Another shot at our wheelchair woes

After a long delay, my interview with a major local news station, aired. I spoke about institutionalization of people with disabilites and about raising a child like C. at home. 

I mentioned my recent guided tour of a local, large institution that houses 80 such residents ranging from infancy to 40 years old ["My plunge into activism"]

The avalanche of venomous comments my words generated on that station's website - some were downright ad hominem - shook me to the core. Now I wonder whether doing the interview was wise, notwithstanding the praise that a leading activist sent me. 

Anyway, no turning back the clock; I'll have to just weather it.

We have two important, much-deferred appointments approaching for C.

One, tomorrow, is with a physiotherapist who is a seating expert at a major rehab hospital in our city. We'll bring C. in her new, unusable wheelchair to ascertain whether it is salvageable via inserts and sundry adjustments. Since the chair can't be disassembled we had to book a special van from a local non-profit to transport it.

I've really had it with the old wheelchair we are now using - it's only slightly better than the frigging new one. Here's hoping we return home tomorrow with some sort of magic-seating-bullet.

The second upcoming and long-overdue appointment for C. is with a geneticist. The goal is to finally diagnose C. with something, anything, i.e. not only symptoms but an underlying cause -. rare syndrome, a random mutation, not fussy.

We hope, for one, to thereby relieve our other children of the worry and fear hanging over them with each of their pregnancies. We also hope to learn that whatever C. is afflicted with would respond -even minimally- to some treatment. 

Modest goals, right?

C. has been seizing a lot lately. Not quite status epliepticus but demoralizing nonetheless. 

Notwithstanding, she positively rocked again this week at my hydro session with her, after entering the water with seizures. 

Too bad we don't have a private pool to zap those seizures with every day. 

My plunge into activism

Somehow I have less and less time these days. Admittedly, since my heart attack two years ago, I've stopped skimping on sleep. But I doubt that explains my inability to do nearly as much as before.

In any case, one result has been neglect of this blog. 

I suppose that the "same old, same old" status of C. has also contributed to my failure to post (seizures are still a fixture of our lives, fine and gross motor skills - plateaued and that new wheelchair is still a nightmare.)

An additional factor is my recent involvement in some honest-to-goodness activism. It fell into my lap, out of left field. 

Here's how:

A major local organization defending the rights of people with disabilities recently paired up fifteen members of the legislature with fifteen involved citizens, me among them. We were sent - all on the same day - to stage surprise raids on twelve large, closed institutions scattered across the country. 

The idea was that the law-makers, who by law must be admitted whenever they appear at an institution's door, would insist on being accompanied by their activist-partners. Of course, on our own we would never have gained entrance.

My lawmaker-partner and I visited an institution that's just fifteen minutes drive from my home. It houses 82 people with severe disabilities ranging in age from infancy to 40 years old. I've been harshly criticizing this place in posts here and at other sites for a long time so it was thrilling to finally gain entrance to it.

A complaint letter has been sent to the relevant government ministry containing some of what I learned from the tour guide - an employee of the raided institution.

I've spent tons of time transcribing the recording I made of our tour guide's hour-long spiel. She's an administrator of the place and just spewed the jargon-laden gobbledy-gook for over an hour.

This week, a complaint letter drafted by the advocacy organization and containing some of what I learned from the tour guide, was sent to the government department that's in charge of social welfare. 

I'll share some of the damning points in another post, after the department responds.

On institutions and getting your life back

From the New York Times article quoted below

How nice. We have our own month.

This year’s theme for National Family Caregivers Month, November 2018, is “Supercharge Your Caregiving”.

Now that's so vague, it begs an interpretation. This is mine:

Galvanize and supercharge the public. Enlist them as supporters of home care.

So here goes.

To those living in countries like mine, where the institutionalization of people with disabilities remains a flourishing business: You may be among those swayed by the propaganda disseminated by our local institutions. You may now be convinced that they are indispensable; that people with disabilities could not survive – or would suffer - without them.

And I don't blame you. You are in good company. Most of our fellow citizens have succumbed to the contention that the residents of our large, closed institutions have nowhere else to go; that many have been abandoned by their parents and that some are sent there by court order.

But I have learned that the above is a far cry from the truth.

I called a hotline recently opened by the largest chain of large institutions in my country. I posed as a parent who is considering institutionalizing her daughter with disabilities, urged on by her husband but very reluctant to take the step.

The staff member who answered my call immediately assuaged my concerns about the negative effects of institutionalization which I told her I’d read about.

She reassured me that I would “remain my daughter’s parent” since I would be free to visit her whenever I choose to. To reinforce that, she mentioned one mother who stops by her child’s institution every night to tuck her into bed.

I had described my daughter as “severely disabled”. But at no point in the conversation did the staff member inquire about the extent or type of disability my daughter has. She asked me whether I had tried out some sort of day program. When I replied that we couldn’t find a suitable one, she left it at that, with no questions about why we rejected them all.

She conceded that handing my daughter over would be “a difficult process” but that ultimately it would be worth it. Once it is done, she promised, “you will get your life back”. To conclude, she urged me to meet with the institution’s social worker who would be able to give me further details.

Sometimes this chain of institutions resorts to outright hard-sell. A video proudly publicized on its website features the hyperbolic praise of several parents who institutionalized their children. One father relates that within days of his wife’s passing, he was phoned directly by the CEO of that enterprise and urged to hand over his child. He is grateful for that interference.

In this country the belief that that large, isolated institutions is the ideal option, is embraced as gospel. Even disability advocates don't challenge it unless the blatant abuse of residents has been exposed.

And as we all know, reports of abuse are rare. Staff members are loathe to turn whistleblower for fear they’ll lose their jobs. Parents rarely learn of abuse from their children who are often incapable of reporting it. Even when they do, many are afraid to speak out lest their abused children incur revenge abuse from the staff.

So, as I said, if you have succumbed to all the pro-institutionalization PR, that is understandable and you are not alone. But rest assured, it's an entirely different story in the wider enlightened world.

This recent NY Times opinion piece ("The Lasting Pain of Children Sent to Orphanages, Rather Than Families") highlights that enormous gap.

“Millions of people volunteer abroad every year — students, taking-a-break students, church members. Often they go to provide care and affection to children in orphanages. But such volunteers might be doing more harm than good. Rich countries closed their orphanages long ago. Decades of research [link] shows that institutions — even the best — harm children, who simply do better in every way in a family. Within one, they can get consistent adult attention and engagement. But orphanages are expanding in poor countries."

Why is our country treating its children with disabilities as if it were a poor country when the truth is quite the reverse? Why does our government gives tens of millions of dollars annually to just one chain of institutions?

That cash could instead enable families to care for their children with disabilities at home with greater ease and peace of mind. It could finance therapies and caregivers to "give parents back their lives". And it could achieve that more cost effectively than through institutionalization.

Many well-intentioned people help sustain institutions by volunteering in them. That support, dubbed "voluntourism". is actively solicited by institutions here and in poorer countries. Ours, repeatedly posts profiles of overseas volunteers who have who have worked there. Over a dozen such volunteer "testimonies" as they are dubbed, currently appear on one website.

That NYTimes piece about volunteers has more harsh words for volunteers :

“Volunteers from rich countries make children’s lives worse in two ways. One, paradoxically, is by hugging them. By definition, every child in an orphanage has been abandoned. Their attachment issues get worse with each volunteer who showers them with love for a week or two — and then flies away. Volunteers are also perpetuating a system that takes children from their families…What drives the growth in orphanages isn’t motherless children. It’s donors and volunteers from countries that don’t use.”

So make your voice against institutionalization heard. Support parents who want to care for their children with disabilities at home but who find that the system abandons them. With subsidized caregivers and therapies, many who institutionalize our children would keep them at home – and still “get their lives back”.

Let's follow the lead of other enlightened countries. Could they all be wrong?

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.

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.

That same old Sisyphean fight against the system

C. being evaluated for a new wheelchair in August 2017
(We're still waiting for it to be approved)

It's been six months since we lodged all the paperwork necessary to convince the health officials in our government to approve a new, subsidized wheelchair for my daughter, C.

In the meantime she continues to spend most of her waking hours in the ill-suited, uncomfortable wheelchair selected for us ten years ago by the "seating expert"/physical therapist in her school.

At our request, our current seating expert who works at a rehabilitative hospital and who specified the new wheelchair, inquired again about the delay. She wrote us that the government person said the requested treatment has been delayed "and they promised to hurry."

Now, even if a wheelchair were delivered to our door tomorrow, it couldn't count as "hurrying". Of course, we are bracing ourselves for a further interminable wait.

And after a two week phone pursuit, we finally landed the physical therapist from our health fund. He showed up last week and put C. through his routine of extremity stretches, advising us to do them with her every day. He said he would return in a month since we're only entitled to 12 sessions per year from the fund.

When the Hubby requested that he provide us with a recommendation for hydrotherapy for C., he poo-pooed its benefits since, after all, our child "doesn't live in the water".

That's the same response, verbatim, he gave us last year.

So once again, the Hubby patiently educated him about the phenomenal benefits our daughter derives from hydrotherapy. And once again, he agreed to recommend that the health fund allot her their maximum of 6 sessions.

That's per year! And note that the rules say we can't get any hydrotherapies via the health fund without his recommendation.

Yes, it is somewhat Kafkaesque trying to keep your severely disabled child at home rather than locking her away in an institution.

This is particularly true in a country as enamored with the institutionalization of people with disabilities as ours is.

The physiotherapist working with C.

I was shocked to learn this week that it admits representatives of our leading chain of large, closed institutions into our classrooms to "educate" pupils about disabilities. So we have our most impressionable population being taught that "inclusion" equals isolating people with disabilities from both families and communities.

Here is what the website of that chain says about its brainwashing program:

"We couldn’t be prouder of this program, which is the fulfillment of a dream for [us]. Working together with the Ministry of Education, we are educating towards change on a grand scale and seeing immediate results countrywide,” said its director and the brains behind the program. The benefit that he raved about was: "a noticeable spike in youth-led volunteerism and social activism initiatives."

My apoplexy peaked when I read that

"to increase this outreach program's geographic reach and professional depth, we have partnered with two non-profit organizations, both leading voices in the fight for disability rights in in this country."

Et tu advocates for the disabled? I have written to one of those non profits about this bizarre partnership and will share with you any response I receive. (Postscript: A day later, none)

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.

C. is communicating - but it's exhausting us

A screen grab from the great video clip I mention below

The Hubby and I have been stumped by a brand new challenge that C. is posing these days.

Until a week ago, she slept right through the night almost without exception. And by that I mean 8-10 consecutive hours. Now she has taken to waking us up every couple of hours with a medley of screaming, crying and moaning.

When it was an isolated event, we actually welcomed the interruption to our sleep because, after all,  it's a form of communication with us. And, heaven knows, there precious little of that.

But it's worn out its welcome. I mean, two hours after feeding C., giving her drinks, changing her diaper and turning on the clip of "8 Hours of Soothing Lullabies", what on earth could be bothering her?

Hubby has been the hero, getting up to give C. water and gain us another couple of hours of quiet. Last night, I urged him to wait and C. actually stopped crying and fell asleep again for a few hours.

Maybe it's just a bad habit that needs breaking. I'll let you know how tonight turns out.

And here's a priceless video clip [via YouTube] I chanced on and urge you to watch. It has people with disabilities advocating for in-community living - deinstitutionalization - for themselves. No non- disabled activists take part in it. And it's even humorous. I hope you'll be as impressed with it as we were and that you'll agree it deserves to go viral.

Still plagued by pressure sores, C. graduates

The inflatable mattress overlay I mention in the post. The cylinder
on the right is both container and pump.

The pressure sores are sprouting like mushrooms after a rainstorm. I now spend 40 minutes daily re-bandaging six of them, with one a double header. Every small sore  blossoms into a whopper.

So I finally contacted the pressure-sore expert whom our pediatrician had recommended (yes, at 21, C. is still in his care; more on that later).

He was very responsive, requested photos of the sores, ordered fresh blood tests along with a visit by an occupational therapist in order to have C.'s sleeping and sitting equipment evaluated.

While in waiting mode, the Hubby took C.'s malfunctioning air mattress to our equipment lending center for replacement. He was told that it was actually a useless model and we were upgraded to the inflatable mattress overlay in the photo above (from here).

We were also told by the expert there that we must limit C.'s time in her wheelchair. She should  be seated only for meals, spending the rest of the day either lying, standing in a stander or sprawled in a bean bag. Live and learn.

But until we can get that new equipment, she still sits quite a lot in her wheelchair.

Today, still awaiting a response from that kind pressure sore doctor re the photos and blood results, I called his clinic. Lo and behold, the kind doctor has disappeared on an overseas vacation that will last until the end of the month but didn't bother to share that with me five days ago.

So I made an appointment with his substitute for this week and will update afterwards

Along with the pressure sores, we have embarked on life with C. at home all day. Here she is last Thursday at the end of her final day of school:

C. on her last day of school

Many people we know - good, well-intentioned folks, some close friends others staffers at C.'s school - have asked us why we aren't putting her into an institution and they all specify one. It's actually a chain of large, closed institutions scattered throughout this country that is highly regarded by the general public and lavishly funded by our government. I've grown weary of delivering my anti-institutionalization lecture. So sometimes I just say "no" and skip the explanation.

It's getting tiresome and infuriating. I mean, when will this society get it? A child isn't somebody you evict and dump on strangers because the going got rough.

Just a year ago, our major concern with C. was the intense summer heat and dehydration which landed her in the ER overnight. Ah, for the good ol' days.

And on a positive note, here's a tour of a stunning playground designed to cater to the needs of children with severe disabilities: Perhaps we can all use this as a model for a neighborhood playground that our children could enjoy.

In the dark and groping

Here we are, C. and I (my hand, that is) both struggling. She, to move her fingers on the board and elicit sounds. I to prod her to do that. At times we both succeed. Ever so slightly.

In the world of profound disability, the minutest desired movement is welcome. But sometimes even that eludes us, as you see here.

In this domain, I'm really just groping in the dark.  I rely on whatever meager Occupational Therapy skills I've gleaned from professionals over the past twenty years. It can be an exercise in frustration and futility.

In the dark and groping from Mary Silenti on Vimeo.

The OT's at C.'s school are in the same predicament. They may very well succeed with the less severely impaired children. But when confronted with C. and those like her, they are rather clueless. In the fifteen years she's attended that school, they've achieved nothing with her.

I know that there are OT's out there whose expertise lies in working with profound disabilities. The Hubby and I once hired a pair of them for an hour at great expense. C.'s school lacks the funds to employ them and we couldn't afford to bring them back to our home.

But our government clearly can. If it re-channeled just a fraction of the multi-million dollar budget it lavishes annually on large, closed institutions, to children with disabilities who live at home, this problem would vanish.

And C. might actually press the buttons on her toy board. It's that simple.

The Miss You-Can-Do-It Pageant. So, why can't I?

Abbey Curran, Miss Iowa 2008 and a contender for Miss USA

I know I'm playing catch up again.

Nevertheless, here's a link to a documentary the Hubby and I watched together a few days ago. It's about the US "Miss You Can Do It" pageant for girls with disabilities, launched eight years ago by Miss Iowa 2008, Abbey Curran, the first woman with disabilities to compete in the Miss USA pageant. She's a generous, articulate, intelligent  role model - studying to become a nurse practitioner - who also happens to walk with great difficulty due to CP.

Click to see the documentary video via HBO. There's a background video about the pageant here via YouTube. And a brief trailer from HBO on YouTube here.

As with most documentaries, the children's disabilities didn't even approach the severity of C.'s. Nevertheless, as usual, I pretended that C. belongs to the same "club"; by the end I was moved to tears. (The Hubby was also deeply moved but he doesn't do tears).

My repeatedly-rejected article about institutionalization (mentioned here) was finally published and generated two irate comments. (and a positive one). While my critics are certifiably bird brains, they still threw me for a loop. Here's an excerpt from one:

People who need to be institutionalized are done so by the state only because there are family members are unable to take responsibility or a foster family
And when the person's medical condition is to (sic) severe for home care. But to use an article such as this one to dis credit Institutions takes away from [your] sincerity... .
[This country] is forced many times to put the disabled in an institution because there no other options exist. But to call them cruel and archaic is self servicing....

The second critic claims to have a child who has lived for 11 years in the very institution my article attacked. She was somewhat less verbose than the first:

This piece is a complete fraud! It is a lie!

I have informed my country's largest NGO advocating for people with disabilities of the article. This organization, a vocal opponent of institutions until 2008, has since kept mum on the topic. So, once again, I asked its director along with a couple of his underlings, basically, "What gives?". In the past, the answers I've gotten to that same question have been "It's a slow process", "Be patient", "We can't rock the boat too much", "Where are the parents of children with disabilities?Why don't they support us?" and "We can't afford to anger one of our major donors."

I sent that email to the NGO three days ago and, while one underling did respond -  the same old inanities as in the past - the director has written nothing.

It's awfully lonely on this side of the fence. I think I need some Abbey Curran gumption.

Two nice nurses and a heart-wrenching story

C. after a seizure caused her
to bit her lip

Now back to Tuesday's nurses. One was the VNS company's rep. She observed and photographed C.'s VNS. Then she listened to our history of C.'s epilepsy and gave us an hour's spiel about the VNS.

She "repped" so well that she swung me from lukewarm to ga-ga about the idea. She told us that the VNS' benefits aren't limited to seizure reduction, which is pretty impressive in itself - 62% of implantees improve either in number of seizures, length/intensity of them or in recovery time after each one.

But we learned that the VNS can also provide benefits unrelated to seizures, in cognition and memory. The nurse/rep emphasized that C. is not likely to ever enjoy any dramatic improvement in those areas, just tiny changes.

Well, as I've mentioned before,  tiny smidgeons of progress are very alluring to us. Of course, dramatic would be a lot more welcome but we're realistic. So the chance of tiny smidgeons won us over.

We already have an appointment to have C. assessed by the surgeon (early June).

Nurse #2, our health fund savior, arrived while the VNS nurse/rep was still around. He assessed and re-bandaged C.'s pressure sore and gave it what sounded like a D+ for healing progress. Ah, well, can't win them all.

Most intriguing about his visit, though, was what he told me about his wife who, after months of bureaucratic hurdles, finally scored a medicinal cannabis license a few weeks ago. Last visit, he told me it was controlling the pain nicely. But this time he said she has stopped using the stuff because it was triggering her nightmares.

Champion nurse/rep chimed in with an anecdote about an epileptic child who became irreversibly psychotic on cannabis and whose neurologist is beside herself with concern now. Hmmm. Of course this reached us 3rd or 4th hand so we took it with a bucketful of salt.

Over here, we are still enduring "bad days", with C.'s old "central fevers" in the picture too. THC continues to help but this period has been very debilitating for her and me. Yesterday, after one seizure we found her like this (see photo at the top).

The source turned out to be a small cut on her lower lip which stopped bleeding immediately after I wiped her clean. Her lip is a bit swollen today but doesn't qualify as a major concern.

In light of the current seizure situation, the VNS is looking increasingly attractive. I just hope the surgeon doesn't reject her as "too complicated a case" because of her current VNS which was implanted in December 1999. It's a possibility the nurse warned us of.

Now for the heart-wrencher alluded to in the title - an Israeli opinion article I found on line, unrelated to our nurses. (though it does feature a nurse).  It will undoubtedly resonate with many of you. Caution: keep the tissue box close by.

A child isn’t a lollipop
Alon Idan | Haaretz (Israel - Hebrew), May 5, 2016

He looks at me for a moment as if he wants to say something but immediately lowers his eyes. I notice that on his left knee lies the head of an adolescent girl. I walk back to the bench I had been sitting on.

“Listen...” he is nearly stuttering now, a few seconds later, “Can you perhaps help me?” I tell him yes but don’t understand what help he needs. “I need you to help me hold her,” he answers looking in the direction of the head that is resting on his left knee.

Patients in waiting room (in Birmingham AL as it happens)

We are outside the ultrasound rooms in a hospital with people lying on beds scattered along  the length of corridor, most of them old, wrinkled,  eyes stricken, but the head  lying on his knee is the head of a young pretty girl. I ask: “Help holding her?”

He nearly apologizes: “She is mentally retarded, she doesn’t speak at all and the last time they wouldn’t x-ray her because she got wild, and everything she eats she immediately vomits up, for a long time now, and I must have her x-rayed, must.”

He’s her father and is over the age of 50, and he’s an Ethiopian immigrant from many years ago and now sits alone on a hospital bench, and his daughter is lying on his left knee, and when he speaks about her in a mix of apology and pleading she suddenly raises her head, opens her beautiful eyes and looks at him, and afterwards at me, and says nothing.

He has an orange hat, and under it is a man who works every day in a hotel, the night shift, always the night shift, “so that I’ll be able to be with her in the mornings and afternoons until my wife returns from work.” And he returns from his shift at 2 at night and falls asleep on the sofa beside her. “I fall asleep like this”, he demonstrates. “Sitting, I fall asleep sitting. There’s not much room in the living room, and I must be beside her at night, in case she wakes up suddenly and does something.”

An orange hat and a hand that is now resting on it, while I sit beside him and don’t know what to tell him. “It’s hard”, he suddenly says, his voice cracking, “This life is hard, very hard.” I nod, helpless. “It’s not a life.... nobody comes to us, and I don’t go to anybody, and everything revolves around the child.”

I ask him whether the state helps, and he answers that “there’s no state that helps like this one, but I’m not prepared to give her away, not prepared.” And then he says a sentence that he will repeat over and over again: “A child isn’t a lollipop, you don’t give away a child like that. She’s my child. Who will care for her the way I do? I will care for her as long as I am able to, until I die. A child isn’t a lollipop.”

The door opens and shuts but nobody looks at him. He begins to fear that I might need to leave. “I’m holding you up”, he says to me “I’m holding you up.” I say that it’s OK, he shouldn’t get stressed and he relaxes a bit. “You understand,” he continues, his hand rests again on his orange hat trying to crush it into his skull, “I don’t leave the house, only to work, it’s hard like this, it isn’t a life.” And a moment before I say to him that I understand – can you really understand? – he breaks: “There are no friends, nobody, alone all the time.”

A grown man, a child lying on his knee, now sits on a hospital bench and cries.

Presently they call him. It’s time for the examination. We walk towards the door: the father, his daughter and a total stranger. “Who are you?" the nurse asks me. And the father immediately cries: “He’s with us.” “Why does he have to be with you,” she asks and the father says: “Because she moves a bit and he’ll help us hold her.” “Hold her?” She’s suspicious and immediately determines: If it’s “a case like that” then the ultrasound can’t be done.

The father is stressed. He says everything will be alright, that his daughter must be checked,  just as a large-bodied janitor approaches us: “Come, come a minute,”  the father asks and the janitor doesn’t understand. “I need you to help us too,” he says, and the nurse looks on in disbelief. Suddenly, without asking, the father raises his daughter – long, thin and frightened like a baby – and simply lays her down on the examination bed. Before the nurse has a chance to object, he says: “You’ll hold her legs, and you’ll hold this hand and I’ll hold her like this.” The nurse is about to say something, apparently to object, but she never finishes the sentence she begins to formulate.

Lying on the bed in a darkened room, three men gripping her body, a strange device, perhaps painful, threatens to touch her – the child trembles from fear and begins to go wild. “Don’t be afraid, my darling” the father cries and caresses her face, “don’t be afraid, everything will be OK.” Now the janitor, his face large, a yarmulke on his head, his eyes moist, says to her: “Don’t be afraid, don’t be afraid.” I too join the plea, as her right hand struggles forcefully to escape my grip.

But the girl is still going wild and the nurse is still hesitant, and now the father strokes his daughter’s face again, repeating the words: “Don’t be afraid, darling, don’t be afraid.”

He stands directly above her, his head above hers, so frightened that the nurse won’t perform the examination. “Don’t be afraid, darling,” he continues; now it is truly a prayer. “Don’t be afraid darling”. But she continues to move, to go wild, to resist, when suddenly I notice tears trickling onto her face. The father is sobbing on his little girl. Sobbing onto her and begging: “Don’t move, please, don’t move, let her check you, you must be checked, please.”

And the nurse, who can no longer avoid the sadness and the power and the beauty of life that coalesce in the tear drops flowing from the pure heart of the father to the frightened face of his daughter, immediately smears the gel on the girl’s stomach and places the scanner on her.

(Translation: Frimet Roth)

Where black is white, good is bad and institution-founders are heroes

I haven't written about the VNS because the nurse/rep from the distributor company re-scheduled our meeting for next week. The delay was welcome since I'm in no way psyched for C. having any surgery in the near future. I'm much more inclined to first try a higher dose of cannabis.

We should soon have a new license increasing our monthly supply - provided our neurologist submitted the request to the government's health ministry as she promised she would. It would take a serious seizure setback - like the one we had two weeks ago - for me to consent to this surgery.

I've been somewhat unsettled these days by the choice of this year's recipient of our country's highest award. The  government selected a man who has single-handedly done more to entrench the institutionalization of children with disabilities than anybody else here. (No, that was no typo.)

This man will receive our highest honor for founding our largest and most isolated institution for children and young adults. He is very proud of what he does and incessantly promotes and fund-raises for that institution and its wider network of institutions. He claims his own child - who never spoke a word - "told" him to do it.

That son, whom he plonked in this "dream" institution at the age of 13, passed away shortly afterwards. But this man's activities are being hailed by my compatriots as "furthering the inclusion of people with disabilities".

Yes, institutionalization is actually equated - in these here parts - with inclusion.

Ever since the award's announcement, every media source has been pursuing and idolizing this now-iconic figure.

On the other hand, a critical op-ed I wrote about this man and his award has been rejected by every local news site.

Help -  I inhabit a bizarro universe.

Cannabis Chapter 2: We're starting with THC oil

Video still from the CNN clip: An Israeli father gives his
son THC oil [Video Source]

After reading about it, thinking about it, talking about it and blogging about it, I watched a CNN video clip about it: that is, THC oil used in conjunction with CBD oil.

The clip [online here] finally spurred me to call our Cannabis supplier's nurse to inquire about the bureaucracy involved in getting THC. Mind-blowing answer: no requirements.

As Murphy's Law would dictate, to get the CBD oil, which is low in THC and can't produce a high, you need a neurologist who has treated your child for an extended period already and who is willing to submit the demanding Ministry of Health paperwork. Then you must wait a month to, hopefully, receive the license which states precisely the amount your child is permitted to receive per month. That license must be produced every time you purchase the CBD oil. If you raise the dosage to a point where the stated amount won't suffice, the neurologist must re-submit all those documents to apply for a brand new license.

But for the THC oil which does induce highs and possible other effects, you need only text a doctor's recommendation to the Cannabis nurse. Any MD at all will suffice. Even your garden variety family doctor, even one who has never met your child. Anybody who'll oblige you! (Provided, of course, that you already have a license for CBD oil.)

And thus, within 48 hours of watching that CNN segment, we had ourselves a bottle of THC along with these precise phone  instructions from the nurse:

• Start with one drop.
• Watch for reactions. 
• Raise the dosage as required. 

I kid you not.

I haven't given C. any yet, but am very eager to. The family profiled on the CNN clip, whose child appeared to be as severely epileptic and CP-disabled as C. is, said they use it only on "bad days". So I'm eagerly awaiting a "bad day" that isn't caused by C.'s periodic neurological fevers which we zap with a couple of Advils. I'll keep you posted.

And how about this? Our Ministry of Education will be granting its most prestigious annual award in 2016 to a man who founded one of our largest closed institutions for children and young adults with severe disabilities.  I feel as though we are locked in a time machine hurtling back to the Middle Ages.

Facing the dreaded milestone - and a new pair of earrings

A new pair of earrings

For years I've parried "So what will you do with C. when she's 21?" with my head-in-the-sand answer: "I'm overwhelmed by just pondering tomorrow."

But the social worker at C.'s school hasn't allowed the Hubby and me to play ostriches anymore. Gently but insistently, she has gotten us to face the bleak reality that looms.

C. has six months left of subsidized "education". Afterwards, the government does a pretty thorough hand-washing of her. Technically, it offers C alternative "frameworks", a.k.a. "clubs" in local parlance. There are three such options in our city and, accompanied by the social worker and a couple of other parents, the Hubby has visited two of those.

We didn't expect anything short of abysmal and we weren't disappointed.

In one of the frameworks, there was one staff member assigned to 12 - TWELVE! - people with severe disabilities.

In the other framework, the staff/charges ratio was slightly better. But there were no properly trained employees, and less than a handful of the people being cared for were in C.'s condition. All of the others could walk, talk and even do some productive, if monotonous, work. C. would spend her time un-stimulated in her wheelchair.

The one setting we haven't checked out - but will soon - doesn't promise anything different.

So, with no acceptable solutions on offer we've begun fantasizing about organizing home care for C. We envisage a steady stream of top-notch therapists arriving at our door to propel her forward. In addition, we'd have somebody to tend to her physical needs for several hours a day to enable me to have a life too.

Needless to say, this scenario would demand a huge expenditure. The government discourages this sort of solution by providing minimal financial assistance to parents of adults with severe disabilities. Its fists only open - and very wide - when parents opt for institutionalization. As I've raged on often, in this country, institutions for people with disabilities enjoy favored status.

There is a chance that our our financial straits will be remedied in the near future by a windfall about which I can't elaborate. If it does, our pipe dream stands to  materialize. I'll keep you posted.

In the meantime, this week's investment in C. was these new earrings (photo above). They're barely visible but at least they don't get caught on her clothing, get ripped off or exasperate her teacher and aides. 

Rosemary redux

I suppose the tragedy of Rosemary Kennedy is still haunting me. I couldn't resist listening to her biographer, Kate Clifford Larson, interviewed  on a New York Times podcast.

Until this book, Rosemary had only been a peripheral character in every other Kennedy biography. In this interview, Larson relates many details omitted from the book review I blogged about.

For instance...

She describes various "treatments" that the cognitively-impaired Rosemary endured such as weekly hormone injections and strict weight reduction diets to remedy her "laziness". Of course, nothing was as cruel as the botched lobotomy which left her severely disabled. Larson says that, notwithstanding its dire consequences, Joe subsequently told the nuns caring for Rosemary that "her institutionalization was the answer to his and Rose's prayers."

Most of Rosemary's siblings did not see her again until the late sixties - over twenty years later - because that was their parents' express wish.

There are more disturbing revelations if you feel you can handle them, here.

These two photos - one pre-lobotomy, above, the second post - probably convey the tragedy as vividly as any words could.

Rosemary Kennedy with sister Eunice Kennedy Shriver (right) at
a Kennedy family reunion

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.