Posted by Michelle K. Wolf
It’s really wonderful that more kids with special needs, including those who aren’t verbal, are now able to have a bar or bat mitzvah, but shouldn’t that simcha be viewed as a beginning of engagement with the Jewish community and not the end?
The first special needs bat mitzvah I attended was for a sister of a friend I had made at camp in high school, and the bat mitzvah was a very small affair, held in a chapel of a large Westside synagogue. As I recall, the expectations of the sister (who in retrospect probably had mild intellectual disabilities), were very low, and there was a sense that although the event was certainly worth celebrating, the idea of a Jewish kid who wasn’t college-bound was a big shanda (disgrace).
Since then, I’ve attended many special needs B’nai Mitzvot, some large-scale events with live bands playing at the after-party, and others, purposely kept small to minimize the noise and sensory overload for the Bar Mitzvah boy on the autism spectrum. The kids usually rise to the occasion, and it isn’t unusual for the parental speeches to get the tear ducts flowing. As the four-page feature spread titled, “Autistic boy’s bar mitzvah is a milestone of faith, hard work” in the Arizona Republic documented, long-time family members often find it “amazing” that the teens with special needs are able to lead the congregation in prayer.
Our son, Danny who is now 17, had his bar mitzvah a month after turning 14, on a crisp Hanukkah Rosh Chodesh morning at Temple Beth Am in Los Angeles, and although he has very limited verbal abilities, he was able with verbal cuing, to say an aliyah, the traditional blessings before and after the Torah reading, have a typical friend read some of his thoughts on being Jewish, and also used his voice output device for the thank-you portion of the service.
But it can’t just end there. And in Los Angeles, we are very fortunate to have a wide array of post-B’nai Mitzvah programs for our teens and young adults.
Danny waits all year for summer time which means a month away at Camp Ramah California where he is part of their Tikvah program with a full-time aide, During the school year, he participates in a Confirmation Class at Vista Del Mar, part of their Nes Gadol Jewish education program for kids with autism and other developmental disabilities. He also goes to OurSpace social and recreational programs through Valley Beth Shalom and squeezes in a week or two at Etta Israel’s high-spirited day camp program. Whew!
This past week, Danny rocked the night away at a very hip Erev Simchat Torah celebration at IKAR; he was very disappointed to hear that his Mom’s feet were worn out before the very last hakafot (round of dancing). And then this Shabbat morning, he was asked to do the first aliyah of the first Parasha of the new Jewish year, Bereshit. He stood up in front of the congregation, taller and more confident than during his Bar Mitzvah and slowly did his best to pronounce each word of the blessings. It was a great beginning.
PS If you want to hear first-hand about our recent Special Needs Study Mission to Israel sponsored by the Jewish Federation of Greater Los Angeles,and how you can get invovled in next steps, rsvp at www.jewishla.org/special-needs-panel to attend a November 5th presentation.
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October 5, 2012 | 5:48 pm
Posted by Michelle K. Wolf
You may have missed it in all the post-debate chatter, but the issue of disabilities as part of the national domestic agenda came up not once but twice during Wednesday’s night debate, both times by President Obama. This is a pretty big deal, as every possible issue/cause wants to get in a mention during a presidential debate with 60 million viewers. With so many worthy topics out there competing for attention, I was happy to hear that the D-word had made the cut even if there were criticisms of how Obama framed the issue
The first mention was in regard to how best to trim the federal deficit, with Obama trying to make the point that both revenue and spending needed to be addressed:
“Let — let me just finish this point because you're looking for contrast. You know, when Governor Romney stood on a stage with other Republican candidates for the nomination, and he was asked, would you take $10 of spending cuts for just $1 of revenue, and he said no. Now, if you take such an unbalanced approach, then that means you are going to be gutting our investments in schools and education. It means that — Governor Romney talked about Medicaid and how we could send it back to the states, but effectively this means a 30 percent cut in the primary program we help for seniors who are in nursing homes, for kids who are with disabilities.”
My Twitter feed, with many disability advocates, went crazy, although some were peeved that only kids were mentioned. For example, “Great Obama. So #disabled adults don’t exist?"
The second mention was in regard to Medicaid, known in California as Medi-Cal. Again, President Obama:
“As I indicated before, when you talk about shifting Medicaid to states, we're talking about potentially a — a 30 — a 30 percent cut in Medicaid over time. Now, you know, that may not seem like a big deal when it just is — you know, numbers on a sheet of paper, but if we're talking about a family who's got an autistic kid and is depending on that Medicaid, that's a big problem.”
On this one, my friends in the Autism community were happy to be singled out, but didn’t care for his wording since we didn’t use what we call “people first” language, because a person is more than their disability or condition. As Casey Lee @cleesouth tweeted, “In the debate Obama says "the autistic kid" um no, "kid with autism" is correct. They're a person before they are a disability.”
Although I can’t find Romney using the D-word himself in the transcript, he did talk about giving states maximum flexibility to help poor people in their own state, and then said a vague statement about the feds helping out states if needed. Never mind that some states have engaged in a "race to the bottom" as they do everything they can to drop poor and disabled Medicaid enrollees in order to save money, which can lead to terrible outcomes such as children with severe disabilities forced to live in nursing homes in Florida because they can't get a community-living Medicaid waiver.
As far as I’m concerned, getting our cause out there is better than not getting mentioned at all. To make it more participatory, maybe we can turn mentioning the “D-word” into a drinking game for the upcoming Veep debate?
September 27, 2012 | 9:28 pm
Posted by Michelle K. Wolf
Lately, our 17-year-old son Danny with developmental disabilities is obsessed with evil. His new favorite game is to use his limited but growing vocabulary to talk about who the “evil” character is in each of his many movies in his much-viewed DVD collection. We think it started with Jafar, the “dark man” in “Aladdin” who is the Grand Vizier of the Sultan of Agrabah. As one Disney critic has pointed out, Jafar gets more screen time, and actually lives to the end of the movie than most Disney villains.
Since Jafar, Danny has generalized this villain concept to other movies, such as sinister Luther heading up the Council of Doom in the Justice League cartoons (which, to jog your memory, featured all the Super Friends such as Batman, Superman, Wonder Woman, etc). He also likes to watch the scenes in the musical, “Little Shop of Horrors” with Steve Martin playing a sadistic dentist. Today, while on a crowded elevator in his dentist’s building, Danny clearly yelled out two words “dentist” and “evil” much to the consternation of the other occupants.
Then during Kol Nidre/Yom Kippur day services, Danny really got into the whole beating of the breast during the Viddui confessional prayer. He looked around and saw everyone hitting his or her chest, then picked up my hand to help him do the same gesture since he lacks the motor coordination to do it on his own. He even tried to name the ways our cat has misbehaved over the past year, which includes jumping up on the dinner table and scratching the furniture.
What’s pretty remarkable about this evil obsession is that he isn’t supposed to be able to do it. With a diagnosis of moderate intellectual disability, abstract thinking is supposed to be beyond his ability. As part of a North Carolina state checklist for judges and law enforcement officers states, “Most people can move from concrete to abstract thinking without effort. For people with mental retardation, this is often difficult, if not impossible.”
Who knows? Maybe bounding over tall buildings will be next.
September 21, 2012 | 9:51 am
Posted by Michelle K. Wolf
“The stone which the builders rejected has become the chief corner-stone.”
For Jewish families raising a child or teen with special needs, the challenges of how to have our child included in the larger Jewish community are a deeply-felt issue, but the burning question has always been this -- how do we get those not personally impacted to make inclusion a communal priority?
Elana Naftalin-Kelman, director of the Tikvah special needs program at Camp Ramah in California has come up with a solution: The Rosh Pina (“cornerstone” in Hebrew) program which will confer special needs certification for all types of Jewish organizations following a comprehensive year-long study process involving all the various segments of the organization, such as members, students, volunteers and staff.
And even better, she’s starting the project as one of the eight new Joshua Venture Group (JVG) Fellows, which means she will receive $80,000 in unrestricted funding and over $20,000 in personalized coaching, training and networking. Rosh Pina will be the first (JVG) project funded in partnership with the Ruderman Family Foundation which is focused on the field of advancing inclusion and public awareness of people with disabilities.
“I had been thinking for awhile on how to really create ‘deep change’ in an organization with inclusion, “ Elana said during a phone interview. “A class or Shabbat program or two are nice but don’t really integrate people with disabilities.”
Elana’s vision is that each Jewish organization that wants to earn certification will engage in a year-long process that involves all levels of the institution, from the physical plant, to the curriculum (if it is a school) or year-round Shabbat/Holiday inclusion (if it a synagogue) and so forth. A team of specialists will be brought in as needed to provide expertise. Synagogues will pay a nominal fee to participate, and each institution will create its own customized plan on “becoming a place that is known to be welcoming to people of all abilities.”
After getting certified, each organization can post their actual certificate and also re-apply for certification down the road.
Elana has been in the field of Jewish special education for over 15 years and has consulted with multiple Jewish institutions to aid them in thinking about how to be more inclusive of Jews of all abilities. I've had the pleasure of knowing Elana personally for many years, as the first leader of our Koleinu special needs Shabbat services at Temple Beth Am, and then through our son Danny's involvement with the Tikvah program at Camp Ramah. She is knowledgable, creative and most important, sees each person with disabilities as an individual, not as a cluster of medical conditions.
Since JVG announced her Ruderman Fellowship, she has heard from many shuls, schools, and Jewish museums interested in being one of the first three organizations to be part of the new Rosh Pina program. “People are coming out of the woodwork—it’s been great to receive such a big response,” she said.
For more information, email her at firstname.lastname@example.org
September 13, 2012 | 11:17 pm
Posted by Michelle K. Wolf
It’s hard for any parent to leave their five-year-old at his or her first day of Kindergarten. Will our child make friends easily? Will some bigger, nastier kid bully them? And most of all can the teachers and school administrators be trusted to take good care of our child?
This whole transition is even scarier when you have a child who is non-verbal or very limited in his ability to express himself in any meaningful way. That’s why my stomach churned when I read a recent NY Times opinion piece on the ugly side of school discipline, made worse by the fact that my husband had gone to college with the author, Bill Lichtenstein.
In that piece, Lichtenstein relates how he and his wife found out that their 5-year –old daughter Rose (who had speech and language delays) was being kept in a seclusion room at school for up to an hour at a time over the course of three months as punishment for behavior issues at first and later, for not following directions.
When the parents were finally called by the school to get Rose because she had taken off her clothes they found her “standing alone on the cement floor of a basement mop closet, illuminated by a single light bulb. There was nothing in the closet for a child — no chair, no books, no crayons, nothing but our daughter standing naked in a pool of urine, looking frightened as she tried to cover herself with her hands. On the floor lay her favorite purple-striped Hanna Andersson outfit and panties.”
Really hard to read, and jolted me back in time when our son Danny (with cerebral palsy and developmental delays) was 9 years old and having a lot of trouble with walking and balance issues. We were working with the doctors to get the right “cocktail” of prescription drugs but he was losing a lot of hard-won mobility and whining even more than usual.
His 4th grade teacher at the local LAUSD elementary school was convinced that it was all “behavior” and when he wouldn’t sit down one day in a chair, she kept him in a kneeling position for hours waiting for him “to get up and walk over to the desk” where his juice and yogurt were waiting for him. I went a little berserk upon hearing this, and starting calling the principal, the Special Ed Administrator for the Sub-District (don’t ask) and even the School Board Member. Meetings followed, and plans were drawn up, and basically the teacher was told she wasn’t allowed to do that again. I also looked around for a class to transfer him away from this teacher as fast as I could. Other staff members took me aside and whispered to me that I was doing the right thing.
These examples of abuse in the name of discipline are why many parents of kids with special needs are beginning a national crusade to get cameras put into special education classroom. According to ABC News, parents in states such as Ohio, Texas, Michigan, New Jersey and Tennessee have started on-line campaigns with petitions, videos, etc to bring awareness of this issue. Some parents have smuggled in audio recording devices along with their children’s backpacks so they can hear for themselves what is happening in the classroom, and then can document abusive behavior to doubting administrators.
One parent in Ohio, Tara Heidinger, said that her son Corey, 8, has autism and can become very upset if changes are made to his schedule or usual routine. One day he came home from school and said the teacher was "mean" to him. Later on some of his more verbal classmates told her that the teacher’s aide had grabbed Corey by the arm really hard and screamed in his face to stop him from crying. When she went to the principal to complain, “She didn’t believe what I was telling her” and said that the boys were making up the story due to their autism. Without any proof of the attack, nothing changed.
Having cameras inside classrooms may sound too much like “Big Brother” for some people, but for kids who aren’t verbal, having an extra set of eyes may be what is needed to prevent abuse.
If you want to sign on, go to http://www.change.org/petitions/cameras-in-special-needs-room-for-safety
September 5, 2012 | 9:13 pm
Posted by Sarah Blitzstein, Director, HaMercaz & Special Needs Programs, Jewish Family Service
It’s hard to believe but summer is over and fall has arrived.
Back to school transitions hard for all kids, but they can be especially hard for our children with special needs. Our kids may have just gotten used to their summer school, camp or summer therapist and now new changes .September and October are busy times at HaMercaz as we receive many calls from parents whose children have changed grades or schools and need additional guidance and support.
Terri Mauro, at www.specialchildren.about.com has put together 25 ways to make this school year the best ever. For a complete list, make sure to check out her website (you can also subscribe to a daily email with lots of wonderful articles and information).
Here are five of my favorite tips:
1. Learn the Lingo: Parents are our children’s best advocates—when you're standing up for your child's rights, particularly against people who may throw out lots of fancy terms to let you know they know more than you, it's important to have a good command of the bureaucratic language -- so study up on those IEP acronyms with a cheat sheet and a special-ed alphabet soup quiz. This is especially important during transition years—pre-school to kindergarten, elementary to middle school, middle school to high school.
2. Help Your Child Sit Still—“Sit still” is a demand adults can't help making, and too many kids with special needs can't help breaking. If your child's teacher regularly complains about your child's lack of desk-sitting decorum, come to the rescue with ideas for managing movement and increasing comfort, such as a weighted blanket for their lap or a ball chair that they can bounce on (lightly) during class). Give the teacher ideas and tips on what you noticed was helpful the year before or at home.
3. Join Your School's Parent Association and be involved.—Meetings may take valuable time, and time is a valued commodity, but it is important to participate anyway -- participation matters, and the voices of parents of children with special needs need to be heard and integrated into the PTA system.
4. Dress for less stress: Adapt the strategy of "change the environment" to your child's most immediate environment: the clothes he or she wears. Often, adjusting an outfit can make problem behaviors less obvious or troublesome, and it's way easier and more effective than endless nagging. On that same note, lay out your child’s clothes the night before so there is less to worry about in the morning. If your child has sensory issues and is sensitive to fabric/tags/colors etc then the night before is always a better time to check and make sure that their favorite shirt is clean than at 7:10 when carpool is outside
5. Monitor Your Child's Backpack—besides being too heavy to healthily lift, backpacks can hide all sorts of things you need to know about, from forbidden items to stolen goods to rotting gym clothes; stay in the know by performing inspections morning and night.
Do you have any favorite tips for back to school or need help with the back to school transition? Contact us at Hamercaz@jfsla.org.
August 31, 2012 | 9:09 am
Posted by Michelle K. Wolf
“I’ve been knockin’ on the door that holds the throne
I’ve been lookin’ for the map that leads me home
I’ve been stumblin’ on good hearts turned to stone
The road of good intentions has gone dry as bone
We take care of our own.”
During this political season, we are hearing a lot about how big government should or shouldn’t be, and its appropriate role in our individual lives. For those most vulnerable among us, including the poor, the disabled and the frail elderly, the real question is: will the government be there for me when I need it the most?
As important as private charity donations are, the simple fact is that even when donors are generous as they often are in the Jewish community and other faith-based groups, the collective efforts of all that fundraising can’t come close to the real costs of taking care of people in need, especially so if there are long-term needs. According to the International Federation of Health Plans, the average cost per hospital stay in the United States was $15,734—would your synagogue or church want to foot that bill for every congregate who didn’t have health insurance or Medicare/Medicaid?
And those numbers are chicken feed when we start looking at long-term care.
My almost 90-year-old Dad took a bad fall last week, fractured his hip, had surgery and is now in rehab care for the next month or so at a skilled nursing facility. That service would cost around$230 a day out of pocket without his Medicare and supplemental coverage. He’s getting high-quality physical therapy five times a week, but with less coverage, he would be receiving far less sessions, even if the doctor recommended it for optimal recovery.
A lot of disability advocates are very worried about the Ryan (and now Romney) proposal to turn Medicare into a voucher system. Although Medicare is widely known as health insurance for those over age 65, federal law was changed in 1972 to include those with permanent disabilities. As David Lazarus reported in the LA Times last week on how the Ryan plan would work:
“People under 55 would receive a federal subsidy — a voucher — to buy health insurance once they reach the eligibility age, which Ryan would raise to 67.
That voucher would be used to buy either conventional Medicare coverage or a similar plan from, say, one of half a dozen private insurers. The amount of the voucher would be determined by the cost of the second-least-expensive plan available, which experts say would likely be private coverage that would not be as comprehensive as Medicare.”
The bottom line is that we are facing a potential situation of a lot less care for those who need it the most.
August 20, 2012 | 10:33 pm
Posted by Michelle K. Wolf
During our recent LA Federation Special Needs Mission in Israel, Danny Katz from the Welfare of Ministry took great pains to point out that they were changing the name of his department from “Adults with Mental Retardation” to “Adults with Intellectual Disabilities”, so that Israel, in Katz’s words “could keep in alignment with the United Nations and the rest of the world.”
It’s high time for everyone else to follow his example. I can’t think of a better time to start than during the Hebrew month of Elul, which began on Aug. 19th, since this month is traditionally a time set aside for self-reflection and “tshuvah” or repentance before the High Holidays.
And I’m not just talking about jerks and people who don’t know better. From my point of view, way too many well-meaning, good-hearted people use the word “retarded” all the time to talk about the computer that isn’t working, a non-responsive customer service department, even a politician that they don’t much like. At Jewish non-profits, day schools, and even at synagogues, you don’t have to spend much time hanging out before the “r-word” pops up again and again.
Ironically, the term “mentally retarded” was first used in the 1950s to replace such derogatory terms as “feeble-minded” and “imbecile” and in the world of special education, there was a clear distinction between “educable retarded”, those students who can progress academically to a late elementary level and “trainable mentally retarded” referring to students whose IQs were lower but who were still capable of learning basic living skills in a sheltered setting, such as a group home.
The sting of hearing those terms applied to my child, then aged four, was deep and bitter. Only by sharing my heartache with other moms did I start to turn from sadness to anger, and finally settled somewhere between defiance and advocacy.
Disability advocates around the world have been trying to get the official diagnostic description of someone who learns at a slower rate than same-age peers changed for many years, and the professional world has pretty much agreed to change over to the term “intellectually disabled”. State and federal governments have or are in the process of officially making this change to the laws and statues that address legal or policy issues around this population, but the changeover hasn’t quite made it fully into popular culture, even with the best efforts of the Special Olympics initiative with their “spread the word to stop the word” campaign.
At this point in time, “retarded” has long outlived its usefulness as a diagnostic category and has instead become the go-to word for late-night comedians for an easy laugh. The “r-word” needs to go the way of other ugly ethnic/sexual orientation slurs, and disappear from our daily conversation.
We can all draw inspiration for this holy work from the words of Psalm 27, traditionally read daily during the month of Elul:
“Show me Your ways, O God,
And lead me on a just path”