Posted by Michelle K. Wolf
Phoebe Snow, the pop-jazz singer-songwriter whose single “Poetry Man” climbed into the Top 5 in 1974 died recently and her obituary in the Los Angeles Times prominently included her role as mother and caregiver to her daughter, Valerie, who was born with brain damage in 1975.
“It was very, very tight,” Snow told the San Francisco Chronicle in 2008. “Occasionally I put an album out, but I didn’t like to tour and they didn’t get a lot of label support. But you know what? It didn’t really matter because I got to stay home more with Valerie and that time was precious.”
In another earlier interview with the Los Angeles Times she said that the toll of caring for her daughter, and at times, her elderly mother, left her little energy for her own musical career. What prompted her to return to her music was a comment from her therapist.
“One day, she says to me, ‘Look at how efficiently and aggressively you fight for your child, and have fought for your mother. Why didn’t you do that for yourself?’ ” recalled Snow.
Her comments reminded me of what my own mother (of blessed memory) had said to me when our son, Danny was first diagnosed with developmental delays. “You have to be like a mama lion,” she said, “go and fight for him to get every service, every chance he needs to be the most he can be.” And this was many years before Sarah Palln’s “mama grizzlies” and Amy Chua’s, “Battle Hymn of the Tiger Mother”. Mom was always ahead of the curve.
I took Mom’s advice to heart and read up on everything I could about federal funding of Early Intervention, California State Regional Centers and Individuals with Disabilities Education Act (IDEA), a key piece of federal legislation that governs special education and other related services to children with disabilities. I was determined that I would never be intimidated by medical jargon, bureaucrats and acronyms. It was almost like getting another graduate degree.
Mother’s Day is around the corner, and since my mom passed away in 2006, it is a day I would just as soon forget about altogether. I try to avoid the perfume sections of the department stores, where the young clerks come up to me and say, “What’s your Mom’s favorite scent?” And the card section of the stores are tough too, since Mom in her later years specifically asked us to buy her more sentimental cards than the humorous ones we were prone to purchase.
Farewell Phoebe—Thanks for sharing your talents and your unabashed love, and thanks Mom, for making me the Mama Lion I am today.
5.23.13 at 10:12 pm | You can't get your cake without working the steps
5.17.13 at 6:13 pm | Disability advocates in CA: We need your help now. . .
5.8.13 at 9:28 pm |
4.26.13 at 6:59 pm | The 3rd ADVANCE conference in New York City is a. . .
4.16.13 at 10:39 pm | Chasing around a ball can have lasting impacts. . .
4.2.13 at 11:59 pm | Ending discrimination for one group means more. . .
5.23.13 at 10:12 pm | You can't get your cake without working the steps (52)
5.17.13 at 6:13 pm | Disability advocates in CA: We need your help now. . . (34)
5.8.13 at 9:28 pm | (12)
April 21, 2011 | 11:23 pm
Posted by Michelle K. Wolf
A recent national Parade magazine article titled, “Who Will Care for Dana” spoke to a major issue for many parents of kids with special needs—will there be a warm, safe and loving home environment for all the soon-to-be adults with developmental disabilities? And even more pointedly, who will pay for it?
With one in every 110 children (and one in 70 for boys ) now diagnosed with autism, there is simply not enough housing to accommodate the landslide of adults coming of age who will need to find a home away from their parents’ house in the next few years. When we visited Israel last Passover, we spent a delightful day at Kibbutz Kishor located in the northern hills of the Galilee and home to 140 residents with special needs, along with paid staff and volunteers. A friend of ours from Los Angeles had made the appointment, and was there with her family (they also have a teenager with developmental disabilities).
Our two families drove in from Jerusalem (unknowingly picking one of the worst days possible to do so during the Passover holiday, and ended up a traffic jam rivaling the 405 during rush hour). Once we arrived at Kishor, we took a long exhale when we saw the beautiful flowers, trees, and pastoral surroundings.
We first met with Shuki Levinger, the CEO of the program, who shared with us the history and vision of the program. The village of Kishorit was the brainchild of Israeli families who came together in 1994 with professionals in the field to find a better alternative for their disabled loved ones than what was then available –either an institutional structure with little individual independence or stuck at home with aging parents.
After a decade, Kishorit became an integral part of Kibbutz Kishor, and received the status of Associate Kibbutz as part of the Ha-Shomer Ha-Tza’ir kibbutz movement. The most remarkable thing about the Kibbutz is that residents have many different opportunities for meaningful work, from helping to manufacture old-style wooden toys to different agricultural work, such as helping with the goat farm or organic egg farm specializing in miniature schnauzers and dachshunds, with the champion blue ribbons and trophies to show for it!
One interesting side note: During the Second Lebanon War in 2006, Kishorit (which is very close to the border) was heavily impacted by the rain of Katyusha missiles and it was impossible to move the entire community including the medical and psychological support team, so they made the decision to stay put. Many of the northern residents in the area moved south but couldn’t take their dogs with them, so Kishorit, with its many kennels and dog food supplies, became the safe haven for many of the dogs in the area for the duration of the war.
Even with Israeli government funding and the various industries, Kishorit still has a hard time meeting all of its expenses. Many staff members live right on the kibbutz, creating a wonderful sense of community. Residents have their own private living spaces, with staff assistance available as needed.
Shuki explained to us that the Kishorit founders and staff wanted to expand their work in the Arab Israeli sector, and hoped to create a multicultural community but it became clear that that community needed to maintain their ethnic and religious identities in a distinct community setting and a sister facility called “Alfanara” (“the Lighthouse”) was created a and although residents from the two facilities don’t live together they do work together in some vocational venues.
While Shuki was talking, our son Danny nibbled on some matzah and macaroons, and he seemed bored and disengaged, but when Shuki asked if we had any questions, Danny piped up with one word: “Pool? “ Shuki assured us that a pool was in the future plans.
As we left Kishorit, we saw residents working with the dogs, and strolling along the pathways, it began to feel more and more like a promised land.
Links to other special needs stories/programs in Israel which I have learned about (not by any means exhaustive):
1) National Down Syndrome Society (NDSS), My Story “The Other Side of the River” by Chaya Ben Baruch, Safed Israel.
2) Eliya-Israel Association for the Advancement of Blind and Visually Impaired Children –comprehensive programs and services for infants and young children, from all backgrounds and sectors. For more information click here
3)Israel Unlimited and JDC Supportive Communities In Israel
Israel Unlimited is a strategic partnership between the Government of Israel, JDC-Israel and the Ruderman Family Foundation, and promotes independent living and participation in the community using model programs such as Supportive Communities for the Disabled and Centers for Independent Living.
The target population of Israel Unlimited is 697,000 adults with physical, sensory, emotional, cognitive and health related disabilities, who live in the community.
Supportive communities are based on an independent living model for the elderly, with clients receiving a “basket” of comprehensive services including a professional/volunteer team who come into the client’s neighborhood. There are currently 20 Supportive Communities in Israel providing day to day assistance to 1,500 individuals and 4,00 family members, among them 700 children under the age of 18 so they can continued to live independently at home.
April 14, 2011 | 8:26 am
Posted by Michelle K. Wolf
Over the Purim weekend, a Shabbaton for Jewish adults with disabilities sponsored by JFS/Chaverim was held at AJU/Brandeis Bardin camp, and there was a late Saturday afternoon session called “Ask the Rabbi”. Questions zinged in from every corner of the room: Why can’t we eat meat with milk? Why do the Jewish holidays move around the calendar so much? Why do we sit shiva after someone dies?
Rabbi Deborah Graetz Goldman patiently answered each question quickly and to the point, but the session ended before everyone could get in his or her questions.
These Jewish adults with special needs had clearly been encouraged to ask questions, even if not afforded much formal Jewish education. In asking their questions, they were connecting themselves to traditional Jewish learning. As Barry W. Holtz, author of Back to the Sources: Reading the Class Jewish Texts writes : “In the world of the yeshiva, Jewish learning is carried on in a loud, hectic hall called the bet midrash where students sit in pairs or threesomes, reading and discussing out loud, back and forth. The atmosphere is nothing like the silent library we are accustomed to. Reading in the yeshiva is conducted in a room with a constant, incessant din; it is as much talk as it is reading. In fact, the two activities of reading and discussion are virtually indistinguishable.”
The older teenagers and adults attending this amazing Shabbaton were by and large, a very verbal group. But how can we include our children and teens in our upcoming seders when they are literally the “Fourth Son” mentioned in the Haggadah “who does not even know who to ask a question”?
During the first Passover after our son Danny was diagnosed at 13 months with cerebral palsy and development delays, hearing that description of the fourth son was very painful. Would Danny ever understand the meaning of the Exodus from Egypt? And even more importantly, would he ever be able to ask us any questions?
When Danny was young, we used a picture system to help him his express his needs and ideas, and so at mealtime, he would for example, point to the picture of the juice or the Oreo cookie. As Passover approached, we would pull out a photo of matzah and try to convince Danny that this would be a tasty alternative to those Oreo cookies (not!).
Although he wasn’t able to attend Jewish nursery school, he did go to the Shaare Tikvah once a week Sunday morning program at Valley Beth Shalom, and they always held a lively and tuneful-filled model seder, complete with a creative new story told by Rabbi Eddie Feinstein and music with Cantor Hershel Fox.
In addition, we have a number of Israeli children’s videos at home featuring the late Israeli singer Uzi Chitman, and one of those videos features all the key songs from the seder. If Danny finds a movie he likes, he will watch it over and over, and over again, and gradually absorb every syllable, every nuance.
At the actual seder, he would sit for awhile with the nursery school Haggadah that his big sister had made, and play with the various plastic toys and items that came with the “Ten Plagues” bag ( a great addition for any seder with children), and wait to hear his favorite songs. When he got bored, he would leave the table and play with toys.
Over the years, we began to invite other families raising children with special needs over to our home on the second night, and the evenings were half-seder, half-support group with the siblings having an extra good time together. The kids with special needs wandered in and out of the dining room, and everyone contributed based on their own abilities, such as the kids who are non-verbal autistics using their letter boards to make comments.
Two years ago, under the auspices of Hamercaz , the one-stop resource for Jewish families with special needs children funded by The Jewish Federation and staffed by JFS, we held a sensory-sensitive catered dinner at Beth Am for special needs families on the 2nd night, using a picture board to depict the various steps of the seder, and a soft, matted area with quiet toys off to the side for kids who needed a break. One of Danny’s friends, Ido Kedar, had pre-written a beautiful and thoughtful piece on what freedom meant to him in relationship with autism (see his blog at http://idoinautismland.blogspot.com/). Our song leader was teenager Quinn Lohmann, a friend from the Vista Inspire Program.
The kids were remarkably engaged in the service portion of the evening, but more than one melt-down took place as soon as the chopped liver was served.
Last year we celebrated just one night of Passover in Israel in a rented apartment in the Givat Mordecai neighborhood of Jerusalem. I had schlepped along a Passover cookbook, a “Mr Matzo” craft project from the Zimmer Museum years gone by, the nursery school Haggadah and the plastic toy plagues. We ended our seder a little earlier than many of our neighbors, because we could hear their songs and prayers wafting in through the windows, mostly in Hebrew, but in other languages too. The next night, Danny went over to the pile of Passover paraphernalia and said one word with a questioning tone: “Again?”.
April 10, 2011 | 11:16 pm
Posted by Michelle K. Wolf
Six years ago, I helped my friend Elaine Hall submit a grant to the Jewish Community Foundation for a brand new program called “The Miracle Project”, which would use music, dance, visual art and theater to help kids with autism and other special needs (along their typically developing siblings, plus volunteers) to express themselves creatively and to socialize outside of the conventional modes of therapeutic interventions. The actual show (actually two different productions) took place at the Odyssey Theater in West Los Angeles, and was featured in the award-winning documentary, “Autism: The Musical”.
In the intervening years, the program morphed and changed venues a few times, finding a home at Vista Del Mar, and is now called the Vista Inspire Program. We just got home from seeing the two latest shows, held again at the Odyssey Theater, and feel the same mixture of inspiration, joy and just plain fun that we felt the very first year.
Full disclosure: I am not exactly a disinterested observer, since Danny (along with his big sister) have been part of the program from day 1, but I have to confess that even I forget from year to year what a big deal it is for children and teens with developmental disabilities to have the chance to act, dance, and sing to the sound of applause ringing in their ears. So often these are the kids who are left out of mainstream sports, recreational and theater experiences that typically developing kids engage in without a second thought.
Since many of the participants have been doing this program for several years, we have all had the chance to see each others’ children grow (physically) and mature (emotionally). The kid who could only say his lines looking down at his feet is now having fun with the timing of the scene and even the shyest ones look forward to their star turns. And some of the kids are truly wonderful singers (look out American Idol!).
The staffs of the program really make the program stand apart, with professional directors, musicians and music therapists, plus a raft of community high school volunteers and adults from the entertainment and special education worlds.
Although Danny can’t do much in the singing and dancing departments, he nevertheless manages to make the most of his time onstage, and in the car ride home, communicated to us that he would like even more lines in future shows. Spoken like a true performer.
You can catch the shows the next two nights: Monday night, April 11 at 5:30 pm is the “The Wyzard Inside” a re-telling of the Wizard of Oz with a special twist and on Tuesday night at 5:30, “The Courage Club” an original play and songs written primarily by the teen participants that deals with facing our deepest fears. For tickets go to http://www.vistadelmar.org/tickets/
April 6, 2011 | 12:59 am
Posted by Michelle K. Wolf
As Americans, we tend to think to think that in general, our social service programs are the very best in the world, and that everyone else can learn from us. When it comes to special needs, at least for Jewish children and adults, there is much we can learn from Israel.
When our family was in Israel last spring, we visited two very different special needs programs in Israel that were simply amazing: Beit Issie Shapiro and Kibbutz Kishorit.
The first organization we went to was Beit Issie Shapiro in Ra’anana., a comprehensive special needs center and national program started by a South African family in honor of their father, Issie Shapiro, whose life mission was to create compassionate, progressive programs for those with special needs. We drove into the parking lot of the main campus a few days before Passover and were impressed right away with the outside playground being used at that moment by a group of Israeli Arab mothers and their children with disabilities.
During our tour, we saw the therapeutic swimming pool in use as a training class in hydrotherapy for physical therapists from throughout Israel, early intervention classrooms very similar to what Danny had attended at age 3 or 4 (down to the same Picture Cards used to let the children know what activity was next), more outdoor play areas, and then the highlight of the tour, the Snoezelen Room. These very cool rooms contain beanbag chairs, a ball pit, low lighting, and special effects through special lights, vibroacoustic stimuli and deep sensory stimulation. It is both intriguing and relaxing at the same time. We had a very tough time dislodging Danny from the vibrating, singing beanbag chair.
Beit Issie Shapiro introduced the Snoezelen concept to Israel (developed in the Netherlands in the 1970s), and has helped set up some 350 Snoezelen rooms in Israel and more than 1,300 professionals have been trained, which means almost as many Israelis have access to a Snoezelen room as they do to cell phones. In case you are wondering, the word comes from two Dutch words, “snuffelen” (to seek out, to explore) and “doezelen” (to doze, to snooze).
We avoided the on-site dental clinic, since Danny, like many children and adults with special needs, is hypersensitive regarding anything involving his lips and teeth, and he can spot a dental chair from across a football field. Our visits to the dentist with Danny here in Los Angeles are usually drama-packed, with howling, screaming, and kicking. The Beit Issie staff told us that they use the Snoezelen Room techniques to reduce anxiety levels of children with developmental disabilities and conducted a formal study to prove that the “duration of anxious behavior dropped from 23.44 minutes to 9.04 minutes” on average. (I don’t think I would have liked to been the person holding the stop watch for that study.)
In addition to a therapeutic day care (up to age 12) and after school treatments, Beit Issie is working hard to create accepting and involved communities , advocacy programs and they are working in partnership with others to improve the legal rights for those with disabilities. They provide family support with special outreach to fathers, grandparents and siblings. And they created the first accessible and inclusive park in Israel and as we saw, also work with Israeli Arabs who have children with disabilities. The list just goes on and on.
Now, if we could only find that vibrating, musical beanbag chair……
Beit Issie Shapiro is holding their 5th International Conference this summer on the topic of “Learning from the Past Shaping the Future “Tel Aviv, Israel, 5-7 July, 2011, Dan Panorama Hotel. For more information, go to http://www.comtecmed.com/beitissie/2011/program.aspx