New year, new campaign, new drug regimen

C. in the hydro pool a week ago

Last week, C. had her first hydro session since being hospitalized. We were all blown away to see her float with her usual finesse as if she hadn't just been through a 3 week hospitalization for status epilepticus.

 

And the previous day, I gave her THC for a sudden seizure surge. That's happened a few times lately. Occasionally she has a fever so I only give her Advil to control them. But with her status experience still so fresh, each increase in seizures is unsettling. 

 

I've been busy writing about my pet peeve: institutionalization of people with disabilities. As I've shouted from the rooftops, that practice is rampant and accepted in these here parts.

 

During C.'s hospitalization, one of the doctors on the team suggested to the Hubby: "Why don't you put her in some sort of medical facility?" That was after the team had reined in her seizures with a cocktail of powerful drugs that left her near-comatose. We were wondering how we'd care for her at home in that state. The "send her away" suggestion was that doctor's response. (Here's what happened afterwards.)
 

I was encouraged to learn about a new local grass-roots movement against institutionalization. Its specific goal is to win government-funded personal aides for people with disabilities along with the right to live wherever they choose to within the community. Exactly what I've been hankering for! Our national center for human rights for people with disabilities is promoting the campaign.
 

A creative approach to achieving that is to dissuade those benevolent people who volunteer at and donate to such institutions from doing so. Lumos - founded by J.K. Rowling - is at the forefront:of that push.

Here is what Georgette Mulheir, Chief Executive of Lumos had to say about that: 

"More than 80 percent of children in the world’s orphanages have at least one living parent and most have relatives. They should be at home with their families, not in institutions. What orphanage children and their parents really need is to be reunited, with all the supports and services that will enable those families - no matter how poor - to give their children what they need to thrive and reach their full potential.

J.K. Rowling, the founder of Lumos, who has spoken out against orphan voluntoursim frequently on Twitter, could not have put it better: “ Voluntourism is one of drivers of family break up in very poor countries. It incentivizes ‘orphanages’ that are run as businesses. Globally poverty is the no. 1 reason that children are institutionalized. Well-intentioned Westerners supporting orphanages perpetuate this highly damaging system and encourage the creation of more institutions as money magnets.”

Yet evidence suggests the number of children going into orphanages in some parts of the world is increasing."

Wishing everyone a happy, healthy, seizure-free and de-insitutionalized 2018!

P.S. Last night I began giving C. a daily dose of THC. For the next couple of days, it'll be just one drop 3x/day but I'm planning to raise it gradually. I'm winging this; no doctor has recommended it but Elizabeth Aquino - my cannabis guru - gives it to her Sophie with CBD.

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Cheers for JK Rowling - and a nod to Keppra

Well, it's been a while and I really can't explain why.

I've been snowed under by ordinary family stuff including caring for a few precious grandchildren for several days. But why I haven't found time to update is a puzzle.

C. decided that she'd better rein in her seizures when her nieces and nephew arrived. More realistically, the only change in her diet and meds that I can credit with the turnaround - and that's very reluctantly - is raising her Keppra dose.

Two weeks ago when she was wracked with seizures I asked the neurologist whether she'd recommend raising Keppra. She liked the idea. So we're now at 2,500 mg/day, divided into two doses

I would have preferred an improvement due to the raised cannabis. But unfortunately that hasn't been the case for several months.

Not that we're about to drop it, of course. I still hold out hope. Perhaps once we get the license for a monthly bottle of THC and can experiment with a daily dose of it we'll see positive changes.

I listened to Christiane Amanpour's interview with J.K. Rowling [link and below] on CNN - twice through! It was music to my ears.

In these parts, we are bombarded with "news" reports lauding the largest chain of institutions for children and young adults with disabilities. Local media outlets cover everything from groundbreaking ceremonies for expansion buildings to visits by local politicians, celebrities and wealthy donors.

Never a negative word is uttered about the popularity of warehousing these most vulnerable children. Certainly, the concept of de-institutionalization of people with disabilities - Rowling's goal - is never, ever raised.

I urge you to watch this Rowling interview - once will suffice.

She's intelligent, articulate and passionate about her organization, Lumos. "As much as possible, Lumos wants to help children return home to the arms of those they love", she told Amanpour.

Amen.

Vaccines and baby-steps: more on my pet peeves

Vaccination's dangers don't fall evenly

I've been donning my grandmother-hat more  than usual these days which is the case, I'm sure, for many of you in the northern hemisphere.  Blogging has been relegated to the back burner so this post will be brief and time lagged.

First, I recommend reading Jane Brody's August 10th column in the New York Times. It's about vaccines and, like all the others I've read about the controversy, it omits the fact that vaccines pose a higher risk for children with pre-existing neurological impairments than for healthy ones.

I thank Elizabeth Aquino for linking to the Pediatrics article which reports the results of a study of vaccinated children. Here is the abstract (link): the full-text of the article requires a subscription.

The researchers concluded that:

their results suggest that in most cases, genetic or structural defects are the underlying cause of epilepsy with onset after vaccination.... These results have significant added value in counseling of parents of children with vaccination-related first seizures, and they might help to support public faith in vaccination programs. 

The comment I sent Brody received only 5 recommends. I doubt it made the slightest dent in the conventional wisdom that our children - those with pre-existing neurological impairment - need no exemption from compulsory vaccination laws. But the comments were even more interesting than the article and you can still add yours to the 353 already up.

I also called the local organization which, along with several others, invited the CEO of Lumos, Georgette Mulheir, to speak at a conference held here in May. The lawyer of that organization, which assists cognitively disabled adults, told me that the conference primarily involved a project underway here to transfer 900 adults residing in closed institutions into homes within the community. The goal is to integrate them in every way, including employment.

Classic image: Institutionalized baby care

According to the lawyer, one year after the project was launched the organization has just begun testing potential candidates to determine which will be most likely to succeed. Next stage will be the search for jobs. She conceded that only those with the highest level of functioning will be considered. I'd call it a baby-step - in slow motion - in the right direction. I'm not impressed.

I was shocked to hear that the lawyer knew almost nothing about our country's large chain of closed institutions for people with disabilities. I've written several livid articles about that thriving, government-subsidized enterprise and she asked me to send the links (which I did).

So, Lumos' Mulheir came and left without learning about our entrenched system of institutionalization. What a squandered opportunity.

Now for another excerpt from Mulheir's speech: She gave an example of how de-institutionalization was effected in one country:

We found that in Bulgaria there are over 200 children with hydrocephalus. That's fluid on the brain. If it isn't treated, the head continues to grow and expand. The end is a painful death. In Bulgaria, the surgery these children needed was provided by the state but the drain, the device needed to provide the children with subsequent quality of life, was not. Consequently those children were institutionalized. Working with the government authorities in Bulgaria and Romania, we demonstrated that the cost of keeping a child in an institution far exceeds the cost of the drain these children require. That money could be spent on providing the drains in place of funding institutional care. The annual cost of institutionalization is 63,960 Euro while each drain costs only 1,500 Euro. Only after seeing the numbers were the authorities convinced to provide the drains and hundreds of children who underwent the surgery now live normal lives within the community. Another point in Bulgaria: children were dying of malnutrition in institutions at the  rate of 3 per month. When the time allotted to meals was examined in one of the institutions, it was found that each child had on average one minute and 20 seconds to eat. Without intervention and change, many more children would have died there. Today the Bulgarian government is working on this. Some institutions still remain but many children have been transferred to the community and mortality has dropped to almost zero.

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.

Lumos musings

This week our region reaped more that its fair share of good news regarding disabilities. I'm sorry if that's left some of your parts bereft of any. One thing I can assure you: it had nothing to do with me.

It was mostly thanks to our minister of health who suddenly decided that medicinal cannabis will hitherto be available at regular pharmacies. You know, those shops that currently sell you every other drug but cannabis. Where this will leave our current supplier, located in another city, is not clear. Out of business, is one likely possibility.

Anyway, this minister has, in one fell swoop, made the hubby's life much simpler as he has been making a three hour trip every month to collect C.'s cannabis. (There are once monthly deliveries made to our city but for the last few months our supply has run out before the delivery date.)

The second good news item involves J.K. Rowling's anti-institutionalization organization, Lumos. I've written about it here and later.

I'm always wishing that our country would win some if its attention. After all, we're cursed with a widespread respect and support for the institutionalization of children with disabilities from both the powers that be and the masses. One network of such facilities grabs a lion's share of available funds to further its activities.

Well, it seems that several months ago the director of Lumos, Georgette Mulheir visited my country to address members of several organizations that assist people with cognitive disabilities. I'm sorry I missed her but will try to learn what the upshot of that event was. Was this influential network mentioned? What goals were set for change in my country? 

I've got a transcript of her talk and will share excerpts in my next post.

Help! My daughter C. just finished her penultimate year of school!

That's me, recording the party for posterity

This week, the Hubby and I dutifully attended C.'s end of school year party. There was a crafts activity in which C. participated not at all. Then some refreshments and a talk by an esteemed social worker. She's a friendly, intelligent woman (we know her personally) but her presentation had clearly been dumbed down and abridged to "suit" the audience's "tiny little mother mind" to borrow one of Elizabeth Aquino's gem-phrases (here for instance).

Her major point was that perceptions of our children's capabilities vary depending on the setting and the assessor. To prove that, we were shown. a slide show of a dozen optical illusions. Not two, not ten, a dozen! You know - to be sure we got the point.

Then she invited written questions from the parents (we were only about ten). In response to "Where can we send our children when they reach 21 and 'graduate' from the educational system?" she mentioned a couple of day programs in the city. Then she launched into the option of group residences - which I prefer to call "institutionalization".

She positively raved about them. "Nowadays it's far better than when I started working in the 70's," she said. "You can visit any time you want to - provided they aren't in the middle of some activity. Even the siblings can visit. So you can remain close, connected to your child."

I found it all a bit unsettling, to put it mildly. I was actually more incensed. Especially coming from a person I admire and respect. Is it any wonder that this country, so advanced in other fields, is antedeluvian in its approach to care for its citizens with disabilities?

And all this happened on the very day that J.K. Rowlings' NGO, Lumos, won the Overall Award at Britain's Charity Awards 2015.

Here is a synopsis of why it won:

Another of JK Rowlings' creations

In 2007, with support from Lumos, Moldova’s government pledged to reform its childcare system, closing institutions and replacing them with family and community-based services. The charity found that while non-disabled children were easy to place back into families, disabled children faced being left behind, as Moldova had no system to allow inclusive education in local mainstream schools for thousands of disabled children living away from home in grim residential special schools. So Lumos set about creating inclusive educational services from scratch.

It was a process that involved changing mindsets at every stage of the process – putting the needs of children above the needs of the State and at the heart of decision-making. Thousands of professionals had to be retrained. The charity used financial modelling to prove that replacing institutional care with home and community-based services is cheaper, as well as better for the children.

By now the number of In 2007, with support from Lumos, Moldova’s government pledged to reform its childcare system, closing institutions and replacing them with family and community-based services. The charity found that while non-disabled children were easy to place back into families, disabled children faced being left behind, as Moldova had no system to allow inclusive education in local mainstream schools for thousands of disabled children living away from home in grim residential special schools. So Lumos set about creating inclusive educational services from scratch.

It was a process that involved changing mindsets at every stage of the process – putting the needs of children above the needs of the State and at the heart of decision-making. Thousands of professionals had to be retrained. The charity used financial modelling to prove that replacing institutional care with home and community-based services is cheaper, as well as better for the children.

By now the number of institutionalized children in Moldova has reduced by 80 per cent  children in Moldova has reduced by 80 per cent.

Lumos, please invade my country!

Coming up: Some terrific educational tips for children with Cortical Visual Impairment (C. is one). The Hubby and I attended a day of lectures on that topic delivered by an expert in the field visiting from Massachusetts.