Posted by Michelle K. Wolf
With the entertainment awards season now in full swing, I challenge the motion picture industry to show us a signficantly developementally disabled teen or older adult who is not just getting by, but thriving with friends, a job, and more. The Los Angeles-based screenwriters wouldn’t have to travel far to find a non-verbal autistic teen who can’t speak orally, but can type out college-level essays on love, life and loneliness. Or the young adult with CP who is living with a roomate, working in regular employment and helping to lead davening at a local shul.
For many general movie-goers, the “special needs” film that comes to mind is “Rainman” from 1988 in which Dustin Hoffman recieved an Oscar for his role of Raymond Babbit, the older brother of Charlie Babbit played by Tom Cruise. For those of you who can’t recall the details, or never saw it, Charlie is a selfish LA hustler who has been estranged from his Dad since his teen years and when he learns that his deceased Dad left a $3 million trust fund for some guy named Raymond, Charlie makes a beeline to the Walbrook Institute in Ohio where Raymond, his previously unknown brother with autism has been living since childhood, and kidnaps him. The duo travel by car back to LA, sharing many adventures, fights and tender moments along the way. The plot is tightly focused on relationship between the two brothers, and ends with Charlie as a better human being and Raymond on a train headed back to Walbrook Institute.
But a lot has changed (mostly for the positive) since 1988. Most of the institutions exemplified by Walbrook have long been shuttered, and today adults with developmental disabilities either live in group homes, in supported independent living or are still living with their aging parents (more on that later). The shame and stigma attached to having siblings with severe disabilities has been greatly eased (take for example the Santorum kids all sporting photo buttons of the their three-year-old sister who has a rare genetic disorder, Trisomy 18). And people with disabilities are living longer than ever, thanks to medical advances.
If Hollywood can remake such classics as King Kong, The Fly and Casino Royale, why not do the same type of treatment for Rainman, in which the older relative with development disabilities (DD) is living independently and successfully?
PS I have started a part-time position with Bet Tzedek Legal Services as Transitions Coordinator, a new, three-year grant-funded initiative by the UniHealth Foundation which will provide coordinated, holistic services to middle-aged adults with developmental disabilities who are entering older adulthood. Currently, 84% of DD families served by Bet Tzedek are being cared for their parents, and 77% of caregivers are over the age of 50.
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December 28, 2011 | 10:36 pm
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
December 21, 2011 | 1:53 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 16, 2011 | 12:37 am
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 | 4:57 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 | 1:37 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 | 11:12 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 | 2:05 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 | 8:19 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.
November 7, 2011 | 2:43 pm
Posted by Michelle K. Wolf
For many of us working on the issue of Jews and Special Needs in North America, it all too often feels like we are talking to ourselves. We gather in corners at kiddush, meet each other in doctor’s waiting rooms, even joyfully send our kids off for another great Tikvah session at Camp Ramah, but getting that discussion to break through to the next level of communal concerns is truly the challenge. How do we get our Jewish leaders, rabbis, educators and donors to turn this “niche” issue into part of the central discussion (and funding)?
At the General Assembly of the Jewish Federations of North America meeting today at Denver, a crucial step towards achieving that next step took place. During a breakout session titled, “Anyone Can Be a Leader and Advocate: Promoting Disability Rights in the 21st Century”, I was very happy to hear that that we have the joint opportunity to turn the next Jewish Disability Awareness Month in Feb. 2012 into just this type of communal experience across North America.
Ari Ne’eman, a self-advocate and founder of The Autistic Self Advocacy Network, urged us to include people with disabilities in all of our planning, programs and services. We should be “doing with”, not “doing for” he said, echoing the concerns of many people involved with Jewish special needs that all too often the person with disability becomes a means to the end—the object of a “mitzvah project” instead of being seen as a contributing member of the Jewish community.
“We have to believe in the capacity of every individual,” said Shelly Christensen, Consultant and CEO of Inclusion Innovations. She also talked about the need of “intentionality” on the part of syngagouges, federations and other Jewish groups, with standing committees on inclusion, and looking at the needs of the people first instead of their labels.
Pepi Dunay of the Jewish Federation of Broward County, FL, talked about their own family’s journey with her grandson and talked about the need for Jewish communities to put disability advocacy on their priority lists when they meet with local and state elected officials.
I was honored to be part of this group and shared our family’s journey with our son, Danny, which has been detailed in some of my earlier blog posts here, and urged the participants to find ways to fund programs for children and teens with special needs that didn’t necessitate the parents footing the bills for the necessary additional staff or shadows.
In keeping with the “cowboy” theme of holding the GA in Denver, I tip my hat to the Jewish Federations of North American for addressing this topic at the GA, and thank David T. Brown, the Chair of Domestic Affairs, for his commitment to this issue. And now if I can just get back to Los Angeles before the next snow storm….
November 3, 2011 | 12:26 am
Posted by Michelle K. Wolf
When it comes to food, kids with special needs are a lot like Goldilocks and the Three Bears – they tend to either eat too much or too little, but very few of them eat “just right”. Get two parents of kids with special needs together, and it won’t be long before the gory details of food preferences and digestive problems are discussed.
The “too much” portion of this problem is the topic of an important new report released today by AbilityPath.org called, “Finding Balance: Obesity and Children with Special Needs”. In partnership with Special Olympics and Best Buddies International, the numbers are alarming:
• 80% of children with functional limitations on physical activity were either overweight or obese
• 50.8% of children in special education programs were either overweight or obese
• 32.9% of the youth athletes under age 22 in the Special Olympics program are obese and another 16.1% are overweight, so that almost half of their participants are at unhealthy weight.
There are many factors behind these statistics – besides the typical culprits of too much tempting junk food with high fat, sugar and salt along with a sedentary lifestyle, children with special needs (and their families) have a long list of other risk factors.
These include the standard use of candy or chips for rewarding desired behaviors, from potty training to getting kids to reduce their temper tantrums Then there’s genetic disorders as well as the problem that many medications prescribed for these kids such as antipsychotics, antidepressants, anticonvulsants, and mood stabilizers all tend to increase appetites.
On top of those risk factors, kids with special needs are more socially isolated, not able to participate in most organized sports activities and spend much of their spare time engaged in passive activities such as television, video games and the computer. Plus, families raising kids with special needs are often stressed out with all extra challenges of difficult behavior and therapy/medical appointments, and end up eating fast food since it’s the easy and cheap choice.
“Finding Balance” points out that different diagnoses carry with them specific eating and weight issues. For example: “Children with Down syndrome tend to be shorter than other children, and studies indicate that their basal metabolic rate – the amount of calories the body burns at rest – is lower.” For kids with Autism Spectrum Disorders (ASD), there are often sensory issues with many foods, and a tendency to eat from a very limited range of foods, which are usually the more fatty, starchy items. (We’ve had to hide desserts when Danny’s friends with autism come over).
In our case, Danny weighs in on the lower end of the scale and, due to his low muscle tone and sensory issues, still has trouble chewing many foods and favors easy to swallow options like yogurt, crunchy toast and cheese-flavored crackers. To make sure he is getting adequate nutrition, we supplement daily with 2-4 bottles of liquid nutritional drinks of the heavy strength variety. I wish he would eat a greater variety of foods, especially fruits and vegetables, but it is a major battle to get him to eat something new or different.
Many families will find helpful information in the report, with its “toolbox” of ideas, tips and recommendations. One of the more interesting ideas is called “Food Chaining” which “which has the goal of preventing children from sensory overload. The goal is to start with a food that the child accepts, then progress from that food to another one.” With this strategy, you start out with something familiar to the child like French fries and slowly progress to a healthier alternative such as baked potatoes.
Tomorrow, we will take hotdogs, a Danny food-group, and start working our way into grilled chicken….
October 25, 2011 | 1:05 am
Posted by Michelle K. Wolf
Towards the end of his book, “Following Ezra” written by our family friend Tom Fields-Meyer about the journey of parenting his teenage son with autism, Tom quotes from Ezra’s Bar Mitzvah speech:
“Sometimes I think that all Jewish people are autistic. Jews repeat things all the time. And Jews have a very good memory. We repeat Shabbat every week. And we sing the same songs, like Shalom Aleichem and Adon Olam and the Kiddush….”
During this recent round of High Holidays, Sukkot, Shemini Atzeret and Simchat Torah, while everyone else was “shuled out”, Danny was perfectly content with going to synagogue one, two, even three days in a row (although he did start asking for frappuccinos from Starbucks after a while). When it comes to movies and songs, it is the same story. If Danny enjoyed Finding Nemo the first time around, the 100th time is even better .(We are probably the only adults outside the Pixar employees who made the movie to literally watch that many times).
Although I long for variety and new experiences, I have ever so slowly learned to embrace the power of repetition. Mostly because it really works.
As Malcolm Gladwell explored in his seminal book, The Tipping Point, the creators of Sesame Street and Blue’s Clues realized the need to make their programming “sticky”—information engineered in such a way that children were able to remember and understand what they saw on the screen. Blue’s Clues did this by slowing the dialogue down so kids could have a chance to yell out the answers at home, thus actively engaging them in the show, plus showing the same episode five days in a row (thank the Lord we have moved on to Superheroes and Wall-E).
Gladwell concludes that all that repetition helps kids trying to make sense of the world, and provides them with a sense of control. It’s kind of like when you are in a foreign country, and can only read a few words—each time you encounter those words, you smile in recognition, and shift from a feeling of being an outsider, a stranger, to being something closer to a local.
And so, I grit my teeth and prepare to watch the penguins dancing again in Happy Feet (and get mentally prepared for Happy Feet 2)!
PS I am excited to share that I will be presenting a parent’s perspective at a breakout session of the upcoming JFNA General Assembly in Denver on Monday, November 7th in a session titled, “Anyone Can Be a Leader and Advocate: Promoting Disability Rights in the 21st Century” from 11:15-12:30 pm (T202) along with self-advocate Ari Ne’eman. Please join us!
October 17, 2011 | 1:18 am
Posted by Michelle K. Wolf
The current harvest holiday of Sukkot is a perfect match for persons with special needs – the many physical and concrete symbols of the holiday are tangible, and multi-sensory, plus there’s some fun Hebrew songs. Compared to teaching the “why” of Yom Kippur, especially, for someone who is exempt from fasting for medical reasons, it’s a piece of cake. And with 8 nights, there’s lots of room for repetition of the key blessings.
Over the years, Danny’s favorite part of the holiday is what we have come to call the “lulav parade” when the congregants march around the synagogue in a large circle, holding the etrog citrus and lulav (palm frond plus willow and mytle). According to the Jewish Virtual Library, these processions, known as the “Hoshanahs,” commemorate similar processions around the alter of the ancient Temple in Jerusalem. The first time Danny did the “parade” in his walker, it was like completing a physical therapy goal.
Our home-grown sukkah has 20-year old wooden sides, covered by sheets that my late mother had painted with her fabric paints when the kids were young. Her spirit lives on in the painted decorations of fruit, flowers and birds, even though the sheets are starting to develop holes and frayed edges. Danny gets very excited when it is time to put it up, and “helps” hammer in a nail or two. He is also a little sad when the holiday ends and we have to return to eating in the mundane kitchen.
The main problem is tying to explain the holiday to Danny’s teachers and aides at public school, who can’t figure out why Danny is missing school (yet again) and that the holiday involves a lot of shaking of a palm frond and hanging out in a hut in the backyard. This is one holiday that is easier to observe and fully celebrate in Israel, when the whole country is on vacation and eating in a sukkah.
October 9, 2011 | 4:59 pm
Posted by Michelle K. Wolf
Some prayers were answered today when California Governor Jerry Brown signed SB 946, the autism health insurance mandate reform bill, into law today, awful close to the bill-signing deadline of midnight tonight. The Governor signed the bill with some reservations, pointing out in his signing message that there “are remaining questions about effectiveness, duration and the cost of the covered treatments that must be sorted out.”
This bill was authored by Senate President pro Tem Darrell Steinberg (D-Sacramento), who praised Brown’s signature as “a critical victory for thousands of California children and families. For many of them, having this therapy covered by their insurance is the difference between despair and hope.”
The new law will require private health insurers and health plans to provide as a covered benefit, beginning July 1, 2012, behavioral health treatments such as Applied Behavior Analysis (ABA) for persons with autism spectrum and related disorders. However, the bill’s enforcement will end July 1, 2014 as national health care reform kicks in, along with its own definitions of “essential health benefits”.
Supported by such groups as Autism Speaks and the Autism Society of Los Angeles, this law was seen as a crucial first step in getting insurance companies to cover “essential health benefits” such as treatments for persons with developmental disabilities. For too long, there’s been a nasty game of “hot potato” that plays itself out, as health insurance companies, school districts, and Regional Centers try to hand off the cost of effective treatment for children with disabilities to someone else. Families have been the big losers, and especially households who don’t have the resources to pay out of pocket.
Although children on Medi-Cal and Healthy Families were ultimately (and unfortunately in my humble opinion) not included in this law, many middle-class and working-class families who are fortunate to have health insurance from their employers will begin to reap the benefits of this plan this summer.
Not a bad way to start off the New Year!
October 4, 2011 | 5:29 pm
Posted by Michelle K. Wolf
During this period of repentance and self-reflection, I feel the need to confess that before our second child was diagnosed with developmental disabilities, I didn’t really give much thought to special needs. Not that I ever knowingly insulted or offended anyone with special needs or a disability, but frankly I just didn’t give a damn about the issue.
In fact, when we looking to enroll our typically-developing first child in nursery school, I purposely stayed clear of anything that even smacked of special education. Why should my daughter, who reached every developmental goal to the minute, have to be “held back” by kids who simply weren’t at the same level of learning? Didn’t they have “special” classes for “those” kinds of kids? I dare say the majority of Jewish parents probably still feel this way.
It is human nature to care most passionately about those things that impact us personally. All too often, unless we or a loved one has experienced a chronic condition or illness, the problem can feel far removed, suspended among the many global concerns such as famine, war or natural disaster. In my journalism classes in college, I was taught that if a hurricane happened on the other side of the world, it was worthy of a small item towards the back of the paper, but if it happened in the hometown, it was front page news. The Internet, Skype and You Tube have made the world feel smaller, but in general, the more “local” the issue, the more we tend to engage.
But with the number of active and affiliated members of the Jewish community shrinking, we don’t have that luxury of only focusing on those issues that touch us personally. We do a disservice to ourselves and the Jewish collective if we put up barriers for literal and spiritual access to families raising a child with special needs. Every parent who contacts their rabbi or educator and asks, “Can you make a space for my child in your synagogue or religious school?” needs to be welcomed warmly, and accommodated to maximum degree possible.
May we all be sealed in the Book of Life.
September 28, 2011 | 8:49 pm
Posted by Michelle K. Wolf
I have heard from my father the Holy Komarna. One time a Jewish peasant boy came to the big town to celebrate Rosh Hashanah.
He didn’t know how to pray. He could not even read the letter Alef. He only saw that everyone was traveling to the synagogues to participate in the holy prayers. He thought, “If everybody is going to town I must go too!”
He arrived at the town synagogue with his father and watched the congregants crying and singing together swaying to and fro.
He turned to his father and asked, “Father, what is this all about?”
His father turned to him and said, “The Holy One blessed be sits enthroned in the heavens and we pray all year long to Him. We especially pray during these two days of Rosh Hashanah when the whole world is being judged and each person is being judged for the rest of the year.”
The son responded, “Father, what am I to do since I do not know how to pray?”
His father quickly said to him condescendingly, “All you have to do is be quiet and listen to the other Jews praying. That is enough for you.”
“But Father, if I don’t know what these people are saying how is that going to effect God’s decision? How is being silent going to help me?”
His father became unnerved and blurted out, “Listen, you should be quiet so no one will know you’re an ignorant peasant!”
The son stood still for a couple of minutes as his father and the rest of the congregation continued praying and then - the young boy stood up and spoke loudly.
“I am going to pray to God in the way I know best. I will whistle to God as I whistle to my flock of sheep.”
He began whistling the sweet calling as most shepherds know. His father was enraged. The boy continued whistling with all his might not caring what other people thought.
Now, it happened to be, that this particular Rosh Hashanah, all the heavenly gates were shut and suddenly because of this pure whistling of the heart, all the gates burst open. The prayers of Israel were finally heard.
Nachlei Binah P. 317 #632 Tehillim Ben Beiti, Rabbi Eliezer of Komarno