Notes from an Aleh visit

One of the cribs I saw at Aleh

I promised more transcribed info from my visit to Aleh Jerusalem ["Making history: After the raid"] and here it is.

Our guide was a senior staff member of Aleh Jerusalem whose position entails a variety of organizational responsibilities.

But on this particular day, what she did a lot of was "blow smoke in our eyes". Before the tour began, while we were congregated in somebody's office, she regaled us with tales of Aleh as champion of the family. I found this ironic, given that Aleh is in the business of taking children away from their families.

"We don't come to replace the family" was one of her memorable lines. "The family is an entire world" was another. "We try hard to keep contact going between residents and families", yet another.

Next, an anecdote: 

"One mother had no relationship with her son. The father was the only legal guardian. After years of efforts by Aleh's social worker, the mother finally came to visit him two years ago and now sees him - he's 21 years old - once every few weeks."

"Each family chooses what it wants and we follow its lead", we heard. Next we were told the tale of a mother who brings home her child's laundry and returns the clothes freshly washed and dried. I wondered how this devotion to her child's clothes could be relevant to her relationship with her child but didn't pursue that. 

"Every educational decision, every medical decision is reached with the involvement of the parents. We have long and meaningful dialogues and joint discussions beforehand."

Afterwards, there was prattle about parties to which parents and siblings are invited: "We want the siblings to see the positives of Aleh and not just to think of it as a hard place. It was just Chanukah, and we had a full party." Now how a "full party" differs from a "partial party" wasn't clarified. I didn't pursue that either. But it was implied that this was a significant party which somehow benefited the residents greatly.

We were then taken to the floors where the residents live. Two of the five floors are devoted to housing the 82 residents who range in age from babies to 40 years old. They were housed three or four to a bedroom and at 12:45 pm we found many in their cribs. Yes, even the young adults are relegated to cribs.

In one room, three of the four were wide awake and one, who was sitting up, smiled warmly when I approached and spoke to him. Why they were in bed - and our guide told us activities would not resume until 4 pm - is anyone's guess. We were told that normally they are put to bed slightly later but that because this was a fast day - it was the 10th of Tevet - the schedule had been slightly altered. Again, the connection between the two is anyone's guess.

I was particularly interested in learning how much para-medical therapy each resident receives. Therapies are a basic need for those with severe disabilities - precisely the population that Aleh invites. (Nearly all of the 82 residents are wheelchair bound, the guide told us). 

Many years ago, my daughter's physiotherapist told me that "therapy is oxygen for these children". And as I have learned from experience, the more severe the disabilities, the more crucial is individualized, intensive input of private therapy sessions.

But extracting information about such therapies proved challenging. Or, rather, impossible.

So, for example, when we visited the beautiful new therapy pool - empty - I asked how many times the residents receive hydrotherapy. The answer: "Once a week; once a fortnight. It's a relatively new pool. Just opened this year. The problem is with the logistics". 

I raised it again a few minutes later and was told: "Once a fortnight - or once a week". 

When I asked about the pool being open in the afternoons for a fee, she told me "Yes, it's open to the public." Apparently no logistics problem in the "for-profit" context.

I then pursued the question of other para-medical therapies, namely physiotherapy, occupational therapy and speech therapy. After getting a general answer, "It depends on the child", I pressed for a range of numbers of therapies or for the number that a typical child would receive. Still stone-walled. "It's very difficult to say. Because it's very dependent on the specific child" was her response, adding, "We very much believe in group therapies. For example, the physiotherapist works with groups. And the occupational therapist as well. If there's a specific child who needs something specific then, yes. Everybody with his own needs. That's why it's so hard to say. With physiotherapy there are those who receive it four times a day". 

I interjected, "Oh, you mean the respiratory physiotherapy?" It had been mentioned earlier. The guide said, "Yes, the respiratory physio." She reiterated: "That's why it varies a lot."

Now for those who are unfamiliar with it, respiratory physiotherapy is primarily concerned with developing, maintaining and restoring an individual's maximum movement and functional ability. In patients with respiratory conditions, physiotherapy includes, but is not limited to, chest physiotherapy or clearance of secretions, and breathing exercises. 

It is by no means the physiotherapy that children with functional disabilities, children unable to walk, stand or sit independently, need in order to progress. It is simply administered to keep the patient breathing.

Realizing that our guide may have been referring only to resident children, I asked about therapies for the young adults. They have a "different program", she said. "They get a combination of work and social activities. The work session is two hours long and its nature depends on the individual capabilities of each resident. They work with paper, clay, etc. It is very much personally adapted." 

As for therapies, "We try to weave them into the daily program, for instance, the walking." 

Well, you have to hand it to our guide: she's a champion waffler.

Coming up: the results of a follow-up phone call to that guide in which I try to elicit specific answers about therapies in Aleh.