Sunday, October 12, 2008

Hidden in Plain Sight: Yom Kippur the Aspie Way

Yom Kippur happened (and believe me, it is a happening!) for the 25 hours from sundown Wednesday to Thursday night.

The services were beautiful and the Erev Yom Kippur/Kol Nidrei sermon was good. It does seem as if the choir reaches towards perfection as the Holy Days end. I imagine that can chalked up to the practice effect.

The Boychick does not look forward to Yom Kippur, however, because it involves more lengthy services and a much larger crowd than a regular Shabbat service.
I make him go, nevertheless, because this is part of his identity, and because he needs to develop his sitzfleisch--his ability to deal with these situations.

But I alter the requirements. He must stay through the Amidah (the standing prayer) for the evening service, but he is free to leave when the rabbi rises for the sermon.
In the morning service, he must stay through the Torah service, and again, can leave for the sermon and closing prayers.
The morning service is longer than the evening one because of the Torah service, but he has more energy to deal with it all for a longer time in the morning.

Even with these alterations, the services are difficult. After Kol Nidrei was sung on Wednesday night, the Boychick became clausterphobic. He was able to stay in the service, only by lying back in the seat as I rubbed his shoulders with deep pressure. After about two pages in the Machzor--the High Holy Day prayerbook--of shoulder rubbing, he went to sleep.
Sometimes, he will become restless and engage in body stereotypies (tic-like behaviors such as the classic hand-flapping seen in Autism Spectrum Disorders). Many times, even in the smaller and shorter Machon services (fifteen minutes at the end of religious school), he will be unable to sit up and follow the service attentively--he will shut down.

All of these things are very difficult for me, as well.
I look around the sanctuary and see kids a few years younger than he, dressed in suits whereas the Boychick wears comfortably worn clothes--neatly pressed--and truly atrociously worn tennis shoes rather than oxfords. Those other kids are sitting up straight, following the services, and I feel like an inadequate mother.
I get those looks from people around us. Some of you know which looks I mean.
Looks meant to tell me that I am an inadequate mother. That I should discipline my son and make him behave in the expected, neurotypical fashion.

I even get such looks from the Bimah.
These looks come from the rabbi and the cantor--people who are aware of that the Boychick is not neurotypical, that he does have an ASD, and that being an Aspie results in differences in neurological functioning.

I think the problem is that disabilities like Asperger Syndrome are hidden. They are hidden in plain sight, so to speak.
Although I can tell when I am seeing AS behaviors in others, this is because I am acutely aware of the symptoms. And in my professional work in neuropsychology, I deal with the differences in brain functioning that result in the neurobehavioral differences.

But other people do not automatically connect the behaviors with the disability, even though they have been made aware of the disability.
Kids with AS just look too "normal." There is no cane, no wheelchair, no obvious cognitive deficiency. No physical manifestations point to differences in functioning.
To make it all the more difficult, neurological behavioral symptoms tend to be extremely variable. The nature and extent are determined by a host of environmental factors that change how sensory input is received and processed by the brain.
This variability is often misinterpreted to mean that the difficult neurobehavioral manifestations can be controlled.

For example, the Boychick had great difficulty at the beginning of the Yom Kippur morning service. He was using stereotypies, he needed to lean against my shoulder, and he could not keep his kippah on at all. But during Yizkor and Neilah (the late afternoon services), he was able to sit up straight, read the prayerbook, and follow the service. He looked much more competent and put together. So it is that people who do not understand the nature of neurological disabilities tend to think "see, he can behave, if he sets his mind to it, so he should do so every time." And if he doesn't, they believe that it is a deliberate choosing not to behave on his part.

Thus those looks.
They are directed at the Boychick and they are directed at me.
They are the reason that the Boychick's considerable talents are largely dismissed at our synagogue.
Other kids past Bar Mitzvah age are often given Bimah honors at certain services.
The Boychick is not ever asked.
Although the Boychick has shown excellent skills in mentoring younger kids at camp, at Scouts and in other settings, it is very unlikely he will be selected as a madrich--a teacher's assistant--in the Hebrew school.

He just looks too normal for his Aspie behaviors to be placed in context by neurotypicals.

It all grates.
On me.

The Boychick doesn't seem to notice.
He is developing in his atypical, Aspie way.
But he is developing.
This Yom Kippur, he did better than last.
He is hugging people. he has learned to respond to them when he is greeted, even if he doesn't look them in the eye.
He told me "yasher koach (may your strenth be straight)--you chanted beautifully" when I came back to our seats after chanting the Yom Kippur morning Haftarah.

And I?
I practice not comparing him to the other kids.
I enjoy rubbing his shoulders through the book of Jonah.
I try not to take those looks seriously.
"If you only knew," I think back at the grimmacers. "If you could only see how differently these kids think, if you could only experience their peculiar genius, how much richer your life could be! These kids are the Einsteins, the Edisons, the Glenn Goulds of the future." (All of these great people, as well as others whose genius has enriched human life, are thought to have manifested signs of Asperger Syndrome).

It did appear as if the Boychick was shut down through parts of the services.
But he was far more aware than we knew.
This morning, while reading the Sunday paper, he mentioned that Mosul, Iraq, is in Ninevah province. And that Christians there are being driven from their homes there by Al Quaida.
"No wonder," he said, "that Jonah did not want to go there. His book is right. The Ninehvites cleary don't know their right hands from their left. That great city."

And that is why I will keep taking him to services.
Even though his odd behavior is sometimes disturbs the prejudices of neurotypicals.
He is a Jew. And an Aspie. Both are his identity.

In part of the Vidui, the confession, on Yom Kippur we say:
"We shunt aside those whose youth or age disturbs us."
I silently add: "We shunt aside those whose odd way of being disturbs us."
And we all say together:
"Forgive us, pardon us, grant us atonenment."

For dismissing those whose differences disturb us.


MamaSheep said...

Oh yes, I know THOSE looks. Isn't it interesting how some things do cut across cultural and religious boundaries--but not always the nice things. Sigh.

Like your Boychick, our son has made SO much progress, much of it invisible to others because, as you say, they are unaware of how much more effort and practice and psychological energy it takes for him to behave in a "socially acceptable" manner than it does for a neurotypical child of the same age. They so often only notice the small ways in which he is not conforming at any given moment, and are completely blind to the astounding victories taking place right under their noses. We so appreciate the leaders and members in our church congregation who have taken the time to try to understand Cricket's challenges, and who are willing to make room for someone who experiences life a bit differently. Knowing there are some allies out there in the crowd sometimes makes those LOOKS from ignorant others easier to ignore.

I dunno. It's a hard thing for Moms. Isn't it?

Elisheva Hannah Levin said...

Thanks, mamasheep!

It is a hard thing for Moms. I think it is harder than it is for the kids. Kids with ASD tend to take themselves and others as they find them. At least, The Boychick does! That kind of acceptance is such a gift. But for us, the Aspie Moms, it is different. We notice the looks and the comments. We agnonize over the non-acceptance of the NT world.

Our last education director truly understood Aspie criteria. Another sore point--she was dismissed for unknown reasons 6 months into her contract. This really upset the Boychick. The new education director is an unknown in this equation. I sent her a modifications sheet and letter, but got absolutely NO response.

On the other hand, our rabbi seems to have the impression that the Boychick's disability means that he should be sent to segregated camps, etc. He only sees the aneurotypical behavior. He does not appear to see the gifts. In my experience of him, this tendency to be disturbed by differences cuts across categories for him. He also has trouble with old people, with the dying, with poor people and others who are different enough to upset his categories. On some internal level he appears to need a narrow vision of "normal." He is kind enough to the Boychick, but I know that he will never fight for the Boychick's inclusion, just as he did not for the Chem Geek Princess's--who was different enough to be bullied severly through five years of Machon. The chief bully was one of the rabbi's favorites. The rabbi's only contribution to a solution to this problem was to insist that she must return to be bullied (she started boycotting Machon) or he would refuse her a Bat Mitzvah. It did not endear him to the Chem Geek Princess or to me.

The cantor is not a warm person naturally--she is reserved. This alone would not bother the Boychick, but he witnessed and experienced several incidents in religious school with her that really put him off. I think this can be overcome, but with the Boychick this will take time. And I am not sure that she really "groks" the Aspie criteria. So we'll see!

There are no other Reform Congregations in the area, so it's either drive to Santa Fe--prohibitively expensive!--or remain where we are through the spring of 2010--when the Boychick does Confirmation.

MamaSheep said...

I agree. I think it IS harder for the Moms than for the kids. Cricket seems to take people as they are, and also during those times that the "looks" are most glaring Cricket is often so immersed in whatever is overwhelming him in the first place to provoke the behaviors that are drawing the looks that he doesn't really notice what other people are doing very much. He's too busy just coping.

Y'know...something else I think bugs Cricket's Mom more than Cricket is when other people speak about autism disorders as a horrible plague with which victims are "afflicted" and from which they "suffer". Cricket is certainly different neurologically from other children his age, but frankly what "afflicts" him most is other people's ignorance, and what he "suffers" most from is having to navigate an environment that is unfriendly and unsafe for people with his kind of nervous system. And in many ways his "disability" gives him abilities that other people don't have--and most don't even realize exist because they don't live with someone who has those abilities.

Anyway, it bugs me. Probably because I "suffer" from motherhood.