Counting my blessings

I know I haven't written for a while. But there just wasn't anything earth-shattering to report and blogs aren't meant to be tiresome, right?

But sometimes raising C. is like that - devoid of drama, the same old same old. No progress, no light at the end of the tunnel.

And trying though that is, it may not be the worst-case scenario. I've mentioned before that I collect my granddaughter from her kindergarten once a week. It's situated in a building that houses a center for afternoon activities for children with disabilities. Some would be termed "severe", I suppose, but none approach the gravity of C.'s.

I watch them longingly. Their parents, I imagine, must bemoan their children's impairments, mild or moderate though they are. And indeed, many must be supervised closely every minute which is why the center has an cadre of young volunteers who patiently guide, coax, sometimes drag the children and teens away from trouble and to various productive activities.

But this week I observed one of those children, many of whom have Downs as this girl of about ten did. She sat on the ground of the playground where my granddaughter and her little brother played. The volunteer aide at her side walked off for a few seconds to tend to another child. This girl, apparently uninterested in the equipment or in her friends, rocked herself a bit and then scratched her red cheeked face ferociously. 

Next, she grabbed a passing child's ponytail and pulled it hard. As I ran to intervene, the victim's brother rescued her and then made for the girl with Downs. When I explained to him that the girl didn't understand what she'd done, he backed off. .

Upon her return, the volunteer aide gathered that something had happened and asked me for details. Then she and another volunteer exhorted the girl with Downs to keep her hands to herself, apparently a mantra that is frequently drummed into her, clearly to no avail: an instant later she was digging her nails into the leg of one of the aides.

I felt momentary relief that C. doesn't pose such problems for us, regardless of the steep price we pay for her "good behavior".

Here (above) is C. at the beach during our extended-family beach getaway this past weekend.

Watching, obeying, seething

I've been diligently obeying the physiotherapist's instructions, straightening C.'s left leg, bending her right and refraining from walking with her other than the few steps back to her bed.

Here's the way I do it when I don't have a second pair of hands to assist:

We've nearly completed the recommended two weeks of this and I can't discern an iota of improvement. C. still bends her left leg most of the time and locks her right exactly as she did before. A return visit to the physio seems unavoidable. Wonder what his next Rx will be?

Every Monday, when I pick up my granddaughter, I'm exposed to many children and young adults with disabilities who enjoy afternoon activities at the center where her kindergarten is. Most have Downs, a few isolated children are in wheelchairs, most are rambunctious, many seem to give their volunteer aides a challenging time. I watch them enviously; if only my C. were capable of just a fraction of the what they do.

I've begun the process of acquiring a wheelchair-accessible swing for a park in our city. We currently don't have any. In fact, it seems there is only one in the entire country - in a distant city.

My first step was to locate and speak to the appropriate person in the municipality and learn from her what is required to accomplish that. Next, I will email them details of the swing, the location we'd like and its cost. We now await a response from the swing's manufacturer regarding its price. We intend to crowd-source for its funding.

Here's the swing I'm talking about:

I'm already day-dreaming of putting C. in it and watching her face illuminate.

In the meantime, our leading local institutionalizer of people with disabilities continues its concerted PR campaign. The goal is to convince the public - and particularly, the public with cash to donate - that those institutions are the salvation of the disabled population.

Lately, it's been harping on the "inclusion" theme. Ad nauseum. Of course, you may find that perplexing. I mean, in what conceivable way is locking people up in isolated, large institutions remotely related to inclusion?

Well, nobody over here seems troubled by that conundrum. Except for the Hubby and I. And so the cash - from donors and government alike - continues to flow to those warehouse institutions. And I continue to seethe.

Uplifted by Downs

Isaac Levya, actor

It's been a while since the last post but not much has happened. Still the daily 3-5 intense seizures which wear me down.

So we finally wrote to the neurologist for guidance, enquiring specifically about starting a daily dose of THC to try and tackle them. (We now thankfully have a precious new bottle of the stuff.)

She recommended that we raise the dose of Keppra by 250 mg/day. But our THC idea didn’t appeal to her. She noted that a colleague who is more knowledgeable about cannabis assured her there is no evidence that THC affects seizures in any way, notwithstanding our anecdotal evidence to the contrary.

Nevertheless, she OKed one drop of it/day maximum.

For now, we’re trying the additional Keppra, so far without success. We’ll give it 2-3 weeks and then return to the previous dose of 2,500 mg./day. Afterwards we’ll try that daily drop of THC. Not that I have any hope a micro-dose like that will help. To zap C.’s long strings of seizures, we give 17 drops.

I’ve been encountering many Downs children lately when I pick up one of my grand-daughters from kindergarten. She attends a semi inclusive kindergarten. That translates into a small group of Downs students joining her “typical” class for a couple of hours each morning. The group then returns to its segregated class for the rest of the day.

I know, I know, that’s just token inclusion and the school could do more. But it’s better than none at all.

I mention this because I’ve noted how longingly I watch the Downs kids. I envisage the rosy life we’d have if only C. had been blessed with Downs instead of the disabilities she’s lumbered with.

That’s quite a switch from the days of my pregnancies when my deepest dread was giving birth to a Downs baby. It seemed the direst scenario possible.

Live and learn.

A propos of Downs Syndrome, I just learned of a film starring a Downs actor, "Any Day Now". As usual, I’m playing catch up – the film was released back in 2012. It hasn’t aired yet on TV in these parts so I’ve only seen clips from it on YouYube. It strikes me as a gem and the many awards it’s won attest to that.

Playing alongside its stars, Alan Cumming and Garret Dillahunt, is a young actor with Downs, Isaac Levya. The film is about a gay couple in the 'seventies trying to adopt a child with Downs Syndrome and the legal battles they face along the way. In an interview [here], Dillahunt describes Levya’s professionalism and how, during filming, Levya would occasionally tell his co-actors: “Give me some quiet; I’m trying to get in character”.

He attends acting school, auditioned for the part and endearingly discusses his acting experiences here.

I live in a place where mothers are still known to abandon Downs newborns in the hospital and where some who do bring them home later institutionalize them. Success stories like Isaac Levya's are particularly uplifting in this environment.

Some inspiration from India

I had planned on personally giving C. this week a hydrotherapy session at the pool I swim in every day. I've watched years of her therapies and figured that by now I could tackle it myself. For years I've dreamed of doing so when the therapy pool at her school was closed for vacation. But good intentions were as far as I got.

One reason was the challenge of getting her there and the other was my reservations about using a barely heated pool vs. the well heated therapy pool.

Now, with her caregiver here to help me. it seemed feasible. The therapy pool will be closed for the next three weeks and I really am curious about how C. would react to the water. If she'd respond well, it would mean a huge savings of money.

So I was suitably psyched up and set aside Thursday for our session. Then one of her nearly-healed pressure-sores re-erupted with redness all around the center. The wound clinic team reopened it, prescribed a fresh course of oral antibiotic and forbade swimming for at least a week.

This is exactly one year after the blasted sore first erupted! That's got to be a world record for persistent pressure sores.

The other "good" news is that the government's department of health has responded to our request for a raised dosage of CBD and one bottle per month of THC.

It was "Nothing doing!"

I'm flabbergasted. This is supposed to be one of the most progressive countries in the world with regard to medicinal cannabis and a leader in research into its benefits. What gives?

We'll see what the neurologist has to say about this verdict. I dread having to cope with C.'s seizures without any THC.

But I won't end on that negative note.

I have a soft spot for success stories starring people with disabilities. Remember that remarkable Argentinian kindergarten teacher?

This story hails from India and is as much about a plucky young woman with Downs as it is about her devoted parents who gave her a restaurant of her own to run. All three of them have a message for other parents of children with disabilities and for the children themselves.

The story is all the more remarkable against the backdrop of the general plight of Indians with disabilities and specifically with Downs Syndrome.

The video is at https://www.facebook.com/thebetterindia/videos/1613392548695052/

From a World Bank report:

India has some 40 to 80 million persons with disability. But low literacy, few jobs and widespread social stigma are making disabled people among the most excluded in India. Children with disabilities are less likely to be in school, disabled adults are more likely to be unemployed, and families with a disabled member are often worse off than average.

And the plight of those specifically with Down Syndrome:

Downs Syndrome affects 23,000-29,000 children born in India every year. Though the numbers are alarming but there is very little open dialogue on this topic in India. Though it is not fatal, not in the developed countries but in India it continues to be fatal. This is mostly because of the low awareness levels and outdated medical facilities.

India has the highest number of people suffering from Down Syndrome in the world. The numbers are alarming but what is more frightening is the fact that this condition is fatal in India due to negligence, lack of awareness, and obsolete medical and technological facilities... Out of the 23,000 to 29,000 kids born with Down Syndrome in India every year, the survival rate is only 44% for those who have congenital heart disease [Source]