My daughter's rough week and some thoughts from ALEH and UNICEF

Me walking Haya last night. That little
tongue sticking out is how she shows
she's feeling happy

It has been a trying week, Haya-wise.

It began on Shabbat with your garden-variety vomiting - distressing enough. That then progressed to vomiting containing dark brown liquid (i.e. raising suspicions of blood). For a while, she couldn't even hold down water. 

We seriously considered rushing to the ER as we have done in the past with such symptoms. But the thought of hours waiting in a crowded public hospital ER with Covid raging around us scared us off that option. So we grit our teeth - and for my part also cried. And kept on doing so until the symptoms improved somewhat. 

Haya's wonderful pediatrician was assuring throughout this period (and since her stools were blood-free, he eliminated a few concerning diagnoses).

Finally the vomiting grew less frequent, her fever at no point spiked and she continued to provide wet nappies. (She had around 38 degrees Celsius rectally every time I checked. Since she always tends to get neurological fevers of that level, it wasn't a helpful symptom).

We tried all week to get a Health Fund nurse to take her blood at home. We had provided the necessary documents and repeatedly stressed the word "urgent'. But to no avail. Various bureaucratic snafus prevented that from happening. 

Today [Wednesday] finally, we've been promised a home blood test tomorrow morning. Fingers crossed.

Friday Update -
The Nurse came! Blood test results were, thank G-d, fine.

Now, switch to a child like Haya, in this condition, living in an institution. 

I'm not sure she would have survived these days. My husband and I and Haya's daytime caregiver, Elvie, all worked hard to keep her hydrated, monitor her vitals and when she was capable, to stand and walk her. 

Which institution here would have been equipped to provide that care? Especially in this Covid era? Large, closed institutions are all short-staffed.

Even Aleh, Israel's foremost provider of institutionalization to children with disabilities, has announced the suspension of all volunteering in at least one of its facilities. Its Jerusalem branch is now advertising posts in absolutely every relevant field of employment.

They need caregivers, social workers, activity coordinators, pharmacist, storeroom workers, aides. Good work conditions for appropriate applicants. Located near the Central Bus Station.

Who is caring for their highly vulnerable residents while those posts await filling and when volunteers - the most inferior type of care at the best of times - are gone?

I shudder to imagine.

Here is some wise advice from UNICEF to countries like ours that lag behind the rest of the developed world of which Israel professes to be a member:

Transforming mental health care and institutions is no easy task, especially with the world’s resources fully stretched in response to the COVID-19 crisis. But this pandemic is not just a health emergency; it's also an opportunity to develop a system of support services that work better for people with disabilities and respect their rights. Now that we’ve caught a glimpse of what it’s like to be locked up, we surely can’t let people with disabilities continue to live in a permanent state of lockdown. [Source]

Let me end with some words from the Aleh people themselves. I actually never imagined that Israel's champions of institutions would publicize a quote like this one below. I believe it speaks for itself. 

This year, due to the restrictions which the Corona virus has brought, the [birthday] celebrations [at ALEH] were much more modest. Elyashiv's parents arrived at the Village to visit him but didn't bring him home as they normally do. "It's sad but happy. I see that Elyashiv misses us. He understands that we have come just to visit and so he is a little sad. But I know that we made the right choice. I know that it's good for him, that the staff at the Village want to do the best for him. The sensitivity, the professionalism, the caring and their responsibility towards him deserve appreciation," relates Elyashiv's mother. [Source: ALEH "חגיגות יום הולדת בצל הקורונה" in Hebrew, translated by me]

Had I written that promotional piece, I would have added: "But would this be the "right choice" for a child who doesn't have disabilities?"