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.
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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.
November 7, 2011 | 1:43 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….