Wednesday, July 11, 2018

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.

Sunday, June 24, 2018

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.

Wednesday, June 20, 2018

Mea culpa

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

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

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

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

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

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

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

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

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

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

Friday, June 1, 2018

From bluster to blunder

JK Rowling of Lumos [Image Source]
It was bound to happen eventually. When you churn out the PR bluster ad nauseum, the occasional blunder is unavoidable. 

So when the team at Aleh related how the recent Gazan missile barrage impacted residents of Aleh Negev, they described that institution as "the only birth to death residential facility in the world for those with the most severe special needs" [archived here in case it disappears].

The wording is so egregiously grotesque and crass that I am baffled to see nobody at Aleh has scrambled to delete it. As I type this, it remains posted on their partner's Facebook page.

Aside from the abysmally poor choice of words, the claim that there is no such institution anywhere in the world is also puzzling. There are plenty of such warehouses in impoverished third world countries. Lumos, J.K. Rowling's organization ("Children belong in families, not orphanages") endeavors tirelessly to close them all down. 

True, such warehouses have, for the most part, already been eradicated in the rest of the developed world. But is Aleh truly conceding that its dumping ground for children with disabilities is the last one of its kind extant in the enlightened world? 

If so, then I must pronounce them, this once, truthful to the point of self-indictment.

Thursday, May 24, 2018

Two absurd Aleh activities and a swing update

From the swing-maker's website
I haven't abandoned that dream about a special swing for children with disabilities ["The pilot project"] but have hit a bureaucratic snag. I can't even get to first base - approval from the municipality.

I'd been instructed by a representative of the parks department to first submit a written description of the swing I'd like to donate through crowd-sourcing, its cost, the location of my choice, and whether I'd like to dedicate it to somebody specific. I complied and their response was the following (my translation):
Equipment of this sort has never been installed in Jerusalem. We need to examine the technical details of this item of equipment and determine whether the municipality will be able to maintain this type of equipment. Only after examining the above topic and receipt of authorization from the relevant bodies will it be possible to install such a swing and to maintain it. We will be in touch with you in order to survey possible optimal venues for installation of the swing.
Hmmm. Given that two such swings already exist in Hadera and the swing maker's website lists 215 installed sites worldwide not including the two in Israel, this gobbledygook was upsetting, to put it mildly.

I read it as: 
"We're not interested in your offer. It's a nuisance. So please go away and come back - never."
Not giving up yet on this minor dream. We've arranged to meet with the Israeli distributor of this swing on Monday in a local cafe. Hope he will get us beyond this impasse.

On the Aleh front, I was infuriated, as I usually am, by a recent PR piece [here] posted on their website. It seems that a platoon of well-intentioned Hareidi girls studying in Israel on a year program at Beit Yaakov Seminary have been visiting children who live in Aleh. They stand beside their beds at night in order to recite the nightly prayer of Sh'ma Yisrael - Hear O Israel. The PR folks referred to this as an act of "motherly love". They gushed that the girls are "imparting to them the warmth and love of home and belonging". 

Now really. Please. These children may have "complex severe disabilities" (that's Aleh's favored term to describe its residents) but even they can distinguish between strangers visiting briefly to recite a prayer - and a mother's love. They may not have been home for years but even they are aware that the large, cold institution they are warehoused in is not their home.

And while we're on the topic of ill-conceived projects at Aleh, let's segue to Aleh's "Prisoner rehabilitation program". I hadn't seen any mention of it for about a year and had hoped that perhaps they had finally come to their senses and phased it out. Then last week Aleh touted it anew here.

So I feel obliged to reiterate some of what has been learned about this utterly absurd project. See for instance these earlier posts: "Can Aleh get its prisoners story straight?" (December 13, 2016) and
"More things we ought to know about Aleh" (December 2, 2016)

The prisoners - referred to as "detainees" in the recent piece - are permitted one-on-one contact with our most vulnerable citizens. They are free to remove their prison garb and circulate on the grounds of the institutions in civies which obviously makes it that much harder to notice and supervise them.

They are not ex-convicts. All are still serving prison sentences - some have been incarcerated for as long as seven years in a country where sentences for serious crimes are notoriously short. They are forbidden contact with female and minor residents of the institutions and are barred from the hydrotherapy pool.

All of the above information was gleaned from Aleh's own news releases about the program! All of those releases insist that these criminals are perfectly harmless.

I have also consulted independently with the International Corrections and Prison Association (ICPA, a non-governmental organization in Special Consultative Status with the Economic and Social Council of the United Nations) and with the spokesperson for the Israel Prison Services. Both assured me that they know of nowhere else in the world implementing this hair-brained project.

And, needless to say, nowhere in Israel's schools for children without disabilities have any criminals - please let's call a spade a spade - been invited to work with the pupils.

The following is from Aleh's recent piece about the program:
Lieutenant General Ofra Kleiner and senior management staff were recently welcomed to ALEH Negev-Nahalat Eran, setting yet another milestone in the long-running relationship between the village and the Israel Prison Service. Collaboration between the two organizations is mainly expressed via the prisoner rehabilitation program, in which inmates from various southern penal facilities volunteer at ALEH Negev-Nahalat Eran, arriving on a weekly basis to work with residents.
Notice the phrase "mainly expressed". Of course that has me wondering what other activities this "collaboration" entails. That remains to be discovered.

Friday, May 4, 2018

The pilot project

Apart from the swing, we also await the launch of that pilot project to which Chaya has been accepted, organized by a unit of the JDC. It will enable us to provide her with our choice of paramedical therapies at home.

The funding for those services will follow the person with the disabilities rather than the therapists.

This is the model that we are advocating for all in order to facilitate de-institutionalization and the closure of warehouses like those of Aleh. 

For now, Chaya receives one session of hydrotherapy per week. But it remains the the highlight of her life. 

Here she is floating, kicking and obviously reveling in the hydrotherapy pool this week.


From vendor's website
I finally received a price estimate for the Liberty Swing (mentioned here) from the Israeli distributor - a staggeringly high price. I included that detail in the proposal I sent yesterday to the Jerusalem Municipality as I was requested to do by the Parks Department. 

I am impatiently awaiting its installation and already envisaging Chaya swinging in it. Probably not advisable since I'm certain this will prove to be a long, drawn out process.

The distributor also informed me that two such swings exist in Hadera and two more have been ordered by other Israeli municipalities. 

But if that sounds impressive, here's what a fellow blogger with a daughter who is disabled wrote me: 
"We have many of these accessible playgrounds here in Los Angeles. I actually have one of the swings in my backyard -- I wish your Chaya could come over and use it."
Me too.