Monday, May 30, 2016

Groping in the dark

Here we are, Chaya and I (my hand, that is), both struggling. She, to move her fingers on the board and elicit sounds. I, to prod her to do that. At times we both succeed. Ever so slightly.

In the world of profound disability, the minutest movement is welcome. But sometimes even that eludes us, as you see here.


I'm really just groping in the dark, applying whatever meager Occupational Therapy skills I've gleaned from professionals over the past twenty years. It can be an exercise in frustration and futility.

The OTs at Chaya's school are in the same predicament. They may very well succeed with the less severely impaired children. But when confronted with Chaya and those like her, they seem to be clueless. In the fifteen years she's attended that school, they've achieved nothing with her.

I know that there are OT's out there whose expertise lies in working with profound disabilities. My husband and I once hired such a team for an hour at great expense. Chaya's school lacks the funds to employ them and we couldn't afford to bring them back to our home.

But our government clearly can. If it re-channeled just a fraction of the multi-million dollar budget it lavishes annually on Aleh, to children with disabilities who live at home, this problem would vanish. And Chaya might actually press the buttons on her toy board.

It's that simple.

Sunday, May 15, 2016

On prizes for caring for special children

(PBS image unrelated to the people in this article)
Last week, on Yom Ha’atzma’ut, Doron Almog, a general in the IDF, was awarded the Israel Prize for lifetime achievement. I have already reacted to that pretty heatedly here [“Israel is in love with institutions”] and here [“The Israel Prize: More about the strange choice of recipient”] and here [“Institutionalization: Why Does Israel Continue to Be Infatuated With This Cruel and Archaic Approach?”] so I won't elaborate this time.

Suffice it to say that the award was yet another nail in the coffin of inclusion of Israeli children with disabilities by buttressing our entrenched system of insitutionalization of that segment of our population.

I will, however, suggest a man who, I believe, is more worthy of that prize.

He is the subject of an article by Alon Idan, Opinion Editor at Haaretz. It appeared last weekend [“ילדה זה לא סוכריה על מקל”] in Hebrew. I translated it today and I am confident you'll agree it is hands-down one of the most moving pieces you have ever read. 

The anonymous subject of the piece demonstrates a devotion to, love for and commitment to, the inclusion of children with disabilities. In fact, compared with this year’s Israel Prize winner, it’s arguable that there really is no contest.

A child isn’t a lollipop
By Alon Idan – originally published in Haaretz (Hebrew), May 5, 2016
(Translated by Frimet Roth)

He looks at me for a moment as if he wants to say something but immediately lowers his eyes. I notice that on his left knee lies the head of an adolescent girl. I walk back to the bench I had been sitting on.

“Listen...” he is nearly stuttering now, a few seconds later, “Can you perhaps help me?” I tell him yes but don’t understand what help he needs. “I need you to help me hold her,” he answers looking in the direction of the head that is resting on his left knee.

We are outside the ultrasound rooms in a hospital with people lying on beds scattered along  the length of corridor, most of them old, wrinkled,  eyes stricken, but the head  lying on his knee is the head of a young pretty girl. I ask: “Help holding her?”

He nearly apologizes: “She is mentally retarded, she doesn’t speak at all and the last time they wouldn’t x-ray her because she got wild, and everything she eats she immediately vomits up, for a long time now, and I must have her x-rayed, must.”

He’s her father and is over the age of 50, and he’s an Ethiopian immigrant from many years ago and now sits alone on a hospital bench, and his daughter is lying on his left knee, and when he speaks about her in a mix of apology and pleading she suddenly raises her head, opens her beautiful eyes and looks at him, and afterwards at me, and says nothing.

He has an orange hat, and under it is a man who works every day in a hotel, the night shift, always the night shift, “so that I’ll be able to be with her in the mornings and afternoons until my wife returns from work.” And he returns from his shift at 2 at night and falls asleep on the sofa beside her. “I fall asleep like this”, he demonstrates. “Sitting, I fall asleep sitting. There’s not much room in the living room, and I must be beside her at night, in case she wakes up suddenly and does something.”

An orange hat and a hand that is now resting on it, while I sit beside him and don’t know what to tell him. “It’s hard”, he suddenly says, his voice cracking, “This life is hard, very hard.” I nod, helpless. “It’s not a life.... nobody comes to us, and I don’t go to anybody, and everything revolves around the child.”

I ask him whether the State helps, and he answers that “there’s no state that helps like this one, but I’m not prepared to give her away, not prepared.” And then he says a sentence that he will repeat over and over again: “A child isn’t a lollipop, you don’t give away a child like that. She’s my child. Who will care for her the way I do? I will care for her as long as I am able to, until I die. A child isn’t a lollipop.”

The door opens and shuts but nobody looks at him. He begins to fear that I might need to leave. “I’m holding you up”, he says to me “I’m holding you up.” I say that it’s OK, he shouldn’t get stressed and he relaxes a bit. “You understand,” he continues, his hand rests again on his orange hat trying to crush it into his skull, “I don’t leave the house, only to work, it’s hard like this, it isn’t a life.” And a moment before I say to him that I understand – can you really understand? – he breaks: “There are no friends, nobody, alone all the time.”

A grown man, a child lying on his knee, now sits on a hospital bench and cries.

Presently they call him. It’s time for the examination. We walk towards the door: the father, his daughter and a total stranger. “Who are you?" the nurse asks me. And the father immediately cries: “He’s with us.” Why does he have to be with you, she asks and the father says: “Because she moves a bit and he’ll help us hold her.” “Hold her?” She’s suspicious and immediately determines: If it’s “a case like that” then the ultrasound can’t be done.

The father is stressed. He says everything will be alright, that his daughter must be checked,  just as a large-bodied janitor approaches us: “Come, come a minute,”  the father asks and the janitor doesn’t understand. “I need you to help us too,” he says, and the nurse looks on in disbelief. Suddenly, without asking, the father raises his daughter – long, thin and frightened like a baby – and simply lays her down on the examination bed. Before the nurse has a chance to object, he says: “You’ll hold her legs, and you’ll hold this hand and I’ll hold her like this.” The nurse is about to say something, apparently to object, but she never finishes the sentence she begins to formulate.

Lying on the bed in a darkened room, three men gripping her body, a strange device, perhaps painful, threatens to touch her – the child trembles from fear and begins to go wild. “Don’t be afraid, my darling” the father cries and caresses her face, “don’t be afraid, everything will be OK.” Now the janitor, his face large, a yarmulke on his head, his eyes moist, says to her: “Don’t be afraid, don’t be afraid.” I too join the plea, as her right hand struggles forcefully to escape my grip.

But the girl is still going wild and the nurse is still hesitant, and now the father strokes his daughter’s face again, repeating the words: “Don’t be afraid, darling, don’t be afraid.”

He stands directly above her, his head above hers, so frightened that the nurse won’t perform the examination. “Don’t be afraid, darling,” he continues; now it is truly a prayer. “Don’t be afraid darling”. But she continues to move, to go wild, to resist, when suddenly I notice tears trickling onto her face. The father is sobbing on his little girl. Sobbing onto her and begging: “Don’t move, please, don’t move, let her check you, you must be checked, please.” 

And the nurse, who can no longer avoid the sadness and the power and the beauty of life that coalesce in the tear drops flowing from the pure heart of the father to the frightened face of his daughter, immediately smears the gel on the girl’s stomach and places the scanner on her.
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Thursday, May 12, 2016

Two sisters

Malki, at the age of eleven, holding her
baby sister Chaya.
Malki was murdered in a
terror attack when she was 15.
While today is a joyous holiday for most of us, it is also the day following Yom Hazikaron for us. As such, it visits lingering grief, longing and anger on me and my family more intense than we feel every day.

Malki was so very unique and precious a child that having her snatched from us by the mass murderers Hamas and Ahlam Tamimi is a pill that sometimes feels too bitter to bear.

I am left with two hopes: that Malki will continue to be remembered for her goodness and talents by all who knew her and that she will see justice done in the near future. Her murderer, Tamimi, is free as a lark thanks to her release by PM Binyamin Netanyahu in 2011 as part of the outrageous Shalit Deal.

Until the day of her murder, Malki was a devoted sister to Chaya. She eased immensely the burden of raising such a disabled child in ways that I don't believe another teenager ever could.

I am certain that she too would be distressed by today's presentation of the Israel Prize to this country's single most passionate and successful proponent of institutionalization of children with disabilities - Doron Almog.

Here is a transcript of more of Almog's rationalization of founding the enormous institution "Aleh Negev" and depositing his late son, Eran, there at the age of 13. (The interview is from a YouTube video here, in Hebrew. I translated to English):
"Between me and Eran there is a deep discourse. He tells me: you could be ashamed of me like many other parents. You could put me up for adoption with a family overseas never to visit ,never to tell anyone, to hide the fact that you have a retarded child. If you do that you are the weak one of us two. Your being ashamed reflects on you, you are not a father for me, perhaps not even worthy of the title "human being". And because I'm really the weak one between us I need your protection..." 
Almog notes that
"there are more than a few parents who don't visit, though we make efforts to have them come; not a few are abandoned."
Almog never gives a number; "not a few" is deliberately vague. We are left to wonder whether perhaps a significant number of parents want no contact with their children. If that were the case, wouldn't Almog specify it? After all it would buttress his and Aleh's  premise that institutions are a necessity.

Clearly, it is minimal. The majority of parents want to love and care for their children. They simply find the burden overwhelming in their current circumstances. This has been Lumos' experience in far more impoverished countries than ours.

Here, with 85% of Aleh's annual $30 million budget [source] shouldered by the Israeli government, it is no wonder that mere pennies remain for the children who are living at home.

Like a thug who beats you up and then offers you a hankie to wipe away the tears, our government neglects children with profound disabilities living at home, lavishes multi-millions of dollars on institutions and declares to us: "There you are! A grandiose solution for your poor children!"

Wednesday, May 4, 2016

The Israel Prize: More about the strange choice of recipient

My daughter Chaya's first portrait as
a 21 year old: April 27 was her birthday
What a strange world we live in... said Alice to the Queen of hearts

* * *
Life in Israel these days is reminiscent of Alice's Wonderland

Since the Ministry of Education named him as a recipient of the 2016 Israel Prize, Doron Almog has been repeatedly interviewed on television and in the print media. This has afforded us all the chance to hear at length from him about his passion for the institutionalization of children with disabilities.

Almog does an exemplary job of rationalizing his life's mission. Speaking with pathos and interspersed with personal, heart-wrenching anecdotes, he makes a convincing case for the argument that closed institutions for our citizens with disabilities are the ideal care solution.

Not that he appears aware that there is an argument about it at all. The option of keeping these children with their families and  in our communities does not seem to occur to him.

In every interview, Almog's late, non-verbal son Eran "speaks" to him. Almog has him urging his father to act on his behalf as well as that of his fellow children with disabilities. We are then led to believe that sending his 13 year old son away to live in Aleh Negev fulfills that "request".

We are told that after fifteen minutes of Almog plugging his "dream" of a new institution in  Ofakim, that city's then-mayor asks "Is this intended for the retarded?" When Almog tells him that it is indeed, the mayor refuses because "It will devalue our real estate and the neighbors will complain".

So Almog opts for the middle of the desert where the mayor of Merhavim, Avner Mori, happily hands him one hundred dunams of land.

Throughout the video of this interview, we see footage of Almog cuddling and caressing children at Aleh Negev. It is abundantly clear that many of them are far from profoundly impaired. In fact, some simply have Downs Syndrome!  I know parents who adopted children with Downs and raised them with love and devotion.

Has the Ministry of Education ever considered those parents for the Israel Prize?

To be continued: more revelations from the Almog interviews.