm, but she still can't unscrew a cap--not from the toothpaste, from a jar, from the milk, nothing--and she's only now learning to climb well enough that we're going to have to start childproofing our kitchen counters.

So:  where are these kids on "the spectrum"?  What does it mean to be doing quite well with reading but to have substantial delays in fine motor skills?  What does it mean not to be talking much, but to be physically conquering the world?

The notion of a spectrum suggests linearity:  some kids are doing well, they're high-functioning, and some kids aren't doing well, they're low-functioning.  In contrast, my experience has been that kids with Down syndrome are very much like all of us in the world:  they are doing quite well in some areas and are facing challenges in other areas.  There's no easy way to categorize these strengths and weaknesses--it's not as if some are inherently better than others.  Is Marie more high-functioning because she can use her fingers so effectively?  Is Maybelle more high-functioning because she can put words together?  Anybody suggesting something that simplistic is really misunderstanding what it means to be a person in the world.

So let me go back and revise what I said above.  I'm not questioning the spectrum terminology--I'm rejecting it.  Let's quit using it.