March 29, 2012 | 10:51 pm

New Autism Numbers from the CDC : I Know One

Posted by Michelle K. Wolf

The big news today in special needs land was a new CDC report showing more than a 20 percent increase in autism rates. As reported in the NY Times, “The new report estimates that in 2008 one child in 88 received one of these diagnoses, known as autism spectrum disorders (ASD), by age 8, compared with about one in 110 two years earlier. The estimated rate in 2002 was about one in 155.”

And just how did the CDC determine that autism rates have increased? They used data from The Autism and Developmental Disabilities Monitoring (ADDM) Network, which reviews children’s evaluation records at 14 different sites to determine the presence of ASD symptoms at any time from birth through the end of the year when the child reaches age 8 years. ADDM focuses on children aged 8 years because a baseline study conducted by CDC demonstrated that this is the age of identified peak prevalence. Much of the increase is attributed to increased diagnoses of ASD among Latino and African-American children.

Of course, everyone is asking if this is just an issue of growing awareness, and a thus a larger number of children diagnosed with ASD, or is it indeed a “real” increase? This dilemma was summed up well by Dr. Thomas R. Insel, Director of the National Institute of Mental Health who wrote in his blog today: “Are more children affected or more detected? Does the increase reflect a growing problem, or do these new numbers reflect an improvement in our ability to diagnose and serve those affected?”

As my friend Judy Mark, Government Chair of the Autism Society of Los Angeles, says, “While it is important to ask why there is such a significant increase in the prevalence of autism, at this point it is more important to ask how we serve this enormous population—are we providing enough and the right kind of services?  Are we providing enough early intervention (which, in California, has been cut back significantly in the past few years)? What are we going to do when these 8 year olds become adults?”

In my own professional work with both the Alzheimer’s Association and now the American Diabetes Association, I have learned that policy-makers and elected officials are often more focused on funding the cutting-edge research and possible cures for a disease instead of funding the nitty-gritty social services/supports so badly needed by any family who has a loved one with a chronic, complex condition.

What the increase in numbers really means is that more and more families either are, or will soon be touched by autism spectrum disorders. Consequently, this dramatic increase in numbers will impact government funding, medical providers and our own Jewish community. The need for inclusion, support and services has never been greater yet government funding is being cut on every level.

Closer to home, how can our Jewish community do more to help families with a child, teen or young adult with autism or other special needs? Empathy, not pity, is a great place to start. Putting yourself in someone else’s place is never easy. But we have a great guide. With Passover just days away, this is a good time to pull out the Haggadah, and think about why we hold a seder in the first place—to feel ourselves taking the exodus out of Egypt. As Cecil Roth comments in my favorite version of the Haggadah:

“The observance does not celebrate a long-past shadowy event of remote significance. It is an actuality. We do not celebrate the deliverance of our fathers alone, but our own freedom as well.”

Dayenu.

March 27, 2012 | 12:04 am

Life Away from Special Needs Land

Posted by Michelle K. Wolf

I spent the last few days on the east coast, hanging out with my daughter who is a college student at NYU and watching her perform in an off-off Broadway production of Shakespeare’s The Tempest in which she plays the role of Caliban the slave/monster. Both of the flights back and forth involved plane changes, and many hours of quiet time along, both on the ground and in the air.

After a lot of big events in my professional life, I purposely didn’t bring a laptop from work, and instead, used the time to catch up on reading on my Kindle, reading the NY Times and napping as much as possible. It was both liberating and odd to feel so removed from what I call the “Special Needs Land” of aides, therapists, and people staring at a kid who uses a walker, speaks oddly, and is given to whining and temper tantrums. I felt so anonymous, just another short, middle-aged lady who doesn’t get much of a second glance.

And then of course, I couldn’t help but notice the adult with Down syndrome on the second leg of a flight, the child with autism flapping in Washington Square Park, and the young man with a beard in a wheelchair in the airport terminal. I felt the desire to connect with all of them, but without my son with CP at my side, the impulse seemed out of place, and might be seen as more of an imposition than friendship.

I enjoyed my time “off” with my daughter and other east coast relatives, taking in the signs of an early spring in New York City, meandering along the High Line elevated park on Shabbat and eating delicious but overpriced Indian and Italian food. And I kept my eyes focused on the many stairs in Manhattan, not even looking around for the disabled signs that would lead to ramps or elevators, as I’ve learned to do over the years.

Today, I’ve re-joined the “Land of Special Needs”, talking to Danny’s aide at school about upcoming activities for Cesar Chavez Day, making an appointment with his speech therapist and given him a bath. It feels good to be back.

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March 16, 2012 | 12:15 am

Stigma and Non-Disclosure

Posted by Michelle K. Wolf

Which comes first, the decision to disclose sensitive personal information, or the fear of stigma that may result from disclosure? This is a question of many people who feel at the margins of the Jewish community, whether for physical/mental illness, sexual orientation, poverty or special needs.

For many Jewish parents raising a child with less severe or “invisible” special needs, there is a strong, inherent urge not to share the child’s challenges with educators, camp directors and youth directors. After all, if the child can “pass” as a typical child, why turn the child’s diagnosis into a “label”, with all the stigma and difference that goes along with that appellation?  With our community’s hyper focus on academic and extracurricular success, a Jewish kid who is even a little quirky or who has an artistic bent can feel left out, let alone someone who has a diagnosed learning disability.

In many cases, however, that lack of disclosure can boomerang, and result in the child acting up, getting into trouble, or even in the best case, often unable to keep up academically, and/or socially and the resulting feelings of low self-esteem.

At Matan’s recent inaugural Jewish special education national institute in New York City, 20 congregational school education directors from across the country came together to launch a 15-month program that will enable their schools to better accommodate children with special learning needs.

The two-day intensive program on March 11-12 featured a keynote address by our own Rabbi Bradley Artson, Dean of the Ziegler School of Rabbinic Studies at American Jewish University, and his 19-year-old son Jacob, who has Autism and communicates through typing.  Matan staff presented on such topics as differentiated instruction, communicating with families and developing proper systems to understand various students’ needs.

Among these many topics, Meredith Polsky of Matan’s staff told me they discussed the issue of why parents don’t provide relevant information to congregational school directors, and how to change that. My sense is that parents are fearful of disclosure because they don’t see their congregational schools as truly welcoming students with special needs. Are there any photographs of kids with overt disabilities in their promotional literature? Do they encourage children with special needs to enroll, or do they fear that being known, as the “special ed” school will hurt their ability to enroll the more academically gifted students? Once other parents see my son Danny using his walker in any public space, I often become the “confessor” in whispered, anxious voices and hear the fear of stigma loud and clear.

Until a school or synagogue is seen as really welcoming those children with special learning needs, parents will be reluctant to share, but once the schools have established themselves an inclusive centers of Jewish study, it is incumbent upon the parents to disclose their children’s special needs.

One last note: I was very pleased to see such a nice line-up of major funders for this program and hope that other Jewish foundations and individuals will follow their lead: The Adler Family Innovation Fund of The Jewish Federation of Northern New Jersey, The Natan Fund, The Solelim Fund of UJA-Federation of New York and The Jewish Women’s Foundation of New York.

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March 9, 2012 | 8:08 pm

BBG + Mom Power = A Very Special Trip to Israel

Posted by Michelle K. Wolf

If you want to make things happen in Autism-land in Los Angeles (and by extension other developmental disabilities), the best go-to person is my longtime friend Judy Mark, the Governmental Relations Chair for Autism Society of Los Angeles. We met each other many years ago in high school while in BBYO, with her growing up in Downey and me in La Mirada. Although I’m far from a shrinking violet, I am an absolute wallflower compared to Judy, who was Regional President, and personified the word “leadership” in every way.

Flash forward a few decades, and Judy was working in Washington DC for national advocacy organizations representing immigrants and low‐income families while I was in Los Angeles, working in local government, various non-profits and The Jewish Federation.

After her son was diagnosed with autism, she and her family decided to move back to California, and through a mutual friend, she learned I was also raising a son with developmental disabilities, and we reconnected, with our kids now enrolled together in the Vista Inspire Project, doing theater and Judaica classes.

One day over lunch, Judy told me she just come back from visiting relatives in Israel, and while there, had toured two amazing special needs programs, Beit Issie Shapiro and Kibbutz Kishorit, both of which offer innovative approaches to supporting and helping people with developmental disabilities. The next time I was in Israel, we also had the chance to visit both places, and came away very impressed, wondering why we didn’t have similar programs back here in Los Angeles.

Now, in collaboration with the Jewish Federation of Los Angeles, many others will now have the opportunity to come to Israel with Judy and me this July 20-27, and visit not only these two wonderful places, but many others as well, such as Kibbutz Harduf, Center for Independent Living; Israel Unlimited (inclusion and advocacy); Aleh Negev (residential community for the most severely disabled); Israeli Defense Forces inclusion program; and JDC’s Supportive Community for People with Disabilities, plus many other amazing programs—whew!

Our study/exchange trip is for parents, professionals, and leaders in the disability rights community in Los Angeles to explore the country’s cutting-edge programs that provide vocational training, paid employment opportunities, and residential options for individuals with developmental disabilities. Our focus is on older teens and young adults, and when we get to Los Angeles, that’s when the real work begins, collaborating together to replicate some of those innovative models that are a good match for our community here.

Cost (not including airfare) - $2,000 per person, based on double occupancy. Includes hotel in the Tel Aviv area, most meals, on-the-ground transportation, and meetings.

If you are interested in coming along on this special trip, there’s an informational meeting this Tuesday, March 13 at 7 pm at the Jewish Federation of Greater Los Angeles, 6505 Wilshire Blvd. (near San Vicente. For security purposed, RSVP is required. For more information and to get on our email list, please contact Judy Mark at judymark@earthlink.net

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March 5, 2012 | 12:37 am

Turning the Corner

Posted by Michelle K. Wolf

Almost every Friday, I look forward to taking my son Danny who has cerebral palsy (CP) to a neighborhood pool for his weekly swim lesson. Our swim instructor, Susan, has the patience of Job, and regularly performs aquatic miracles, teaching everyone from crying babies to water-phobic adults how to swim (in the deep end) and come out of the pool with a smile.

There’s a small crowd of families on Friday afternoons, and we’ve all come to know and like each other. It doesn’t matter that the pool is located on one of the busiest boulevards in town because once I’m inside the gate, there’s a calming ripple of water that seems to dim down the outside noise and lets me forget about all the hassles of the past five days, and look forward to a nice Shabbat dinner including the wine.

Danny has been taking swim lessons there for years, and he has ever so slowly learned how to kick, move his arms, and blow bubbles, but not always all at the same time. He puts his head underwater, smiling away, and can now float a bit on both his stomach and back, and can tolerate wearing goggles! Like many people with CP, swimming is easier for him than walking since he doesn’t have to fight gravity in the water.

But this week something happened on the way into the pool that was, for us, an even bigger deal than swimming. Instead of parking in our usual spot right in front of the pool, I parked around the corner, about half a street block from the busy boulevard where the pool is located, and got him out with his walker. He was standing there on the sidewalk, when I yelled out to him, “Mommy has to get out a few things, just wait a minute”. Then I dug around in the back seat to find my trusty water bottle, and some sunscreen, closed and locked the car, and I when I turned around, Danny was gone, no where in sight.

My heart skipped a beat and my brain jumped to the extremes. Had he gone into the traffic? Had someone kidnapped him?  I ran around the corner, and there he was, waiting at the gate of the pool, fiddling around with the lock and trying to get it open. It was hard to decide whether to be mad or overjoyed, so I just said, “Good walking—time to get in the pool.”

PS Be happy it’s Adar and Purim begins Wednesday night, March 7th, with the tradition of megillah readings both that night and the next morning. If you missed my post from last year about the sensory challenges of this fun holiday for kids with special needs, you can read it here .

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