Posted by Michelle K. Wolf
Support for families raising a child with special needs can take many forms.
When Danny was around 3 years old and we realized that his “developmental delays” weren’t temporary, we began to more actively seek out help and advice. A family we had known for years with a teenager who had intellectual disabilities took us out to dinner and shared the twists and turns of their own challenging journey. Family members offered to help pay for expensive therapies. And a total stranger volunteered to come to over to our home once a week as part of the then “Family Friends” program at Jewish Family Service.
Herb Ehrmann, a successful retired attorney who had been personally touched with his own children with special needs first entered our lives 13 years ago, and still comes over once a week in the evening to provide us with some “time off” or respite from parenting a child with significant disabilities. He is always exactly on time, and invariably in a good mood.
Over the years, Danny and he have developed their own little rituals, such as eating certain food, (for many years Danny called him “Herb Toast”), and watching baseball or basketball on TV, something Danny never does with anyone else.
We usually use those precious free hours to go to the gym and have a good workout, often followed by frozen yogurt (if we are feeling virtuous) or ice cream (when we are not). Other times, we use the time to hear a lecture or see a movie, re-entering the world of ideas and culture outside of our respective work areas.
As with any close friend, we experienced good times together, such as Herb’s marriage to his lovely wife, Connie, and summer evenings in their Jacuzzi, as well as the darker, sadder parts of life.
In addition to coming over to our house once a week, Herb also volunteers for Chaverim, the social/recreational program also provided by JFS (with partial Federation funding). He takes the adults bowling, and goes away overnight with them on Shabbatons and other special events.
This Sunday, Herb is being honored at the10th Annual Shining Star Fundraiser for his 20 years of “generous and dedicated service” to Chaverim at 2 pm at the Milken Community Campus, 22622 Vanowen Street in West Hills.The program will feature a special performance by the Chaverim Singers, silent and live auctions and appetizers & desserts.
For us, Herb has become a very close family friend indeed and we wish him Mazel Tov on this well-deserved honor.
6.14.13 at 5:24 pm | We need to add more seats at the "grown-up" table. . .
6.6.13 at 11:40 pm | Some kids don't really want school to end
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. . .
6.14.13 at 5:24 pm | We need to add more seats at the "grown-up" table. . . (60)
8.20.12 at 10:33 pm | It's a good time to stop using the "r-word" (10)
6.6.13 at 11:40 pm | Some kids don't really want school to end (8)
June 16, 2011 | 11:48 pm
Posted by Michelle K. Wolf
Last night I attended the “Father of the Year” 2011 Awards dinner at the Beverly Hills Hotel which benefited the American Diabetes Association, and was deeply moved by the videos, tributes and speeches of the three honorees. One of the honorees was Dr. Kevin B. Kaiserman, a pediatric endocrinologist who works with Type 1 diabetes kids and teens (a newly-diagnosed 17 year-old kept texting him questions during the evening). He talked about how his own father, also a physician, took Kevin along with him to see patients when he was just a child (way before patient privacy laws) and showed him by example how to be both a caring doctor and a loving Dad.
I wish there was a similar gala evening honoring those Dads of kids and teens with special needs who go way beyond the call of duty.
The Dad who takes his twin kids with severe asthma to the Cedars ER so often that the graveyard shift staff members know his name. The Dad who spends every night sleeping with his daughter who has seizures to make sure she makes it through the night. And the Dad who spends countless evening and weekend hours helping his son with cerebral palsy learn how to walk (I’m getting personal here).
What makes these Dads really special is their commitment and dedication to their children, despite the conventional thinking that after a special needs diagnosis, Dads tend to retreat into their professional lives and re-double their efforts to make more money while the moms typically take on the day-to-day tasks of therapies, medical appointments and fighting the insurance company for coverage.
As Jill Brooke said in a HuffPost piece posted on Oct. 24 2008 :
“A recent study in The Journal of Consulting and Clinical Psychology revealed that parents of a child with attention deficit hyperactivity disorder are nearly twice as likely to divorce by the time the child is 8 years-old….
The caregiver—usually the mother—will feel like a twister has ripped through her home and heart, literally uprooting her life. To survive is a daily struggle; to thrive requires a candor between husband and wife that drills into the deepest crevices of their beings and leaves no emotional stone unturned.”
In the Jewish community, our biggest accolades are typically given to the men who have been professionally successful, are the biggest philanthropists, or garner the most Oscars. We tend to stay away from talking about the work/life balance when it comes to fathers, and ignore the fact that 60-hour week jobs can often take guys away from being actively involved in their families, with or without special needs.
I want to end by giving a special shout out to my husband, Aron Wolf, for being such a great Dad for both of our children, and trying to live up to the immortal lyrics of “The King and I” when Yul Brenner sings, “Everyday I do my best for one more day”!
June 10, 2011 | 12:21 am
Posted by Michelle K. Wolf
I don’t spend much time worrying about vampires, mutant aliens or even earthquakes (okay maybe a little) but the fear monster that lurks in the back of my head is: will someone else ever be able to take care of our teenage son Danny with multiple disabilities as well as we do?
This fear was intensified the other day while reading the NY Times article of June 5th, 2011 with the blood curdling headline of A Disabled Boy’s Death, and a System in Disarray, part of a larger investigative series, highlighted the problem of low-paid staff, some with criminal backgrounds, who often provide the hands-on caregiving on a daily basis. After just finishing reading “The Beautiful Girl” by Rachel Simon, which provides a historical fictionalized account of similar state institutions during the 60s , including many acts of cruelty and violence against disabled residents, I had felt thankful that we were living in better, more enlightened times; the NY Times article felt like a slap in the face.
Because of this investigative series of articles, I am sure that a full government investigation will take place, some people (mostly lower level) administrators will be fired, and things will improve, at least in the short run. But the fear that a crazed, stoned minimum wage worker can hurt or harm our son remains high.
While worrying about this distant future, I do have something far more pleasant to look forward to (as does he)—the Camp Ramah California Tikvah program which starts in just a few weeks. Danny will be accompanied by a wonderful aide, who we have literally known since his birth, and I know that Danny will be well-cared for, even spoiled by having tons of attention from campers, and staff. We have already begun to pack the first duffel bag, and almost every day Danny finds another toy, a book, that he wants to see packed.
We will all benefit from the 26-night break (but who’s counting?), and will enjoy a happy reunion mid-July The question is, how can we take that wonderful away-from-home intensive Jewish experience (with a pool to boot!) and turn that into an adult lifetime?
June 2, 2011 | 9:43 pm
Posted by Michelle K. Wolf
In the Jewish community, there’s a certain jockeying among parents (at least among the moms) about whose kid spoke first, or who said the longest sentence, or who asked the best question. And while an early verbal ability often equates to high intelligence, what about the kids who can’t verbalize?
In our journey with Danny, we have met many disabled children, teens and adults who can’t verbalize, due to various developmental disabilities, yet they still have plenty to say, if only they can find the right alternative communication system. For some, it takes a complicated computer voice output device to be able to communicate, and for others, a simple letter pointing board can make all the difference.
Over the years, Danny has worked his way up the ladder of various alternative electronic devices, starting with a simple device such as this
and he is now using a pretty sophisticated voice output device that uses icon pictures, as well as a keyboard. Most of the time, he likes to tell us what he wants to do such as go to the beach or the park, or talk about his cat (a major topic as you might gather from previous posts). Lately, he is also using it to look ahead at the calendar, such as upcoming holidays and when Camp Ramah starts. In school, he uses it for spelling words and to help drill the Freshman basketball team (his aide is a former basketball coach).
There’s a new documentary called “Certain Proof: A Question of Worth” which will have its west coast premiere in Los Angeles this coming Saturday, June 4th at 10 am at the Laemmle’ Sunset 5 as part of the “Dances with Films” low budget independent film festival.
The film is a feature documentary about three children living with significant communication and physical disabilities and depicts their parents struggling against the public school system in an emotional battle to prove their worth. I am hoping we can get a copy of the film for a showing when it is not Shabbat, but in the meantime, you can get a real sense of the film by watching the trailer at http://www.certainproof.com/press.html
Although Certain Proof doesn’t feature any pirates, drunken bachelors or food-poisoned bridesmaids, this is still a summer film worth seeing.
May 26, 2011 | 11:23 pm
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.
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/
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
March 30, 2011 | 10:35 pm
Posted by Michelle K. Wolf
“Everyone came here tonight for a reason,” said Dr. Michael Held,
Founder and Executive Director of the Jewish special needs non-profit
Etta Israel, “whether you are a parent, a potential resident, or a
sibling or other relative of a Jewish adult with developmental
disabilities.” The 70 participants, some wearing head coverings and
many not, looked around the room exchanging knowing glances, a
collective sense that we are all on the same quest to find a “home”
for our loved ones with special needs when it is time for them to
leave the nest.
A new innovative independent housing program called J-CHAI was
launched by the Etta Israel Center Tuesday night in the boardroom of the Los Angeles Jewish
Federation, funded in part by a $200,000 three-year Cutting Edge grant from the
Jewish Community Foundation of Los Angeles.
Dr. Held explained that this new housing model was based on four years
of research and discussion (including input from the Federation’s Task Force
on Housing for Jews with Special Needs) ,and took into account many current trends.
First of all, more adults with developmental disabilities and their
families are seeking a higher level of independence than afforded in
traditional group home settings (Etta Israel also operates 3 Jewish
group homes in North Hollywood and a fourth is in the works). This
desire for greater autonomy is accompanied by the fiscal realities of
California –- more people are now diagnosed with developmental
disabilities- and the average costs of each client is increasing as more
of the state caseload reaches adulthood along with the mounting
So what exactly is J-CHAI?
It probably helps to begin with what it is not. It is not a building.
It is not a kibbutz-style arrangement. And it will not be the same for
J-CHAI will help families find regular market-value apartments
clustered in the Pico-Robertson area, as well as finding an
appropriate roommate, and then with its staff, establish both
independent living and Jewish life goals for each resident. As Dr.
Held joked, “J-CHAI keeps the ‘J” in your child’s Chai (life).” For
the first time in their lives for many of these Jewish adults,
targeted at ages 18-35 (and older, on a case-by-case basis),
They will have the ability to exercise control
over their lives in such areas as community, communication,
empowerment/independence and Jewish values.
Each participant’s schedule will be individualized, with most
residents either engaging in vocational training, educational
opportunities or working, depending on their abilities and skills.
Through the state-funded Regional Centers, many will receive ILS
(Individual Living Skills) or SLS (Supported Living Skills) in such
areas as money management or travel training. Those with more
significant behavioral or physical challenges may get IHSS hours (In
Home Supportive Services) funded by the state, provided the program is
With this innovation and higher level of independence come costs.
Families will have out of pocket costs –the costs of rent (shared by a
roommate), a sliding scale J-CHAI fee of $1,200-$2000 month, and
everyday costs of food, utilities, etc. Government funding such as SSI
(Social Security Income) can help defray some of the costs. The
estimated range is $2,300-3,600 a month, with the hope of attracting
other funders down the line.
The program is designed to provide ongoing support, year after year,
All participants are asked to commit for a minimum of one year to be
accepted into the program; this commitment will help create with the central goal of building
a strong sense of community among the residents.
One of the parents who spoke during the presentation said that her
son, now 30 years old, lives in one of the Etta group homes and lives
a “full and wonderful life”. Most of all, she said, she is filled with
gratitude and peace of mind.
Isn’t that what every parent wants for their grown children?
For more information/applications, go to www.etta.org or send an email
March 22, 2011 | 10:50 pm
Posted by Michelle K. Wolf
Last year, we spent most of April (including Passover) in Israel since our oldest daughter was spending her “gap” year there between high school and college. She was enrolled in an intensive Israeli leadership preparatory program called “Nachshon” named after the Biblical hero who was the first Israelite to jump into the Red Sea. Legend has it that the Red Sea didn’t actually part until Nachshon was up to his nose in the water.
Traveling 7,500 miles away across ten zones is tough on anyone, but Danny did pretty well on the trip over, excited about seeing his big sister, and for some inexplicable reason, really enjoyed the hot kosher meals served on the plane. During our flight from Philadelphia to Tel Aviv, we met another family who was also traveling with a physically disabled child; they had other grown children (and grandchildren) living in Israel so they made the sojourn at least twice a year. They gave us a few tips about which bathrooms on the plane were the most accessible, the procedures for departing the plane with a wheelchair at Ben Gurion Airport and what to watch out for when using our California disabled placard, (some of the disabled spots in Israel are reserved for specific people/placard holders, but it can be hard to tell).
We had a joyful reunion in the airport in the afternoon and then got our rental car—we held our breath that all of our luggage and Danny’s large stroller and walker would fit in the economy-sized car we had pre-ordered on the Internet, but luckily, we were upgraded and the trunk accommodated everything. Long after dark, we arrived at our Jerusalem apartment on the 6th floor (with a very small and very slow elevator) and settled into our temporary home.
The first place we went to visit was Hebrew University - Mt. Scopus campus to get that magnificent view of all of Jerusalem, and we stopped for a snack at the local Aroma coffee shop (think of a kosher trendy Starbucks with a much bigger menu). It was difficult to get Danny up the narrow front steps, so I wheeled him around to a side door which was heavy and hard to open. The place was crowded, with tables close together, and hard to navigate even with the walker, and we finally were able to sit down.
An employee with Down Syndrome came around to pick up the dirty dishes from the people before us. Some of the patrons stared at her, and also at Danny, but then an older, professorial-looking woman entered and started to chat with the young woman, asking her about Passover plans and then said “Chag Sameach” to her (and to us on the way out).
(I later found out from the non-profit Eleywn Israel http://www.israelelwyn.org.il/ that they work closely with Aroma coffee shops to train and place workers with disabilities and that Aroma has a longstanding policy of hiring workers with disabilities and in fact, almost every Aroma restaurant in Israel has at least one such employee.)
This theme of stark differences between the positive and negative aspects of disability continued during our trip. At times we would find a great disabled parking spot, but with no curb cuts. Or, in crowded malls and venues, people without a disabled placard would pull into the space ahead of us. When we complained to the security guard standing just a few feet away, he would mumble, “I can’t do anything about it”.
On the other hand, some people took great pains to include us, including a lovely modern Orthodox family who we met in the neighborhood shul. They invited us over for a lavish last night dinner of Passover, with four courses, Torah study, and a look at the husband’s photos from his post-army trip to the states many years earlier. They were fine with Danny playing with toys on the sofa, or even rolling around on the floor as the evening grew late.
One of the more interesting incidents took place a few days into the Passover holiday when the elevator in the apartment building broke down and the key part to fix it wasn’t going to be available until “after the holiday”. There were many families with young children in strollers, so this was a hardship for many of renters. But when people saw us coaxing Danny up and down 6 flights of stairs with his walker (and he managed to do it, even if it took even longer than the slow elevator), they grew furious with the apartment management, and our situation became the key point of protest. Many renters personally apologized to us for the inconvenience.
Next: Our visits to Beit Issie Shapiro and Kibbutz Kishorit
Note: A sad farewell to Kenneth Schaefler, a friend, role model and colleague who devoted his professional career at the Los Angeles BJE to make Jewish education available to students with diverse learning needs. He championed disabilities awareness, special education services at Jewish day schools and worked with state-funded regional centers for early detection and intervention as well as professional development for teachers. May his memory be a blessing.
March 18, 2011 | 11:39 am
Posted by Michelle K. Wolf
In Joan Didion’s powerful memoir “
The Year of Magical Thinking
” detailing her grief process after losing her husband, Gregory Dunne, she talks about a seeing their family doctor who is also a good friend. He asks her how she is and just hearing the question prompts a shower of tears. “I just can’t see the upside in this,” is how she finally answers the doctor.
Although by no means an equivalent situation, that quote pretty much sums up the situation now faced by children, teens and adults with development disabilities in the State of California.
In a week filled with images of the Japanese earthquake, tsunami and nuclear disaster, ongoing fighting in Libya and the savage murder of the Fogel family in Israel, you may have missed the news report that the State Legislature approved over $6 billion in cuts to health and human services in California. Just as a reminder, here’s what six billion looks like: $ 6,000,000,000.
For persons with disabilities who are low-income and have complex conditions, these cuts will impact every aspect of their lives, from the reduced hours of in-home help with the most basic tasks of everyday living such as toileting and eating to capping the costs of hearing aids for Medi-Cal adult recipients to $1,510 a year, which in most cases will only pay for one very basic hearing aid that isn’t suitable for many adults with special needs.
In addition, Medi-Cal providers are getting a 10% permanent cut on top of previous cuts, which means that fewer doctors and clinics will even agree to see Medi-Cal patients. And public school budgets including special education, are also taking a huge hit, with more pink slips coming soon.
Direct cuts to persons with disabilities are coming by way of “service standards” which sound good but really means rigid rules that limit “the type, scope, amount, duration, location, and intensity of services and support purchased by regional centers for consumers and their families. The “standards” could even “prohibit the purchase of specified services”—whether the consumer needs them or not.
Yes, I understand that our state budget is in shambles and there’s not enough money to go around no matter how much we beat our chests and picket the State Capitol, but I’m not seeing any creative solutions to covering this gap either. How about having all the financial institutions in California that got federal stimulus funding to provide no-interest loans to social service providers and school districts? Or having the top 50 foundations and wealthy individuals give away an extra percentage point or two of their investment dividends to close some of the gaps? Working together in new ways to help the most vulnerable among us could actually be an upside.
For more information about the state cuts to persons with developmental disabilities, go to Keep the Lanterman Promise at http://keepingthelantermanpromise.net/ and Advocacy Without Borders: The California Disability Community Action Network at http://www.cdcan.us/