Sweet home, Jerusalem

In the hydro pool this week

First, we are at home, thankfully, having avoided the morass of the ER and the hospital ward ["Status report: Status epilecticus"]

Last Friday night, the hard seizures reached 3-minute intervals. My med drawer only had Diazepam which expired June 2018 and the pharmacies had none in stock. (Doctors tend to discourage its use at home so there's not much demand for it). 

But I was determined to keep Haya at home. So I relied on the pediatrician's assurances that those dates are probably posted just to compel us to buy fresh meds. And I gave it.

Folks, you can now rest assured that those expiry dates truly are, at least in some instances, somewhat advisory only. That 2018 Diazepam worked like a charm, at least for us. Haya slept seizure-free for some eight hours.

(Apparently, not all drugs are as resilient as our Diazepam, but undoubtedly, many are. So check before you discard. I'm so thankful - but have no idea why - I didn't include that Diazepam along with all the other expired drugs I recently tossed.)

I've still got six more doses here but for now paracetamol and Advil (ibuprofen), given alternately throughout the day, have been adequate.

That's in addition to her anti-epileptics and cannabis, of course.

While I can't say she's fine, relative to what she just endured, things look positively peachy.

She floated calmly in the hydrotherapy pool where we take her for an hour on Monday, although, "slept" would also be an accurate description.

And has even done her 45 minutes of assisted walking a couple of nights this week..

Today her carer took her outside for her first time since her deterioration began.

Here is Haya, sleep-floating (at the top) and bundled up for her walk (on the right).

Status report: Status epilecticus

I don't normally write in midst of a horrific period for Haya. 

But while I type this, she is in nearing 48 hours of what would undoubtedly be deemed by a hospital team as Status Epilepticus. Basically, that's the epileptic's nightmare - non-stop seizing - and I figured I ought to record it. 

Until this struck us, she had been doing extremely well and was down to only 3-4 seizures a day. I was growing ridiculously optimistic about her new med, Fycompa, already dreaming about her possible future milestones. 

Tomorrow night, her Fycompa dose rises from 4 mg a day to 8, as her neurologist instructed us. That's the therapeutic dose we've been aiming for these past six weeks.

But now I don't have the same high hopes I had for it's success as I did two days ago. And in any case, it will be some time before the higher dose kicks in.

Haya right after a seizure today

UPDATE December 25, 2020 - Friday afternoon 2:30 pm: Her seizures have worsened so we have one foot out the door in the direction of the ER. The memories of our last stay there are still so vivid and horrible. And I know the experience will only be worse now in the midst of our huge Covid wave. 

So before resigning ourselves to the ER, I  am making last-ditch efforts to get her under control at home with paracetamol, Advil and raising her Vimpat back to 100 mg. Insider tip: Avoid those paracetamol suppositories even when swallowing is problematic. They can escape from the rectum quite a while after administering. There's no way of knowing how much was lost so you can't re-administer. It just happened here!

As a last resort, I have prepared our Diazepam rectal tubes that have an expiry date of 2018. I've read the instructions carefully and studied the diagrams. We can't find any new stock in any of the pharmacies here. Haya's pediatrician believes they're probably still potent as drug expiry dates tend to be exaggerated. 

I also called her neurologist who had succinct advice: "Get her to the ER." 

In three days we've gone from counting the number of seizures/day to the number of minutes between seizures! 

Will update - hopefully from home. Meanwhile here is Haya, whacked by her ordeal.

Forgotten justice

Image Source: Amos Ben Gershom/GPO 

Israel just hosted "heavyweight" Trump administration official Jared Kushner, with PM Netanyahu lavishing fulsome praise on him: 

President Trump's Abraham peace initiative has already created a whole series of breakthroughs. Jared you've successfully reinforced American leadership in the Middle East and in Middle East peacemaking. I think you've greatly enhanced American standing in the region... I thank you Jared and I want to thank all of you for assisting this great effort. We will never forget it. Thank you all. [Link]

At this point I believe we can safely conclude that the "peace initiative", "the whole series of breakthroughs" and the "groundbreaking visit" of which our PM raved will certainly not lead to justice for our murdered child, Malki, during the Trump era.

Justice is not a "breakthrough" on the Trump Middle East team's agenda. And, make no mistake, it was a team comprised of individuals armed with the power, influence and, we would have presumed, the moral compass to propel them easily toward that goal. 

We certainly did our utmost during the past four years to galvanize them in that direction. We pleaded with them - via emails, personal messages, tweets and a front page newspaper ad - to demand that Jordan extradite mass murderer, Ahlam Tamimi.

Jordan has steadfastly refused to comply with the US Department of Justice's demand for her extradition. A determined Hamas operative, she murdered two US citizens in the 2001 Jerusalem Sbarro bombing in which a total of 15 men, women and children perished. She openly boasts of that achievement to this day. 

But neither the existence of a valid extradition treaty signed in 1995 by the US and Jordan, nor the formal US demand for her have moved King Abdullah II.

Trump administration officials could not care less. To wit, this week, David Schenker, the Assistant Secretary for Near East Affairs, U.S. Department of State, marked 20 years since the Free Trade Agreement between Jordan and the US in a commemorative ceremony.

He subsequently gushed this tweet

I have developed a deep appreciation for the friendship between our two countries and Jordan’s role as one of the United States government’s most important partners.” #FTA20Strong

Is this the sort of treatment that the US tolerates from its other "most important partners"? Defiance, rejection of an extradition treaty, the harboring of a murderer who is one of the FBI's Most Wanted Terrorists? 

Undoubtedly not.

Jordan has enjoyed undeserved kid-gloves treatment from the US government for long enough. It is high time that justice and enforcement of lawful treaties were given the respect that is due them.

President Rivlin joins the pack

Image Source

Last week, during Chanukah, our President joined the list of Israeli politicians and dignitaries who have honored Aleh or Adi with a visit. 

Like the others, some of whom I've mentioned (To quote Diana Ross: I'm still waiting and Unexplained upheaval at Aleh?), Reuven Rivlin showered Adi with fulsome praise. But, his hyperboles so far surpassed those who preceded him they bordered on parody. 

Example:

"During my visit here today, you all gave me so much hope, so much love, and so much light... Doron,[Doron Almog, CEO of Adi] my dear friend, an IDF hero and an Israel Prize Laureate, what a wonderful torch you have lit here, this little slice of godliness. It is a lighthouse of giving, a lighthouse of love, a lighthouse of faith. Here, you do miracles, in these days, at this time, and you know how to light many candles from just one small jug of oil. Thank you for establishing the ADI Negev-Nahalat Eran rehabilitative village, this precious light that guides us all."

I mean, really, "this little slice of godliness"??? Mr. President, I believe it's time for you to find a new speechwriter. 

The President is now the recipient of a letter of complaint which I sent him, just as I did the Minister of Health Yuli Edelstein, the Minister of Education Yoav Galant, and the Dutch Ambassador to Israel, Hans Dokter. 

The first two never responded - despite my repeated resends - while the last sent me a lame defense of institutionalization.

Regarding the Adi vs. Aleh confusion [Give up? Never]] I'm afraid there have been no fresh revelations. My Personal Messages on Adi's Facebook page inquiring about the split now number 3. Adi's responses remain at 0.

And here is Haya engaged in one of her favorite activities. It's right up there with her hydrotherapy, her walking and her eating. 

Now, I realize she is 25 years old and those achievements are unimpressive at this stage in her life, but they thrill me nonetheless. So here she is kicking away.

Shalit Deal Redux?

Convicted terrorists on their way to freedom 
in the 2011 Shalit Deal [Image Source]

"Those who forget the past are condemned to repeat it"

George Santayana, Spanish philosopher, in 1905.

It's clear that Israel's leaders and media have been determined to forget the price we have been paying these past nine years for the infamous Shalit Deal. 

Numerous of its 1,027 releasees resumed their bloody activities, murdered additional Israelis and are currently re-imprisoned. Their precise numbers are unpublicized and unknown because that is the way this government wants it.

One releasee, Ahlam Tamimi, the mastermind of the Sbarro pizzeria massacre in which my child perished, lives free in Amman where she actively incites to terror and is a fugitive from the US Department of Justice.

Israel's government and media studiously avoid any mention of her.

All this evasion and silence are contributing to another likely disastrous prisoner release. Today we learn that hundreds of convicted terrorists will probably exit Israel's prisons in coming days in yet another lopsided swap reminiscent of the Shalit Deal ["MK warns emerging prisoner swap with Hamas will free hundreds of terrorists", Times of Israel, December 14, 2020]

The prospective release is, predictably, presented by the media as a gift, an opportunity that Hamas is handing us because of its COVID-triggered unrest. Will Israel's public swallow the same malarkey it did in 2011?

The scenario is all too familiar: PM Netanyahu is grappling with his own internal political woes just as he was in the summer of 2011 when thousands took to the streets to join the "social justice protests" over price rises and falling standards of living. 

The Shalit Deal was the candy he tossed the public. It worked like a charm - his popularity soared.

Will Israelis sit by and hand Netanyahu the same lifeline as it did then? Will his cabinet once again sit idly by as convicted terrorist murderers walk free to murder more of our loved ones? 

We can only hope that enough ethical, rational compatriots will heed Santayana's warning and stop the madness.

Give up? Never

Haya, yesterday

My daughter Haya, now 25 years old, has just mastered a new sign - one which she devised independently. 

It had me and her speech pathologist snapping away elatedly with our phones to record the "miracle". She's been doing it a bit at the sessions for a while, but less emphatically than she did yesterday. 

Previously, the only sign she had made was pointing her index finger for "yes" and occasionally making a fist for "No". We taught her those signs many years ago. 

But, as I noted, the new one is her own creation and means "give me food." She only uses it when seated in her chair, wearing a bib and awaiting my feeding her. 

Normally, we give her a spoon and she feeds herself so there's no need for this new sign. She only uses it when I'm feeding her - which I only do during the speech therapy session. 

So it's an appropriate and clear sign. Here it is on the right in a photo I snapped yesterday.

Another milestone reached this week was the start of the higher dose of her newest med, Fycompa. She went up from 2 mg. pills to 4 mg. pills for the first time.

I have a request. Please remember these milestones when you next read Aleh's or ADI's disingenuous propaganda about "severely disabled" children requiring institutional care to achieve their "fullest potential". 

I named both organizations - Aleh and ADI - because I am still befuddled as to their identities. Are they connected to each other? Are they separate but co-existing? Are they at war?

 

I have messaged the ADI Facebook page with that query but there's been no response till now. 

Hmmm. Predictable.

Activist groups to UN: Israel denies its disabled their human rights

Israelis with disabilities protest in Jerusalem

Sometimes, or more precisely, rarely, in Israel, we are treated to a sliver of good news about our citizens with disabilities.

That happened on Thursday when Haaretz revealed that a coalition of 30 advocacy groups representing people with disabilities submitted a report to the UN committee overseeing compliance with the International Convention on the Rights of People with Disabilities.

They did so to mark the International Day of People with Disabilities. 

Israel signed that Convention in 2007 and ratified it in 2012. Its Ministry of Justice recently submitted an official report to that same committee which these organizations deemed "very partial and lacking".

According to this "alternative" report, Israel is blatantly violating several clauses in that Convention while only minimally implementing others.

It cites huge/major gaps between the convention and the status quo by providing an updated, detailed picture of the rights of people with disabilities in Israel in multiple realms including equality, access to justice, health, employment and respect for privacy. It noted the absence of a comprehensive program to reduce those gaps. 

"The State of Israel... has yet to absorb/assimilate the principles of the treaty and doesn't see it as a "compass" intended to guide its relationship, its laws, its policies and its actions toward people with disabilities neither in the legislative realm nor in the practical realm", write the authors of the alternative report, which has received limited attention.

According to Edith Saragusti, director of monitoring and policy implementation at Bizchut, Odelia Fitoussi (chosen this week to serve on the UN committee overseeing the implementation of the treaty) and social activist Yoav Kraim, notwithstanding significant changes in the last three decades, people with disabilities still do not fully and equally enjoy human rights and basic liberties as required by the Convention. They continue to suffer from discrimination, exclusion and denial of rights.

The two reports describe two different worlds.

Clause 19 of the treaty, for instance, determines that every person with disabilities has the right to live independently in the community "with choices equal to others " and with the support and assistance needed.

While the official report quotes Israeli legislation without reference to segregated residences which the convention opposes or to the number of people living in them, the "alternative" report determines that in fact Israel "violates the right to independent living within the community" and notes that the section dealing with "in-community living and the personal aid package" in the Law on Equal Rights for People with Disabilities has to date not been legislated due to governmental opposition.

"Nearly 20,000 people with disabilities still live in institutions, without the ability to make basic choices such as roommates, when to go to sleep or what to eat. And that's without getting into the widespread abuse, neglect and violence toward people with disabilities in some of the institutions," says Saragusti.

While this report is undoubtedly a step in the right direction, Doron Almog is still doggedly pursuing the entrenchment of that very institutionalization which the Convention decries.

Toward that end, he posted the following news on his new, revamped ADI Facebook page:

"Last week, Israel and Taiwan signed an historic Memorandum of Understanding on Cooperation in Volunteering, the first step in creating a strong and mutually beneficial framework for volunteerism between the two countries... Major General (Res.) Doron Almog, Chairman of ADI Negev - Nahalat Eran, attended the special ceremony in Tel Aviv as the guest of honor, pledging the rehabilitative village’s full cooperation and support in pushing this wonderful initiative forward..."

Please note: This sort of volunteerism is maligned and discouraged in most other developed countries where institutionalization is recognized as the evil it truly is.

A propos Doron Almog and his mushrooming enterprise, ADI, the mysterious chaos there seems to be intensifying. The strange posts on the Aleh Facebook page about which I wondered in earlier posts have vanished - as has the entire Facebook page!

If you have any information about the Aleh vs ADI confrontation please share it with me. The suspense is becoming unbearable!

D-Day

[Image Source]

To mark the International Day of Persons with Disabilities, our national TV station (KAN 11) is treating us to a series of programs dealing with the topic of disabilities. 

Each one that I've watched was a gem and it was difficult to choose the best for sharing here. Nevertheless, I settled on the two below:

First - 

סליחה על השאלה ילדים | ילדים עם עיוורון | שידורי בכורה ביוטיוב

On YouTube here
 
It's a segment of the program "Sorry for the Question" in which blind children answer questions about their lives.

And -

The documentary Master Class which premiered at the Docaviv Film Fetival of 2017 portrays a workshop conducted by actor/director Arnon Zadok for a group of people labeled cognitively disabled or having special needs who attend a day center operated by Chimes Israel. 

Once a week for two hours, the group attends this acting workshop. It is unique in that everything is done by the participants. They act and film themselves. 

The documentary (see it on YouTube) is comprised solely of their material and focuses on several participants who present moments from their lives, unrealized dreams, fears and concerns. The film describes a world parallel to ours but pours a magical light on the truth.

It demonstrates, yet again, why I'm such an avid fan of Israeli documentary films.

Meanwhile, back at the ranch, we are monitoring Haya closely for her reactions to the med changes we are making for her.

Her neurologist responded within a few hours to my query yesterday. He advised us to return her Vimpat to its previous dosage of 150 mg. We had lowered it to 100 mg. with the goal of gradually removing it entirely.

He advised us to wait with lowering it again until we've reached the highest dose of her new drug, Fycompa.

Confession: We've decided to return to 150 mg only in the morning and remain with 100 mg at night. Haya seems to be seizing a bit less but is more fatigued than usual. That's to be expected with Fycompa, according to the drug info. Her dosage is still the lowest possible, 2 mg. 

So there's a chance that we'll enjoy better times with the goal dosage of 8 mg.

For now, our hopes, bets and prayers are on Fycompa - a drug we'd never even heard of a short two months ago.

Deinstitutionalization, Aleh and ADI

Mandy Leighton Bellichach is the Chair of Bizchut's Board
[Image Source]

Bizchut, the leading organization devoted to promoting the rights of people who have disabilities in Israel, sent out a mailer this week emphasizing its focus on deinstitutionalization. Music to my ears!

Their message ended with this:

We help people and their families handle the many bumps on the road from the institution to a life of dignity and equality in the community. In the year 2021, Bizchut's goal will be to double and even treble the number of  people with disabilities who will receive assistance to live - like everyone else - within the community... [Hebrew original - my translation]

Now juxtapose that with the two large institutions, the places formerly called Aleh Negev and Aleh Jerusalem, both now renamed ADI which Doron Almog now heads. 

He is expending great efforts to promote and fundraise for them. He has dwarfed Aleh which, as I've written earlier, now consists of only the Gedera and the Bnei Brak branches and is lagging woefully behind in its PR. 

With Rabbi Yehuda Marmorstein at its helm, Aleh's Facebook page has for the past five days sported a link to its purported website. But when one clicks on it, the ADI website comes up.

Here's hoping this "battle" for our children and young adults with disabilities results in a victory for neither of the combatants but rather for Bizchut and deinstitutionalization.

More med misery

The medicinal changes Haya is enduring began taking their toll on her some five days ago - many tough seizures throughout the day. 

Occasionally, acetaminophen gives her a few hours of relative calm. And, of course, the swimming pool worked its wonders on her yesterday. She performed there beautifully - see video below.

Haya in the pool with me

But otherwise it's an ordeal for all of us. We're aware that any changes in meds can throw these children off kilter. Yet, on the other hand, this may signal the need to return to her previous regimen and abandon the Fycompa.

I wrote to the neurologist for advice a few hours ago and await his response.