Waiting for sundown

My daughter Haya awaits the start of Yom Kippur 5783.

To everyone from all of us. May this be a year of good health and joy, a targeted treatment for SCN2A, and the advent of de-institutionalization and in-community living for all citizens!

(I prepared this for posting on Tuesday, the eve of Yom Kippur, but didn't manage to do so before sundown.)

The nightmare of dreaming about Malki

Tamimi

For many years after her murder, I rarely dreamed about Malki. 

But lately I do so more often. In the dreams, she returns to us and we welcome her, overjoyed and unquestioning, The gnawing realization that she will re-depart imminently somehow doesn't ruin the reunion. 

We hug her, kiss her, chat and laugh as if tragedy never befell us.

Waking up after those dreams is almost as devastating as it was to first learn of her death.

Facebook ought to be reminded of the heartbreak that the families of the Sbarro victims still endure. That's because, inexplicably, Facebook has been actively disseminating the incitement spewed by Malki's murderer, Ahlam Tamimi.

Her words encouraging terrorist murder were posted [video] to mark the anniversary of the 9/11 tragedies. The Facebook page affording her that platform [link] has remained untouched until now despite our exhortations to Facebook management to remove it.

Tamimi devotes most of her post to bemoaning the diminished status of Palestinian prisoners i,e. terrorist murderers.

She relates that in the past the release of prisoners from their Israeli jail cells would have triggered meaningful festivities. Today all that happens is a few family members come and greet the prisoner at the nearest Israeli checkpoint. No ceremonies, no community involvement.

My daughter Malki הי"ד

Another sign of those murderers' fall from grace, she says, is that families are more reluctant for their daughters to marry released prisoners.

Tamimi sees this decline in ardor and prestige as influencing the media as well. If the public no longer care as much about the prisoner issue, she asserts, the media see less need to give it coverage.

It's not difficult to discern a touch of self pity here. Tamimi may be yearning for the days when she was welcomed by crowds of adoring fans, awarded prizes and named by the students of Jordan Media Institute, a school of journalism, as their "success model".

But, unfortunately for us, the most important recognition for Tamimi - that of Jordan's King Abdullah II - remains unaltered. He persists in defying the US Department of Justice's request for her extradition. He steadfastly denies the validity of the Treaty of Extradition signed by Jordan and the US in 1995, a treaty officially recognized as valid by the US State Department.

Despite Abdullah's brazen defiance of the US, he continues to enjoy the verbal and financial support of the US government and the unabashed adulation of a long list of Congressmen.

Presumably, Facebook has observed that attitude and has consequently been complacent about Tamimi's use of its platform to encourage terror.

With the Jewish Day of Judgment behind us and Yom Kippur, the Day of Atonement, nearly upon us, let's remember this unrepentant mass murderer who deserves no forgiveness - only cold, hard justice. Justice that she has escaped since 2011 when she was freed from Israeli prison and returned to her homeland and family. 

Justice that has eluded her victims' loved ones despite our relentless efforts to galvanize the public.

Making it a round dozen

Last week, we tried out a new neurologist, one who specializes in epilepsy, aka an epileptologist. This brings our tally to roughly a dozen since, when she was three months old, we discovered that Chaya was neurologically impaired.

In the hospital waiting area

Here (right) is Chaya at the hospital while we wait to be admitted to the new doctor's office. 

We had to pay out-of-pocket because the earliest appointment with her that we were offered in the public clinic was April 2019! At a time like this, our system feels like "public medicine" only nominally. We are forced into the private domain too often.

This epileptologist gave us an hour and a half during which we covered Chaya's history, symptoms and functioning. 

Afterward the doctor conveyed her thoughts and recommendations. This probably sounds rather routine but, trust me, in our experience, it's a rarity. We really felt that we got our money's worth.

Of course, that's not to say we left her office uplifted. There was much for us to digest and ponder. So here goes.

Med changes

First, she recommended raising one of the two anti-epileptics Chaya's on, Vimpat, by 50 mg/dose. I promptly did that the following night. After two weeks, we raise it in the morning as well. She said the current dose is considered low. Who knew? (And who knew that nabbing those 50mg pills of Vimpat would be so challenging. So, beware, they are in short supply and available only in a handful of Kupat Holim pharmacies).

She also advised doing a blood test to check the level of the second drug Chaya gets, Keppra. Her current dose of that drug - 1,500 mg. twice/day - is also deemed low. Again, news to us. Our previous neurologist either was unaware of that or just kept it a secret. 

In fact, at our last visit she had recommended adding a third anti-epileptic! Frisium! That's one of the benzodiazepams that rendered Chaya semi-comatose during her hospitalization back in November! (As the exclamation points indicate, I haven't yet recovered from that nightmare.)

By the way, that incompetent neurologist never bothered to answer our last email. In it, we mentioned, inter alia, that we had not added the third med, Frisium, as she had instructed us to do. I suppose she wasn't too pleased with that.

Back to the new neurologist...

Video EEG

We've never done one and she'd like us to. So some time in the coming weeks, Chaya will be hospitalized for 24 hours. Here's hoping we glean some helpful revelations. Our Kupah has already given us a hit'hayvut for it.

Chaya's frequent fevers

New neurologist wasn't impressed with the exclusion testing that C.'s pediatrician did. As I've written, he did a thorough clinical exam and blood test before concluding that the fevers Chaya's now getting - they max at 100.6 degrees Fahrenheit rectally - are not caused by an infection. Ergo, they must be central.

New neurologist said that those exams weren't enough to reach that conclusion. She said she's seen patients whose seizures are more numerous than Chaya's but who never get central fevers. She suspects there could be some underlying condition, perhaps related to her life-long thinness, triggering the fevers. She said the pediatrician should have referred us to a specialist - she couldn't specify but tossed out endocrinologist and gastroentereologist as possibilities - who could run further tests. 

"Ouch", I thought when I heard that criticism of our ever-supportive, brilliant and kind pediatrician. But the following day, he read the new neurologist's summary with equanimity, then promptly gave us referrals for a couple more blood tests to tighten the "central fever" theory. He never ceases to amaze us.

VNS

New neurologist strongly urged having a new VNS implanted. The one Chaya sports now dates back to December 1999 and never helped her one iota. She advises trying it again. Of course, this time we'll have somebody better equipped to calibrate it afterwards. Back in the year 2000, there wasn't any such expert in this city. (I know, I know: so why did we implant it then anyway? That was just another of our many blunders.)

But removing this old one isn't easy, we've been told, because the wires are now overgrown with skin - or something along those lines. 

Also, the last neurologist to push a VNS replacement was the one who destroyed Chaya's liver with Valproic Acid and refused to own up to it. Negative associations.

Cannabis

I had braced myself for dismissiveness so I was relieved when new neurologist simply noted that Chaya's CBD dose is very high. Which would explain why the Health Ministry refused to renew our license for 11 bottles (= 100gm) per month. Our new one permits only 10 bottles/month.

She said Chaya's current dose would be more efficacious in the form of vapor which is absorbed far more quickly. I haven't gotten around to inquiring about the availability of this form at our supplier, Tikun Olam. My hunch is we'll need to switch to another supplier (the one that the doctor recommended); not a process I relish.

Hydro

Last week yielded a brief respite from frequent seizures and fevers during an extra long hydrotherapy session where Chaya truly rocked. Here she is:

Sadly, the therapy pool will be closed for the entire coming month. Wishing everybody a G'mar Hatimah Tova and an easy fast on Yom Kippur.

Happiness... and really hard decisions

The Feast of the Rejoicing of the Law at the Synagogue
in Livorno, Italy by Solomon Hart, 1850 (Jewish Museum) [Image Source]

As we stand on the cusp of the happiest holiday in the Jewish calendar, I thought it appropriate to share the Dvar Torah that I relate annually at our family table.

The joy of every other holiday in the Jewish calendar is tempered, each for its own distinctive reason.

• On the New Year, joy is not even mentioned in the Torah at all because of the angst we all experience over our impending judgments. 
• On Passover, aside from the first day, we don't even recite the Hallel in its entirety (as we do on Sukkot) because the rejoicing over our liberation from slavery is marred by the deaths of the Egyptians and G-d has warned us not to rejoice over the fall of our enemies. 
• On Shavuot, the Torah only mentions joy once because we are so concerned over the upcoming harvest which would traditionally determine our upcoming economic situation.

But on Sukkot, which follows just a few days after Yom Kippur, when we believe we have been forgiven and adjudged mercifully, we are urged three times to rejoice. Nevertheless, even on this happiest of all holidays, the word "אך" precedes one of the mentions of joy (in Hebrew: שמח).

The word "אך" is an adverb that limits or minimizes. So, the question is: why, even on this happiest holiday, isn't our joy limitless?

The answer given by the Yalkut Shimoni is that, as parents, we are incessantly wracked with worry over our children's welfare. It's just an inescapable aspect of life. Only in the world to come, when we believe that man will be immortal, will this consuming concern vanish.

To this observation I say: "so true".

But I would add that a parent who has buried a child fears for the welfare of his other children even more intensely than others.

Now parents have myriad ways of expressing that constant concern. One parent's assistance can be another's abuse. A treatment for children with severe disabilities demonstrates this divergence in parental attitudes: the attenuated growth treatment (AGT) commonly known as the Ashley Treatment after its most famous recipient.

I wrote about this twice a few years ago when it was a headliner. In the first post, I was supportive. In the second, downright condemnatory. Which, of course, proves not only how decision-challenged I can be but also what complex issues AGT involves.

Ashley [Image Source]

This week I stumbled across a NY Times article on the Ashley Treatment that appeared back in March 2016.

Both sides of the divide - parents who have administered the treatment and those who abhor it - share many core traits. They are all loving, devoted and self-sacrificing toward their children with severe disabilities. They are also committed to caring for their children at home, despite the challenges posed by their profound disabilities.

The distinction between the two camps is a fine but significant one: which measures are acceptable to enable you to keep your child at home? Are there actions which are beyond a red line?

If you're unfamiliar with the Ashley treatment - and disability activists argue that it isn't one at all because no illness is being treated - here is what doctors did to that girl, whose last name has never been released by her family. They administered the estrogen estradiol which effectively reduced her future predicted height by approximately 13 inches. Additionally, she underwent a hysterectomy to preclude the discomfort of painful menses as well as the uterine bleeding that high doses of estrogen can cause, and the removal of her breast nodules to prevent the growth of breasts.

For the treatment to be most effective a careful monitoring of calories was also required. The desired end result is, of course, a shorter, lighter child.

These same measures have been taken by many other parents who congregate at the website and private message board Pillowangel.org, maintained by Ashley’s parents who have never made their names public, identifying themselves only as “Ashley’s Mom” and “Ashley’s Dad,” or AM and AD. (Their site’s name comes from the endearment given to Ashley and other children like her who spend most of their hours propped up by pillows in bed.)

But then last summer, the Pediatric Endocrine Society published a survey of its members in the Archives of Diseases in Childhood indicating that at least 65 children have received the therapy. (The survey did not break down participants by sex or note whether they had hysterectomies or breast-bud removal.)

And by many doctors’ accounts, the demand for it is increasing even as doctors prefer not to talk about the practice publicly. “You might wonder if we’re getting underreporting,” says David Allen, a co-author of the survey and head of the endocrinology and diabetes department at University of Wisconsin American Family Children’s Hospital. “The survey response rate was only 30 percent. We have no good numbers at this point.”

For parents seeking to restrict the growth of a child, the prospect of being able to provide care at home for many years is a strong motivating factor. Yet despite the fact that three out of four people with intellectual and developmental disabilities live with a family member, the assumption that smaller people actually get better care at home — or in any setting, for that matter — is not supported by empirical evidence; no studies have correlated body size with quality of life. There are only the arguments of parents in opposing camps.

The pediatric bioethicist Nikki Kerruish, a senior lecturer at the University of Otago in New Zealand, has analyzed the perspectives of parents who support the therapy and those who oppose it. In the journal Cambridge Quarterly of Healthcare Ethics, she explains that the very definition of “quality of life” is disputed between the groups. Parents who object to curbing growth prioritize their child’s pleasure and comfort but never at the cost of higher-order concerns like bodily integrity and self-determination. They equate “growing” with “thriving.”

No amount of cognitive impairment justifies nonessential medical treatment; growth attenuation is always inappropriate. Conversely, parents who back growth attenuation tend to believe that maximizing pleasurable experiences and minimizing unpleasant ones is the best way to serve a child with extreme disabilities. If this can be achieved by caring for that child as if he or she were a young infant, then that is entirely appropriate.

One common response to critics of the AGT is "don't talk until you've walked in my shoes". Since my daughter Chaya is precisely the type of child for whom this "treatment" is designed, I feel entitled to sound off. That's just one of the (very few) perks of extreme parenting. Another one is that whenever we have had to bring Chaya to Bituach Leumi for a medical re-assessment of her disabilities, I don't sweat. I'm always 100% confident that she will be awarded 100% entitlement.

The number of US doctors who have been approached by parents to administer the treatment is on the rise. A recent survey of the Pediatric Endocrine Society, most of whose members are in the U.S., showed that 32 of 284 respondents have prescribed growth-stunting hormones to at least one disabled child. But my dogged online search didn't turn up even one instance of its use in Israel. If I just didn't persevere enough and you know of such a case please let me know.

I will be very glad to hear your views about this approach to raising a child with severe disabilities.

Institutionalization 101

Letchworth Village in Rockland County, New York closed its doors in 1996
Click for background [Image Source]

Some believe that the last word has been said about institutionalization. That while its evils in other countries have been publicized. That Israel is an exception. That its institutions are another breed, are laudable and deserve to be nurtured and supported.

So let me make it perfectly clear: Institutionalization of children and adults with disabilities is unequivocally evil - even here in Israel. Even a la Aleh!

The warehousing of people with disabilities has been and still is being halted everywhere else in the developed world. That same transition must be achieved in Israel. Now. 

Institutionalization in and of itself is now recognized by experts as the worst solution to the challenge of caring for people with severe disabilities.

Here is what a Columbia University lecturer and parent of a child with disabilities wrote after the August 2016 massacre [background here] of people with disabilities in Sagamihara, Japan. 

By warehousing people with disabilities, institutions send the message that they need to be segregated and managed. It becomes easy for their differences to be seen as a shameful and frightening secret that happens to other, less worthy people.

In truth, disability is an aspect of ordinary experience that touches all people and all families at some point in the cycle of life. As disability studies scholar Rosemarie Garland Thomson notes: “The fact is, most of us will move in and out of disability in our lifetimes, whether we do so through illness, an injury or merely the process of aging.”

By warehousing people with disabilities, institutions send the message that they need to be segregated and managed. It becomes easy for their differences to be seen as a shameful and frightening secret that happens to other, less worthy people....

James Trent, a professor of sociology and social work at Gordon College, in his 1994 book, “Inventing the Feeble Mind,” describes shifting attitudes toward and treatment of people with disabilities in America since the Colonial era. According to Trent, in the Colonial and early republican eras, “idiots” – as people with intellectual disabilities were known at the time – were recognized members of their local communities. But beginning in the 19th century, the rise of modernity put greater emphasis on normality. A good citizen was one who had the ability to be productive and self-reliant. A new class of professionals emerged whose careers were devoted to managing human health and behaviour.

By the mid-19th century, these changes had contributed to the identification of “feeblemindedness” as a social problem that needed to be identified and treated. Feeblemindedness was a broad category that included people with intellectual disabilities, but also others who were deemed unproductive or immoral, such as immigrants, people of colour and the poor. It became increasingly common to remove the feebleminded and other people with disabilities from their families and communities and place them in institutions. Early institutions in the United States were inspired by French educator Edward Seguin, known as the “apostle for the idiots”. He believed that people with intellectual disabilities were capable of learning and development.

Inspired by Seguin’s success, the first American institutions, led by men such as Hervey B. Wilbur, Samuel Gridley Howe and Henry M. Knight, were dedicated to education and uplift. They were intended as a temporary measure to build residents’ skills and moral character, releasing them as productive members of society.

Within a few decades, the mission of institutions began to shift from reform to permanent custody of the feebleminded. It was hard to find employment for newly reformed inmates, particularly during periods of economic scarcity.

In the early 20th century, the eugenics movement contributed to prejudice against the feebleminded by proposing that they posed a threat to the purity and strength of the nation’s bloodlines...

By the mid-20th century, the rise of a parents’ movement and a series of damning journalistic exposes of facilities like Willowbrook State School and Letchworth Village began to roll back the practice of institutionalisation." 

["Why has Japan’s massacre of disabled people gone unnoticed?", The Independent (UK), August 31, 2016] 

Note to the Aleh PR team: Beware. Brandishing the euphemism "village" (here for instance) does not cleanse a place of its institution-ness. In fact, the infamous Letchworth was positively buccolic:

"The grounds surrounding the buildings were very plentiful and created lots of leisure space for patients." [Wikipedia]

Campaign poster from REPLACE [Link]

It's important to note that institutionalization had its roots in good intentions and compassion akin to the sentiments of the many misguided supporters of Aleh.

And here are findings of Disability Rights International, a little-known organization dedicated to investigating the conditions in institutions for children with disabilities, 

The team is small, but they’ve made some genuine advances over the years... An expose of abuse in one particular facility that DRI collaborated on with the New York Times Magazine, contributed to the historic 2006 UN treaty on people with disabilities, which called for disabled people to have the same human rights as the able bodied.“It’s something that we can change,” says Laurie Ahern, President of DRI: “This is really not a complicated problem; this is about donors putting money to families and not supporting orphanages.” ... DRI, Lumos and other organisations including the Replace Campaign all support the idea that we should change this culture of institutionalisation and work on keeping families together, supporting communities, and improving social networks. ...[Their] work has also led to the European Union introducing a policy where European money cannot be used for maintaining any kind of institution... There is also an economic argument, Ahern adds: “It’s so much less expensive for government to support families to [help] children with disabilities go to school, than it is to pay to keep them in an orphanage for a long time. ["Out of sight: the orphanages where disabled children are abandoned", The Guardian, September 26, 2016]

On Yom Kippur, the Day of Atonement, let's remember: There is no  better atonement for the sin of institutionalization than de-institutionalization.