Tuesday, March 24, 2009

Dr. Seuss's AACs

Dr. Seuss's AACs
(A Poem about Augmentative & Alternative Communication)
by Jujyfruit

Did you know there are some
for whom speaking is tough?
Who use signing, and pictures,
and pointing, and stuff?

But those methods can lack;
They can frustrate all!
(And leave us each feeling
quite helpless and small.)

But there are cool new ways
for a voice to be heard,
and to be understood,
without saying a word!

These high-tech-y tools
are expensive and rare...
but each time I check,
a brand new one is there!

They're newer than new,
and they sparkle and shine,
with computering parts
that are finer than fine!

Oh, the wonderful things these devices can do!
They can scroll straight to "cow"! They can help you say "Moo!"
They can show you a "bowl" or a "sister" or "bus;"
they can help you say "Help!" with such minimal fuss!

Take oodles of photos!
Build word lists galore!
Use the voice of your choice,
speak in school -- or the store!

Give your puppy a name!
Select lunch on your own;
ask for milk, juice, or pop!
Even talk on the phone!

Give your teachers a way
to test how much you know!
Tell your dad that
your shoe is too tight on your toe!

Request movies by name!
Then, just for a lark,
tell your mom that you want
to eat cheese in the park!

Yes, the world is your oyster,
and you are it's pearl;
Communication's the KEY
for each boy and each girl!

It's exciting and fresh --
talking fun that is fun!
But there IS a small catch:
You can only have ONE!

The selection is vast;
the technology new.
Take a carefullish look;
Find the one right for YOU!

Do you need overlays?
Would a camera be nice?
Do you like Unity?
Or would Minspeak suffice?

Are we shooting towards goals
of literacy?
Is it helpful to have
just a small qwerty key?

And how many screens --
sixty-four or just three?

What? What's that? What's that that you say?
You say 64 is the magical way?
Sixty-four will display all the things you might say?

(Are you sure that's not
far too much stuff in the way??)

Or maybe it is?
You really don't know?

How do we decide
which direction to go?

There are all shapes and sizes,
and colors galore!
But we can't try them all,
and they keep making more!

Should one organize words
by theme or by list?
Have a visual base,
or conceptual twist?

And how does it feel?
Does it fit in your hand?
Do you have to sit down?
Will it work when you stand?

Can you use it in rain?
See the screen in the sun?
Can you lock the controls?
Charge it up on the run?

Is it easy to clean?
Will it fit in your bag?
Is there user support
without having to nag?

Is it heavy to hold?
Are there cords in the way?
Can it actually say
all you hope, dream, and pray?

Does it need USBs?
Or expansioning packs?
Is it easy to learn,
yet has challenging tracks?

Is the camera built-in?
Are there symbols or pix?
Can it play any games?
Does it do any tricks?

Will it speak Japanese?
Can it surf on the web?
If I buy the upgrade,
will it dootle or fleb?

Can it dance the fandango
or do the Watusi?
Does it have shoulder straps,
or clip to one's caboose-y?

Is it bluetooth compat?
Does it lay golden eggs?
Can it walk by itself
on its wee robot legs?

Is it unbreakable?
Does it use rocket fuel?
Can it fly on its own
to and from my son's school?

Does it come with its very own echo-locator?
(And if lost, will it come right back --
sooner than later?)
All this pick-y and choose-y
and question-y stuff
makes my head feel all woozy!

So which choice is best?
Which one passes each test?
Which rises above all the lowlier rest?
From near and from far,
North, South, East, or West,
which one is the

How I dread, dread, dread, DREAD
sorting through in my head...
Can't anyone out there

Sunday, March 15, 2009

One Theory About Why I Have Insomnia: The Wordy Version.

This is the wordy version.
(Click here for the illustrated version.)

I've been having a lot of trouble sleeping lately.

The irony is, even though I am not sleeping well, Max is! Recently he's been not only ready to go to bed, but actually requesting to go to bed. This is huge. Really, seriously huge.

I've often heard that sleep issues are common in kids with microcephaly, and that some of those issues often resolve with maturation. It's been nearly 8 years in coming, but I do believe we are finally witnessing a bit of that long-awaited maturation kicking in!

There's only one small problem with Max's new chosen sleep routine: it involves me.

That sounds terrible, I know. But he really is picking the wrong person; I am a very light sleeper myself. (Plus a bit of a night owl; I love to putter around in the evening when the house is quiet.) Going to bed at 8:00 p.m. is really cramping my style. And his bony knees & elbows and highly regimented positioning are really cramping my body.

Plus, he has a lot of rules. He must rest his head on my left shoulder, with his head tucked under my chin or pressed firmly into my cheek. (This explains the adult acne newly infesting the left side of my face and neck. He's really warm.) His legs must be wrapped over mine to fall asleep, though occasionally it is acceptable to simply have his feet tucked solidly under my legs. His legs must be drawn up in a tight fetal position, and his knobby knee knobs must then maintain contact with some part of my body at all times. (Until about 3am, when he suddenly needs to stretch and straighten and flex and push, clear down to his toenails, using my slumbering body as resistance.) Finally, the sheet and blanket require a good bit of arranging and fluffing and adjusting and pulling and tugging and flipping until they meet his exacting standards. Once those are adjusted correctly, he then begins the bodily adjustments all over again.

He essentially keeps bustling around and fidgeting until suddenly he is still, and then -- just like that -- he's asleep. I think that is why the phrase "fall asleep" was started; some people really do just abruptly fall into it. (Picture a child running and jumping around the edge of a deep hole, and suddenly he makes a misstep and vanishes. Whoosh -- asleep!!)

I generally lay there and try not to move or breathe or blink wrong. (And to ignore my aching left shoulder.) I am developing a curiously detached mind; I am not really there, but rather walking myself through lists, or re-hashing old conversations, or recalling everything I've ever done wrong in my life....and then trying to quickly backtrack and think about rainbows and fuzzy kittens instead, which doesn't always work. (Because as we all know, rainbows are just a trick of light and there is no pot of gold, and kittens just grow up to be smelly cats that shed all over and pee in the corner of your closet!) Let me tell you, there is something about laying there, captive (not captivated, just captive), while the rest of the world is watching tv or quietly talking or reading a book or playing games or slumbering peacefully (or even heading out for the night!) that leads the mind to negative territory and a general feeling of persecution. Instead of feeling well-rested and caught up on sleep, I am simply becoming more and more irritable. It's ridiculous.

Once he is soundly asleep, I feel my mind heave a big sigh of relief and the earth begins to rotate again.

The bizarre thing is, once he's out, I can flop him and move him and position him and roll over on him, and he will remain asleep as long as I stay beside him. HOWEVER, if I attempt to exit the bed -- say, for example, I slip out of bed to go to the bathroom? -- then he's instantly awake and coming to find me. His eyes aren't even open, but he's upright and moving. It's like he has a 6th sense.

Or maybe he is a heat-seeking missile. He is locked in on a target and does not veer. (And in case you think there is a literal clue in that analogy, we've already considered that. We've tried extra blankets, warmer pjs, piles of pillows -- even the mom-scented-blankets that are so often recommended for babies -- but they don't work.)

So I stay there. In a bed that I wasn't quite ready for, which makes it hard for me to fall asleep. I do sleep during the wee hours, though I have come to rely on melatonin, Benadryl, or NyQuil for assistance.

I wake up early, too, and when I cannot play possum for one more minute, I try to sneak out. He immediately sits up, rubs his eyes and grins at me, and signs "coffee." And so another day begins for one happy, well-rested boy...and his cranky, un-rested mom.

I'm telling you, all this extra sleep is exhausting me!

One Theory About Why I Have Insomnia: The Illustrated Version.

This Is the Illustrated Version.
(Click here for the Wordy Version.)


(Only not really, because it's still THE MIDDLE OF THE NIGHT!)


(P.S. Yes, I trim his toenails. I'm beginning to suspect he's hiding crampons under his pillow.)

You know -- CRAMPONS?

Tuesday, March 10, 2009

Meanwhile, Upstairs at the Ranch...

It's time for another episode of The Story Behind the Story. This one is called What Max Did While We Were Painting in the Basement.

Getting projects done around here often involve a few extra steps. Outside yard work goes pretty well with Max around, but inside jobs -- especially messy ones like painting -- just aren't always compatible.

We scheduled a full day of activities for him with his grandparents (both sets) during the really long marathon day of painting. But during the shorter afternoon of touch-ups and finishing, my husband and I both painted in the basement while Max was upstairs with his older brother. We set him up with a video and left his brother in charge with two basic rules: Keep him upstairs & Keep him safe.

Max actually stayed upstairs the whole time. I was pretty impressed and asked what he did to stay busy....and then looked around and realized the evidence sort of spoke for itself.

Here's a little peek. Can you figure out what Max did while we were painting?

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