Posted by Michelle K. Wolf
As we get ready to celebrate another 8-day marathon of carbs, candles and explaining to our non-Jewish colleagues why we aren’t taking off time from work, it’s hard not to compare this year’s Hanukkah with those of the past.
To paraphrase from a major Jewish holiday, Why is this Hanukkah different from every other Hanukkah? For parents of children and young adults with special needs, I feel that we have moved the communal discussion from a marginal issue in the Jewish community to a much more mainstream concern. The passionate flame that so many parents and families have kept alive for years is growing bigger all the time. The recent two-day national conference after the Jewish Federation’s General Assembly on “Opening Abraham’s Tent” is one shining example of this.
Another sign of this shift in collective consciousness was that the JTA (the Jewish global “wire service “) today included a special Hanukkah feature on “8 tips for an accessible Chanukah” from Gateways Access to Jewish Education, a Boston-based agency for Jewish special education. The tips are creative, inexpensive and easy for every family/Jewish organization to incorporate into their celebrations and parties.
Here in Los Angeles, many of us were thrilled when The Shalom Institute/Camp JCA Shalom chose to award Elaine Hall with the “Vision Award” at last week’s gala, under the evening’s overarching theme of “Celebrating a place where everyone belongs”.
Elaine Hall is the mother of Neal, a Camp JCA Shalom camper who has non-verbal autism and communicates mostly by typing on his Ipad. Elaine is also the founder of The Miracle Project, a non-profit that uses drama as a social/recreational modality to reach children and teens with special needs, along with their typical peers. Neal is now working at the camp once a week, helping to harvest fruits and vegetables from their organic farm.
Neal, now 18 years old, attended JCA Shalom camp for the first time many years ago with our son Danny, and another two boys with developmental disabilities. We had turned to Bill Kaplan, the Executive Director of Shalom Institute and Joel Charnick, Camp Director, to test out a new model of sending kids with more severe disabilities to camp with their own aides, paid for by the family or by a state-funded Regional Center.
Although they hadn’t developed the infrastructure for such a program, Bill and Joel said yes to our request, and together created a warm and supportive camp environment. Since then, the Tikvah program at Camp Ramah in Ojai has welcomed campers such as Danny who require an aide, and even added a family camp called “Ohr Lanu” for the parents, siblings and children who have special needs.
As the teens of today grow into adulthood, there is still much to be done to create the needed residential, employment and social programs under Jewish auspices but it does feel good to see the lights of inclusion glowing brighter all the time.
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 4, 2012 | 1:04 am
Posted by Michelle K. Wolf
“Still alive in day 5 of no power here in Lower Manhn, battery drain for every breath. Social media organizng svd mylife” – Tweet from Nick Dupree, artist, creator of “Dust Bunnies in Space”, disability advocate and living on a ventilator since 1994
(Note, his electricity finally came back earlier today, Nov. 3rd)
When the lights went out in their 12th floor Tribeca apartment in lower Manhattan, Nick Dupree and his partner, Alejandra Ospina, were faced with a huge crisis—how were they going to keep Nick’s lifesaving ventilator going? They had batteries on hand and a NY fire department station across the street with a generator, but the batteries needed changing every three hours, and Alejandra is also in a wheelchair. Evacuation was not a safe option.
Help arrived in the form of nearby friends, Facebook posts, tweets, and a network of other disability activists, all working together, some as far away as Boston, to make sure that Nick and Alejandra would have not just the batteries for the vent, for also for their cellphones and feeding pump, suction machine, oxygen concentrator & wheelchair that all needed power. They also needed distilled water for the machines plus food to eat and cash to buy other supplies, since ATMs without electricity weren’t working either.
Read the whole harrowing story here written by blogger and artist Crystal Evans-Pradha from Boston, who is a work-from-home-mom to her 2 year-old and uses a wheelchair due to mitochondrial myopathy (neuromuscular disease). She responded to Alejandra’s initial Facebook post and with a friend who worked for the Red Cross, took the 200- mile trek to NYC help deliver car batteries, distilled water and other needed supplies.
One lesson we can all learn from this story is that first-responders need to know who is the most vulnerable in different neighborhoods, and plan ahead how to get help to those people. Here in Los Angeles County, there’s a simple way to make sure people like Nick won’t be left alone – the Specific Needs Disaster Registry (SNAP).
But as we saw with Sandy, and what is likely to happen after a major earthquake in Southern California, we are advised to “to prepare themselves for up to 72 hours of self-sustained survival, should that become necessary.” During those three days, what will happen to the most vulnerable among us, such people with severe physical disabilities or the frail elderly? We will need to turn to our neighbors, our friends, and our faith-based and community organizations to knock on all the doors, and ask if any extra help is required. And if all else fails, there’s Facebook and Twitter.
October 24, 2012 | 9:44 pm
Posted by Michelle K. Wolf
Ann Coulter’s tweet during Monday night’s Presidential debate:
“I highly approve of Romney's decision to be kind and gentle to the retard.”
When I first caught wind of this tweet scrolling on my Twitter account (@specialneedsima), I optimistically thought that perhaps Gov. Romney had announced some new initiative to help people with intellectual disabilities while I was away from the TV and that Coulter was giving a snide, back-handed endorsement. Of course, I was wrong --she was talking about President Obama.
Why would she use such a nasty, mean and outdated term to describe Obama? Since her hateful words first appeared, many sane people on both sides of the aisle have said that her use of the word “retard” is simply unacceptable. Many Hollywood stars have also weighed in against the “r-word” as we parents call it and on the Special Olympics blog, a thoughtful open letter was posted by John Franklin Stephens, a 30-year-old Special Olympian with Down syndrome.
Among those of us who cringe everytime we hear the cruel and all too frequent use of the r-word, it sears as deeply as “kike” for Jews or “nigger” for blacks. As CNN noted, “Congress banned the use of the words "retard" and "retardation" in 2010 in federal health, education and labor laws in favor of using the words "intellectual disability."
It seems to me that Coulter used the word “retard” for the same reason our teenager with intellectual/developmental disabilities unbuckles his seatbelt on the freeway—she really, really, really wants a whole lot of attention! And what’s the best way we can shut down that “attention-seeking” behavior as the experts call it?
I have two words: behavioral modification.
It’s as simple as ABCs:
A) Antecedent—As it says in the literature, “The antecedent is an event that occurs immediately prior to the behavior” Tough to nail down here. Did she feel ignored? Did she feel left out during the debate between presidential candidates?” Does she really think that President Obama scores low on standardized intelligence-quotient tests? We don’t really know exactly what led to this offensive outburst, but it’s clear that being outrageous is the way she has decided to “brand” herself in the marketplace of ideas.
B) Behavior- The behavior needs to be described in a specific operational sense. Here, it’s her use of the “r-word” to disparage anyone or anything she dislikes.
C) Consequence- Ah, the fun part. Coulter’s megaphone can be muffled if people stop buying her garbage. As Patt Morrison commented in the LA Times: “She (Coulter) is quoted and courted far and wide by the conservative media. She commands reported $20,000 speaking fees.”
It’s up to to all of us to make sure this intervention sticks.
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