Posted by Michelle K. Wolf
If a picture is worth a thousand words, than one video (or two) must be worth even more. This week, I watched two short videos (yes, the links are coming) on the subject of how people perceive people with special needs.
The first was a new Public Service Announcement (PSA) produced by a national joint effort of Special Olympics and Best Buddies to get people to stop using the word “retard” in their everyday language as a synonym for “stupid”. This “Spread the Word to End the R-Word” (http://www.r-word.org) campaign is trying to raise awareness that the current common usage of the R-word is in fact, very offensive to people with intellectual disabilities, and for those who love them.
Their new 30-second PSA is called “Not Acceptable” and it first aired after Glee on Tuesday night, featuring people of different ethnic backgrounds, each of whom expresses that it is not acceptable to call them by what were once common words, but are now recognized as offensive slurs. At the end of the PSA, co-star Jane Lynch joins Glee actress Lauren Potter and together, they ask viewers to stop using the R-word. (This video was pre-screened and endorsed by a number of advocacy organizations including the ADL, GLAAD and the NAACP.)
Watch the PSA here
The second video was shown at The Friendship Circle of Los Angles 8th Annual Evening of Recognition on May 25th, in which I was honored to be honored, along with Mrs. Raizy Brief.
In this video, the letter of choice was “F” as in the Friendship Circle, and their Friends At Home program, which matches teen volunteers with participating children and teens with special needs in their homes. Teenagers receive training and preparation before their first visit. This is just one of a dozen programs offered by Rabbi Michy and Miriam Rav-Noy, along with their dedicated staff and the hundreds of teen volunteers.
Ariel Bernstein, a very articulate high school volunteer, spoke at the dinner, described how she bonded with her teenage “match”, a fun loving Orthodox teenage girl I will call Bracha with whom Danny has attended public school for many years. Ariel spoke that although Bracha can’t speak well, but she is able to use sign language to communicate. At one point, Ariel wrote their names down on a piece of paper. Bracha immediately intertwined her index fingers, making the sign for “Friendship.”
You can watch the Friendship Circle video here:
Please, sign the pledge to stop using the R-word, and even more importantly, open your hearts and minds to potential new friends.
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May 20, 2011 | 3:22 pm
Posted By Sally Weber and Michelle K. Wolf
Michelle: The email invitation came on Friday, May 6th while I was at the pool for Danny’s weekly swim lesson. As I watched him laughing and kicking around with his long-time swim instructor, I read over the text a few times. It read: ”Attached is an invitation from President and Mrs. Obama for Jewish American Heritage Month. We hope you will be able to attend the event.” And then I opened the attachment with a Presidential seal on top. Sally Weber and I, co-founders of HaMercaz, the one-stop program funded by The LA Jewish Federation for Jewish families raising a child with special needs, were actually being invited to the White House on May 17th, to celebrate the “generations of Jewish Americans who have helped form the fabric of American history, culture and society.”
Luckily, I was going to be on the East Coast anyway, to see my daughter perform in an off-off Broadway show, so it wasn’t too big of a hassle to book an Amtrack train from New York to DC and change the return flight home.
When I told Danny, my 16-year-old with CP and other developmental disabilities that I was going to stay an extra night on the east coast to see the President he got very upset. I asked him what I should talk to President Obama about if I had the chance. He replied, “Shuki” the name of our cat. I told him the President family’s had a dog, not a cat in the White House. The next day, I again asked the same question. Danny replied quickly:” Get a cat!”
On May17th at 1:45 pm, under drizzling skies, we gathered at the southeast entrance to the White House, going through our first security check, making sure our names were on the list and our photo ID matched our name (we had given our social security numbers ahead of time to the Social Secretary), and then to the X-ray/security tent before entering the east wing of the White House. A Marine in dress whites greeted us, “Welcome to the White House.” I had to keep remembering I wasn’t on a back lot at Universal Studios.
In the Ladies Room, everyone was primping, reminding me of a Prom Night. I thought I would look like a tourist snapping away photos, but everyone else had the same idea—35 mm cameras, cellphone cameras, and video cameras. There weren’t any restrictions on what we could photograph so we all took pictures of everything—chandeliers, vases, and views, even the kosher food menu.
As the male a cappella group, The Maccabeats from Yeshiva University performed, the crowd of around 200 surged toward the gold rope that had been set up in front of the stage. William Daroff, the head of the Jewish Federation’s of North America DC office had warned me ahead of time that to have a chance of actually shaking the President’s hand, you needed to be right up against the rope.
Although some tall people did get in the way of a perfect sightline to the stage, I could nevertheless see President Obama walk over to the podium very well (good thing he’s tall) and the excitement in the air was like the opening of a U2 concert. As it turned out, I was close enough to shake the President’s hand (twice) and ask him Danny’s question. “Mr. President,” I said, starting to feel very silly, “my son wants to know if you will get a cat in the White House?”
A half smile appeared. “I’m not really a cat guy.” he said. In retrospect, I should have asked, “Are you a post 67-borders kind of guy?” but it was two days before the big speech.
My White House adventure began with an excited call from Michelle: “Did you get the White House invitation? Can you go??” Hadn’t a clue what she was referring to. And I was about to Skype with my grandchildren in Houston (we DO have priorities, after all!) By Sunday, it all became clear: my invitation had been emailed to Michelle along with hers, we were indeed invited to the White House. And all priorities changed! I was able to invite my husband, Malcolm, as well—we scurried for reservations (ended up on separate flights because of the late notice) and I proceeded to bounce off the walls for the next seven days.
Our visit started with a very special opportunity as we joined long time friends Janet and Rep. Henry Waxman at the Holocaust Commemoration Ceremony that Capitol Rotunda, an event honoring Elie Wiesel and keynoted by Supreme Court Justice Stephen Breyer. Henry was also one of six Congresspeople who escorted camp survivors as they participated in candle lighting ceremony. We entered the Rotunda through the Hall of Statues, flanked by military personnel in full dress, each holding a flag representing the U.S. Army battalions that had liberated concentration camps. The US Army Band played a moving medley of Jewish music that echoed through the great Rotunda. For me, the most moving moment was after the event—when Henry joined the survivor he hosted, a very elderly woman who refused to use her walker and instead walked elegantly on Henry’s arm to the candlelighting, flanked by her children, grandchildren, and I suspect great-grandchildren for a family portrait of this powerful moment.
From there to the Senate Dining Room for lunch, then to the White House. Dayenu! But our day had just begun. The reception was held in the East Wing, where the entire second floor was open for our celebration. Following the Maccabeats’ performance (I’ll be the coolest grandmother in Houston when I send my kids the photo of me posing with them..or is it them posing with me?), with no pomp and circumstance, came President Obama. He commented on the privilege of meeting briefly with the Maccabeats and actually having them sing him a short song—which went something like ‘Four more years, four more years!’ The group laughed in appreciation.
The event was on live feed—my daughter said that the second he walked in, all you could see were cell phones and cameras in the air. Guilty as charged! A few minutes, a handshake (strong, lots of eye contact) and an autograph later, we were off to the party. Kosher food and Hatikvah at the White House—who could imagine? As mentioned, all the rooms were open to us—who knows who sat on the chairs that Malcolm, Michelle, Rabbi Denise Eger, Rabbi Adam Kligfeld and I sat on that afternoon!
We were a widely diverse group—academics, rabbis, members of social service organizations, Democratic Party activists, authors and artists. Almost universally, two degrees of separation at most. The 200 people gathered shared a similar thread of conversation: How did you happen to be invited? Names and emails were exchanged, new networks established. The adrenaline rush continues!
OK, the universal question from everyone: What are you going to wear? Bottom line, we all looked great. And as a friend said to me, ‘Well, whatever you wear, the Obamas haven’t seen it yet. Just don’t wear the same thing the next time’. Next time..from her mouth to God’s ears!!
May 13, 2011 | 12:35 am
Posted by Michelle K. Wolf
Everyone I know seems to be taking on a new role these days – taking care of aging parents or grandparents.
I spent an emotional hour with one of my dearest childhood friends at a restaurant last week, helping her adjust to her new full-blown responsibility as a caregiver for her 88-year-old mother (same age as my Dad). Her mom has been hospitalized for 3 long weeks, first for bronchitis-turned-into-pneumonia, and now dealing with getting her off a feeding tube and a worsening of her dementia. When I went to get my hair cut today, my hairdresser was talking about her mom’s slide into frailty, and inability to take care of herself anymore. And last week at shul, I got into a brief conversation with a newer congregant, who was there with his 91-year-old Mom, who whispered to me, “I see you here with your son and wondered how you did it. Now I’m Mom’s caregiver. She’s acting more like 19 than 91—she’s so stubborn.”
As my 19-year-old daughter used to say: Welcome to My World!
The type of case management we have been doing for many years for our son in order to get the optimal medical care, medications and therapies is a new skill that many of my same-age peers are just starting to learn. With the graying of the Jewish community now in full swing, it is time that everyone learned a few key lessons of how to provide caregiving for a relative:
1) Get a big 3-ring notebook or an accordion file and start keeping every piece of paper connected with your loved one in the same place, in chronological order
2) Create a phone directory with the names, phone numbers and emails of every professional with whom you come into contact—do not keep the information scribbled on a bunch of post it notes attached to your computer
3) Try to plan ahead for possible next steps—so that can mean checking out different in-home options, assisted living or even skilled nursing homes. Having knowledge ahead of time will go a long way to minimize stress down the road
4) When someone is in the hospital, it is critical that family members or close friends be there to be advocates. Hospitals are disconcerting even for the healthy, but when you are sick on top of being elderly or disabled, it can be much worse. Paying close attention to which medications are being administered is very important.
5) Always be on the lookout for the positive—in the midst of medical appointments and therapies, you can easily overlook the chance for something wonderful, like a smile on seeing a rainbow or enjoying a frozen yogurt on the way home.
Above all, always treat your loved ones as you would want to be taken care of—because in a few years, you may be on the receiving end of caregiving.
May 8, 2011 | 1:57 am
Posted by Michelle K. Wolf
This year, for the first time in my life, we are “counting the Omer”, the 49-day period between Passover and Shavuot, which is traditionally considered to be a period of spiritual elevation and self-fulfillment. Every morning, Danny takes a marble from a large container and moves it to a small container and we say the bracha together. We consider this part of his “functional math skills”.
Each of the seven weeks of the Omer is given a separate emotional attribute that we are supposed to really focus in on. As it happed, Danny’s annual IEP (Individual Education Plan) meeting at LAUSD fell on Day 15 of counting the Omer, which begins a week of “Tiferet”, translated as “harmony” or “compassion”.
For those of you lucky enough to have missed the experience of an IEP meeting, it’s kind of like a cross between a very grueling job interview and a parent-teacher conference. There are usually many representatives of the school district, including the special education teacher, special education administrator, general education administrator, and the various specialists such as speech therapists, occupational therapists and physical therapists.
The stated goal of the meeting is to “design an educational plan to meet your child’s individuals needs” but invariably, there are attempts to remove or shorten services provided by the specialists, and we spend most of our energy as parents trying to keep the services we have.
As it turned out this year, the IEP team was a good one, with everyone providing mostly positive reports and suggestions, but when it came to the specialized services, it was all about cutting back services. The speech therapist said he was looking for a more flexible approach than once-a-week 60 minutes and proposed 30 minutes of consultation in the classroom. We were fine with being more flexible in how the speech therapy was provided, but pushed it back up to 45 minutes. Then the occupational therapist wanted to cut her once a week session from 30 minutes to 25 minutes. We said no way. Everyone present on the “team” knew that the real reasons for the proposed cuts was the state budget, but wasn’t allowed to say that, so we all did a delicate dance around the real issue of public education funding, or lack thereof.
Every one present was professional and kind, and showed a genuine interest in Danny’s education. We walked out feeling a sense of compassion, even if the money counting is the subtext for all of the other assessing and quantifying.
April 28, 2011 | 11:32 pm
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.
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/