Posted by Michelle K. Wolf
1. Parents who watch any Disney/Pixar DVD more than 100 times will be automatically entered into a special million dollar lottery
2. Scientists will conclusively discover that if parents consume enough dark chocolate, their children’s behavior will dramatically improve
3. Any elected official who votes to cut funding for the disabled will spend the next 24 hours taking care of someone who is in a wheelchair
4. The ability to be very, very focused like a laser on one particular subject will be highly valued by society
5. Elevators will always work
6. Major philanthropists in the Jewish community will start directing a good chunk of their capital spending into residential facilities and high quality programs for Jewish adults with disabilities
7. Danny will expand his eating to a least one fresh vegetable
8. All luxury goods would be taxed at an extra 3%, and that funding would be restricted to funding special education teachers and aides in public schools
9. The Ramah Tikvah program would have a free Shabbaton once a month all year long
10. People with special needs and disabilities will be thought of as “quirky”, not strange or odd
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. . .
December 21, 2011 | 12:53 am
Posted by Michelle K. Wolf
The four letters on our non-Israeli dreidels spell out it clearly: A Great Miracle Happened There.
Depending on your interpretation, the miracle is about the unexpected come-from-behind military victory of the Maccabees over the Syrian Greeks, or the Temple’s skimpy supply of oil lasting for 8 days, or maybe a little of each.
But for families who have a child or teen with special needs, miracles come in many shapes and sizes, from the child with special needs making it through a family dinner without throwing a tantrum or finally being able to brush their own teeth while their same-age peers are getting their driver’s licenses.
One of the unanticipated silver linings of raising a child with significant special needs is that it can liberate the parents from comparing that child to peers, cousins, even siblings. The only true yardstick is that of the child. And every accomplishment and small step in the right direction can be celebrated for what it is, another milestone.
Last week, we attended a wonderful pre-Hanukkah party at Vista Del Mar, co-sponsored by HaMercaz and the Vista Inspire Program. Families filled the dining room, enjoying their first latkes of the season, with art projects for the kids with special needs and their siblings. And then it was time for a great skit called the “Magic Ladle” presented by the participants of the amply-named Nes Gadol afterschool Jewish special education program, which Danny enjoys very much.
I watched all kids acting and moving around the stage, and felt pangs of jealously that Danny wasn’t up on the stage with them. But then the lights went down, a screen came up, and there was Danny in a video, “cooking” latkes with a metal spatula and eating a bite out of almost every latke. With artful editing, the piece was a delight.
In a recent Parade magazine article, the co-author of the book, “Gabby” about Rep. Giffords quotes her husband, retired astronaut Mike Kelly as saying, “You don’t get the life you planned,” he says, “That’s what Gabby and I have learned. When things look bad, the only answer is to find a path through it. What other choice do you have?”
And while you are finding that path, who knows, you might encounter a miracle or two.
December 15, 2011 | 11:37 pm
Posted by Michelle K. Wolf
If you have ever been deeply involved in an issue or event that gets intensive media coverage, it is easy to find mistakes in what is ultimately reported in the press. As a journalism major in college, we were warned that no matter how many people we interviewed, no matter how much depth and nuance we brought to a given issue, there would likely be “insiders” who disagreed with our coverage.
This is certainly the case with the extensive four-part series currently running at the LA Times, reported by Alan Zarembo with front-page photographs, and accompanying charts and facts with additional material including videos on line.
Although our son Danny is not autistic, he does share some sensory sensitivity common to children with autism and the majority of his classmates and friends with special needs are on the “spectrum” as their parents say. And many of them are quite upset with how the subject of autism has been approached by Zarembo in the first three parts of the series, especially taking issue with the article’s implications that some parents are exaggerating their children’s symptoms in order to get an autism diagnosis.
As my friend Judy Mark writes in her letter to the editor:
“In reality, for every child mislabeled as autistic there are many more who have the disorder and never get the diagnosis that will provide them with the services they desperately need.”
My own flash point with the series was with the second article, titled, “Warrior Parents” featuring a photo of Jonah Funk, one of Danny’s bunkmates from the Tikvah program at Camp Ramah, on the front page. Zarembo detailed much of the hard work Jonah’s mom, Stacie, has done to ensure that Jonah gets the help he needs, and then wrote, “But not all parents have the time and resources to fight the way Funk did. That contributes to striking disparities in how the services are distributed.”
He goes on to document that white children (with Asian children not far behind) with developmental disabilities receive significantly more state funding than do Latino and Black children. Instead of looking at the systematic reasons for this, which I will get to in just a minute, he seems to criticizing the White/Asian “warrior parents” for hogging up the scarce resources available at the state and school districts.
Here’s the thing: each person who is eligible for Regional Center services paid for largely by the state is assigned a Service Coordinator (their titles have changed over the years but they basically function similar to a social worker). This Service Coordinator is charged with helping each family develop an individual plan, and in some cases, funding the services, such as social skills, respite and various other therapies/programs. Why aren’t the Service Coordinators doing more (with encouragement and support from their management) to help educate and empower those Latino and Black parents? Shouldn’t we be trying to bring everyone up to an optimal level of functioning instead of bringing the system down to the lowest possible level?
For parents who are educated and understand how to navigate the system, the Service Coordinators function as more of liaison than a case manager. Here’s my recommendation – create two parallel systems, one for parents who can “self-advocate” and they can be given vouchers, based on their children’s level of need that can be “cashed in” with any pre-vetted vendor, with all reporting done on-line.
The second system would be for parents who need more guidance and support, with intensive hands-on case management from the Service Coordinators.
There’s already been a successful pilot of the first model called, “Self-Directed Service” for adults with developmental disabilities at the East Los Angeles Regional Center, in partnership with Area Board X and it shows great promise.
One last thought – the timing of this series couldn’t be worse, as Gov. Brown announced on Tuesday that the state budget “trigger” cuts of $1billion will impact heavily persons with developmental disabilities including a 20% across-the-board reduction for in-home service hours. We can only hope that the LA Times will devote the same number of column inches to the consequences of those cuts as they have to this series.
December 8, 2011 | 3:57 pm
Posted by Michelle K. Wolf
As Jews, we are told to take the Torah and “turn it and turn it again.” This can result in the proverbial, “2 Jews and 3 arguments” experience, but can also provide a whole new perspective on an old text.
For example, I recently learned that Jewish tradition teaches us that Jacob, as a result of his wrestling with an angel, ends up with a dislocated hip and was physically disabled for life with a permanent limp. Who knew? I always thought it was a description of a metaphysical experience, with Jacob confronting his “darker” side and having emerged victorious, is given a new, stronger name, “Yisrael”
In a new book titled, Esau’s Blessing: How the Bible Embraces those with Special Needs by Ora Horn Prouser, the author explores how this disability impacts the rest of Jacob’s life, resulting in a more passive and vulnerable personality.
“…Jacob seems far more subdued than his (new) name might suggest. When Jacob’s daughter, Dinah is raped, a devastating affront not only to Dinah but to the honor of her whole family, Jacob refuses to take any stand without his sons present (Genesis 34:5)”
As a Jewish educator, Prouser has worked with many Jewish children who had special needs and hopes that by using a disability lens to re-examine the lives of such Biblical notables as Moses, Esau and Samson, it will result in a kinder, more compassionate Jewish community.
One of most intriguing profiles she writes is the chapter devoted to Isaac, and her hypothesis is that he was mildly mentally retarded, the same conclusion drawn by Rabbi Judith Z. Abrams in her 1990 article in the Reconstructionist magazine, “Was Isaac Disabled? “
Here’s the facts:
• Isaac is born to older parents (Sarah was supposed to have been 80!) who are themselves close relatives.
• When his father, Abraham almost sacrifices him, why doesn’t he protest or fight back? Why does it take him so long to figure out was going on?
• He is easily tricked by Joseph into giving him the blessing instead of to Esau
I’m not fully convinced that these facts, plus other textual nuggets, truly add up to a definitive DSM diagnosis, but it’s pretty intriguing to think about.
I urge Jewish professionals and parents raising children and teens with special needs to take the time to read this new book, available at www.BenYehudaPress.com
December 2, 2011 | 12:37 am
Posted by Michelle K. Wolf
I think that shopping must be an inherited gene on the maternal side, as my Mom was often known to say, “The prices were so low, I just couldn’t resist.” My husband can spend hours in an outlet mall in the men’s stores and my daughter also enjoys snagging a good bargain on the latest fashion.
But for Danny, our 17 year old with significant developmental disabilities, shopping holds limited appeal. He likes the children’s book section or the DVD movie section for a few minutes but then is more interested in getting a “mall cookie” (what we called Mrs. Fields) or taking a walk. He’s never been able to communicate with us any type of “wish list” as I remember making as child, going through the entire Sears catalog and earmarking my heart’s desires.
We’ve been paying a private speech therapist to come over to our house once a week since the speech therapy provided in public school is only given in groups and the therapists aren’t permitted to touch the children’s lips or mouth, which is of course precisely the type of therapy Danny needs at this time. Plus the fact that Danny sometimes acts up during therapy sessions at school, one time even shoving the table down to let the therapist know he was done.
At any rate, Danny is finally talking more. And part of that communication has taken a new turn regarding shopping. One of his favorite DVDs of all time is the first of a series of Israeli children’s song compilations, called “Shirim K’tanim” sung by Uzi Chitman, a well-known Israeli singer. Unfortunately, the beloved DVD disk broke during a trip to Israel in spring of 2009, and we couldn’t replace it because the DVD is now only available in an Israeli-DVD format and we have an American DVD player. Not compatible.
A multi-region DVD player can solve this problem, but when we first checked into buying one, the cost was several hundred dollars, and we forgot about it. But Danny didn’t. He kept asking us for “Uzi Plane” as he called the first disk, after a song about flying in an airplane. A few months ago, Danny came up with a solution. “Uzi plane, money” he said. We tried to explain that the DVD itself didn’t cost that much, but that different formats were the problem (who in the hell came up with different DVD formats for different regions anyway??). Finally, we found a multi-function player on the Internet for less than $50 and ordered one. Then, we took a trip to the Steimatzky’s store in the valley for the DVDs.
As it turned out, the only DVD in the series that the store did not have was “Uzi Plane”, but they did have all the others, including one that had also bitten the dust several years ago which we purchased as a poor substitute. The new multi-function DVD player was installed, and the substitute DVD popped in. Big smiles all around. Then we played the Hebrew version of Aladdin we’ve had around for years but never have been able to play because it is also in the Israeli-DVD format. Danny was delighted to hear Jasmine speak in Hebrew. Everyone was happy.
Two days later, the new multi-region DVD malfunctioned, and refused to read any DVD’s (American or Israeli-formatted). “Can’t read disk” it said, over and over again.
Back to the drawing board…
November 23, 2011 | 10:12 pm
Posted by Michelle K. Wolf
As I sat down to think about what I’m most grateful for, I realized that as important as a loving family, good health and meaningful employment are, there’s something even more important to me as a mother of a teen with disabilities —living in the United States in 2011.
In preparation for a presentation at the Los Angeles Jewish Federation’s upcoming Day of Learning on Dec. 4th, I’ve been researching how people with disabilities (specifically intellectual disabilities, or mental retardation) have been treated throughout history and it’s not a pretty picture:
• The ancient Greeks and Romans felt that children with intellectual disabilities were born because the gods had been angered. In Sparta, for example, a state council of inspectors examined newborn babies and if they suspected that the child was “defective”, the infant was thrown from a cliff to its death.
• During the Middle ages (476 – 1799 CE) more humane practices evolved (i.e., decreases in infanticide and the establishment of asylums), but many children with disabilities were still sold into slavery, abandoned, or left out in the cold.
• In Nazi Germany, citizens with mental retardation and mental illness were the Gestapo’s first guinea pigs in medical experimentation and mass execution.
• Even in the United States, “feeblemindedness” and “mental deficiency” were used as labels as late as the 1950s and the people with intellectual disabilities were institutionalized, characterized by warehousing, enforced labor and mass sterilization.
• As part of the “eugenics” movement that swept over the United States between 1907 and 1944, more than 42,000 people were sterilized in the U.S., over half of them in California, in an attempt to eliminate the presumed genetic sources of diseases including “feeblemindedness.”
In contrast to this list of horrors, consider Danny’s last week of activities, as we got ready to celebrate his 17th birthday on Thanksgiving:
—On Sunday, we went to the Friendship Circle Los Angeles Walk, forced to move inside with heavy rainfall. Once there, Danny was paired with sweet, energetic female high school volunteer and enjoyed guitar music with new and old friends.
—On Monday, Danny attended the Nes Gadol Confirmation class at Vista Del Mar where he participated in a conversation about thankfulness, danced to Hanukkah songs and then shared gluten-free chocolate cake with his classmates, most of whom he has known for years
—On Tuesday, he had his bi-weekly swim lesson at Beverlywood Swim School where he is now swimming without water wings
—On Wednesday, he had another birthday party at Fairfax High School, and proudly pointed to the “Happy Birthday Danny” signs on the walls, and smiled broadly as his dad and Uncle played the guitar.
I thank God we are living now. Happy Thanksgiving everyone.
November 18, 2011 | 1:05 am
Posted by Michelle K. Wolf
This past week for me has been filled with emotional highs and lows, not dissimilar to our next Torah portion, Chaye Sara (ironically named “Life of Sarah”), in which Sarah dies at age 127, Abraham’s servant, Eliezer, is dispatched to find a wife for Isaac and finds Rebecca, and the two marry, and then Abraham dies at age 175.
Saturday night was the Etta Israel Center’s 18th Annual Gala Dinner at the Peterson Automotive Museum and with the backdrop of gleaming Harleys and the Batmobile, community supporters, parents of children with developmental disabilities and a large contingent of teens/adults with developmental disabilities nibbled on kosher sushi and other buffet items.
Named in honor of Mrs. Etta Israel who taught Orthodox Jewish children with special needs, the non-profit organization was founded in 1993 and operates educational, residential and social/recreational programs including the only Jewish group homes in Los Angeles County.
Honorees were Lynn and David Mayer, parents of a young adult, Avremel, who now lives in lives in one of those group homes, and Susan North Gilboa, a pioneer and leader in Jewish special education, with her newest program the OurSpace Collaboration between Valley Beth Shalom and Temple Aliyah. On a personal note, our son Danny is crazy about their B’yachad Youth Bet Group, and is looking forward to hearing the UCLA 8-clap this Sunday at the Women’s Volleyball game they are attending.
On Monday, I was at the SRO funeral of Hal Benveniste, the Sephardic father of my best childhood friend in La Mirada and it was like saying farewell to well-loved uncle.
Hal worked on the production side of the Los Angeles Times for 30-some years, and edited many community newsletters. He was the first person to publish my writing, at age 12, a review of the Rothschilds play at the Ahmanson, in the Temple Beth Ohr newsletter, and had spent his retirement years deeply involved with the La Habra Kiwanis Club, working most recently on fundraising for computers in special education classrooms.
Then on Wednesday, I got a last-minute opportunity to attend the National Philanthropy Day lunch hosted by the Association of Fundraising Professionals. This annual event is kind of like the Oscars of the non-profit world with volunteers, corporations and non-profits all receiving various awards. One of the best moments for me was when Peggy Cherng, founder of the Panda Restaurants with her husband, spoke in her heavily-accented English about the amazing opportunities in the United States, and that she is still “schlepping” around town.
And tonight was the inaugural Franklin D. Roosevelt dinner for the Disability Rights Legal Center (DRLC) with its inspiring message of embracing diversity and inclusion, and using the power of the law to eliminate discrimination and other legal barriers for people with disabilities. Dr. Fran Kaufman, the preeminent CHLA pediatric endocrinologist who literally wrote the book linking diabetes and childhood obesity, was the recipient of the Charles D. Siegal President’s Award, and talked about an upcoming California Supreme Court Case regarding the rights of children with diabetes at public schools.
So some tears, many smiles, and way too many carbs. Next on the schedule: a long Shabbat nap….
November 11, 2011 | 7:19 pm
Posted by Michelle K. Wolf
On this Veterans Day, we pause to honor all those who served in the armed forces of the United States, but it’s easy to forget the number of veterans who now have disabilities as a result of their time served, whether from enemy fire, “friendly fire” or as a result of a training accident/exposure to toxic chemicals. Many more returning veterans have “invisible disabilities” such as post-traumatic stress disorder.
According to the Veteransinc.org website, one in 10 veterans is disabled, oftentimes by injuries sustained in combat.
The number of disabled veterans is increasing; more than 20,000 veterans were wounded during service in Iraq and Afghanistan.
The US Senate yesterday passed the Returning Heroes and Wounded Warrior Tax Credits which will give businesses up to $9,600 back for hiring unemployed veterans or who have service-related disabilities, which is a strong statement of bi-partisan support. Unfortunately, many of these disabled vets will face lifelong disabling and chronic conditions that can make it impossible for them to work in most conventional work settings
One of the biggest problems many disabled veterans face is a long wait for the government to handle their claims, with stories of inexcusable long waits for someone’s file to get moved into the Veterans Administration (VA). Other key issues are the need for the VA to recognize the growing needs of female veterans with disabilities and the growing number of disabled veterans who become homeless.
In our own Jewish community, many of our aging and frail seniors are World War II or Korean War veterans, and their progressive disabilities are getting worse, such as my own 89-year-old Dad whose hearing is almost completely gone in his right ear, from too many exposures to high-noise explosions during World War II without adequate ear protection. He would qualify for the VA benefits and free hearing aides, but doesn’t want to deal with hassle and red tape involved, so he relies on his Medicare insurance instead.
Helping out disabled vets should be as American as apple pie.