Posted by Michelle K. Wolf
For the past few days, I’ve been noticing symptoms of spring fever almost everywhere.
On Wednesday, I coordinated the first meeting of a Family Advisory Council for a new project at Bet Tzedek Legal Services targeting older adults with developmental disabilities and their family caregivers. While I anticipated that much of the discussion would revolve around such weighty issues as independence vs. safety concerns, it wasn’t long before the discussion turned to marriage, love and sex.
With early intervention, and strong support from their families and professionals, many of the adults with developmental disabilities in their later 20s and 30s have made huge progress in their ability to take care of themselves, hold jobs and have friendships but romance (and let’s face it, sex) remains elusive.
“My 26-year old son really wants a girlfriend,” one mother said, “but just doesn’t know where to start.” Another parent there who had a daughter close in age jokingly said that perhaps they should fix the two of them up. We lightly tossed around the idea of starting a paid, on-line dating service for adults with disabilities to keep our program going after the three-year grant runs out.
Later that day, I went to the latest teen performance of the Vista Inspire program’s theatrical production titled, “It’s a Mad, Mad World of Miracles” which features teens with autism and other disabilities, along with teen and adult volunteers. The overall premise of the musical is that a priceless piece of art titled, “The Meaning of Life” has been stolen from the Museum of Modern Art in New York. Teams fan out across the world to find the purloined masterpiece but come back empty-handed. However, in the process of making those sojourns with others, individuals connect in new and unexpected ways, including finding romance in Greece.
And then today, at the Autism Society of Los Angeles conference for parents, professionals and self-advocates on how best to work together for funding and innovation, the best story of the day came from a Mom talking about creating new housing options for adults with autism. When her son with autism was 14 years old, she inherited a sum of money that she used as a down payment for a nearby two-bedroom condo.
At the time, she told her son that the second bedroom could be used for an aide, or perhaps a roommate. The parents rented out the condo, and waited for the son to be ready to move in. When he turned 21, he wasn’t ready to move out, and needed to learn independent living skills such as shopping, cooking and doing laundry. Year by year, he learned more and at age 26, finally moved in. “The second bedroom is now an office,” she said, keeping us all in suspense. “And in the first bedroom, there’s my son with his girlfriend”. The audience roared with approval while she blushed.
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April 27, 2012 | 12:10 am
Posted by Michelle K. Wolf
Dictionary.com states that the word “independence” can be defined as “freedom from the control, influence, support, aid, or the like, of others.”
As a parent of a 17 year-old with significant developmental disabilities, the word “independent” feels very elusive. With our next IEP (Individual Education Plan) meeting, we will begin to plan his “transition” out of high school and are getting ready to fill out the Limited Conservatorship paperwork needed for us to retain legal responsibility when he turns 18. How will our son Danny ever be independent when he needs help with almost every aspect of daily living? Will he be able to live safely and happily without us, even in a supportive and nurturing residential arrangement?
When he was younger, we had high hopes that all that was needed to ensure his eventual independence was one more therapy, perhaps a different, novel approach to his intellectual and physical challenges. Conventional physical and occupational therapy, Floor Time, Audio therapy, hippotherapy (that involves a horse, not a hippopotamus), you name it. We tried them all, and while many of the therapies and strategies were helpful, none of them were able to help him “catch up” to his peers. After a while, we stopped trying to run a race that was impossible to win, and learned to measure his progress solely against his own yardstick.
Just this year, Danny has shown remarkable progress in many areas, most profoundly in speech. When his space heater stopped working last night, he loudly announced, “I cold, I cold”! Upon hearing a song he likes, he demands that we add it to his “Nano” (Ipod), and as soon we hears about an upcoming party or simcha, he begins to plan out what he wants to do at the upcoming event “dance” accompanied by his own little dance move, or “eat cake”.
Last Friday, we stopped off for a snack at Starbucks after his swimming lesson. I knew he was tired, so I gave him the choice of going in or staying in the car. Up till now, he would just motion with his hands to stay in the car, or maybe say, “car”. He turned to me, and with full teenage attitude said very clearly, “Stay in the car”.
Independence Day is coming.
April 20, 2012 | 3:17 pm
Posted by Michelle K. Wolf
Imagine spending your days as an aging adult in a beautiful camp-like environment with tall trees, flowers and bushes, nestled in the mountains. There are farm animals, a swimming pool and a wide variety of art and skill classes and opportunities to time with peers. Sounds like something out of a dream, no?
In fact, this idyllic 7.2 acre campus in the rural community of Shadow Hills at the base of the San Gabriel Mountains already exists, operated by Tierra del Sol, a non-profit agency started by a group of parents in 1971, who wanted community-based alternatives from the state hospital system for their adult children with developmental disabilities who were living at home, or nearby in group homes.
The adult program that my colleagues and I visited from Bet Tzedek Legal Services visited as part of the Transitions Project serves a wide swath of ages, from 18-80, although the younger participants are generally there for just a few years before moving onto supported or full employment. In the computer lab, each participant was working individually on their own machine, learning how to use the software, with an instructor from the Adult Education Division of LAUSD standing by to help out with an overhead projector and big screen, so participants can follow along while she provides instruction. (She and the other arts instructors have already been given pink slips by LAUSD due to state budget cuts, but more on that later).
I was especially impressed by the arts classes in drawing and ceramics, with a quiet, creative tone in each room, instructors who clearly knew their subject matter, and aides who made sure everyone including those with physical or more severe disabilities was able to participate. There were some artists who used the most vivid colors to express themselves when oral communication was difficult. Also impressive was the American Sign Language class for the older adults with developmental disabilities, giving them a mode of communication even if their hearing or speech were later impaired by age or dementia.
In addition to campus based learning, all participants are invited to participate in Tierra’s structured community volunteer programs at a variety of nearby community organizations, as well as helping to feed and take care of the chickens, rabbits, goats and sheep. It wasn’t too hard to close my eyes and imagine our son, Danny, enjoying his days there in just a few years, since he is already 17 years old.
Most of Tierra’s funding comes from governmental sources, primarily the state-funded Regional Centers, whose budgets have been hacked to bare bones by Sacramento. And those LAUSD cuts I mentioned earlier create an even bigger problem, with a new $150,000 budget shortfall that Tierra must now privately raise funds to fill.
The only problem for us is that Tierra del Sol is 30 miles away via some of the most heavily traveled freeways in the nation - also, Danny would want a place where he could hear some Israeli dance music, have Kabbalat Shabbat, and eat kosher hot dogs. This type of day program could be easily replicated under Jewish auspices, and has an outside revenue stream to boot. All it takes is some initial funding, a caring heart and lots of sunshine.
April 12, 2012 | 7:27 pm
Posted by Michelle K. Wolf
Last night, we attended a “third” seder hosted by the Vista Inspire Program at Vista del Mar for families who have children with special needs. Even though most of the child and teen participants of the Nes Gadol religious education program had attended seders on Friday and Saturday nights with friends and families, this was a third opportunity to sing a favorite song, eat some gluten-free Matzah and most importantly, hang out with their friends with special needs who understand them on a deep level. Like a bonus track on a CD (I’m dating myself here), this was a chance to linger a little longer.
Led by Rabbi Jackie Redner and Cantor Ken Jaffe, the service was well attended by 80 people, including parents, siblings, grandparents, volunteers and Vista del Mar board members, and covered all the “highlights” of the typical seder, with some special twists. Instead of just reading about the Exodus experience, the kids acted it out, with extra-dramatic flair provided by Ezra Fields-Meyer as the nasty Pharoah. Our Danny got to play the role of Nachson, who was the first brave soul to plunge into the Red Sea. Some kids ate a lot, some kids didn’t eat at all. The grape juice flowed as parents held ad hoc support sessions and the siblings got to feel a little less isolated in their unique situation. And at the end, there were a wide assortment of toys for Afikomen presents for all.
Thanks to Vista Del Mar, Elaine Hall, Rabbi Jackie and Cantor Ken for making our last seder of 2012 extra special.
April 6, 2012 | 1:32 pm
Posted by Michelle K. Wolf
For people with physical disabilities, and especially for those who use walkers and wheelchairs, the whole concept of “freedom” is closely connected to the ability to access wherever one wishes to go. Before President Bush signed the American Disabilities Act into law on July 26, 1990, no federal law prohibited private sector discrimination against people with disabilities and there was no legal mandate to provide for “public accommodations”. People with disabilities were routinely unable to enter many government buildings, houses of worships and even many hotels.
Since its passage, doors literally opened up, and now people with physical disabilities are able to work in office buildings, visit museums and travel by airplane.
One area that still needs more work is recreational activities, and there’s a specific new federal law pending from 2010 about making swimming pools, wading pools, and Jacuzzis accessible. Swim lessons and other aquatic programs at government-run programs will also need to be accessible. Pool operators have had two years to make changes, and the new law was supposed to have been implemented as of March of this year, but has now been pushed to May 15.
This change is long overdue, as many public pools have either architectural barriers, or attitudinal barriers. I can recall many years ago taking Danny to a LA City-operated pool, and the lifeguard there forcing us to take off his water wings, saying that no “toys” of any kind weren’t allowed; she said she had never heard of the ADA being applied to pools. Since then, we’ve been taking Danny to the family-run Beverlywood Swim Center for twice-weekly lessons because they’ve been offering 1:1 swim lessons for kids and adults with special needs for many years. In fact, Danny, like many others with cerebral palsy, loves the gravity-free water environment, and the most challenging part is getting Danny to get out of the pool when he’s done.
Many hotels, however, just don’t want to spend the $3,000 to $5000 needed to make the necessary changes (keep in mind that the law only applies to newly constructed and altered pools). There are even rumors circulating that some hotels would rather close down their pools rather then make them accessible.
Under the proposed law, large pools (more than 300 linear feet of pool wall) must have two accessible means of entry, with at least one being a pool lift or sloped entry; smaller pools are only required to have one accessible means of entry, provided that it is either a pool lift or a sloped entry. Wading pools need to have a sloped entry, which really helps the whole little kid demographic, not just those children with disabilities.
There are some tax credits available for hotels that make the changes through the Disabled Access Credit, plus all the costs are tax deductible. All in all, making the public and commercial pools available will benefit all, as universal access helps older folks and those with temporary injuries, as well as the disabled. It is time for the hotel industry to stop “lapping” behind and jump into the accessibility pool.
PS Join us at Nes Gadol and Jewish Life programs at Vista Del Mar for a 6th Night of Seder for families with children with autism and other special needs on Wednesday, April 11th from 5-7:30 pm at Vista Del Mar. $10 per person. RSVP to Naomi Salamon at 310 836-1223 ext 322 or email firstname.lastname@example.org
March 29, 2012 | 10:51 pm
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.”
March 27, 2012 | 12:04 am
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.
March 16, 2012 | 12:15 am
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.
March 9, 2012 | 8:08 pm
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 email@example.com
March 5, 2012 | 12:37 am
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 .
February 24, 2012 | 8:18 pm
Posted by Michelle K. Wolf
For many years, I’ve been on the sidelines of LimmudLA, hearing about it from friends and colleagues but not sure how it would go with a child who has developmental disabilities
Last Sunday, Danny and I spent the day at LimmudLA (which is held in Costa Mesa) and finally got the chance to see what all the fuss was about. It was kind of like an old-school 60s Teach-in, combined with eastern/spiritual/hippie intersecting with funky new perspectives on old texts.
I had signed Danny up for childcare ahead of time using the online form, and went into some detail about his special needs, only no one seemed to have read. Oh well. Why should Limmud be different from all the other special needs paperwork I dutifully fill out, only to discover that the main information most groups really want to know are 1) Is he allergic to nuts, and 2) What’s my cell number?
I digress. The ages 5-8 childcare room worked out fine since one of the nice teenage babysitters knew Danny from Friendship Circle LA and was comfortable letting him play with all the wooden blocks and books, even if he laid down on the floor and took off his socks and shoes. The other kids stared at first, but seemed just fine with him after awhile.
While Danny was in childcare, I attended two very “grown up” sessions, one with David Siegel, the new Consul General of Israel, talking about shifting the conversation around Israel from the ongoing conflict to the start up successes and innovations coming out from that tiny sliver of land in the Middle East. The other session I went to on my own was the SRO “Stories From the Fringe: A New Play”, which was a reader’s theater presentation, telling the stories of 18 prominent women rabbis, and made me want to laugh and cry, often close together.
I took Danny out of childcare for an early lunch, and then decided to take him with me to the Capoeira (Afro-Brazilian martial art dance) workshop. While he was sitting in his oversize stroller, I decided to give the dance steps a try, and figured Danny could just watch from the sidelines. But before I knew it, a lovely young women with henna tattoos (at least I think that’s what they were), wheeled him over to the drum area and helped him play around with those. The dance steps were fun, but when it came time to get more athletic and kick my leg over my partner’s head, and I felt my muscles twinge, I was reminded that I really do need to get more exercise. Instead, Danny and I became drum partners, pounding out the dub-dub-DUB rhythm that came easily to the rest of the group, but required my full focus.
Last, but certainly not least, Danny and I were part of a family panel on Jewish Special Needs called, “Better Together: A Presentation and Panel With Teens Who Have Autism and Other Special Needs” led by my friend and fellow short-person, Elaine Hall, founder of the Miracle Project, and Director of the Vista Inspire Program at Vista Del Mar. The panel consisted of other parents and older teens that we have gotten to know over the years at the Tikvah Program at Valley Beth Shalom and the Miracle Project. We’ve been through a lot together including the thrill of seeing our kids on the stage, having a B’nai Mitzvah and the sadder parts of life such as divorce, illness, even losing a parent. It was both familiar and strange to be taking our “show on the road” and sharing our lives as Jewish families raising children with special needs. Although there wasn’t a huge crowd in the room, it was enough to feel that our issue was finally moving from a sideshow into the center stage.
PS Be sure to read Julie Fax’s excellent and in-depth coverage of young Jewish adults finding their independence at http://www.jewishjournal.com/cover_story/article/finding_their_place_20120222/
February 19, 2012 | 2:54 am
Posted by Michelle K. Wolf
I’m coming up on the first anniversary of this blog on March 1st, when I first posted “An Unplanned Journey” with the encouragement of Rob Eshman and support from the technical wizards of JewishJournal.com. Life is easier when someone else builds the template.
When I first started writing the blog in March, 2011, it was hard to know where it would end up – a variation of the many “Mommy” blogs in cyberspace, providing weekly updates on the high and low points of parenting a child with developmental disabilities; an outlet to rant about the bureaucratic idiocy of LAUSD; or a place to cajole, embarrass, and prod the Jewish community into doing more for persons with special needs.
As it turns out, the blog has been all of the above, plus some Jewish holidays, many mentions of Danny’s favorite song “Macarena” and a trip to the White House in which I asked President Obama why he doesn’t have a cat. (I still think this would be a good move to gain the Independent voters in November).
Since 2007, February has been designated Jewish Disability Awareness month nationally, and renamed in Los Angeles as the Inclusion Awareness Month, with an incredible number of great events taking place. Last Wednesday night I was honored to moderate a panel of families who had appeared in the HBO special, “Autism: The Musical” at the Simon Wiesenthal Museum and I marveled at the wide spectrum of participants, from secular to black hat Orthodox, all able to join together to laugh and to cry while watching this moving 2006 documentary. And it’s not late to attend an upcoming event at http://www.jewishla.org/pages/iam
I realized later that as much as I am loving all the awareness raising and events, there is something marginalizing about having to squeeze all that attention into just one month (and a short month at that). Turns out I’m not alone in having mixed feelings about an assigned month. Since 1976, February has been designated Black History Month by every US President, and is also observed in Canada and the UK. Along with all the special films, books and TV specials that occur in February are a group of critics including actor Morgan Freeman who once said in a TV interview, “I don’t want a black history month. Black history is American history.”
I have to agree with the sentiment behind that quote—I don’t want the Jewish community to only pay attention to the needs of Jews with special needs one month a year, when we are living with those needs 24/7, all year round. We need day school educators to get up to speed on the best practices in special education, rabbis who have the patience to teach Torah to non-Mensa members and congregants who are comfortable with kids or adults who may need to walk around in circles by themselves in the back of the shul.
And most of all, we need to find value with every human being, even those who may appear to be “broken” in some way. In the movie Hugo, the young protagonist, who was taught how to fix clocks by his deceased father, talks about broken machines that are unhappy and want to be fixed. He wonders if this can also apply to people, and (spoiler alert) he helps to create a happy ending by “fixing” one particular older man. By welcoming in people who have special needs into the Jewish community all year round with spiritual, emotional and financial support, we can together “fix” the problem of exclusion and instead, create wholeness and completeness.
February 12, 2012 | 1:11 am
Posted by Michelle K. Wolf
With chocolate hearts and annoying radio ads for pajama-grams (can’t think of a worse present) vying for our attention this week, it’s easy to forget about what love is really all about, and that all of us humans have a strong drive to find love, even when we might least expect it.
When I worked at the Alzheimer’s Association there often stories of people finding new loves while living in assisted living or nursing homes, even if their memories flickered off and on. Most of the time, they were like elementary school crushes, with some hand holding and whispering in corners, but other relationships involved more intimacy if they could find enough privacy.
In Israel, there’s a non-governmental organization called Shalheveth, which provides services for adults with severe physical disabilities, including a program called “Significant Other,” in which adults with severe physical disabilities are given the support and tools they need to have healthy relationships.
As quoted in a recent Jerusalem Post article the Chair of this organization, Miriam Freier, recognizes the need for this population to have all the life choices of any adult, including a romantic relationship.
“Often, severely physically disabled adults are not presented with many opportunities to meet friends, make new acquaintances or find life partners,” says Freier, adding that their physical limitations coupled with social marginalization can often create “a life of severe emotional deprivation and isolation.”
I found out about this unusual program from the Zeh LeZeh blog of the Israel-based Ruderman Family Foundation, which has donated $15,000 to Shaleveth for their “Significant Other” workshop series and couples counseling, in addition to actively promoting inclusion of people with disabilities in all facets of Israeli and Jewish life.
Back in Los Angeles, our 17-year-old son with developmental disabilities told me that he wanted to give a “DVD-Spongebob” to a cute gal in his special education class for Valentine’s Day. This young lady is very kind and is on the autistic spectrum. Most of her verbal communication is considered to be “echolalia” in which people reflexively repeat overhead words. In Danny’s case, this means a lot of “Oh My God” and “Sheesh”, not to mention “Macarena”.
I also learned from Danny’s aide that there’s another teenage girl in his special education class with Down syndrome who keeps hugging Danny whenever she gets the chance, but Danny doesn’t seem to reciprocate those feeling at the same level. The take away here is that even when you least expect it, the desire and quest for love is deep and abiding.
PS Spread a little love yourself by signing the Inclusion Pledge at the Los Angeles Federation website. For each signature, one dollar (up to $5,000) will be donated to Jewish special needs inclusion programs.
February 3, 2012 | 12:58 am
Posted by Michelle K. Wolf
As we celebrate Jewish Disability Awareness Month this February and collectively acknowledge the value of including children and adults with disabilities in all spheres of Jewish life, we can draw much inspiration by the story of Elad Gevandschnaider from Beersheva.
Like most Israeli young adults, Elad, 23, has looked forward to serving in the Israeli Defense Forces (IDF) since he was young. “All of my family served in the army and that influenced my decision to enroll,” he is quoted as saying on the Israel Tennis Centers website. But Elad was born with Down syndrome, and is therefore exempt from army service.
Bu he decided to volunteer anyway, beginning with two years of national service in a primary school in the southern part of Israel, and now Elad has just learned that he has been accepted to serve two more years at an Israeli army equipment base and in the spring, he will be recruited as a soldier/volunteer in an official military ranking position. Elad is the only current Southern IDF volunteer, and is part of a total national IDF volunteer group of 15 individuals.
His family attributes much of his success and determination to his participation in the Israel Tennis Centers, where he has been playing tennis since the age of 17, as part of their extensive Special Tennis Programs at 14 Centers across Israel, serving 350 individuals. Elad will soon be traveling to Florida for three weeks to participate in exhibition matches in order to raise funds for the Israel Tennis Centers (“ITC”) and their special needs children programs – marking the first time that a player with special needs will travel to the United States and represent the Tennis Center Foundation in such an event.
Elad has won medals in international Special Olympics competitions including a very emotional moment for his Polish-born father, Yossi, when Elad won a silver medal in Warsaw, Poland in February 2010.
In the World Games for Special Olympics in Athens, Greece in June, 2011 Elad was one of four players representing Israel from various Israel Tennis Centers. Two of the other players were Arab children who trained at the Tennis Centers in Jerusalem, Muhammad Kunbar and Jafar Tawil. It was the first time that Arab sportsmen represented Israel at an international Special Olympics event. Elad won the silver medal in singles and to make that experience extra-cool, he won the bronze doubles medal with Muhammad Kunbar.
After the Army, Elad wants to seek employment in the private sector and he has a girlfriend that he met while participating in the Special Tennis Olympics.
It doesn’t get much better than that.
PS Take the Inclusion pledge and the Jewish Federation of Los Angeles will donate $1 toward inclusion programs in our community for each unique signature gathered during February 2012 (up to $5,000).
January 23, 2012 | 12:13 am
Posted by Michelle K. Wolf
Like many of you, I have been closely following Rep. Gabby Giffords’ step-by-step recovery from a bullet to her head as part of a horrific assassination attempt last year. Watching the recent video in which she announced her resignation from Congress was a reminder of how far she has come, but also visibly showed that she still has a very long road to recovery.
I’ve read excerpts of the book, Gabby, written by Giffords and her husband, Mark Kelly, and they go into detail about the rigorous and comprehensive speech therapy and physical therapy she has received, supervised by Kelly and Giffords’ mother. Along with these two personal advocates, Giffords has been helped by the highest-level team of specialists, therapists and caregivers. As a member of Congress, she also had access to some of the best medical insurance available in the United States, as well as private resources to supplement what insurance didn’t cover.
What happens to most traumatic brain injury (TBI) victims? For many adults with inadequate or no insurance, their ability to access therapy after the initial acute phase is often curtailed or severely limited. As one patient-advocacy Web site says:
“At the initial stages of an injury, patients are treated without much regard for insurance coverage. It is after the patient has been stabilized that the type of insurance coverage starts to play a role.”
I have met more than one family who is caring for an adult family member with TBI at home, and the results are often devastating. Both the patient with TBI and the family caregiver are unable to work, causing financial and emotional stress for the rest of the family. After the first year or so, many patients can’t get funding for the additional speech and physical therapy they require, and there are often setbacks, such as seizures, along the way. Services for adults with TBI are piecemeal and fragmented, and determining eligibility, filling out all the paperwork and then fighting to keep services going can contribute to the frustration and despair of many family caregivers.
With the current circus-like atmosphere of the Republican primaries, and all the fear-mongering over the Affordable Care Act (that’s the real name of national Health Care Insurance, not “Obamacare”), I wonder if this issue, which according to the CDC impacts 1.7 million Americans every year, will ever be discussed in a rational and meaningful way. After all, can anyone be certain they won’t, at some time, have a family member who is the victim of a catastrophic car accident, a near drowning incident or a bad fall?
On a more positive note, I want to share what the Los Angeles Jewish community is doing as part of national Jewish Disability Awareness Month in February. Under the banner of “Inclusion Awareness Month” (I.AM.) The Jewish Federation of Greater Los Angeles is coordinating community-wide events and programs that target both professionals working with families with special needs and the general community, with the goal for each to create an overall inclusive community. Check out the long and impressive list at jewishla.org/pages/inclusion-awareness-month-iam, and make plans to attend as many events as possible. Even better, share the information with your friends who haven’t yet been personally touched by disability.
January 14, 2012 | 11:47 pm
Posted by Michelle K. Wolf
Injustice anywhere is a threat to justice everywhere.
~Rev. Martin Luther King Jr.
As I was thinking about how exactly to make a connection between Martin Luther King Jr. and disabilities/special needs, along came a blog post from Ellen Seidman over at Love That Max, quoting from blogger Chrissy Rivera about her daughter, Amelia, a 2-year with a rare genetic condition whose doctor at Children’s Hospital Philadelphia (CHOP) has recommended that her daughter not receive a kidney transplant largely because Amelia is “mentally retarded.” You can read Chrissy’s post here.
Without this kidney transplant, Amelia will die within six months to a year.
It’s unbelievable that in 2012, this could happen, and yet cognitive ability is apparently part of the standard criteria in deciding who gets (or doesn’t get) an organ donation. (And in Amelia’s case, the family is willing to use a family donor, so the issue isn’t just the scarcity of viable organs).
It reminds me of that ugly chapter in our American history when southern states were allowed to count slaves as 3/5 persons for purposes of apportionment in Congress (even though the slaves could not, of course, vote.). In CHOP’s approach, some people clearly “count” more than others.
What would MLK have done? Organized a protest in front of CHOP maybe, or called on the editor of the Philadelphia Inquirer to pen a strongly-worded editorial condemning this denial?
Thanks to the power of social media, there’s been a huge response to Chrissy’s post in just a short time and over 9,000 people have signed a petition over at change.org, I just saw that emails are going directly the Board of Trustees at CHOP to encourage them to reconsider this decision. (I don’t envy their PR director this evening.) Will another Children’s Hospital consider taking on this case?
As I type this, our teenage son who also received a “mentally retarded” label at one point is flipping through his favorite Hebrew song videos on his new Ipad. Who really knows what little Amelia will or won’t be able to do as she gets older, if only the medical establishment will give her a second chance.
And what should everyone else be doing to help Amelia and her family? Martin Luther King Jr. said it best:
“Human progress is neither automatic nor inevitable… Every step toward the goal of justice requires sacrifice, suffering, and struggle; the tireless exertions and passionate concern of dedicated individuals. “