Posted by Michelle K. Wolf
Towards the end of his book, “Following Ezra” written by our family friend Tom Fields-Meyer about the journey of parenting his teenage son with autism, Tom quotes from Ezra’s Bar Mitzvah speech:
“Sometimes I think that all Jewish people are autistic. Jews repeat things all the time. And Jews have a very good memory. We repeat Shabbat every week. And we sing the same songs, like Shalom Aleichem and Adon Olam and the Kiddush….”
During this recent round of High Holidays, Sukkot, Shemini Atzeret and Simchat Torah, while everyone else was “shuled out”, Danny was perfectly content with going to synagogue one, two, even three days in a row (although he did start asking for frappuccinos from Starbucks after a while). When it comes to movies and songs, it is the same story. If Danny enjoyed Finding Nemo the first time around, the 100th time is even better .(We are probably the only adults outside the Pixar employees who made the movie to literally watch that many times).
Although I long for variety and new experiences, I have ever so slowly learned to embrace the power of repetition. Mostly because it really works.
As Malcolm Gladwell explored in his seminal book, The Tipping Point, the creators of Sesame Street and Blue’s Clues realized the need to make their programming “sticky”—information engineered in such a way that children were able to remember and understand what they saw on the screen. Blue’s Clues did this by slowing the dialogue down so kids could have a chance to yell out the answers at home, thus actively engaging them in the show, plus showing the same episode five days in a row (thank the Lord we have moved on to Superheroes and Wall-E).
Gladwell concludes that all that repetition helps kids trying to make sense of the world, and provides them with a sense of control. It’s kind of like when you are in a foreign country, and can only read a few words—each time you encounter those words, you smile in recognition, and shift from a feeling of being an outsider, a stranger, to being something closer to a local.
And so, I grit my teeth and prepare to watch the penguins dancing again in Happy Feet (and get mentally prepared for Happy Feet 2)!
PS I am excited to share that I will be presenting a parent’s perspective at a breakout session of the upcoming JFNA General Assembly in Denver on Monday, November 7th in a session titled, “Anyone Can Be a Leader and Advocate: Promoting Disability Rights in the 21st Century” from 11:15-12:30 pm (T202) along with self-advocate Ari Ne’eman. Please join us!
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October 17, 2011 | 1:18 am
Posted by Michelle K. Wolf
The current harvest holiday of Sukkot is a perfect match for persons with special needs – the many physical and concrete symbols of the holiday are tangible, and multi-sensory, plus there’s some fun Hebrew songs. Compared to teaching the “why” of Yom Kippur, especially, for someone who is exempt from fasting for medical reasons, it’s a piece of cake. And with 8 nights, there’s lots of room for repetition of the key blessings.
Over the years, Danny’s favorite part of the holiday is what we have come to call the “lulav parade” when the congregants march around the synagogue in a large circle, holding the etrog citrus and lulav (palm frond plus willow and mytle). According to the Jewish Virtual Library, these processions, known as the “Hoshanahs,” commemorate similar processions around the alter of the ancient Temple in Jerusalem. The first time Danny did the “parade” in his walker, it was like completing a physical therapy goal.
Our home-grown sukkah has 20-year old wooden sides, covered by sheets that my late mother had painted with her fabric paints when the kids were young. Her spirit lives on in the painted decorations of fruit, flowers and birds, even though the sheets are starting to develop holes and frayed edges. Danny gets very excited when it is time to put it up, and “helps” hammer in a nail or two. He is also a little sad when the holiday ends and we have to return to eating in the mundane kitchen.
The main problem is tying to explain the holiday to Danny’s teachers and aides at public school, who can’t figure out why Danny is missing school (yet again) and that the holiday involves a lot of shaking of a palm frond and hanging out in a hut in the backyard. This is one holiday that is easier to observe and fully celebrate in Israel, when the whole country is on vacation and eating in a sukkah.
October 9, 2011 | 4:59 pm
Posted by Michelle K. Wolf
Some prayers were answered today when California Governor Jerry Brown signed SB 946, the autism health insurance mandate reform bill, into law today, awful close to the bill-signing deadline of midnight tonight. The Governor signed the bill with some reservations, pointing out in his signing message that there “are remaining questions about effectiveness, duration and the cost of the covered treatments that must be sorted out.”
This bill was authored by Senate President pro Tem Darrell Steinberg (D-Sacramento), who praised Brown’s signature as “a critical victory for thousands of California children and families. For many of them, having this therapy covered by their insurance is the difference between despair and hope.”
The new law will require private health insurers and health plans to provide as a covered benefit, beginning July 1, 2012, behavioral health treatments such as Applied Behavior Analysis (ABA) for persons with autism spectrum and related disorders. However, the bill’s enforcement will end July 1, 2014 as national health care reform kicks in, along with its own definitions of “essential health benefits”.
Supported by such groups as Autism Speaks and the Autism Society of Los Angeles, this law was seen as a crucial first step in getting insurance companies to cover “essential health benefits” such as treatments for persons with developmental disabilities. For too long, there’s been a nasty game of “hot potato” that plays itself out, as health insurance companies, school districts, and Regional Centers try to hand off the cost of effective treatment for children with disabilities to someone else. Families have been the big losers, and especially households who don’t have the resources to pay out of pocket.
Although children on Medi-Cal and Healthy Families were ultimately (and unfortunately in my humble opinion) not included in this law, many middle-class and working-class families who are fortunate to have health insurance from their employers will begin to reap the benefits of this plan this summer.
Not a bad way to start off the New Year!
October 4, 2011 | 5:29 pm
Posted by Michelle K. Wolf
During this period of repentance and self-reflection, I feel the need to confess that before our second child was diagnosed with developmental disabilities, I didn’t really give much thought to special needs. Not that I ever knowingly insulted or offended anyone with special needs or a disability, but frankly I just didn’t give a damn about the issue.
In fact, when we looking to enroll our typically-developing first child in nursery school, I purposely stayed clear of anything that even smacked of special education. Why should my daughter, who reached every developmental goal to the minute, have to be “held back” by kids who simply weren’t at the same level of learning? Didn’t they have “special” classes for “those” kinds of kids? I dare say the majority of Jewish parents probably still feel this way.
It is human nature to care most passionately about those things that impact us personally. All too often, unless we or a loved one has experienced a chronic condition or illness, the problem can feel far removed, suspended among the many global concerns such as famine, war or natural disaster. In my journalism classes in college, I was taught that if a hurricane happened on the other side of the world, it was worthy of a small item towards the back of the paper, but if it happened in the hometown, it was front page news. The Internet, Skype and You Tube have made the world feel smaller, but in general, the more “local” the issue, the more we tend to engage.
But with the number of active and affiliated members of the Jewish community shrinking, we don’t have that luxury of only focusing on those issues that touch us personally. We do a disservice to ourselves and the Jewish collective if we put up barriers for literal and spiritual access to families raising a child with special needs. Every parent who contacts their rabbi or educator and asks, “Can you make a space for my child in your synagogue or religious school?” needs to be welcomed warmly, and accommodated to maximum degree possible.
May we all be sealed in the Book of Life.