An invitation to inspiration

This image accompanies
Elizabeth blog post

I daresay that I speak not only for myself but for some of you too: caring for our children not only saps our emotional, physical and monetary resources; it leaves us in the red.

There is little or nothing for us to offer other children like our own. And I don't mean in thought, spirit or writing but by interacting with them, talking to them, listening to them, interpreting their non-verbal language, playing with them,

Elizabeth Aquino, whose blog introduced me to  medical cannabis, benzo harm, benzo weaning and other disability insights, shows us that we can do it.

Come be inspired, as I was, by an excerpt from her latest blog post:

Here's some good stuff. I spent a few glorious hours in Sophie's school classroom this morning. I brought fresh donuts and about nine Trader Joe's gingerbread houses for the kids to put together and decorate. They're a rowdy, fun bunch of young men and women. They are Asian and Hispanic and African-American and Caucasian and Christian and Orthodox Jewish and Muslim. They sang Christmas carols, danced and laughed and wiped frosting all over themselves. They worked very hard throwing sprinkles over the roofs and piled the little sugar people up by the front door. The teacher declared awesome mosh pit! and they all giggled. If you need a bit of cheer in your life, if you're completely demoralized by all the bullshit -- by the freedom lovers and gun lovers, by the war mongers and terrorists, by the expressions boots on the ground and collateral damage,by the Federal Reserve -- you should visit a class of young adults with disabilities.

You won't feel gratitude for what you have and what they lack. You'll want what they have and what you lack.

Weaning Update: C. has now had several days of respite from those strings of seizures I mentioned last post. We're thrilled to be back to the occasional ones scattered throughout the day. Isn't everything relative?

On drawings, dogs and dismal data

Well, it seems our dog fancies himself an art connoisseur. The first portrait I've done of the children at C.'s school was blown onto the floor without my realizing. Here is what the drawing looked like after "the critic" expressed his opinion of it. With his claws.

We adopted this 4-legged art critic some 13 years ago in the hope he would interact with C. and give her pet therapy. He never did. For a few years he was pretty cute and endearing nonetheless. But now that he's elderly, the "cute and endearing-ness" have faded and for the most part he engages in activities along the lines of demolishing drawings.

I'm trying to resurrect it. (A snapshot of part of it is over on the right.)

And while on the topic of drawings, here (below) is one of C. during her bout of dehydration, before we took her to the ER.

She is well hydrated these days despite the intense heat. Her seizure count also seems to have dropped a bit, so that we're back to 3-4/day. I'm even considering reducing her benzo a smidgen again.

And now for those excerpts I promised you from the address that Georgette Mulheir, Chief Executive of Lumos, gave during her visit to my country several months ago:

• One study of institutionalized children in 30 states in the U.S. showed that 28% of the children with disabilities died in the institutions. The risk that a child with disabilities will die in an institution is several 100% greater for those with disabilities.
• A study of institutionalized children under 3 in Europe produced similar findings: 0.29% of the children without disabilities died there. 28% of the children with disabilities died there.
• The likelihood of dying in childhood was 100% greater for the latter group.

I'd say that leaves us in no doubt. But those blasted institutions in my country continue expanding - with government subsidies.

Stay tuned for more Georgette Mulheir excerpts.

Dehydration update

C. is well hydrated these days but seizing like her life depended on it  Lots of that "central fever" (as the doctors here refer to that neurological, asymptomatic fever) and, we presume, withdrawal seizures due to that sudden drop in benzo dosage which the neurologist ordered.