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.
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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.