Posted by Michelle K. Wolf
"But I don’t want to go among mad people," Alice remarked.
"Oh, you can’t help that," said the Cat: "we’re all mad here. I’m mad. You’re mad."
"How do you know I’m mad?" said Alice.
"You must be," said the Cat, or you wouldn’t have come here.”
― Lewis Carroll, Alice in Wonderland
After you fall down the rabbit hole into Special Needs land, things are never quite the same. Spring doesn’t just mean Passover, blooming flowers and hay fever—its also IEP season (Individual Education Plans at public schools). A swing isn’t just a piece of playground equipment; it’s a chance to help your child self-regulate. And the more you can embrace all that is different, the easier your life will be.
In fact, there’s much that everyone can learn from a trip to Special Needs land:
12.5.13 at 8:56 pm | The first national Leadership Institute on. . .
12.3.13 at 7:51 am |
11.22.13 at 6:05 pm | When all four Jewish movements come together to. . .
11.15.13 at 12:00 am | Self-Advocates and Family Members are furious by. . .
11.3.13 at 10:36 pm | Teachers-in-training want to include more. . .
10.27.13 at 10:12 pm | A group of parents in the 50s and 60s refused to. . .
12.5.13 at 8:56 pm | The first national Leadership Institute on. . . (14)
4.21.11 at 11:23 pm | In the search for a "home" for our young adults. . . (12)
11.3.11 at 12:26 am | There's an epidemic of unhealthy weight for. . . (8)
April 26, 2013 | 6:59 pm
Posted by Michelle K. Wolf
In the field of social work, there’s a core concept of “starting where the client is at” meaning that the therapist or social worker needs to begin working with the client without pre-judging the situation, and not moving too far ahead of the client’s needs. So, for example, if the client is the mom of a newly-diagnosed 6 year-old with autism, it is probably not the right time to bring up where that child should live when an adult.
In a larger sense, the Ruderman Family Foundation is applying this same principle at their upcoming ADVANCE Conference May 8th in New York City. This 3rd annual conference is a gathering of leading Jewish philanthropists from North America, Israel and Europe who are dedicated to making charitable giving and grant making more inclusive for people with disabilities.
Co-sponsored by the Jewish Funders Network (JFN), The Jewish Federations of North America (JFNA), the American Jewish Joint Distribution Committee (JDC) and the Combined Jewish Philanthropies of Boston (their Federation), the conference is highlighting state of the art funding practices while also looking at the various needs of people with disabilities over their lifetimes.
Ephraim Gopin, Communications Director of the Ruderman Family Foundation, told me that one key strategy is to encourage funders to add special needs inclusion funding to the programs they currently support. With overall disability rates approaching 20% of the U.S. population, excluding children, teens and adults with disabilities (often along with their parents and siblings) means leaving behind a significant portion of the Jewish community.
Under the leadership of Jay Ruderman, President of the Ruderman Family Foundation, the ADVANCE conference has become a tangible reminder that our community’s leadership is finally acknowledging the growing numbers of Jews in North America and Israel with special needs, and is actively working to coordinate funding efforts. Unfortunately, the previous ADVANCE conferences have had few funders come from the west coast, a problem that I hope will be improved soon.
One very cool Los Angeles connection with this year’s conference is that ADVANCE conference participants will be invited to attend an evening performance of East Side Glory, a new production of the award-winning Miracle Project at the 92nd Street Y. The Miracle Project was started right here in Los Angeles by Elaine Hall, a good friend, and Mom of a teen with autism, and is now part of the Vista Inspire Project at Vista Del Mar. You can see the LA shows on May 5, 6 and 7th and purchase tickets here.The Miracle Project was the subject of the Emmy-winning documentary, Autism: The Musical.
In New York, as in Los Angeles, the show was written and will be performed by teens and young adults with autism and special needs, as well as their typical siblings and peers. Invariably, someone in the audience will say, “I can’t really tell who has special needs and who doesn’t". Now that, my friends, is truly a great place to start the communal conversation.
April 16, 2013 | 10:39 pm
Posted by Michelle K. Wolf
Long before I was married and had kids, I always imagined I’d be spending some quality time watching my children participate in some type of group sporting activity. Not that I had ever played organized sports as a kid-- there weren’t a lot of options for girls growing up then and I was pretty klutzy to being with—but it seemed like such a wholesome, warm-fuzzy type of family activity, complete with a pizza party for the team even if they lost.
As it turned out, our daughter had no interest in organized sports, and although she did play soccer one year at the Jewish middle school she attended (my joke was “bend it like Bracha”), the whole endeavor fell apart early on, and she went on to acting and theater activities.
And for Danny, our son with physical impairments, just getting around with his walker or having fun in the pool splashing around were big achievements. I heard about the Challenger division of Little League for kids with special needs, but couldn’t find one close to us, and all the Special Olympics programs seemed to take place during Shabbat.
Then, last fall, we were invited to join an inaugural AYSO soccer program in Beverly Hills for kids with special needs called the VIP program, started by two fathers who had wanted to get this program going for years. We even got to select Danny’s own number, and naturally, he picked “18” or chai. The volunteers and coaches figured out creative ways to get Danny to move across the field while he held on to his walker and kicked at the same time, although he did sit down for frequent breaks to play “hot potato” with the ball.
This week, the Friendship Circle of Angeles started a boys basketball program, and I wasn’t sure if this was going to be a good fit. But with gentle assistance from two amazing teenage volunteers, along with the coach and Rabbi Michy Rav-Noy, Danny participated, mostly from the sidelines. When the coach gave Danny the ball to make a pass, and everyone cheered him on, chanting “Danny, Danny”, his smile had no end. He came home very excited and kept saying, "baketball, baketball".
So I felt a strong connection to a family in Israel today when I read that Elad Gevandschnaider from Beersheva, a 24-year-old man with Down syndrome whom I had blogged about previously, was the recipient of the Award of Excellence from the IDF, Israel’s Defense Force, as part of Israel’s 65th anniversary. Elad has also been an active player at the Israel Tennis Center in Beersheva, and has won multiple Special Olympic medals around the world.
As the Israel Tennis Center press release says:
“Emotions ran high during the 65th IDF anniversary event, as the overflow crowd applauded for all of the award recipients, saving its loudest cheering for their very special soldier with Down’s Syndrome, Elad. The thunderous ovation did not stop until the Brigade Commander walked over to personally congratulate Elad for his achievement.”
Although people with developmental disabilities are exempt from army service, Elad volunteered and worked at an Israeli army equipment base. His family credits the Israel Tennis Center for helping Elad develop discipline, confidence and learning how to be more independent.
April 2, 2013 | 11:59 pm
Posted by Michelle K. Wolf
I have a very vivid memory of being back in 6th grade at the local elementary school in north Orange County, watching a film based on futurist Alvin Toffler’s best-selling 1970 book, Future Shock, which predicted a cyber-filled future with people feeling disoriented from, in his words, “ too much change in too short a period of time".
The most memorable scene was one in which two men were depicted getting married to each other. The howls and screams of “ICK” hung heavily in the classroom and I think the teacher had to momentarily stop the film and tell us to quiet down.
Flash forward to last week when our 18-year-old with developmental disabilities decided to watch the animated Disney version of “The Hunchback of Notre Dame” in which the high-spirited gypsy Esmeralda is the only one in the nasty Paris crowd during the Feast of Fools who steps in to help Quasimodo, the deformed hunchback and bell-ringer of Notre Dame. She tells the evil Frollo, that she feels empathy toward Quasimodo because as a gypsy, her people have also been shunned by the larger society. Not my favorite Disney movie by a big margin, but it got me thinking.
As Jews, we are keenly aware of the terrible virus of anti-Semitism that spread from our people’s earliest encounters with the Greeks, then early Christians and then to the Muslims, racial anti-Semitism and of course reaching its nadir with the Nazis (who also targeted homosexuals, gypsies and the disabled for extermination).
Because of this unfortunate historical legacy, we have a special obligation to speak out publicly for those at the margins of society, who just want the same rights as anyone else, including of course the right to fall in love and get married. Having two adults legally loving each other is not something to be scared of, no more than having people with severe disabilities living in the community.
Before the American Disabilities Act was passed in 1990, business could legally discriminate against people with disabilities, and physical access kept people with physical disabilities out of many museums, airports, and workplaces. This one piece of legislation literally changed the environment for millions of Americans, and we are all the better for it. Ending marriage inequality for same-sex couples will have the same long-term positive impact, but we need to stop saying “ick” and let everyone say “I Do” instead.
March 19, 2013 | 11:55 pm
Posted by Michelle K. Wolf
I’ve been getting the sad stories via email, direct messages on Facebook, and over Kiddush at shul—mothers sharing with me that their child with mild special needs has been asked to leave a Jewish school/camp or other setting. What’s so astonishing is that these are mostly kids with learning differences, or attention-deficit issues, not multiple developmental disabilities like our 18-yearold son, Danny. What is going on here?
The general arc of the story is that the kids are accepted into a program when they are young, then the learning difference surfaces, some intervention is tried, and when that isn’t working, parents are “counseled out”. Other programs, especially those geared for high academic achievement, will reject kids with learning differences outright.
As I told the Jewish Forward reporter in this article “Should Every Disabled Child Get a Jewish Education?" we didn’t even bother applying to a Jewish nursery school when Danny was 3 because it was so clear he needed specialized services such as speech therapy and physical therapy.
But as someone who studied Jewish communal service in grad school and has worked in the field for over 25 years, I can’t figure out why Jewish schools, camps and other Jewish organizations aren’t able to accommodate kids with learning differences. Frankly, it’s not that hard, and doesn’t take a whole lot of money. It isn't, as they say, rocket science. There are literally millions of resources available on the Internet.
A great place to start reading about differentiated learning is right in the Hagaddah, as part of traditional “Four Sons” portion. There’s the wise child, the wicked child, a simple child and the child who does not know how to ask. Each category of child is to receive different, personalized instruction. As it says in Pesachim 116a, “The parent should teach each child on the level of his/her understanding.”
If we could just apply that ancient wisdom to our communal formal and informal educational programs that would warrant one good round of off-key singing together “Dayyenu (It would have been enough)!”
March 7, 2013 | 11:29 pm
Posted by Michelle K. Wolf
When your children are babies, the idea of them becoming teenagers and running around town on their own seems crazy. With less instinct than a household pet, infants are totally dependent on the grown-ups around them for everything—food, shelter, love. And yet, somehow they move ahead through the developmental milestones laid out so neatly in all those “What to Expect the First Three Years” books and start walking around, communicating, and becoming someone who hates anything cooked with onions.
For parents of children with special needs, that trajectory starts moving off course, at first just a few degrees, but then takes you to a whole different state of being, until you are so focused on trying out a new therapy, a different medication and getting through the annual IEP (Individual Education Plan) meeting with the public school district that you can’t possibly think ahead more than just a few months ahead.
But kids, no matter what, don’t stay young forever.
I had the opportunity this week to hang out with adults with special needs who are participants with JFS/Chaverim, a non-sectarian social friendship program. First was the 6th Annual Karaoke Competition at Temple Judea, loosely based on the American Idol format of having the audience choose a winner. Eight brave adults, 6 guys and 2 women, ranging in age from mid-20s to almost 60, took to the stage solo and gamely sang as the lyrics flashed up on a screen. Some used props, others went for the bold gestures while others focused on keeping their balance. They had practiced for weeks ahead with Gerry Dicker, the Program Coordinator who doubled as the KJ (Karaoke Jockey).
Family and friends were in the audience, and we voted for the top three--the winners received Target gift cards, All 8 participants received trophies with their names engraved on them. On a sadder note, two Chaverim members who had passed away, Lisa Pritikin and Lori Ravitz, were remembered by their favorite songs, including David Cassidy’s “I Think I Love You” which I counted among my personal favorites as a pre-teen in 1970.
Then tonight, as part of my work with Bet Tzedek Legal Services, I helped lead a self-advocacy focus group of Chaverim members, asking them about their daily lives, and in what areas they might need additional help. There were a dozen adults with developmental disabilities from age 24 to 66, with a wide range of abilities and diagnoses. Three parents and an adult sibling also participated. What was impressive about this group was the high degree of independence most had achieved, and how their families had helped them get to that goal. A few families had received high-level support and services from their service coordinators at the state-funded regional centers, but most were left largely on their own.
Some worked part-time and others had volunteer placements, often due to government programs that place caps on how much people can earn if they want to keep their monthly disability checks. There were frustrations with the Access bus system for people with disabilities that doesn’t always show up on time. But there were older adults who were learning how to use a computer, younger women who loved to go to the mall, and young men who had the travel bug.
They were all grown-ups, in every sense of the word.
February 27, 2013 | 10:32 pm
Posted by Michelle K. Wolf
For many parents of children with special needs the word “inclusion” seems like the elusive pot of gold waiting at the end of a rainbow. You’ve heard it exists, and think it would be great, but haven’t actually ever seen it.
Two different key events that focus on inclusion are taking place in early March, and both deserve our attention.
The first is the 2013 Ruderman Family Foundation Prize in Disability. Now in its second year, the Ruderman Prize is all about celebrating successful inclusion initiatives in Jewish communities around the world, which founder Jay Ruderman hopes will in turn, “spark some new inclusion programs”.
Last year The Ruderman Foundation received over 150 applications representing seven countries, and 10 prizes were awarded at $10,000 each. This year, the Foundation expects to award up to 5 prizes of $50,000 each. Let’s be clear about this –-this is not your usual prospective grant program; instead, it is recognition funding for an existing inclusion program that serves Jewish people with disabilities. Segregated programs that serve only people with disabilities, without any typical participants, are not considered to be inclusive.
“We are trying to show that special needs aren’t just a small niche part of the Jewish community, “ Jay Ruderman told me in a phone interview from Israel. “We need other Jewish funders to be out front in their support of special needs programs.”
One of last year’s award recipients was AKIM, an Israel non-governmental organization founded in 1951 by the parents of intellectually disabled children. When we were in Israel last summer as part of the LA Jewish Federation’s Special Needs Study Mission, we got to see first-hand the program AKIM created with the Israel Defense Forces (IDF) that was awarded a 2012 Ruderman prize for inclusion.
We met a 26-year-old man with Down Syndrome who had been working as a full-time volunteer at an Israeli army base, helping with the inventory of boots and uniforms. Instead of just throwing him into this situation, a whole year was spent getting him, and his soon-to-be-employers, ready, including special transportation training, inter-personal skills as well as training for the soldiers with whom he would work. The commander of the base spoke to us and shared how important that program was to him personally, and to the whole army base.
(Interested non-profits can apply online and applications are due in by March 18.)
The second event is the national television premiere of the powerful documentary, “Certain Proof” which profiles three youngsters with cerebral palsy whose families near Raleigh, North Carolina, are determined for them to be fully included in public school settings. We watch as Josh, Colin and Kay are continually asked to “prove” that they are academically at grade-level. Even when these students are provided full-time aides, some of the general education teachers are visibly uncomfortable with the students who have disabilities, and on thin pedagogic ice on teaching them.
As a mom of a teen with the same condition, the material presented hit home, hard. When our son first entered the public school system at age 5, it took a lawyer just to keep him in a non-segregated school, let alone a non-segregated classroom. Like the mothers shown in the documentary, I know that more is going on his head then he can express, but we are still working on basic typing skills at age 18.
The director of this award-winning documentary is Ray Ellis. He wrote that when he and his wife, Susan, were first introduced to a local non-profit dedicated to educating children with mobility and communication disabilities their “eyes were opened to an entire world we knew very little about….Our purpose in producing this documentary is to lift the veil of disability, showing these unique and wonderful children in a truer light.
The premiere of “Certain Proof” will be on Sunday, March 3 at 8 pm EST on the Starz and Family Channels. For more information or to order a DVD, go to www.certainproof.com
February 21, 2013 | 10:53 pm
Posted by Michelle K. Wolf
Purim is an especially festive Jewish holiday that captures the essence of many Jewish holidays--the bad guys tried to kill us, we triumphed, now let's eat and party! For people with sensory issues, it can be challenging since it tradtionally includes very loud booing every time that the name of the bad guy, Haman, is mentioned. To help prepare kids for all that noise, there's a lot of great tools available through the Gateways website including social stories about how to wait in line at a Purim carnival, a simplified version of the Purim story, and lots of games and other activities.
This year, Purim is on Saturday night, February 23 and Sunday, February 24, and there's a wide variety of celebrations in our area for children and adults with special needs. Our 18-year-old son with special needs used to cry and whine during megillah readings when he was younger, but now he can't get enough of Purim songs, parties and screaming out "BOO" on top of his lungs.We will be going to as many of these events listed below until I am the one crying!
A special thanks to HaMercaz for sharing this list:
Yachad LA Purim Extravaganza
Saturday Night, Feb 23, 7:45-9 pm with JLIC at UCLA
UCLA Hillel, 574 Hilgard Avenue
Chaverim Purim Party Hosted by B'nai David Judea
Sun, February 24, 1:30pm - 3:30pm
B'nai David- Judea 8906 West Pico Blvd. Los Angeles (Social Hall)
FREE! Costume Contest, Mishloach Manot Purim Baskets, Singing, Dancing and Snacks.
Please RSVP to Gerry Dicker at (818) 464-3360 or email@example.com
Etta Young Professional Purim Party
Sun, February 24, 12pm - 3pm
The Mark on Pico 9320 West Pico Blvd Los Angeles, 90035
Tickets: $25 per person.
To buy tickets and for more information, go to ettapurim.eventbrite.com or call 818-985-3882 ext 231
Friendship Circle LA--Purim in Africa
Sunday February 24t, 4:30-6:30pm, Megillah Reading at 4:40 pm
9051 W Pico Blvd, LA 90035 4th floor, One Block East of Doheny
Teen volunteers will be on hand to assist all children who have
special needs. Child's parent must be present.
RSVP to Chayie at 310.280.0955 or email firstname.lastname@example.org
Valley Friendship Circle and Camp Chesed Family Fun-Stival
Sunday, Feb. 24, Adar 14 12:00pm, Megillah Reading 12:3
"Orange Delight" Purim Feast 1:30Magic, Game Booths, Prizes & Awards, Live music,
Megillah reading and much more! Adults & Children Grand Masquerade Contest!!
Weisman Estate 5324 Genesta Ave, Encino, 91316