Thursday, May 15, 2014

Educating practitioner seven and a half

A future physical therapist (pt) was being trained at the Medical School Rehab Center last week when we took Aster in to see the hand therapist (trained as an occupational therapist, ot).  The musculature on Aster's hand is apparently different enough that the hand therapist called the future pt over to show her his hand, and how this particular shape of clenching is characteristic of prenatal stroke survivors, and is just like the one other boy she (the ot) has seen with the condition.  The future pt seemed surprised. Whether she was surprised that embryonic humans have strokes, that survivors of such strokes can be as charming as Aster, or that survivors of such strokes need therapy for specific hand muscles, I am not sure. She started asking questions and a few minutes later, both the future pt and ot knew some of the signs of pediatric stroke and that there are support resources out there.  I didn't have my CHASA cards with me.*

What surrounds us feels commonplace,
and we can forget how extraordinary it is.
Aster has been seen by his family physician, a local physical therapist, two local physical therapy assistants, a pediatric neurologist in "the city", a coordinator for the early intervention program, his "early interventionist" (a physical therapist), an occupational therapist who came to two of his early intervention sessions and suggested we see a physiatrist and then informed us that there were no pediatric physiatrists around, an occupational therapist who specializes in hand therapy in "the city", a physical therapist in training, and four people who evaluated him for the school program**.

Almost every one of these people has suggested that Aster could benefit from seeing some other professional or doing some other therapy (suggestions have included botox, aqua therapy, constraint therapy, physiatrists, and orthotists) but almost none has suggested anyone doing such therapy near us.

Exactly one of these people suggested we look into CHASA.
We still have work to do in pediatric stroke awareness month.

Kids can have strokes.  There are resources for families of  survivors of pediatric stroke.  Spread the word.

*The CHASA cards don't exist, but I really would have liked some sort of card to give these people, "If you ever see another kid with a similar set of symptoms, send his parents here."  How would you phrase such a card?

**First IEP meeting tomorrow morning.  The paperwork continues.  Wish us luck.

6 comments:

Anonymous said...

Good luck!!
Molly

Prairie Quilter said...

We do you wish you luck, also a late happy birthday.
Wish I could be a little mouse sitting in on the meeting.

Sparkling Squirrel said...

Thanks, it went well. Prairie Quilter, while I never reject birthday wishes, you still have plenty of time to express them, as my birthday is Monday (the 19th).

Anonymous said...

If your birthday is Monday, I'll wish you happy birthday in advance, ho ho. All of these meetings with all of the advice to look elsewhere is amazing, and also rather disconcerting, why in all H____ don't they have some real, concrete advice?
He's a great little guy and we're going to work together to help him learn to use that hand, at least a little more. Maybe he'll be want to learn to hold a hoe so he can chop musk thistles!!!!!!

Sparkling Squirrel said...

Who wouldn't be inspired to use both hands to chop musk thistles?

Ad Astra said...

You can print inexpensive business cards with whatever information you wish and I think CHASA cards would be excellent to have on hand.

After we moved to WI, I printed out cards that said "Sydney & Meghan's mother" and then had contact information to hand out at playgrounds and what not when I met folks. Unfortunately, I completely forgot to put my name. I guess all parents are used to being a label "So and so's mom" rather than name!

I've used Vistaprint a few times.