To quote Diana Ross: I'm still waiting

The Diana Ross song is here

Waiting, waiting and waiting some more. Aside from the US presidential election results, we're doing a heck of a lot of other waiting.

1. While she suffers from daily, debilitating seizures, we're waiting to get that new med, Fycompa (generic name: perampanel), for Haya. The neurologist mistakenly sent us on the 29 Gimel track for authorization. It turns out he isn't familiar with the workings of Israel's health funds so he's not to blame. I've been speaking to both our pediatrician - who must write us the script - and the secretary at the health fund office in order to get this process on the right track. For now, the ball isn't even rolling yet. And authorization remains a dream. 
2. I am also still awaiting a response from the Ministry of Welfare regarding the residents of institutions under its supervision. Specifically, what I want to know is in which institutions the victims of Covid-19 lived when they fell ill. Under the Freedom of Information Act, the public is entitled to that. It even has a name: segmentation. I was only given general numbers by the Ministry back in July. To date, the Ministry has only responded to extend its time limit. I've learned that it is entitled do that three times to reach a maximum of 120 days At that point I can proceed to the government ombudsman.
3. Waiting is ongoing for a response from the Ambassador of the Netherlands to Israel who is scheduled to speak at an Aleh event next week. Why would an ambassador from a country where family care is the accepted policy for its children with disabilities promote the removal of children from families in Israel!? I will share his response as soon as it arrives here.

But at least we're not waiting for magnificent hydro sessions for Haya. This week, due to some malfunction, the pool we rent for her therapy was heated to 34 degrees Celsius. That meant we were able to dispense with her wetsuit, allowing for greater freedom of movement. 

Here she is, relaxed and floating skillfully even without the added buoyancy of the wetsuit.

Good job, Haya!

Beware what you boast about

In its November 2020 edition, The Lancet Child and Adolescent Health includes a letter [here] signed by six disability activists from several leading NGOs: The Validity Foundation, European Network on Independent Living, Disability Rights International, the International Federation for Spina Bifida and Hydrocephalus, and the International Disability Alliance. All advocate for the rights of people with disabilities. 

Their letter is entitled "Institutionalisation and deinstitutionalisation of children". 

They were responding to an article in a previous edition which had justified "placing children in group homes for so-called short -term placement 'with the objective of child reintegration' and if 'reintegration is not possible or in the child's best interests.'" 

The letter continued:

"...The authors' rationales for placing children in group homes are deeply problematic. Once children are in group homes, temporary placement tends to become permanent, especially for children with disabilities in countries that do not invest in supporting families. The Lancet's own scientific findings on the harm caused by institutions (including small group homes) refute the possibility that such placement can ever be in the child's best interest. Anything less than the right to family life for children with disabilities is discrimination under the UN Convention on the Rights of Persons with Disabilities. The CRPD Committee has said that the core of the right to independent living for children is the right to grow up in a family and 'large or small group homes are especially dangerous for children.'"

Within days of reading the above I watched a video clip posted by Aleh's indefatigable PR people showcasing the skills of a child who resides in a large Aleh institution - not a small group home.

She appears to function on quite a high level both physically and cognitively and Aleh was patting itself on the back for her achievements. 

Haya and her new ear-rings

But the PR folks were contradicting themselves. On their website, they remind donors, ad nauseum, that Aleh residents "have complex disabilities and require intensive support to perform daily activities."

The child in this clip patently does not fit in that category. 

So, why, for heaven's sake, is she locked up in an institution? And why are the anti-institutionalization arguments posed in that Lancet letter absent from any discourse in Israel about the care of people with disabilities? 

The cogent case for deinstitutionalization must finally penetrate the Israeli psyche, its government and its politics. Its embrace by our society is beyond overdue. Its deadline: yesterday!

Here is our Haya modeling her new pair of earrings purchased on line this week from an Israeli shop, closed due to Corona but delivers its items to your door in record time! 

My Monday

My Monday was largely devoted this week to my daughter Haya and her disabilities.

First was a morning tele-visit with her newest neurologist. We had consulted him a couple of times some fifteen years ago but haven't had contact since. Now we have returned to him primarily because of his expertise in medicinal cannabis. He joins our list of the 20 or so neurologists already consulted for Haya throughout her life. 

But the upshot of Monday's consult with him was to leave our cannabis dose as-is and weigh other treatment changes. Our quest for the elusive epilepsy control continues.

These are the three options the doctor served up:

• Replace Vimpat with a new drug, Fycompa (generic name: perampanel)
• Give the Ketogenic Diet a second shot. We tried it for about 10 months when Haya was about four years old and failed
• VNS surgery which would involve removal of the old one implanted in 1999 and non-functional for most years since then, and implantation of a new, improved version.

We intend to first try Fycompa which has the least hope of success given the many drug failures that Haya has already chalked up. So we've already submitted the requisite Form 29 Gimel to our health fund to receive authorization of "private importation of a drug that isn't registered in Israel". 

It was approved by the FDA in October 2012 but somehow remains in that category in Israel. 

Simultaneously, we'll pursue the Ketogenic Diet and the VNS surgery, both of which will take a while to arrange. Both offer more hope than medications.

The second event yesterday involving Haya was a Zoom session with a half dozen other parents of children who have the SCN2 mutation. It was organized by Dr. Anne Berg who is researching treatments for SCN2A patients. She wanted to speak to parents in advance of upcoming clinical drug trials. 

At Aleh during Sukkot, extremely vulnerable but maskless children

It was interesting to hear from parents around the globe, and I mean that literally: a father in India, a mother in Dubai (she actually splits her time between Dubai and Spain), and mothers from various States in the US including Pennsylvania.

Here is some background info about our group which has 670 members. The mother speaking on this clip, Leah Schust Myers (in the screenshot at the top of this post), is the one who organized yesterday's Zoom encounter:

And while the devotion and determination of the SCN2A parents I met was impressive, the ongoing institutionalization of Israel's children with disabilities is very UNimpressive. 

Our Ministry of Welfare remains mum about where the victims of Covid-19 with disabilities residing in their institutions lived, although their deadline to answer me under the Freedom of Information Act passed four days ago. They've now had over two months to provide me - and by that I mean "the public" - with that easily attainable information.

And here [Facebook link] is Aleh broadcasting to the public how very high risk its residents are for becoming seriously ill with Covid-19. 

They've posted this on their Facebook page:

Uzi and the oxygen balloons at Aleh

"Here in Aleh:
There's a program for life-saving respiratory therapy. Most Aleh residents suffer from respiratory compllications, breathing difficulties which often cause pneumonia and hospitalization.
Consequently, the respiratory therapy program of Aleh offers respiratory therapy personally adapted to the residents. The therapy includes the use of equipment and sophisticated devices that clear the lungs and intensify breathing. 
Breathing activation several times a day is incorporated into all daily activities. This photo shows Uzi bringing more oxygen balloons for reinforcement at Aleh."

And that's Aleh's Uzi and the oxygen balloons in the photo above.

Nevertheless, Aleh's high risk residents continue to be housed and placed in close contact to one another and without masks. See the photo above from their Facebook page showing extremely vulnerable - but maskless - children seated close together under a large umbrella being waved by the attendants, "celebrating" Sukkot.

Why???

The king's quandary

The news on BBC Arabic devoted more than six minutes
on its October 8, 2020 bulletin to an extraordinarily sympathetic
re-telling of Tamimi's encounter with a Jordanian radio talk-show

The mystery surrounding the deportation of Ahlam Tamimi's husband, Nizar Tamimi, by the Jordanian authorities, remains unsolved.

It was a puzzling move which only made some sense as a tactic to lure Ahlam Tamimi out of Jordan.

She seems to have quickly morphed into a political hot potato in light of the US's intensified pressure on Jordan to extradite her. 

The speculation in the Arabic media has been that newly-appointed US Ambassador to Jordan Henry Wooster was flexing some muscle and threatening heavy monetary sanctions on Jordan for defying the demand of the US Department of Justice for Tamimi's extradition.

Hence, apparently, Nizar's deportation on October 1, 2020 to Qatar.

But since then Jordan's regime appears to have been paralyzed. Last week, a very public display of disdain for Tamimi on the Jordanian talk-radio program "We and You" galvanized public support for her "plight" on social media ["Report: Jordan deported Sbarro terrorist mastermind's husband to force her out", i24News.tv, October 2, 2020]

The host of that popular call-in radio program, who was video-taped mid-conversation signaling for caller Ahlam Tamimi to be disconnected, cited technical difficulties as the cause for the move. But he has now resigned and his show has been suspended indicating that was a fabrication.

Tamimi's fans who adore her for murdering fifteen innocent Jewish men, women and children (8 children!) are irate. The hashtags #WeAreAhlamTamimi and #AhlamTamimiYourVoiceIsHigh were near the top of Jordan's social-media trending lists.

 
Even BBC Arabic invited this monster to be interviewed - minus the "technical difficulties". 

Not once since the Sbarro massacre has the BBC deigned to cover the story. Only now, when Tamimi is pleading for pity, did it do so. And without the slightest reference to the massacre and its victims.

King Abdullah II is clearly caught between a rock and a hard place. Who can he afford to confront: his bloodthirsty constituents or his benefactor, the US?

While he mulls that choice, we sit with bated breath, hoping these latest developments will bring us the justice for which we have long pined.

This mass-murderer begs for your pity

Wanted and dangerous | The US Department of Justice
unsealed an arrest order and an extradition request in 2017

Poor Ahlam Tamimi. 

Her husband has been deported ["04-Oct-20: The Sbarro bomber's husband has been forced to leave Jordan: A snapshot of developments"] to Qatar from Jordan, the country which had afforded the couple refuge and freedom for the past eight years. 

Or as Tamimi wrote in her plea to Jordan's King Abdullah II: 

"Jordan has embraced me and was a safe haven for me and my husband Nizar Tamimi after we were released from the prisons of the Israeli occupation. We lived the most beautiful days of our lives among the Jordanians in Jordan for nearly eight years."

Now, in the wake of that deportation, Tamimi is angling for sympathy. She bemoans the fact that the deportation has resulted in "separating us from each other so that we are disunited and returned to the pain of separation again."

That's right. She'd like the public to pity her, the woman who has never ceased gloating about the eight children and seven men and women whom she slaughtered in 2001.

 
And here is that blood-thirsty monster, one of the FBI's Most Wanted Terrorists (there are 28 of them in total) turning on the self-pity full blast in an interview with Al Quds, the news site of Hamas-affiliated Quds News Network 

"With the deportation of Nizar from Jordan, memories of the engagement period that was in Israeli prisons came back to us. The pain of separation returned, the pain of distancing and suffering."

We can only guess what Jordan's puzzling deportation of Nizar Tamimi portends and hope that it means true justice is on the horizon. But for now, we can only take comfort in the fact that our precious Malki's murderer is apparently not happy.

Israel's Ministry of Welfare is still concealing information

The ministry's Jerusalem head office [Image Source]

Here in Israel, we are still anxiously awaiting a significant drop in the upsurge of Covid-19 infections, to enable an easing of our restrictions. And to think, just a few months ago we led the world with our low Covid-19 stats.

In the meantime, the wall of silence I have hit remains intact [see "Freedom of information"]. There is no sign that our government will enlighten us about our Covid-19 victims with disabilities any time soon. 

The Ministry of Welfare (משרד העבודה הרווחה והשירותים החברתיים to give them their full and current name - translates to Ministry of Labor, Welfare and Social Services which no one ever calls them) was legally obligated to provide us with the information we seek by October 10th, under the Freedom of Information Act.

But it's a safe bet that the "check isn't even in the mail".

So we remain in the dark about "segmentation", to use the Ministry's favored term... meaning we still don't know the names of the institutions in which those victims were locked.

Not only is the public entitled to that information, for many parents of children with disabilities it is crucial.

As this pandemic stretches on, many parents are left in a quandary. Should they keep their children at home or relinquish them to institutions, as our government urges us all to do? Should they struggle to provide their children with the specialized care and therapies they need or hand them over to government subsidized, large, closed institutions where such amenities are purportedly provided?

Before Covid-19 struck, professionals the world over maligned those institutions for robbing children of the love, attention, constancy and emotional stability that every child deserves and needs. But now, in the Covid-19 era, it could well be that removing a child from his family will actually endanger his very life. 

Bear in mind that most of them are at high risk for being severely ill with the virus. It has been proven that those with neurological impairment or genetic mutations are in the high risk category.

Life in a large, closed facility with rotating care-givers is obviously not the ideal setting for avoiding Covid-19 infection.

Once the holiday season is over and this strict lockdown is eased, I hope that the Ministry of Welfare will fulfill its obligations to release the information it has been concealing for so many months.

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.