Making history: After the raid

The Knesset delegation [Image Source]

Well, as you may already have read, the Bizchut surprise raid actually took place. (I foreshadowed this earlier - see "Institutionalization: Upping the activism ante".)

On December 18, 2018, fifteen Members of Knesset fanned out across Israel to visit twelve large closed institutions for people with disabilities. Each Knesset member was accompanied by an activist on behalf of equal rights for people with disabilities. 

And thus I believe I transitioned into a disability activist because, I'm sure you'll agree, blog and article writing just doesn't cut it. 

Nachman Shai (of the Labor Party) was the Knesset member with whom I was paired. Along with his aide, we were given a tour of Aleh Jerusalem, an institution housing 80 residents with disabilities ranging from moderate to severe. They live in rooms of 3-4 beds and spend all day every day in a five story building that is surrounded by auto garages and parking lots.

Our guide treated us to a relentless barrage of PR prattle, some of it identical to the material I have read on the Aleh website. For example:

"We encourage the parents to remain parents and they are free to visit their children at any time of the day or night. Even if the child is asleep - needless to say, I'd discourage a mother from waking her child...." 

But interspersed with the interminable prattle were some telling points.

• "Of the 80 residents, three are wards of the State." Only three!
• "Some of the parents gave up their children because of lack of sufficient surrounding support"!!
• "Some out of difficulty in organization."
• "Not all families are 'built' for it." 
• "We have a couple of staff members who are raising at home children with disabilities as severe as the residents. They fully understand the parents who place their children in Aleh."
• "We encourage parents to maintain ties with their children and to have 'family events'". 
• "We champion integration of the residents in the community. But since it's too difficult to take them out, we 'integrate by bringing the community into the institution.'"

I haven't had the time to transcribe all of the guide's hour long spiel.

Aleh Jerusalem [From the Aleh website]

In the meantime below are the comments that Yotam Tolub, Bizchut's Chief Executive. posted on our Whatsapp site on Tuesday after the raids:

"Today you tackled a super difficult task. To succeed in opening the eyes of a Knesset member encountering the issue for the first time and who came with unconscious stigmas of his own and to deal with not simple institutions some of them very misleading. And I believe that this entire group made history. There is no precedent in the State of Israel for activists to being Knesset members to see these closed places.There is no precedent for so much information about institutions to be revealed in one day. A mass of harsh testimonies and our job at Bizchut will be to share this with the world and little by little to create a crack in the wall."

And here is what Na'ama Lerner, Bizchut's Director of Community Outreach, posted:

"I sign off on every word that Yotam wrote. You see your success or lack of success in convincing or showing the specific Knesset member something specific. But let's look for a moment at the macro, the larger picture. What did we have today? 15 Knesset members, a truly large group by any criterion, which stopped its day for several hours to see how people with disabilities, on the periphery of Israeli society, live. To visit the most transparent, invisible people in the State of Israel. Fifteen Knesset members answered this call. This has never happened before!"

Here's the press coverage from Ynet's print edition and Ynet Television.

Institutionalization: Upping the activism ante

From the Bizchut brochure

I am thrilled to share news of a concerted Bizchut campaign now underway. Its target: large, closed Israeli institutions housing a total of 16,700 residents with cognitive disabilities.

 The following is from their recent circular about it:

"We cannot abandon the residents of institutions, the weakest and most silenced population within the disability community. Bizchut is embarking upon a systematic exposure of the state of human rights in these facilities.

Your support for this project will enable us to expose and take action to correct violations of rights in three ways:

• Development of the MOSADOT app which will enable residents, relatives and professionals to submit complaints of violations of rights to Bizchut in real time.
• Institution WATCH Training - for activists who will carry out surprise visits to institutions: the team will include persons with disabilities, relatives and concerned citizens.
• Institution WATCH: Surprise Visits - Bizchut together with members of the Institution WATCH team will visit 20 institutions. Each visit will include preliminary collation of data on conditions in the facility, summary of findings after the visit, a report to the relevant government ministry and follow up on the violations exposed."

This is particularly welcome news for my husband and me. We are raising our 23 year old daughter at home despite the hardships that are rooted in a system favoring institutionalization. Citizens who, like our Chaya, suffer from multiple and severe disabilities are routinely separated from their families. 

The Bizchut logo 

That institution-bias results in generous funding for large, closed institutions coupled with meager assistance for families that keep their loved ones with disabilities at home.

Since we live in an "enlightened" age, the abuses that Bizchut has uncovered on its 2017 visits to those institutions may not strike many as alarming. Some may not even consider them deserving of a mention, let alone of an all-out campaign. And certainly not worthy of a visit to the Knesset like the one in session as I write.

Here are some examples:

• High functioning residents are often kept together with very low functioning ones. Some of them are very intelligent and articulate - as Bizchut activists found when conversing with them. There appeared to be no reason for them to be banished from mainstream society. When questioned, institution employees explained that a few of those residents had chronic health issues such as heart ailments or diabetes requiring medical monitoring!
• Residents were often found either sitting and staring into space around tables in bare rooms; at times there were several toys or puzzles on the table. Other residents were wandering around aimlessly. 
• Their rooms contained no personal effects, no photographs of family. Walls were bare both in rooms and public spaces. Some bathrooms had no soap, toilet paper, tooth-brushes toothpaste or any personal hygiene items.
• In some institutions, the structures were old and damaged and furnishings were dilapidated and broken. 
• In one facility, door handles to all rooms had been removed, staff members carried a standard handle with keys to give them access to those rooms but residents were barred from their own rooms without staff assistance. 
• In one facility several residents were missing teeth.

The list of critiques goes on and on. 

The director of one of those institutions wrote the Ministry of Health a detailed, itemized response. In every instance, he maintained that he and the staff were doing an exemplary job. The following are excerpted from his lengthy letter:

Regarding the inactivity/boredom complaint, he wrote:

• "The facility offers a structured program which we trust you [Bizchut] discerned"

On the teeth issue:

• "All residents receive annual dental exams... A dental technician periodically instructs the facility staff... Over the past 7 years, 15 residents have received implants..."

On the absence of door knobs:

• "There are some residents with 'challenging behavior' which necessitates the removal of door handles to protect them and prevent them from locking themselves inside their rooms"

I am proud to participate in this campaign. Looking forward to sharing a report on that soon!

UPDATE December 23, 2018: The update is here.

Can Florida's DeSantis help bring us justice?

Image Source

Kudos to Governor-elect of Florida, Ron DeSantis.

In his speech last week at the national conference of the Israeli American Council (IAC), he mentioned our murdered daughter, Malki, by name. She was one of fifteen victims of Hamas terrorist AhlamTamimi in the 2001 bombing of Jerusalem's Sbarro pizzeria. 

Thanks to Jordan's King Abdullah, Tamimi enjoys refuge and adulation in Amman in contravention of Jordan's extradition treaty with the U.S.

DeSantis went on to urge the Department of Justice to prosecute Palestinian terrorists who murder American citizens abroad. "I want justice," DeSantis said, noting that the United States extradites terrorists from other countries who murder American citizens.

DeSantis is the first U.S. politician to publicly recall Malki and the travesty of justice we have been battling since the nefarious Shalit Deal of 2011 released mass murderer Tamimi from Israeli prison.

Here's hoping his words will herald a wave of pressure by the U.S. on its so-called "ally" Jordan. 

The Trump administration's effusive embrace of King Abdullah is no less misguided and immoral than its relationship with Saudi prince, Mohammed bin Salman.

A birthday plea for justice

My Malki

Today is my precious Malki's birthday.

It is amazing how the yearning to hug her, stroke her silky hair, kiss her, bask in the warmth of her perpetual smile, tell her how much I love her, just never wanes.

Fifteen when she was snatched from us, Malki would have been 33 today.

She probably would be married and I would be busy helping her out with her children while she worked in one of the para-medical fields as she told me she'd like to. She may, on the other hand, have pursued a career as a musician - she was a magnificent flautist who brought tears to my eyes with her playing.

Instead we have only the pain that our memories of her conjure and the agony of knowing that her murderer is alive, free and thriving. 

Thanks to the despicable Shalit Deal inflicted on us in October 2011, Ahlam Tamimi, self-confessed mass-murderer is married to her cousin, murderer Nizar Tamimi, a fellow Shalit Deal releasee. She resides in Amman, ardently protected by King Abdullah II. 

What a blow it was to witness her release from prison by our own leaders. Then to endure the release of her fiance, now husband who was, according to Israel's conditions under the Shalit Deal, prohibited from exiting the West Bank. But the pair wanted to unite and marry. So our government obliged them - after assuring my husband and me to halt our appeal to the High Court to bar his release. We were assured that it was unnecessary. 

Hours later, we learned we had been betrayed again. Nizar had crossed the Allenby Bridge into Jordan a couple of days earlier, probably hours after we filed our High Court papers.

Now we must also suffer the embrace of Jordan's king by the US administration. Since our Malki was a U.S. citizen, the U.S. has indicted Ahlam Tamimi, demanding her extradition. But the king has refused to comply, brazenly flouting an extradition treaty between the two countries, extant since 1995.

How has the US reacted to the Jordan's defiance? Hmmm - not exactly as you would expect.

In the past two years, it has embraced the king as an honored guest and partner seven times! It has praised him for his steadfast fight against terrorism! It has showered him with military and financial aid!

Not once has any member of the administration rebuked him for shielding a murderous terrorist. Not once has the FBI's demand for extradition been restated by the State Department or by the White House.

And so this embodiment of evil continues to incite her fans throughout the Arab world.

Last month, the Tamimi couple were guests on a popular Jordanian TV talk show. Ahlam spread her venom. Addressing the students in the audience, she said: 

"You - it is vitally important that you undertake a variety of actions so that you can "live" the Palestinian problem... direct our words toward the Zionist Entity saying 'No! to the matter of the Palestinian prisoners; there are consequences not only within Palestine but also extending out to Jordan, to Tunisia, to the entire Arab world."

On Malki's birthday, please do whatever you can to raise awareness of this travesty of justice. Help us return this murderer of fifteen men, women and children - once sentenced to sixteen life sentences - to prison, the one place she belongs.

November is Caregiving Month. Why it matters in Israel.

Image Source

How nice. The United States has given us our own month.

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

Now that's so vague, it begs an interpretation. So here's mine:

Galvanize and supercharge the public - enlist them as supporters of Home Caregiving.

So, here goes.

You may be one of those swayed by Aleh's line. Their PR team may have convinced you of their indispensability. You may now share their conviction that our population of people with disabilities could not survive without Aleh's existence - or would suffer irreparable injury if were eliminated.

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

But I have learned that the above version is a far cry from the truth. Aleh, Israel's largest chain of closed institutions for people with disabilities, actively solicits residents. 

It literally urges struggling parents to give up their children. Its staff assuages parents' concerns about the negative effects of institutionalization, reassuring the hesitant that they can "remain parents" even after abandoning their children. They assure parents they will be free to visit their children at any time, noting one mother who stops by the Jerusalem branch nightly at bedtime to see her child. They concede that handing over a child is "a difficult process" but ultimately worth it: "You will get back your life" once it's done.

Screen shot from this YouTube video

These promises are made without any knowledge of the child's disabilities or of their severity. One parent was actually phoned by the director-general of the Aleh enterprise, Rabbi Yehuda Marmorstein, who encouraged him to hand over his daughter shortly after the passing of the child's mother. That father relates the phone solicitation on a video proudly publicized by Aleh on its website.

Here in Israel, the belief that caring for children and adults with disabilities within large, closed, isolated institutions is ideal, is gospel. Even organizations that champion the rights of people with disabilities don't tackle this challenge unless blatant abuse of residents has been exposed. And that, as we all know, is not easy. 

Staff members worry they'll lose their jobs if they turn whistle-blower. Parents are fearful their children will suffer consequences if they speak out.

So, as I said, if you have succumbed to Aleh's PR that is understandable and you are not alone. But outside of Israel, it's an entirely different story.

Institutionalization is consistently maligned. For instance, here is a NY Times opinion piece from last week ("The Lasting Pain of Children Sent to  Orphanages, Rather Than Families") highlighting the enormous gap between Israel and the rest of the developed world:

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

Why is Israel treating its children with disabilities as if it were a poor country? The fact is that the government gives tens of millions of dollars annually to Aleh institutions. Here's how they say it on their website:

Q. What is ALEH’s annual budget?
A. ALEH’s operating budget for all four facilities is about $30 million. The Israeli government provides 85% of that sum, while the rest is fundraised by ALEH through private contributions. This amount does not include capital development projects, which receive 50% funding from the government.

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

As the NYTimes piece points out, many well-intentioned people help sustain institutions by volunteering in them. That support, dubbed "voluntourism" is actively solicited by Aleh, which repeatedly posts profiles [here for instance] of overseas volunteers who have who have worked there.  Over a dozen such volunteer "testimonies", as Aleh calls them, currently appear on their website.

And more, from that NYTimes piece about volunteers:

“Millions of people volunteer abroad every year — students, taking-a-break students, church members. Often they go to provide care and affection to children in orphanages. ...But such volunteers might be doing more harm than good... Volunteers from rich countries make children’s lives worse in two ways. One, paradoxically, is by hugging them. By definition, every child in an orphanage has been abandoned. Their attachment issues get worse with each volunteer who showers them with love for a week or two — and then flies away.Volunteers are also perpetuating a system that takes children from their families. The word “orphanage” is a misnomer, because the vast majority of children in orphanages have at least one living parent. These parents give up their children because they are too poor to care for them. What drives the growth in orphanages isn’t motherless children. It’s donors and volunteers from countries that don’t use.”

So in November, make your voice against institutionalization heard. Support Israel's parents who want to care for their children with disabilities at home but who find that the system abandons them. With subsidized caregivers and therapies, many of us who institutionalize our children would keep them at home.

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

Our daughter's murderer - live on Jordanian TV yesterday

Here they are: Nizar and Ahlam Tamimi, seated so properly and civilly in a Jordanian TV studio yesterday, smiling so congenially, hands primly placed in their laps.

Who would guess that this is one of the most evil, bloodthirsty, terrorist couples alive today? 

If we, the parents of one of their many victims, would not remind the world that the path this pair has chosen is that of mass murder, would anybody know that? Would anybody care? 

Thanks to Prime Minister Netanyahu's misguided Shalit Deal, they have been enjoying a life of comfort and happiness under the paternal protection of Jordan's King Abdullah II. 

He is perpetually lauded as a "trusted ally" of the West in their struggle against global terrorism. Somehow his refusal to heed the US's demand for her extradition - since several of her victims were US citizens - hasn't ruffled anybody's feathers. 

But our determination to see her brought to justice is strong.

A hospitalization journal

Sunday, October 7

I'd hoped we could keep these hospitalizations annual - but it was not to be. Yesterday, a half hour after feeding herself a big meal with gusto, Chaya vomited it up in its entirety. Afterwards she copiously vomited liquid every couple of hours.

We tried caring for her at home administering Pramin suppositories - acquired from a local gemach  - as her pediatrician advised. He said that without fever or diarrhea the likelihood of dehydration was slim. But the Pramin had no effect. Horrific doesn't come close to describing that night. 

By morning, there were strands of brown blood in the vomit rendering the question of "what to do" a no-brainer. So here we are back in the ER, 11 months after Chaya's last hospitalization. 

So far, she's weathered a chest x-ray and a 12 hour struggle to get urine via a catheter (an incredibly incompetent nurse couldn't get any urine even though Chaya's on a fluid drip. The next shift's nurse collected it with ease. The consensus: it's another UTI. 

This leaves us at a loss as to how to prevent them. We had to stop giving cranberry juice several weeks ago because that seemed to cause vomiting. Should we now resume that, perhaps in a more diluted form?

Tuesday, October 9

Here we are, finally, in a proper ward (where we waited several hours in the corridor for a room):

The doctors' diagnosis has done a 180: UTI is now negated and replaced with "some infection, somewhere", possibly gastroenteritis. Presumably that triggered aspiration of vomit since the blood test results indicate infection. The profuse vomiting may then have caused intestinal bleeding which appeared in her vomit. 

She's still getting IV Controloc (pantoprazole) to prevent a repeat of that bleeding although there's no sign of it anymore, not even in her stools.

Bumped into that neurologist who we concluded had dumped us when she ignored our last email. Apparently she never saw it and is happy to resume her role as Chaya's neurologist. While she's pleased we consulted that senior epileptologist she recommended, she warns that getting regular appointments there won't be easy.

So she promptly ordered a CT and an EEG for Chaya. She also assured us she'll contact that terrific American neurologist whom we encountered during last November's hospitalization. He's the doctor who rescued Chaya from the avalanche of drugs that had reduced her to semi-comatose. 

I may have mentioned here that we can't contact consult him directly because he doesn't have a practice; this neurologist who will be our conduit to him decided to search for info about central fever and told us she learned it's not uncommon among uncontrolled epileptics!

Chaya is now off the IV drip and has begun to eat and drink. She's back on her Vimpat which was only available in pill form. (They had Keppra in IV form, so she's been getting that regularly). But I haven't resumed the cannabis yet.

We've missed hydrotherapy - Chaya's pinnacle of pleasure - which takes place on Tuesdays. We may also miss the long-awaited delivery of Chaya's new wheelchair scheduled for Thursday.

Wednesday, October 10

Back on the drip because, after a batch of heavy seizures, Chaya was unable to eat and could drink only a bit. A CT was done this morning. Not clear why it was ordered but haven't heard any results yet in any case. UTI has been ruled out even more emphatically today. It's not looking as though we'll have C. home in time for the wheelchair delivery tomorrow.

And here are a couple of gems from the medicos...

Nurse about to finish her shift comes around with next shift's nurse to do what is known here as חפיפה (= passing the baton). I hear her mention that she had taken Chaya's temperature which was slightly elevated but that she decided against Tylenol. I told both nurses that she is seizing badly and could actually benefit from Tylenol for her fever. Then the nurse about to leave delivers her pearls of wisdom: "You see, she's seizing badly because her epilepsy isn't controlled. It needs to be brought under control. She needs to see a neurologist." To me: "You should consult a neurologist." 

I regret that I didn't ask her: "Why? Do you think she might have epilepsy?"

Wednesday night, October 10

I witnessed an argument between two doctors at the station which was situated immediately outside our cubicle. I had the curtain open so couldn't avoid seeing and hearing one, a male , tell the other, a female: "You're a hussy". The other responded: "Well tell me, do you know the patient's background?" "You ought to tell me it", snarled the guy back at her. "No, you're supposed to know it," she repeated. "Why don't you just do your job?" The guy shot back adding once again: "You're a smart-ass." 

Help! So many lives are in the hands of these nincompoops.

That same male doctor had earlier declared to my husband as he saw him approaching: "Whatever you're about to say, I'm not interested unless it's urgent. I only deal with urgent matters."

Thursday, October 11

Chaya will be released today. Didn't see that coming. The CT negated anything alarming and the EEG showed no change since the last one.

While she isn't eating or drinking much, I nixed the nurse's suggestion of a feeding tube. On Tuesday, a speech pathologist assessed Chaya's swallowing skills and they passed muster. So I figured it was best to just persevere with feeding by mouth. Minimize intervention is our credo.

Thursday night, October 11

Home! And, the icing on the cake is that the new wheelchair is here too! Here is Chaya, sitting in it for the first time:

Next up: Aleh actually encourages parents to give up their children to its institutions. It does so via its new Hotline. No wonder that hospital staff repeatedly asked us about Chaya: "Where does she live?" And were surprised by our response.

Mastering the art of gripping and dropping

Occupational therapy sessions entered Chaya's life about two months ago.

Scheduling them isn't easy because both Elvie, her caregiver, and I want to be present and Chaya must be seizure-free. 

We've already had one fiasco - Chaya in the throes of a string of seizures when the therapist arrived. (I had called to notify her but she was already on her way). 

But her other sessions were rather productive ones. 

Over on the right is C. getting her ligaments gently stretched at the session's start to increase her range of movement.

And below is a photo of her gripping an object while our therapist, Neria, shakes her hand. She is improving at closing her hand to grasp an object and then, on demand, opening her hand to release it. 

Modest goals, but they elicit bravos from all three of us - the therapist, C.'s caregiver, Elvie and me. 

You've got to admit, we're a realistic bunch.

We had about two weeks of relative relief from seizures (i.e. about three a day) which I attributed to the rise in the night-time Vimpat dose. But here we are after raising the morning dose too and the seizures are back with a vengeance. 

We still haven't managed to check the Keppra blood levels. So maybe therein lies a solution.

The Kupat Holim (health fund) nurse tells us that test will only be available after Sukkot.

No hydro photos because the therapy pool is also closed until after the chagim (the Jewish festival season).

Finally, we are excitedly awaiting delivery of Chaya's new wheelchair on October 8.

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.

Light at the end of the wheelchair tunnel

Chaya sliding out of her current wheelchair

I am  happy to report progress this week on the wheelchair front.

For six years, Chaya has been suffering in her current one. It was the brainstorm of a physiotherapist at Chaya's old school who was the designated seating "expert". She alone selected it and all its accoutrements.

And we, never doubting her expertise, purchased everything she recommended. Trusting her title was deserved, we blindly followed her advice.

From the day it was delivered to us, Chaya has been sliding down in her seat, particularly after a seizure. Like in the photo on the right.

When my  husband is away from the house, I am forced to leave her in that uncomfortable position because I'm not allowed to lift her weight (lest I wreck my pelvic organ surgery).

The bureaucratic phase which involved an assessment at Alyn, followed by reams of paperwork that that the expert person there, other professionals and we were all required to submit to the Ministry of Health. So we are eager to finally acquire this new Italian wheelchair which promises to prevent sliding via its slight tilt backwards.

According to the importer's representative who brought a demo chair to our house, this tilt will also readjust pressure spots, thereby relieving the ones by which she is sometimes plagued. He assured us there's a good chance we'll have the new wheelchair delivered by the time my husband leaves for his brief overseas trip in November. Hoping hard.

On the swing front, no such good news. The local person we've been referred to by the overseas manufacturer is on vacation now. But an associate of his told my husband that in the past they've encountered opposition from another municipality, similar to the sort ours dished out.

The tip of her tongue sticking slightly out, as it is in this
photo from the hydro pool, is how we know when Chaya is feeling happy

Her impression was that some folks there simply don't want children with disabilities frequenting their playgrounds.

I managed to attend C.'s weekly hydrotherapy session yesterday.

Normally I'm with grandchildren at that hour so Elvie, her caregiver, is with her on her own and sends me photos and videos. But seeing it in real time is such a very uplifting experience. The pool is still the only venue in which Chaya thrives.

Yesterday she seized right before entering the pool and right afterward. But during those 35 minutes of floating, she radiated calm and contentment. We were even treated to several of her "smiles" - the tip of her tongue sticking out as the photo above shows.

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.

Family befuddlement

Image Source: From the Aleh website

Aleh really needs to choose the definition of "family" that it prefers.

Sometimes its PR folk refer to "the parents and siblings of residents in Aleh institutions" as family - see this piece posted on its website.

At other times it uses "family" to connote the relationship of staff at Aleh to their charges. See "Aleh Bnei Brak takes a trip to Aleh Negev".

Aleh, time to stop straddling the fence.

If residents of your large, closed institutions do indeed have families somewhere - and in all likelihood they do - then those are their families. Period. The staff and volunteers at Aleh are just that.

Remember, Lumos statistics show that:

"Of the 8 million children in institutions worldwide, more than 90% are not orphans.Most have families who love them and want them but they are driven into institutions because of poverty and discrimination on the grounds of disability or ethnicity."

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.

The injustice, the ache: A reflection on seventeen years of loss

The short essay below appeared in The Times of Israel early today under the title "A travesty of justice and its tentacles".

Today, August 9, we mark the second year in which we have been bereft of our Malki for longer than we were blessed by her presence.

No matter how often and intensely I think of her, the treasured memories progressively fade. That in itself is a painful realization and conjures up for me these words from the poem “Perhaps,” by one of Israel’s greatest poets, Rachel:

"Perhaps those things never happened at all… Did you exist or was I dreaming?" (my translation from the Hebrew source).

Some have advised that when I remember Malki on her yahrzeit, I ought to focus solely on her, on her wonderful traits, her generosity, her contagious smile, her boundless joy, her incredible flute-playing musical talent, her devotion to her profoundly disabled sister, her love for her family and for her nation.

But I have done that so often and it aches too much.

Now I prefer instead to highlight the fresh layer of suffering that was added to our grief in 2011: the travesty of justice inflicted on us by the so-called Shalit Deal when Ahlam Tamimi, the murderer of our Malki and of fourteen other Jewish innocents, was freed.

That evil woman is living a happy, fulfilled life in Amman. Since being let loose in Israel’s catastrophic deal with the Hamas terrorists, she has married and become a mother. She boasts tirelessly of her “successful” terror attack and has repeatedly incited others to emulate it. 

Jordan’s King Abdullah II and his government have facilitated this by looking on passively while for five years she recorded her own weekly show on the Hamas TV network and as she traveled freely to address adulatory crowds in Jordan and throughout the Arab world.

This travesty of justice has grown tentacles. First, a year after our own prime minister released her, he violated the conditions he himself imposed on the release of Tamimi’s fiancé Nizar Tamimi. (He too is a convicted murdering terrorist who was freed in the Shalit Deal as well as being her cousin). Our government asked us then to halt our High Court petition for an injunction against the cousin/groom being allowed to cross from the West Bank to Jordan. We acceded – it was our own government’s request after all.

We soon learned to our horror that he had been permitted to cross the Allenby Bridge three days before.

Days later, we saw photos on Arab sites of the Tamimi murderers’ wedding. A jubilant affair, it was attended by a large crowd that included the now famous and revered Ahed Tamimi – a cousin to both the bride and the groom and now referred to as the Palestinian “Joan of Arc”.

Because Malki had American citizenship like two other victims, an important American law – called US Code Title 18 Section 2332 – gave us an opening to go after Tamimi.

What followed were years in which US law enforcement officials assured us they were “working on it.” Finally on March 14, 2017 we learned from them that a criminal complaint against Tamimi was being unsealed that day and her extradition by the Kingdom of Jordan was being demanded.

The travesty of justice expanded almost immediately.

King Abdullah refused to extradite Tamimi despite a duly signed 1995 treaty between the two countries. Among his court’s excuses was the contention that the signed treaty was never ratified by his parliament and that it therefore infringed their constitution from the day it was executed. In-depth investigations have proven that these excuses have no basis in reality. Jordan has extradited several Jordanian criminals to the US in the framework of that “unconstitutional” treaty.

Finally, this travesty has tortured us with the reaction – or more precisely, absence of reaction — by the US and Israel to Jordan’s defiance. Both countries have not only maintained but have nurtured their friendships with King Abdullah and his wife. Clearly, the political and economic fruit that accrue to those Western leaders from this chumminess outweigh for them the pursuit of justice.

So please spare a moment to remember not only the massacre at Jerusalem’s Sbarro pizzeria of August 9, 2001 and the precious 15 men, women and children who perished there. But also the outrageous political machinations that followed. 

Help us achieve the justice those victims deserve.

My words at the gravesides of Malki and Michal

What follows below is an English translation of what I said in Hebrew at the modest annual remembrance at Jerusalem's Har Tamir cemetry, standing beside the adjoining graves of my murdered daughter Malki and her closest friend Michal Raziel on August 1, 2018. This was the anniversary, according to the Hebrew (lunar) calendar of the massacre in which their lives ended.

Despite the passage of years and the fading of memories, our pain over the murders of Malki and Michal retains its intensity.

As I have done each year, I mustered up the courage this week to listen again to my daughter Malki's voice. Through her incredibly detailed diary from the last year of her short life, she continues to speak.

I happened upon the entry below. She wrote it two days after a pair of young Jewish women were  murdered en route to the funeral of another terror victim.

From Malki's diary

"In our home-room lesson, I couldn't concentrate. Everything that's happening with this "situation" (המצב - referring to the Second Intifada) really threw me into a deep depression and I was terribly sad. Avigail didn't come because she went to the two funerals and couldn't get out of it. In English lesson, I left in the middle with Shira F. and Miri and we spoke. Shira told us about yesterday's funeral. She spoke in a dreadful manner. She planned her own funeral with us. She says she told her mother that she doesn't want any reporters at the funeral and that she should organize buses with bullet-proof windows so that we can attend. We tried to silence her. It was very frightening."

Of course, it was chilling to read these words.

An additional layer was added to our torment in 2011 when our leaders released Malki's and Michal's murderer and it too has not abated.

Currently, both the US and Israeli governments ignore the fact that the King of Jordan protects that mass-murderer and refuses to extradite her in accordance with the US Justice Department's demands [announced in March 2017 and pursuant to a long-standing treaty between Jordan and the US.]

The two countries maintain friendly, even warm, relations with him despite his granting refuge to an evil villain who has repeatedly confessed and boasted of slaughtering fifteen Jews. Arnold and I have been  tirelessly pressuring the relevant authorities to transfer her to an American court for trial and ultimately back to prison.                       
Our struggle elucidates the Torah's exhortation in Devarim (Deuteronomy), 16:20:

"Justice, justice thou shalt pursue". 

It seems that the word "justice" is repeated because its attainment may often be an uphill battle, demanding perseverance and repetition of efforts over time.

We pray that we will eventually merit the attainment of justice for our precious Malki and Michal.

Urinary Tract Infection - Take Two

A fortnight ago, Chaya treated us to some more spikey fevers. So it was off to the pediatrician again. While in the waiting room, I snapped a shot of a painting I did and which I gave the doctor many years ago in gratitude for his unflagging devotion to Chaya. He's hung it right next to a Mary Cassat. His generosity know no bounds.

But we could have avoided that trek to his clinic since he suspected it was a return of C.'s Proteus Mirabilis (a version of UTI - urinary tract infection) as soon as he heard she had high fevers without any apparent symptoms. I wrote about it here: Mea culpa.

But when I called her in advance of bringing Chaya to her, the nurse at our Kupah clinic was extremely reluctant to take a second catheter-urine sample. She had done the one preceding the first round of Proteus M. and it was smooth going. 

We now had an explicit written request from Chaya's doctor that she repeat it. But she expounded on the risk of catheter-introduced infection and how those fevers could be from aspirational pneumonia (even though I assured her she had no related symptoms. She stressed that a physical exam should be done first. 

I wasn't a match for her. But when I related all that to our perenially sweet doctor, he was truly pissed off. "I hate to pull rank, but..." was his response.

Anyway, a long story short, as I said, Chaya was thoroughly examined and no symptoms were found. The following day,  the nurse took up her catheter for us. 

Chaya has now completed her course of Zinnat. The new challenge is preventing another recurrence. A few of the doctor's tips: Don't let her become constipated (who knew that could trigger a UTI?);  keep her well hydrated; give her cranberry juice.

We have a neurologist's appointment lined up for this week which Arnold arranged. We'll probably go without Chaya just to discuss the meds she's on. Since they aren't delivering any more control than we had prior to her hospitalization back in December 2017 (for status epilepticus), I am keen to lower the Keppra and remove the Vimpat. That was her pre-hospitalization regimen.

I am dreading this encounter with the neurologist because she was one of the doctors in the hospital back in December who bombarded Chaya with meds to the point of semi-consciousness and was prepared to release her in that state. The hitch is, though, that we can only access the wise neurologist who saved her from all those meds via this neurologist. The wise one doesn't treat patients outside the hospital ward.

And who would have imagined that the ubiquitous but unnoticed straw would one day become a contentious item? And central to the fight for disability rights too? Well, that day has arrived. The issues are explained here.

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.

Hypocrisy reigns when Jordan's king visits

Image Source

King Abdullah II of Jordan is a welcome guest at the Trump White House. He is also a popular host of senior U.S. officials including Vice President Pence and Jared Kushner.

Tomorrow (Monday June 25, 2018), he will hobnob with the president at his second official visit to the Trump White House.

Topics of discussion according to an official U.S. announcement will be "issues of mutual concern, including terrorism, the threat from Iran and the crisis in Syria, and working towards a lasting peace between Israelis and Palestinians".

As usual, the hypocrisy of the king will be studiously ignored. The fact that he is harboring our Malki's killer, mass-murdering Hamas operative Ahlam Tamimi, will not be raised. Nobody from the Trump administration will challenge Abdullah's refusal to extradite Tamimi despite the Department of Justice's explicit demand that he do so after her indictment in March 2017. 

No mention will be made of the extradition treaty signed by Jordan and the U.S. in 1995 - a treaty implicitly recognized by Jordan when it extradited fugitives to U.S. custody on three separate occasions. One of them was convicted on terrorism charges just a few weeks ago.

My Malki and another of the fifteen victims of the Sbarro bombing executed by Tamimi in 2001 were citizens of the U.S. A third U.S. citizen has been comatose ever since the attack. 

Tamimi has confessed and boasted in gory detail on camera about the attack she planned and carried out. She was convicted in an Israeli court and sentenced to sixteen consecutive life terms. But in 2011 she was freed in a deal foisted on Israel by Hamas. 1,027 terrorists, including hundreds of convicted murderers, were handed by Israel to Hamas in order to retrieve a single kidnapped Israeli, Gilad Shalit.

During the seven years that Tamimi has been free and protected by King Abdullah, she has tirelessly incited Muslims to emulate her and commit fresh acts of terrorism. She has flown throughout the Arab world to address her fans and spread her evil message.

"Justice, justice pursue" is the Bible's exhortation that has driven (or "impelled") my husband and me. We have written, worked the phones, reasoned, argued and pleaded. But all for naught. Because King Abdullah, it appears, reigns not only in his kingdom. He reigns in the U.S. as well.

As long as King Abdullah is embraced by President Trump's administration, is hailed as an enemy of terrorism, is allowed to violate the extradition treaty he signed - only one clear message can be gleaned: my Malki's life does not matter. Putting her murderer behind bars does not matter. My own right as a U.S. citizen to justice does not matter. 

What does matter, it seems, is buttressing the Jordanian king and prolonging his reign.