Frustration overflow

First a swing update:

The Hubby met with the local distributor of that enticing Liberty Swing I am trying to have installed in our city. Currently there are just two in this entire country, both in a city that's over an hour's drive from us.

The parks department of our municipality won't permit us to donate and install it in one of its playgrounds without first winning the approval of some committee. The first step toward that approval is a written request. But here was their response to the email I sent detailing what we'd like to do:

Equipment of this sort has never been installed in our city. We need to examine the technical details of this item of equipment and determine whether the municipality will be able to maintain this type of equipment. Only after examining the above topic and receipt of authorization from the relevant bodies will it be possible to install such a swing and to maintain it. We will be in touch with you in order to survey possible optimal venues for installation of the swing.

To be clear, Liberty Swing's website lists 215 such swings extant throughout the world - excluding the two in our country. So we're not taking about inventing the wheel here.

But the distributor assured us the ball is now in his court. He'll deal with the municipality directly and hopefully move the project to fruition.

I'll still tackle the crowdsourcing, of course. We'll see whether he delivers on his promises.

C. is consistently unpredictable these days. We never know whether she'll hand us an hour or so of hard seizing or remain calm. If she seizes, we never know whether it will be accompanied by central fever or not.

When I put her brace and shoes on, I can't predict whether she'll stand erect, walk nicely, bending and straightening her legs. Or whether she'll just tilt her torso sideways and keep her legs stationary.

At mealtimes, I never know whether she'll place her spoon into her mouth independently and swallow her food quickly. Or whether she'll drop her spoon, need to be fed and then store each mouthful in her mouth for eternity.

Definitely not an easy period.

I've been writing locally about my pet peeve - warehousing children with disabilities - and growing increasingly frustrated with my failure to have an impact.

This country's largest chain of warehouse institutions is constantly sprouting new, greedy tentacles. It is partnering with a growing list of organizations, several of which claim to champion true equality and inclusion for people with disabilities. They should know better.

One of its many outrageous operations is a "prisoner rehabilitation" program whereby imprisoned criminals are bused several times a week to its institutions to interact one-on-one with people who have profound disabilities.

Some of the prisoners are serving substantial sentences. But the institution insists they have all been vetted for safety and even permits them to change out of their prison garb into civies during their visits. Yet they concede that the men aren't permitted to interact with female residents or with minor residents. Nor are they admitted to the hydrotherapy pool.

Hmmm. Sound safe to you?

My written inquiries have revealed that in all likelihood no other institution in the world "rehabilitates" prisoners in this manner. Two major prison service entities - one international, one local - assured me they have never heard of one.

If you are aware of such a program, I would very much appreciate your sharing details of it. I would also welcome any tips on how to foster de-institutionalization in countries that are resistant to that transition.

Like mine, of course.

Unwelcome weight loss

During the summer vacation last month and, again, when hydro-therapy was cancelled last week, I gave C. her showers at home.

Besides being strenuous,  the experience was traumatic. That's because, to put it bluntly, C. has grown gaunt. The real-deal gaunt; the anorexic-gaunt.

Those weeks when she was barely eating (here and here for instance) have clearly taken their toll. I decided to add something to her modified Atkins diet that might add a bit of fat to her skin and bones. First, I tried red quinoa mixed in with her meat and vegetables.. She rejected that out of hand. For three meals she refused to lift the spoon and, when I myself fed her, she kept the stuff in her mouth for ages before swallowing despite many swigs of water to wash it down.

I admitted defeat and ditched the quinoa. I've now switched to whole sesame tahina. She seems more amenable to this and spoon-feeds herself again, albeit very slowly. Each meal takes a half to two hours.

Here is C.'s gauntness in all its glory:

 

And here is her seizure-related gash healing very nicely:

I can't wait to have those whisker-like stitches removed, though.