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….
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. . .
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
September 23, 2011 | 1:19 am
Posted by Michelle K. Wolf
Sorry but this post isn’t about that type of passion (although that’s important too and is covered well by many other JewishJournal.com bloggers). The type of passion I’m writing about here is the need for parents to start actively engaging in the political process on behalf of their children with developmental disabilities to ensure that the needed services are funded so our kids can live full, meaningful lives with as much independence as possible.
At a recent Autism Society of Los Angeles conference held at Vista Del Mar, speaker after speaker exhorted the parents and professionals in the room to re-engage now, at this critical time when both the State of California and the Federal government are pondering how much and what to cut in terms of social services and provider reimbursement. At the heart of the debate in California is the key question: Will the landmark Lanterman Act still exist?
The Lanterman Developmental Disabilities Services Act, known as the “Lanterman Act”, is a key piece of legislation that was first passed in 1969 under the leadership of Assemblyman Frank. D. Lanterman, who represented the La Canada/Glendale/Pasadena area (a Republican and self-described fiscal conservative to boot).
There’s a great back story: a group of like-minded parents who refused to put their children with mental retardation into state hospitals (which was the conventional medical advice of the day) joined together and advocated strongly for a system that would help them keep their kids at home. Thanks to the persistence of this group of parents, children with developmental disabilities were finally able to receive state-funded treatments and care at home. The Lanterman Act—later amended several times—“creates a system where each person with a disability is empowered to participate in choices about where and how they live, learn, work and play. Each person with a developmental disability has an Individual Program Plan (IPP) which specifies the services and supports the person will receive, while also considering the individual’s needs, desires and objectives.” –from http://keepingthelantermanpromise.net/
(For a great documentary on this subject of those trailblazing parents, go to http://www.lanterman.org/uploads/videos/video_werehere.html)
Liz Spencer, a services coordinator at the Westside Regional Center said at the conference, “The parents in the 60s fought like hell and gave us the Lanterman Act. If it goes away, it is our own damn fault (she has a 23 year-old with Downs Syndrome).”
Valerie Vanaman, the well-regarded attorney for parents for any cases involving special education, disability issues and rights, also presented at the conference, and warned everyone, “Lawyers can’t protect the Lanterman Act—the Legislature created it and it could disappear tomorrow.”
Speaker after speaker gave us an action plan:
1) Learn what is happening in Sacramento and Washington DC
2) Get on email action network lists, and respond
3) Testify at hearings in Sacramento and in Los Angeles
4) Show up at rallies
5) Get on the boards of your local Regional Center
Like the parents who came before us, it is up to us to join forces and not allow the great gift we have been given to be discarded.