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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February 24, 2012 | 7:18 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 | 1:54 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 | 12:11 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 2, 2012 | 11:58 pm
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 22, 2012 | 11:13 pm
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 | 10:47 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. “
January 8, 2012 | 2:17 am
Posted by Michelle K. Wolf
With the entertainment awards season now in full swing, I challenge the motion picture industry to show us a signficantly developementally disabled teen or older adult who is not just getting by, but thriving with friends, a job, and more. The Los Angeles-based screenwriters wouldn’t have to travel far to find a non-verbal autistic teen who can’t speak orally, but can type out college-level essays on love, life and loneliness. Or the young adult with CP who is living with a roomate, working in regular employment and helping to lead davening at a local shul.
For many general movie-goers, the “special needs” film that comes to mind is “Rainman” from 1988 in which Dustin Hoffman recieved an Oscar for his role of Raymond Babbit, the older brother of Charlie Babbit played by Tom Cruise. For those of you who can’t recall the details, or never saw it, Charlie is a selfish LA hustler who has been estranged from his Dad since his teen years and when he learns that his deceased Dad left a $3 million trust fund for some guy named Raymond, Charlie makes a beeline to the Walbrook Institute in Ohio where Raymond, his previously unknown brother with autism has been living since childhood, and kidnaps him. The duo travel by car back to LA, sharing many adventures, fights and tender moments along the way. The plot is tightly focused on relationship between the two brothers, and ends with Charlie as a better human being and Raymond on a train headed back to Walbrook Institute.
But a lot has changed (mostly for the positive) since 1988. Most of the institutions exemplified by Walbrook have long been shuttered, and today adults with developmental disabilities either live in group homes, in supported independent living or are still living with their aging parents (more on that later). The shame and stigma attached to having siblings with severe disabilities has been greatly eased (take for example the Santorum kids all sporting photo buttons of the their three-year-old sister who has a rare genetic disorder, Trisomy 18). And people with disabilities are living longer than ever, thanks to medical advances.
If Hollywood can remake such classics as King Kong, The Fly and Casino Royale, why not do the same type of treatment for Rainman, in which the older relative with development disabilities (DD) is living independently and successfully?
PS I have started a part-time position with Bet Tzedek Legal Services as Transitions Coordinator, a new, three-year grant-funded initiative by the UniHealth Foundation which will provide coordinated, holistic services to middle-aged adults with developmental disabilities who are entering older adulthood. Currently, 84% of DD families served by Bet Tzedek are being cared for their parents, and 77% of caregivers are over the age of 50.