Sunday, November 1, 2015

Is Anybody Listening? Does anybody care?

Jane Strauss writes "Is Anybody Listening? Does anybody care?" on FaceBook

I am one of those “angry persons with autism” who are the bane of some organizations’ existence.
On Autistics Speaking Day, I will be traveling to attend a “Summit” on inclusion in the Jewish community. I am of two minds about this. It is vastly needed. And I am concerned that it will be more of the “same old, same old” and will, in the long run and in real life, make little or no difference.
Our family includes three inhabitants of the spectrum - everyone in the house. In that sense, we can all really be said to be “living with autism” or at least “living with autistics” - unlike the allistic “warrior parents” and professionals who use the term as a euphemism. We are all different in our challenges and our gifts - two have more difficulty with language, one with motor function, two with behavioral control, all with executive function, all are artistic, one deals with dyslexia, two with visual functioning, two test as gifted in intellect, all have sensory issues and allergies, one has issues with toileting, one blurts out brilliant statements when most people least expect them, not always the same one or two for everything. We span the grid all by ourselves.
We have a Jewish household, to the degree that is compatible with sensory issues, making a living and paying the bills. This means that we avoid the High Holiday services that are packed with people (relying on internet broadcasts for many of those), may need to work or do other incompatible things on Shabbat, prioritize our purchases, and center observance on the home. As primary parent, I have struggled to gain inclusion for our son, and for the older kids (no longer at home), in the Jewish communities near which we live. Pretty much, the attempt has been a failure. Only one of the four older children identifies with the Jewish community, despite all having attended day school and Jewish camps for at least several years.
All the kids have been bullied, some, at times, by the Rabbi’s kid. The Rabbi, and his wife, did nothing.
Learning differences were not dealt with well. Decades ago, dyslexia was ignored, and some of the children struggled to learn. They caught up, to the extend that one actually was a Hebrew major at University, with honors. More recently, the local organization that claims to include kids with special needs in Talmud Torah was unwilling to permit their educational aide to be cross trained in dealing with physical issues like toileting, requiring instead that I or a PCA also be with my youngest son at all times. At age 8 or 9, having 2 adults with a kid all the time results in an effective barrier to real inclusion, not that the organization ever thought of, or cared about, this reality. I declined to enroll him under such conditions.
Overnight camp programs claiming to be inclusive were either segregated entirely or “camp within a camp” segregated units, including disabled participants only occasionally, and not even for Shabbat services or Shabbat dinner. Some typical campers were “buddied up” with the “special needs” campers, some of the time. Sorry, my kid is not your kid’s mitzvah project.
Sensory issues and allergies to scents, clearly stated, were ignored.
The Senior Rabbi of one congregation, after my son had a meltdown at shul, called us to suggest we would probably be happier somewhere else. Ironically, most people who know him and work in the ASD field have said to me, on the QT, he’s probably on the spectrum himself. He certainly showed no ability to understand another’s POV or be at all empathic in his dealings with us, so he seemed to me to be just another NT bully.
“Inclusive” JCCs have ignored my kids when they were victimized, talked to caregivers instead of to the person, and excluded based on perceived “severity”. Their staff also showed clear racism when dealing with a 1:1 who attended a camp with our son, and the resultant bullying stressed our son sufficiently that he became physically ill and was hospitalized.
An “inclusion director” failed to adequately plan for full participation, made biased decisions based on gender and parental employment, and threw my son out of a program and the building, leaving longstanding PTSD. (I wrote about that two years ago for Autistics Speaking Day.) In the course of that horror show, a nationally known “expert” on inclusion was not permitted by the local Jewish Family and Children’s Service, her employer, to advocate for our son’s inclusion.
While this debacle was going on, an organization funded by the Foundation sponsoring the inclusion summit gave the JCC an award and included them as a resource for “inclusion best practices.” When I pointed out that their definition of “inclusion” included Special Olympics, a segregated Jewish studies class, and a segregated singalong group, there was no apology, just the excuse that the books had already been printed.
This year, the JCC- chartered Scout troop, while claiming to “include Scouts of all abilities” shoved our son out, its leadership becoming irate when the Boy Scout Council’s inclusion experts told them many of their actions and claims were just plain wrong. My son is still a proud Boy Scout. He belongs to a troop in a nearby small town, most of whose members had never even met a Jew before we showed up at our first meeting. One more tie to the Jewish community has been severed, as a direct result of its attitudes and actions.
Now, our only tentative tie to any Jewish community is through a small congregation whose events we attend infrequently, and occasional community events, as long as they are not held at either local JCC. Regardless of the best intentions of an East Coast Foundation, over a thousand miles away, I doubt that this will change. Our experience has proven otherwise.
Will participants in the "summit" listen with open hearts and minds, or will it be more of the same window dressing? The jury is still out.

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