Life with the SCN2A mutation

Image Source: Extracted from
this brochure

We had barely adjusted to the new reality of a firm diagnosis for our daughter Haya when the "awareness day" of her syndrome popped up.

February 24th was SCN2A International Awareness Day. I suppose its general significance lies in increased fundraising efforts which will enable new research successes. There still seems to be precious little knowledge about how to treat this horrible condition.

Note: I've seen it called "a catastrophic life-altering diagnosis" and I couldn't agree more.

Haya's refractory epilepsy continues to oppress her and us just as it has since it began 23 years ago.

But having a name for Haya's symptoms has nonetheless brought changes, albeit marginal.

For one, I have less hope that she will ever improve, even minimally.

I mean, for now there's no way to fight those mutated genes inhabiting her body. Perhaps one day medicine will discover some gene- altering treatment. But nobody is talking about anything like that at this stage.

There is, however, a thin silver lining, namely the relief we feel about our other children's genes.

While every one of their previous pregnancies filled me with anxiety, even dread, I'm now a tad more relaxed and stick to the standard pregnancy concerns.

We are still at a loss as to which new drug to try out in our quest for a modicum of relief from Haya's seizures.

The neurologist we thought would help us has gone AWOL and while she is very senior and experienced, she conceded that she has no other SCN2A patients.

Despite a concerted effort, we have failed to locate any parents of SCN2A children here in Israel who might be able to suggest a local doctor familiar with this mutation.

So, if you are in that category or know someone who is, please contact me here or at frimet.roth@gmail.com

Meanwhile, Haya now works with two switches (see image on the right). She decides which hand to use.

A big step forward for her.

Headphone happiness

Chaya and her headset

We have begun using headphones for Chaya, playing music for a few hours each day.

Listening, particularly to music, through that medium has been shown [here] to enhance concentration and pleasure.

But I just found this warning ["How Can Prolonged Use Of Earphones Or Headphones Impact Your Ears?"] about headphone use. So proceed with caution.

The OT also advised placing only one side of the headphone on Chaya's ear while we speak to her or engage her in some activity. That too will increase concentration, she said.

Am I asking too much?

I explain about this photo below

I've been learning about my fantasy adult day program. Turns out, it's a reality in Los Angeles for young adults like my daughter Chaya. 

I'm happy for my blogger-friend Elizabeth whose daughter Sophie was admitted to the program after a years-long wait. But reading about it also makes me apoplectic. 

I mean, why don't we have something even remotely similar here?

Back in 2016, when our Chaya was about to age out of the Israeli school system, we found there were three day-programs on offer and we naturally wanted to check them out. My husband and I visited one of them together. He checked out a second one on his own. We were the told the third was similar to the one he saw alone. 

The words that best described them all? Beneath all contempt.

Naturally, we opted to keep Chaya at home instead. 

But while we knew that those programs were unsatisfactory, we really didn't have a clear idea of what such a program could and should offer. Now, after reading about the one in LA that Sophie attends, we do. 

But before I share those details, here's my reaction (written at the time) to the one operated by Elwyn in Jerusalem.

I dutifully submitted to a tour of a day center for adults with disabilities. It's the one that seemed to be the least of the three evils available to our daughter, Chaya. The social worker at her school escorted us and my husband drove us since I had just had cataract surgery. It was his second visit to the place and he had earlier conveyed to me in no uncertain terms its awfulness. But I was aiming to view this place with an open mind.

Despite serious efforts to do that, I was shocked both by what we saw and what we were told by management.

We were brought to a small room filled with eight people sprawled out on thin mats on the floor - young women of approximately our daughter's size and age, side by side with apparently-middle-aged men. Two aides were on duty in the room. That's two individuals to change the diapers and clothing, escort to the toilet whoever is capable, and feed two meals to eight entirely-dependent individuals.

It would be a challenge even for two highly trained employees. 

But these aides by no stretch of the imagination fit that description. So it was unlikely that they would find the time, energy or desire to do what we were assured they do in addition to the above tasks, namely to exercise their charges throughout the day according to instruction they received from the physiotherapist.

It's understandable that the director told us that tall tale: because she also confessed that there are only two staff physio-therapists for the entire center who give each charge a half hour of therapy per week! 

When I noted what a shame it is that her center is so under-financed and how wonderful it would be if the government subsidized it as generously as it does closed institutions, she said: "It wouldn't help. Because it isn't a question of finances. There's just a dearth of therapists willing to work with people as disabled as these."

I suggested a generous salary would entice more applicants but made no headway.

In any case, on both this and my husband's previous visit, at approximately 11:30 am  everyone in the room was lying down on thin mattresses placed on the floor. It was mid-morning. This time, there was a row of lit candles in the aisle which, we were told, had been placed there for the "yoga session". I tried to envision - but couldn't - people with disabilities like my daughter doing yoga.

On our way out of the room, and ignoring my husband's suggestion, I snapped a photo of the class. A second after we left it, one of the aides summoned the director back in and complained about the photo. I was promptly rebuked for invading the privacy of the people cared for there. I showed the director my photo which features no faces. She was appeased, didn't demand a delete and reassured the aide.

I was then rebuked by my husband and by the school social worker, both of whom felt I had betrayed the hospitality of the director who would now be suspicious of my intentions and would fear my going to the media to report on the visit.

While I apologized to everybody, I believe the photo was actually warranted. The day centers are a government-funded service. Why bar a visitor's recording of what's happening behind their closed doors? After all, the charges cared for there are incapable of communicating. And oral testimony alone isn't worth very much; it's so easily denied. With faces absent or blurred, where's the crime in a photograph?

So that's what happened two years ago. Now back to the present.

In LA, the program tailor-trains personal aides for each participant and invites home-caregivers to join in their preparation. Participants who are capable can engage in community work. Those who aren't, enjoy outings to museums, parks, beaches on public transportation. They also receive myriad therapy sessions and, of course, interact meaningfully with their aides and friends.

Need I say more?

One added detail: it's publicly funded. Now, before you admonish me for comparing the fiscal situation of LA with that of Jerusalem, please remember: our government's coffers are wide open for the care of people with my Chaya's degree of extreme disabilities and who are institutionalized. It funds the Aleh chain where their marketing materials speak of a monthly expense of many thousands of shekels per resident per month, much of it funded by the government. 

And what's the option for Chaya and her ex-classmates whose families want them to live at home? Day programs like Elwyn's.

Silver-lining playbook

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 my daughter Chaya 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 Chaya'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 my Chaya doesn't pose such problems for us, regardless of the steep price we pay for her "good behavior".

Here (above) is Chaya at the beach during our extended-family beach getaway this past weekend. One of her nieces is with her.

Mea culpa

Proteus Mirabilis

I'm still busy wiping the egg off my face. 

For a while, I've been blogging here about my daughter Chaya's neurological fevers and their increasing frequency and severity. 

We even consulted with the neurologist about it last week. But for certainty's sake, we brought her to the pediatrician on Wednesday for a clinical exam.

No other symptoms surfaced, but our thorough prize of a doctor sent us for blood and urine tests. Afterwards, he said, it would be safe to presume she's really got rising neurological fevers. 

On Thursday after the visiting nurse took blood, her fever spiked to 40.2 Celsius. So despite the complication of it, my husband rushed our child to the local health fund clinic where the nurse took urine via a catheter. (The visiting nurse declines to do that with female patients and we were going to postpone it to a more convenient day).

It was immediately clear that she has a urinary tract infection. So within an hour, we had already started her on Cefuroxime, an antibiotic.

Since then, her fever has been steadily dropping. It's back to her usual slightly-elevated readings with an amazing, fluky 36.8 C thrown in last night! I can't remember her ever having a reading that low. 

Her pediatrician surmises that this infection has been simmering (and Chaya silently suffering, of course) for a while.

Today the urine culture results arrived: Proteus mirabilis. It's actually quite a work of art (see above).

As for the moral of this story, I'm sure it's obvious: Never presume anything about our complicated children who can't convey to us what they're feeling

Boasting about seclusion

Source

This obviously doesn't compare with the death at Aleh Jerusalem in 2000 of a young woman who had been left unsupervised after her meal and aspirated her food [link]. Nevertheless, the isolation and exclusion suffered by the children and young adults warehoused in Aleh institutions is also unforgivable.

Few supporters of Aleh realize that though.

That's evidently why Aleh's PR team saw no harm in publicizing that fact. In a December 26, 2016 release describing a recent train ride organized for several Aleh residents it actually conceded: 

"For most of us, traveling by train is a routine activity. Not so for the residents of ALEH Negev-Nahalat Eran, who recently went on the first train ride of their lives – a very exciting experience... During the train ride, the residents and staff sang songs and gazed, as if hypnotized, at the amazing Negev landscape passing by their windows." [Source:"First Train Ride for Residents of Aleh Negev-Nahalat Eran"]

You'd think they would hide the fact that these citizens with disabilities never get to travel away from their "prison", never see the surrounding landscape, never ride in public transportation although they are perfectly capable of doing so - as this piece and its accompanying photos make clear. Instead, their isolation is proudly broadcasted.

Aleh has cleverly surrounded its large, closed facilities with other enterprises to camouflage them. Thus out-patient therapy centers operate alongside three of the residential institutions.

This week, Aleh announced - with its predictable fanfare and parade of politicians - the construction of a rehabilitation hospital at its Aleh Negev branch. The project will further entrench the institution that warehouses "more than 200 children" with disabilities. It will further shield Aleh from criticisms about the colossal government funding that it enjoys. It will further stymie the push for new legislation granting "assistance baskets" to people with disabilities who live with their families.

Our quest for a suitable home care arrangement for our daughter Chaya is dragging on. It has involved meeting numerous social workers from personnel agencies. Several of them have remarked that our situation is unique because in Israel most children like Chaya simply do not live with their families! The system makes that option unfeasible because it wants these children warehoused in places like Aleh.

So our fight continues.

Thinking of Canada

Chaya was rushed to hospital by ambulance this week
[Illustrative image from Shaarei Zedek's website]

We have been weathering an overwhelmingly difficult period with our youngest child, Chaya.

Then, just to stir things up a bit, my heart decided to "break" on me: I was hospitalized with Broken Heart Syndrome, a.k.a. Takotsubo Syndrome a.k.a. Stress Cardiomyopathy.

But after I’d returned home, thank G-d on the mend, Chaya decided to spice things up again with uncontrolled seizures rendering her unable to swallow either food or water. My husband rushed with her by ambulance to the ER. Throughout the 24 hours that Chaya spent in the aisles of the ER, my husband sat glued to a chair beside her.

After receiving IV fluids, she was launched on two new meds which we hope will improve her seizure and liver problems – Keppra and Prednisone. Perhaps they’ll also enable her to retrieve those minimal skills she’d acquired over many years – feeding herself and walking with assistance – which have entirely evaporated in the past week.

Our quest for some help at home is dragging on so we are still caring for Chaya ourselves while I try to sandwich in a bit of  recovery from my unexpected coronary event. “The system” (i.e. Ministry of Welfare and National Insturance) washes its hands of parents who opt to keep their children at home despite disability and illness (as I described in "Aleh 101" a year ago). “How dare you reject institutions like Aleh!” is basically the message.

Thus it was with particular disappointment that I encountered yet another PR plug for Aleh's chain of institutions. Dated December 23, 2016, it appeared in the local daily, Yisrael Hayom, a known mouthpiece for Prime Minister Netanyahu. Purportedly penned by a Canadian pediatrician, Dr. Lynn Hierlihy, it spouted the customary Aleh hype. But because it was a medical professional this time advocating the institutionalization of our most needy children, I was especially incensed.

Her blog post [here] first sang the praises of volunteering:

Volunteers are critical partners in the growth and development of society... And while these individuals are no doubt selfless, they will often admit to a single "selfish" motive: Volunteering makes them feel incredible. Numerous scientific studies have proved that volunteering reduces stress and improves physical and mental health.

She elaborated on the topic and I have no gripes about that. True, I have rarely found volunteers very helpful in caring for Chaya and much prefer professional input for people with profound disabilities. But, fair enough, she made an innocent point.

Afterwards, though, she segued to a florid profile of Aleh. I would have expected a pediatrician to appreciate the crucial role that a family and its love play in a child’s healthy development. And I mean all children – including those with disabilities. But apparently this one doesn’t.  To hear one instead extolling the virtues of closed institutions is baffling.

Here is her paean to Aleh:

Needless to say, our visit to ALEH Negev-Nahalat Eran was magical. Never before had I seen a rehabilitation or long-term care facility that so clearly exemplified how "the world is built on loving kindness." I fell in love with the children and their dedicated caretakers, and I embarked on a mission to raise awareness about ALEH upon my return home. I now do everything in my power to connect our community in Canada to the ALEH family. When my son celebrated his bar mitzvah, he requested that guests make donations to ALEH in lieu of gifts. Our synagogue has established an ongoing relationship with the organization, which I coordinate, to ensure that we continually give back to our newfound Israeli family in any way we can. And I take every opportunity to visit ALEH and lend a hand.

Dr. Hierlihy’s blog post is particularly confusing coming as it does from an Ontarian. Canada deinstitutionalized its care for people with disabilities several years ago. In the Spring 2009 (Vol. 28, No. 1) edition of  the Canadian Journal of Community Mental Health [here], we read that:

Ontario has recently closed its last 3 institutions for persons with developmental disabilities. Very little research has been conducted on Canadian deinstitutionalization projects, and the impacts and bona fides of such endeavours have not been well documented in Canada. However, the closing of institutions has occurred in most Western jurisdictions and has been the subject of much research in Australia, the United Kingdom, and the United States. Although community services are of variable quality, this literature review suggests that the Ontario plan to close institutional facilities in favour of community-based residential services will be of general benefit to former institutional residents.

That CJCMH article concluded that

Very simply, the institution cannot replace the community in providing individuals—including those with developmental and serious psychiatric disabilities—with the opportunities for the good life. There are no compelling client-related arguments left for keeping people with cognitive limitations, and possibly people with psychiatric disabilities, away from their families and communities.

Don’t Israelis with disabilities deserve the same compassion, the same dignity, the same loving care within their family and community as do Canadians, Dr. Hierlihy?

Dealing with a new diagnosis

Here at home, Chaya received a new diagnosis this week from the gastro doctor: Autoimmune Hepatitis. He told us its cause is unknown and it is almost unheard of in patients as young as Chaya.

So while she is no longer on Valproic Acid, it is unlikely that her liver will repair itself to any extent. On the contrary, as the doctor added, progression of the disease is the sole prognosis.

Her assisted walking with me has deteriorated dramatically in the past week and she looks gaunt now that excess fluid is being removed by diuretics.

All in all, Chaya is not in a good place.

Our new reality. Or: Don't do Depalept!

My daughter Chaya undergoing a battery of tests in hospital last week

Chaya endured several days in the hospital last week and, naturally, so did my husband and I (although he magnanimously volunteered to spend the nights there with zero-to-minimal sleep).

We brought her there after an ultrasound ordered by her pediatrician revealed the condition known as ascites. He'd been concerned by blood tests of the past five months which have consistently included several anomalies including low protein levels.

In hospital, she was drained of 4 litres (that's no typo!) of fluid that had accumulated in her abdomen due to a damaged liver. Tests were done to learn what caused that damage. Theories entertained by our pediatrician along with the new gastro and neurologist, now on the case are:

• The anti-epileptic, valproic acid, known in Israel as Depalept which Chaya has been on for some five years. (And see below for some up-to-minute news about that specific drug.)
• The genetic syndrome, Wilson's Disease (test results for this were all negative unfortunately)

The pediatric neurologist who first prescribed valproic acid and has been monitoring her since, basically dumped Chaya when we sent him the ultrasound results  Here's the email response we received:

"This is beyond the scope of my expertise. You need to talk to your family physician ASAP"

When we also asked that same neurologist whether he had submitted the request to the Ministry of Health for an increase in Chaya's cannabis allotment/month, as he had promised to do a month ago, he wrote us:

"I would stop the cannabis now. There is a problem with her liver and no one knows if this is the cause."

We haven't heard anything further from that MD. I'm still overcome with disillusionment - we thought he cared about Chaya.

And the unanimous view of the hospital staff is noteworthy:

Don't stop the cannabis. It is not the cause of her liver problems, they said  It's the valproic acid that's the likely culprit and she must be weaned off it asap.

Three days later, after receiving IV fluids and albumin, a visit from the hospital's wound specialist and a second one from the gastro specialist, Chaya was released.

She had suffered brand-new blisters/sores on her hands from the plastic tape the staff  used for the IV even though I warned them that she is intolerant of it. Her hand also swelled to three times its size when the IV malfunctioned. (that took two days to recede). And the gastro, though kind and sensitive about it, gave us a bleak prognosis: Chaya is now a chronic liver patient who will need fluid drainage every week or so.

So, what are the morals to be learned?

• First: Beware any abnormal blood test results when your child is on Depalept. Always delve further. Chaya had abnormal blood test results for several years but her neurologist reassured us that everything was fine. (Our pediatrician, on the other hand, was persistently concerned but politely yielded to the  prescribing neurologist's opinion.)
• Second: Try cannabis oil - both CBD and THC - to treat the epilepsy. While Chaya was being drained of the ascites, she began to seize repeatedly, racking up some 15 of them. The ultrasound technician who also inserted the drainage needle pressured me - actually badgered is more accurate - to give Chaya some sort of drug to stop them. Instead, I waited for my husband to bring our THC oil from home. In the past it has halted such attacks and, once again, thank G-d, it worked its magic.

The same neurologist who just dumped us was appalled when we informed him several months ago that we'd easily gotten THC from our government-licensed cannabis supplier and were using it on rare occasions.

"You should have checked first with me. There are no studies results to prove THC to be effective against epilepsy. Only CBD oil." (The reason is that no THC studies have ever been carried out.) 

Our personal experiences with the stuff didn't interest him in the slightest.

And while we grapple with this new reality - a child who is both profoundly disabled and now chronically ill - we learn of yet another new term and concept that  Aleh has concocted to keep government and private donor funding flowing in to its coffers. They've dubbed it the "High Dependency Wing".

It is a puzzling concept. After all, for decades Aleh has been advertising its product as aimed at children with severe disabilities. Naturally, that translates as  "highly dependent". Yet now, suddenly, they announce the planned construction of its first separate wing with that label.

Wasn't the entire enterprise already "High Dependency"?

Here is the way Aleh's PR team touts it:

In Israel today, children and young adults with complex medical conditions requiring advanced nursing care are often hospitalised long term or placed in old-age homes, due to the lack of a better solution within a safe medical environment. These settings offer little or no opportunities for rehabilitation, education, social activity, or the warmth and love of a home. Being confined in this way drastically inhibits the children’s development, and is an agonising and painful option for parents and families.
The solution is to establish high-dependency wards within a rehabilitative environment so that children with complex disabilities and medical conditions can live a more enriching life.

Yikes!  When will our government and society get it: An institution is not a home! A ward is not a home! The services of a paid staff do not constitute "warmth and love".

Now back to the valproic acid update I mentioned above. Minutes before this post "went to press", I was alerted by a MedpageToday email bulletin to a Reuters report [here] dated November 16, 2016 that France has just created a compensation fund for valproic acid victims.

The French parliament voted to create a nationwide compensation fund and amended the 2017 budget bill late on Tuesday to set aside an initial 10 million euros ($10.7 million) for claims relating to Depakine, a brand name for valproate, which is also used to treat bipolar disorder. Parents of those affected say the French state and Sanofi were too slow to warn of the side effects of the drug, which has been used to successfully treat epilepsy since 1967, after the risks to fetuses became clear by the early 1980s... "The 10 million euros are a starting point," Health Minister Marisol Touraine told lawmakers in the lower house of parliament. "In future years, the sums should be much higher." Touraine told parliament later on Wednesday that compensation would ultimately be paid by "those deemed responsible" without giving details. "I regret that Sanofi didn't seek an amicable settlement as a matter of principle. I hope (Sanofi) will change its position," she said... French social affairs inspection agency IGAS estimated earlier this year that between 2006 - when the medicine started carrying a health warning - and 2014 - when prescription rules were further tightened - some 425 to 450 babies suffered congenital birth defects or were still-born due to the drug... ["France sets up fund for Sanofi epilepsy drug victims", Reuters, November 16, 2016]

And that's without factoring in hepatotoxicity (i.e. drug-induced liver injury, acute or chronic ) which is included in the drug's black box warning and which is now making Chaya's life even more of a misery than it already was.

We will undoubtedly be returning to the hospital either tomorrow or Sunday to drain Chaya's fresh accumulation of fluid. Stay tuned for a tally of litres removed this time.

Salute the superhumans

Itzhak Mamistvalov [Image Source]

I realize that, given the profundity of my daughter Chaya's disabilities, the Paralympics should be totally irrelevant to me.

But, somehow, I  am always thrilled by the feats of people with disabilities of any sort. Unfortunately, I've found that the dearth of local media attention accorded the event in the past isn't very different this year. A fact which shouldn't surprise us. It's in keeping with this society's general view of people with disabilities which I (tiresomely?) harp on here.

Nevertheless, it is noteworthy and disappointing.

Since I was awake in the wee morning hours anyway re-bandaging Chaya's horrific pressure sores, I watched the live coverage of the Paralympic's opening ceremony on Israel Television, feeling as though I must have been among a handful viewing it.

One of the Israeli commentators complained about the meager airport send-off the Israeli delegation of Paralympic athletes had received. Another focused on the financial straits that beset those athletes. It's an across-the-board picture of neglect and uninterest in our citizens with disabilities.

An impressive website profiling all the American Paralympians was also mentioned. Unfortunately, neither that site nor the official Paralympics site offering live video coverage seem to be accessible in Israel. (Why??)

The stories of indomitable bravery and tenacity that characterize Paralympic athletes around the world are compelling.

Tatyana McFadden leads the way at the London 2012 Paralympics
[Image Source]

Take, for instance Israeli Itzhak Mamistvalov who was born with cerebral palsy, and swims competitively using only his right hand. In 2004, he won two gold medals and one silver and set two Paralympic records. In 2012, he won a bronze medal.

Then there is the American, Tatyana McFadden, 27 who was

born with spina bifida and adopted from a Russian orphanage, [and] is paralyzed from the waist down. [Her sister] Hannah McFadden, 20, adopted from Albania, born without a femur in her left leg, is an above-the-knee amputee. She uses a prosthesis to walk and a wheelchair to race. [New York Times, September 1, 2016]

Both will compete in Rio, and Tatyana is likely to win gold several times over as she is the world-record holder in the 100, 400, 800, 1,500 and 5,000 meters.

Brazilian Olympics boss Carlos Nuzman praised the athletes at the gala opening ceremony thus: “You are superhumans.”

Not at all hyperbolic, I'm sure you'll all agree.

Are words worth the effort?

My daughter at home

I've stopped counting how many people have asked me whether we'll be sending our Chaya to Aleh, now that she is barred from the school system. I know that I needed both hands to count those well-intentioned folks. But it means many of them deem it at least reasonable and perhaps even laudable to kick our child out of her home and send her far away from her loving family.

Why do so many Israelis feel that way?

This week we raised that question with an expert in the field of alternative living options for people with disabilities. She designs projects of inclusion for people with disabilities and then presents them to the Israeli government to be considered for funding. She agreed that the Israeli mindset is backward in this realm. She warned that the status quo isn't likely to change in the near future: "Ten years from now, you'll be precisely the same activists you are today". And that only enormous, persistent efforts will effect meaningful change.

She told us how surprised she was to observe children with disabilities in depressed neighborhoods in a recent visit to the Philippines. Ironically, because of poverty and the resultant dearth of separate programs for children with disabilities, such children live amidst their families and neighbors who accept and include them seamlessly.

She related an exchange she'd had with one mother who refused to allow doctors to perform cataract surgery on her son with severe disabilities because of the risk posed by the general anesthetic he would need. "I just couldn't bear to lose him", she explained.

Why then, I asked, in our far more advanced, enlightened and affluent society, do parents willingly abandon their children to strangers?

We were all, including the expert in the room, stumped.

But rather than harp on that conundrum, she is by-passing negative public opinion and forging ahead to win funding for her relatively un-publicized programs. They will ensconce people with severe disabilities either with their families or in small group-homes in the midst of the general community.

She is convinced that parents will only consider such Aleh-alternatives for their children if they see with their own eyes that it is possible.

I, on the other hand, believe that reading about those alternatives - far more feasible for most parents than actually seeing it - can win their hearts and minds too. Prose is potent.

Moreover, the plethora of self-promotion that the Aleh network of large, closed institutions spews remains unchallenged. This  lack of counter-publicity is harmful. It entrenches the isolation, discrimination and exclusion that are the plight of people with severe disabilities in Israel.

The woman we met with promised us that she would present our Chaya as a candidate for a pilot project which would fund her therapies and care at home. We are anxiously awaiting word as to whether she's been accepted.

Al-chet

The picture: Explanation below

At the insistence of my husband and the social worker at my daughter's school, I visited a Jerusalem day center for adults with severe disabilities recently. It's  one of three such options for that population in this city.

I had already debriefed my husband after he toured the center several weeks ago  The social worker came along as did my husband who drove us since it was just shortly after my cataract surgery. It was his second visit to the place and he had already conveyed to me in no uncertain terms the extent of its awfulness. But the idea was for me to forget all that and assess it with an open mind.

My concerted  efforts to do that were to no avail and I was, to put it delicately, shocked.  Both by what we saw and what we were told by the director.

The small room we were shown was filled with eight people lying on thin mats - women around Chaya's size and age alongside middle-aged men.

Two aides were on duty - changing the diapers and clothing, escorting to the toilet whoever is capable, and feeding two meals per day to eight entirely-dependent individuals for eight hours.

Needless to say, that is a  totally consuming burden even for skilled employees. And these aides didn't come close to that description. There was no doubt that not even on their best day could they find the time, energy or desire to do what the director maintained they do i.e. to exercise the people in their care as instructed by the physiotherapist.

Now I fully understand why the director told us that "truthful hyperbole" (to borrow a phrase from Tump's book, The Art of the Deal): Because there are only two physiotherapists for the entire center who give each person a half hour of therapy per week!

When I commiserated that her center is so budget-strapped and wouldn't it be wonderful if it were funded as generously as institutions are, she said: "It wouldn't help. Because it isn't a question of finances. There's just a dearth of therapists willing to work with people as disabled as these."

I argued that a generous salary would undoubtedly entice more applicants.

She disagreed. "They don't even ask about salary; just run the other way when they hear with whom they'll be working."

In any case, on both this and my husband's previous visit, the charges were sprawled  on those mattresses at 11:30am!.

And now to explain my על חטא:

On our way out of the room and contrary to my husband's explicit urgings not to, I snapped one photo of the class. After one of the aides  summoned her back into the room and "dobbed me in", the director rebuked me for invading  the privacy of the people in the photo. But when I showed it to her, she didn't demand a delete, agreed it was innocuous and in turn assuaged the aide.

I was then scolded by my husband and by the social worker who both maintained that I had, in effect, been magnanimously invited into somebody's home and had betrayed their hospitality. The director, they said, would now be suspicious that I had visited with the intention of reporting on the visit.

I apologized to everybody but nevertheless offered this contrary take:

The day centers are a service offered by our government. So why bar potential consumers from recording what's happening behind the center's closed doors? After all, the charges cared for there are incapable of relating their experiences. And our oral testimony isn't worth very much. It's so easily denied. With faces absent or blurred, where's the crime in a photograph?

Readers, please weigh in. I'd love to hear what you think.

Rocky

Chaya's end of year celebration

We "celebrated" Chaya's graduation from her last year of school. Ever. (See snapshot on the right.) Our state now throws her to the wolves.

We have the choice of kicking her out of her home and plonking her in an institution - Aleh is the one that every professional we've encountered mentions as an option.

Otherwise, she is eligible to attend one of three "day centers" in Jerusalem. My husband visited two of them (the best of the three) and we can't consider those realistic options. People with profound disabilities are provided  nothing beyond very basic care by a staff of 2:10 students. Any therapies that will be offered - and some do not offer any - will be fewer than at her current school where they are 30 minutes per week per therapy. The math is disheartening.

Care to join our fight?

The Kupah (medical insurance fund) we're in offers Chaya 7-12 sessions of physiotherapy. That's per YEAR. Oh, and we forfeit that "gift" if we enroll her in one of the day centers.

Undoubtedly a grim picture. We are keen to petition the High Court for provision of the same services at home as Chaya would receive were she institutionalized. Bizchut assured me that if I could locate another four families to join our petition they would consider shouldering the cost of such an initiative.

Is there is anybody among you, readers, who has a child over the age of 21 with severe disabilities living at home? If so, do you feel entitled to therapies and care -assistance from the government? If you are up for the fight, please contact me.

And on a more upbeat note, my son forwarded this moving Washington Post photo essay of adults with developmental delays who are involved in romantic relationships.

Several years ago I wrote two articles about a Jerusalem couple with Down Syndrome who married, one before the wedding and the second, two years into their marriage. They're here and here. (Note: I used pseudonyms in the pre-marriage article.)

Groping in the dark

Here we are, Chaya 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 movement is welcome. But sometimes even that eludes us, as you see here.

Chaya and her sounds board - May 2016 via Vimeo.

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

The OTs at Chaya's school are in the same predicament. They may very well succeed with the less severely impaired children. But when confronted with Chaya and those like her, they seem to be 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. My husband and I once hired such a team for an hour at great expense. Chaya'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 Aleh, to children with disabilities who live at home, this problem would vanish. And Chaya might actually press the buttons on her toy board.

It's that simple.

The Israel Prize: More about the strange choice of recipient

My daughter Chaya's first portrait as
a 21 year old: April 27 was her birthday

“What a strange world we live in... said Alice to the Queen of hearts”

* * *

Life in Israel these days is reminiscent of Alice's Wonderland

Since the Ministry of Education named him as a recipient of the 2016 Israel Prize, Doron Almog has been repeatedly interviewed on television and in the print media. This has afforded us all the chance to hear at length from him about his passion for the institutionalization of children with disabilities.

Almog does an exemplary job of rationalizing his life's mission. Speaking with pathos and interspersed with personal, heart-wrenching anecdotes, he makes a convincing case for the argument that closed institutions for our citizens with disabilities are the ideal care solution.

Not that he appears aware that there is an argument about it at all. The option of keeping these children with their families and  in our communities does not seem to occur to him.

In every interview, Almog's late, non-verbal son Eran "speaks" to him. Almog has him urging his father to act on his behalf as well as that of his fellow children with disabilities. We are then led to believe that sending his 13 year old son away to live in Aleh Negev fulfills that "request".

We are told that after fifteen minutes of Almog plugging his "dream" of a new institution in  Ofakim, that city's then-mayor asks "Is this intended for the retarded?" When Almog tells him that it is indeed, the mayor refuses because "It will devalue our real estate and the neighbors will complain".

So Almog opts for the middle of the desert where the mayor of Merhavim, Avner Mori, happily hands him one hundred dunams of land.

Throughout the video of this interview, we see footage of Almog cuddling and caressing children at Aleh Negev. It is abundantly clear that many of them are far from profoundly impaired. In fact, some simply have Downs Syndrome!  I know parents who adopted children with Downs and raised them with love and devotion.

Has the Ministry of Education ever considered those parents for the Israel Prize?

To be continued: more revelations from the Almog interviews.