Monday, April 20, 2009

A Tiny Adventure: Chicks!

We stumbled across a great outing yesterday.

Slow & gentle hands....with firm support from daddy.

We were driving past a farm supply store and noticed the marquee announced "Chick Days!" I was completely hooked and insisted we return. I knew the kids -- Max, especially -- would like it.

There were several giant galvanized troughs filled with a variety of fluffy little chicks, and a sprinkling of ducklings thrown in as a bonus.

They were at the perfect level for viewing -- and touching!

The noise the chicks made was delightful -- loud, yet gentle. We all oohed & aahed and giggled as we watched them scurry around and then hunker down in sleepy heaps.

(One day she will understand why I comment on her nails. Heh.)

The kids enjoyed picking out their favorites and were thrilled to hold them.

Thrilled, I tell you!

Max could have stayed all afternoon, I think.

And now I must include a video clip here, because though the still photos are cute of the kids, they don't even begin to capture the cuteness that is a bin full of peeping chicks!

(See what I mean??)
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Sunday, April 19, 2009

Autosomal-Recessive Bathtime Vocabulary Quirks?

Misery loves company a properly run bath.

Max loves taking baths, and a good long soak in the tub was just the thing to help pass the time and bring him some comfort during the endless week of illness.

I had trouble getting the water temperature right for him, though. Because he was feverish, I didn't want him to be soaking in a really hot tub of water, so I tried to keep the water temperature a little bit cooler than normal.

Two different times I ran the water, deemed it the appropriate temperature, and had him get in...only to have him start protesting and saying, "ouch! hot!...ouch! hot!"

The first time I added a little more cold to get the temperature down. But he kept saying "ouch! hot!" and I knew it was NOT hot. Bath time was cut short; he was miserable and I thought he must be really feverish if that water felt hot to him.

The second time it happened, I again added cold and he got really mad and kept saying "ouch! hot!" so I added MORE cold, and he got MORE upset and said MORE "ouch! hot!"....until suddenly he switched gears and signed "cold" and shivered.

I then turned the faucet back towards hot, and as the water got warmer, he relaxed and nodded yes.

Suddenly it clicked.

I recalled my mom telling how when I was little, she had a similar struggle running my bath water to the right temperature. I would say "warmer" so she would add hot. But I would just keep fussing for it to be "warmer". What I meant was that I wanted it warm. Not hot; not cold. WARM. In my mind, warm was an actual temperature -- a point to return to -- not a relative comparison.

I think Max was using his words in the exact same way. He was requesting a temperature. The water wasn't too hot for him; he just wanted it to actually be hot!

It makes perfect sense, really, when you think about it from a certain angle.

What can I say? Great minds think alike!

Sunday, April 12, 2009

A Valiant Effort

As you may have heard, we've had a slew of sickness passing through our household. Max was down with a fever for several days, but mostly just seemed to have a very nasty cold.

Among Max's quirks are the facts that he doesn't like to cough (something which is difficult when one does, in fact, HAVE A COUGH) and that he is very gaggy (something which is magnified when obscene quantities of mucus and drainage and phlegm are, in reality, DROWNING ONE'S UVULA).

Gulp. I gagged a bit myself just typing that sentence and thinking about all that goo. Sorry. I'm just trying to set the stage for today's story. Ahem. Moving on!

To give him credit, Max has matured to the point where he has better control over his gagging. Well, actually not over gagging per se, but over his gagging to the point of puking. When The Look comes over his face, we can sometimes shout "No Puking!!" and he will actually stop (and then do a big gulp). Sometimes he can't stop, but he will run to the sink first, which we consider no small triumph.

So anyway, that nasty cold led to frequent gagging and puking. And sneezing! And Max did a great job of running to the sink when he was near it and needed to puke....but he forgot that it is dangerous to sneeze when one's face is so close to a counter's hard edge.

He sneezed his face right onto the edge of the counter.

More than once.

Poor guy. As if he wasn't miserable enough, he now has a split lip, too.

It was a valiant effort, though.

Tuesday, April 7, 2009


The kids are on Spring Break from school right now...though it hasn't felt very celebratory or fun so far. Everyone's been sick. Everyone -- my husband and all three kids. The boys have been sick enough that they are accepting of endless days laying around on the couch, flipping channels and dozing. But that's not completely accurate; Max would be accepting of that most any time -- provided a loved one is sitting next to him. What I should say is that he hasn't asked to go outside or tried to initiate any of his usual little games, and there have been fewer smiles and giggles (and more tantrums) than usual. That's more accurate.

He's surprisingly tolerant of illness. He doesn't like to cough, though, and refuses to breathe through his mouth when his nose is stuffy. So you can imagine how frustrating that can get. But otherwise, he just gets tiny. He needs extra holding and snuggling and less talking. He doesn't complain; he just carefully shushes me with a finger to his lips and shakes his head "no" very seriously and small.

That's the thing about not being able to communicate his feelings to us. There's no whining or moaning or dramatic complaints about sore throats or earaches or nausea.

But also, that's the thing about not being able to communicate his feelings to us.. There's no whining or moaning or dramatic complaints about sore thraots or earaches or nausea. How do we know?

And there it is: the first duality. It's the flip side of the coin. He is pleasant about his illnesses, but we are left with little clue as to the nature of his illness!

I've been thinking about this duality thing lately. It seems to be such a recurrent theme in life with disability.

Having a child with a disability brings such extremes. The highs are HIGH; the lows are LOW. The celebrations are joyous; the mourning is heartbreaking. It brings out the best in you. It brings out the worst in you. It solidifies the strengths in your marriage. It chisels away at the weaknesses in your marriage.

But I also see this duality in Max himself. He is cognitively impaired; but he uses the atypical brain he has with genius. And it seems he swings behaviorally, too: he is happy or sad, awake or asleep, smiling or crying, silent or loud, together or apart.

He knows his body well enough to run to the kitchen sink when he starts a gagging coughing fit. But he is surprised by his body every time he sneezes while standing there and hits his head on the counter's hard edge.

He fidgets and moves and jerks until suddenly he is asleep, as if a switch was flipped.

He's together or apart. Sitting at the table while I make supper is apart. None of that "in the same room" stuff for him. He wants to be in the same airspace. But being in a completely different room can be acceptable.

He's happy or he's sad. It changes from moment to moment, but there aren't grudges or resentments or residual annoyance. He cries to have his nose wiped, but then is over it and the offense is forgiven.

He wants to be held, but he doesn't. He wants my hand "here", but then he wants it "there". I've been holding the image of Dr. Doolittle's Push-Me-Pull-You in my head lately.

So the sickness is hard. Because I can tell -- now -- that he is sick. But I don't really know HOW sick. And there was a fairly sizable gray area early in the week when I wasn't sure if he was sick or not. He pukes or he doesn't; it's rarely due to illness. But then sometimes it is an obvious sign of illness. He eats or he doesn't; it's dependent on any number of things, the combination of which we've never entirely deciphered. It's not always about hunger.

So here is what I've been laying here puzzling over: if everything is so black and white, why is it so hard to figure out what's wrong???

It's just not always clear.