January 4, 2013 | 12:52 am

The Danger of Denial

Posted by Michelle K. Wolf

“Denial is the refusal to acknowledge the existence or severity of unpleasant external realities or internal thoughts and feelings.”
--Encyclopedia of Mental Disorders

"Denial ain't just a river in Egypt"--Mark Twain

For parents of children with special needs, denial can be a useful coping mechanism, at least initially. When we first observed that our son wasn’t achieving typical milestones as an infant such as crawling or holding an object with two hands, we chalked it up to his contracting chicken pox, or for being more interested in observing than moving around. Especially when he was so young, couldn’t he grow out of it? Many of the professionals we consulted with agreed with us—it was too early to jump to any conclusions but an Early Intervention program was still warranted.

As our son grew older, it became clear that he was significantly developmentally disabled, both physically and intellectually, and whatever denial we were still holding onto, like the edge of a pool before a jump, came to an end. Once swimming in the deep end of the pool, to continue the metaphor, we encountered a whole new world that we never knew existed. Inside jokes, a new vocabulary, and frankly a whole different outlook that was more open, certainly quirkier, and less judgmental than the “typical” world.

In some ways, having a child with physical disability is easier than with other, more “invisible” disabilities because it is so obvious.  In helping to create HaMercaz, the one-stop program for Jewish  families raising a child/teen with special needs in Los Angeles, I met a few mothers who would warmly greet me at a family event and then whisper in my ear: “Please don’t use the word ‘special needs’ around my son. He doesn’t even know that he has a diagnosis.” More than one religious school principal has commented that parents often fail to disclose that their child has a learning disability, until the teacher calls up about a behavior or school work problem.

This issue of trying to “pass” is made worse when there’s deep stigma and fear of isolation. For most well educated parents, having to accept that your child isn’t going to graduate with a diploma from a high school, let alone college, is almost impossible to accept. And so some kids are placed in classes or schools that aren’t a good match for them, where they can’t access the services they really need. Sometimes, over-achieving families want all their children to participate in the same high-level academic program, even if their younger child with special needs lacks the capacity to keep up. The social situation can be even tougher, since most typical kids have learned along the way to be kind (or at least to ignore) those with disabilities but will still bully and ostracize those who are “weird”.

As a community, we can help parents and other family members pass through the denial stage by gently showing that we care, and are non-judgmental in our approach. Support, friendship and small acts of kindness can help make the journey that much easier for everyone.

December 27, 2012 | 1:12 am

Compassion may be in our bones

Posted by Michelle K. Wolf

Were all pre-modern humans brutish and nasty? Were the ill and disabled dispatched to their fate in the wilderness for the “greater good’? I shuddered when I first read that in ancient Sparta, the high priest inspected every newborn and if the child had a disability of any kind, the authorities killed the child immediately.

But the past isn’t completely dismal. A friend sent me a link to a fascinating recent story in the New York Times titled, “Ancient Bones That Tell the Story of Compassion” that discusses how archaeologists have found evidence in human bones that at least in some places in the world, people with life-long disabilities were taken care of by others.

In the area of present-day northern Vietnam, two archaeologists from the Australian National University in Canberra found one skeleton around 4,000 years old buried in a fetal position. All the other skeletons were found laid out straight. Upon further investigation, it became clear that this adult had been severely physically disabled for at least a decade.

“His fused vertebrae, weak bones and other evidence suggested that he lies in death as he did in life, bent and crippled by disease… he had little, if any, use of his arms and could not have fed himself or kept himself clean. But he lived another 10 years or so. ..They concluded that the people around him who had no metal and lived by fishing, hunting and raising barely domesticated pigs, took the time and care to tend to his every need. “

And this wasn’t the only isolated example. Other archaeologists have unearthed similar stories told by the bones left behind, such as boy from about 7,500 years ago, found in Florida, who had a severe congenital spinal malformation known as spina bifida, and lived to around age 15. (Spina Bifida is a neural tube defect in which the bones of the spine do not completely form, resulting in an incomplete spinal canal.)

I was deeply moved by reading this article and hope you will be too. With all the darkness and cruelty that we’ve been witnessing in this, our “modern” era, maybe we need to go back in time to find the communal kindness of humanity.

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December 16, 2012 | 2:14 am

Stopping Asperger’s from Becoming Another Victim in the CT Massacre

Posted by Michelle K. Wolf

A woman wipes a tear away as she holds a teddy bear after Saint Rose of Lima Roman Catholic Church was evacuated in Newtown, Connecticut on Dec. 16, Photo by REUTERS/Joshua Lott

I first heard about the Connecticut school tragedy from the TV stations at the gym, and felt like someone had punched me in the stomach. I wanted to hear more about what had happened but couldn't stand to keep listening as the terrible details begin to emerge.

In my mind, I could easily picture the chaotic scene inside the elementary school, with screams over the public address system and teachers locking their doors, and telling their small charges to get into the closets for safety. I could imagine parents feeling the floor drop out under them when they learned that their first-grader had been killed. So utterly horrible and senseless.

I felt another pang of dispair when I read that the gunman, Adam Lanza, had been diagnosed with Asperger’s, sometimes characterized as a mild form of autism with a high degree of social awkwardness. I thought of all the many remarkable teens and young adults with the same diagnosis we have met along our journey with our teenage son who has developmental disabilities.  So many of them are smart, caring people, who just want to be accepted as they are, quirks and all. Would they somehow be blamed for this atrocity? Would there be an immediate leap to brand all people with Asperger’s as prone to violence?

In a widely-circulated AP article, a Los Angeles expert quickly dispelled that notion.

"There really is no clear association between Asperger's and violent behavior," said psychologist Elizabeth Laugeson, an assistant clinical professor at the University of California, Los Angeles.

But many people over at WrongPlanet.net, an online community and resource for Autism and Asperger’s, are very worried that with all the media focus and frenzy on Lanza’s diagnosis, it will paint a broad brush of blame for all teens and adults with those developmental disabilities.

One individual with Asperger’s said he is “really worried about the hate now” and another wrote about that he’s been bullied and beat up for most of his life, and fears it will only be harder for him in the future.

A posting from Autism Rights Watch lays out the issue very well:

“The search for answers should not be a search for a scapegoat. Autism is no excuse or explanation to evil. Being “autistic”, “odd”, “awkward”, “camera shy”, a “nerd” and “uncomfortable with others” does not cause a person to become a mass murderer. Autistic persons are more likely to be victims, rather than perpetrators of violence. “

Please, let's all work together to prevent another victim of this terrible tragedy.

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December 6, 2012 | 11:43 pm

The Bright Lights of Inclusion

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.

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November 24, 2012 | 10:36 pm

A Guidebook for the Land of Autism

Posted by Michelle K. Wolf

As a society, we’ve grown more tolerant of people from different races, sizes and abilities, but we are truly able to accept people whose communicative ability far outstrips their outward behavior?

The question becomes key to the acceptance of non-verbal autistics who are able to use typing devices of various kinds to communicate their ideas, needs and wants, but can only vocalize a few words, coming across like toddlers even if they are teenagers. This dichotomy of inner intelligence/understanding vs. outward strange behavior is at the core of the remarkable and important memoir written by Ido Kedar, a 15-year-old teen in Southern California with autism (and a long-time family friend).

Titled, “ido in Autismland: Climbing Out of Autism’s Silent Prison” the book chronicles his journey from age 12 to age 15, and shares what it is like to go from being silent to having a voice, and his dream for his friends and other non-verbal autistic people to be liberated as well. As family friends (we first met Ido and his family in The Miracle Project theater project, now at Vista Del Mar), we have personally witnessed this transformation, and always learn something new from him at our 2nd night seders together.

As his mother, Tracy, explains in the introduction to the book, “Imagine being unable to communicate because you have a body that doesn’t listen to your thoughts. You want to speak and you know what you want to say, but either you can’t get the words out or what comes out are nonsensical sounds or the same embedded phrases you have said thousands of times.”

With the assistance of Soma Mukhopadhyay, who discovered a method called “Rapid Prompting” to teach her own severely autistic son, Ido learned how to point at letters on a board, slowly spelling out words, and eventually transitioning to typing on an iPad as well.

Ido’s talks about his frustration and resentment of so many of the “experts” he encounters who doubted his intelligence and misinterpreted his behavior. For example, he sometimes ran over to a window during therapy sessions when he was younger and the therapist thought he was “fixated on cars” but all he was trying to communicate is that he wanted to go to his car and go home.

In fact, one of my favorite stories is that at one of the schools Ido was attending, the administration didn’t believe that Ido was actually capable of self-initiated communication until he started inserting expletives with each of his vocabulary words. Amazing what a well-placed f-bomb can do to get some people to believe.

Although Ido’s intellect is finally given expression after he is able to point/type letters, he is still unable to control his body’s impulses. He writes, “I live in a world of high thoughts and primitive impulses. So I impulsively pour things down the drain or open things I shouldn’t because I follow my body in those moments.”  His whole sensory system is wired differently than typical people so his sensory experiences are very different; he can see people’s auras, so that his “mom is blue and my dad is yellow”. He feels a need to taste objects and when he hears notes in music, he can see each note visually. No wonder it is so easy for him and other non-verbal autistics to feel bombarded with external sensory information.

Ido struggles with his faith as well. " I’m forced to doubt when I very much need God”s love and tenderness. I know that God is more than a wish-fulfiller. I understand that, but I wish now to have God’s love send me a cure…”

Another ongoing issue is wanting  friendship, with Ido’s sad description of autism as “an isolating illness”. He provides some strategies on how to be a friend to someone with autism. For example:

“—Don’t patronize, even if the person seems ‘low functioning’. Who knows what is trapped inside?

--Be friendly and say ‘hi’ even if the autistic person is not animated in expression or doesn’t say ‘hi’ first

--Connect in the ways you can.”

Like a tour guide in a foreign land, Ido’s powerful words give us a window into a world most of us will never experience nor fully understand. This book should be recommended reading for anyone studying to be a special education teacher or therapist and for families and friends as well. We can all share in fulfilling Ido’s wish that “one day all non-verbal autistic people will have the opportunity to learn communication and show the world that lack of speech is not the same as lack of understanding.”

Ido’s book is available on Amazon, and he also has a blog at www.idoinautismland.com from which some of the later essays in his book were first distributed.

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November 16, 2012 | 6:30 pm

It’s Hard to Run to a Bomb Shelter When You Are in a Wheelchair

Posted by Michelle K. Wolf

Earlier this week, I was thinking about what I wanted to blog about this weekend and there were so many good topics to pick from.

There was our son, Danny, with significant disabilities, celebrating his almost-18th birthday at Fairfax High School and loving all the attention and gooey chocolate cake. Or the banquet Wednesday night celebrating the merger of Etta Israel Center in Los Angeles with OHEL Children’s Home and Family Services of New York, ushering in more and needed residential and day programs for Jewish adults with developmental disabilities.  And I am still glowing from getting to meet in person the four beautiful young women from the Sundance Channel reality series “Push Girls” at the Disability Rights Legal Center dinner last night.

But the videos of those incoming missiles into Israel forced me to re-think what was the most pressing issue, so here we are, having to visualize people in wheelchairs, or who use walkers, some young and some old, having to rush off to bomb shelters when they hear the sirens, scared to death they won’t make it in time.

When we were in Israel this summer as part of the Special Needs Study Mission sponsored by the Los Angeles Jewish Federation, we visited Ayalim, a project in the Negev for college-aged volunteers who commit their time and sweat equity to build villages, improve the local community and work at family centers. As part of the project, they included six young adults with physical disabilities. In order to ensure the safety of those young adults they built their caravans extra-strong, in case they couldn’t get to the near-by bomb shelters.

Another place we visited in southern Israel was Aleh Negev, a village/campus in the middle of the desert for children, teens and adults with severe multiple disabilities. Created by the charismatic Major General (Res.) Doron Almog for his own son, and others in similar situations, Aleh Negev is a model program, filled with compassion and the highest-quality care. They serve children with severe disabilities all over Israel, but residential facility in the Negev is home to 135 residents, with 150 staff members and hundreds of volunteers.

One of more heartbreaking notes I wrote during the summer mission was this: “Staff takes all the residents at Aleh Negev twice every day to the bomb shelters for a short time, so when they get the incoming missile warning, they will feel comfortable going and staying there.”

This is what is on the Aleh Negev website today:
“The entire village has been at high alert since Wednesday afternoon, when air-raid sirens began sounding with increasing frequency…Aleh’s cadre of devoted caregivers have been working under extreme and difficult conditions.  Many have left their homes to spend extra hours at the village taking turns in shifts to ensure that everything is under control; others have brought their own children to Aleh Negev to ensure their safety.  The groups of Sherut Leumi (National Service) girls have demonstrated dedication above and beyond the call of duty, choosing to sleep overnight in the village to help residents. “

May there be peace again soon.

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November 11, 2012 | 1:19 am

A Sad Ending

Posted by Michelle K. Wolf

It was surreal to be in the hospital room at LAC+USC talking with the hospital staff about what to expect in the days ahead in hospice care for our long-time babysitter and housekeeper, Maria Jeritza Sagastume, who was sleeping on her side, an IV in her bruised and swollen arms. At age 46, with two minor children and a 24-year-old daughter, Jeritza’s body was shutting down due to an infection and the relentless tumor in her brain.

I thought back to the first time we had met Jeritza.

After our first child, Rachel, was born back in 1991, we realized that we could need reliable childcare so I could return to my Israel advocacy job at the Los Angeles Jewish Federation. I heard too many stories about infants getting sick in day-care centers but we couldn’t swing the cost of having someone in our house on our own. A good friend from shul was pregnant with her #2, and was interested in part-time work and day care, so we decided to share a babysitter.

Back in those pre-Craig’s List days, it was a little more complicated to find in-home childcare. Our friend suggested taking out an ad in La Opinion asking for an English-speaker, and we had multiple candidates.

Jeritza was a little nervous during the interview, but spoke in fluent if heavily accented English about the twins she had taken care of, as well as the Jewish older woman she had worked for who had taught her how to manage a kosher kitchen. Jeritza had come from Guatemala in search of a better life, and was a single Mom with a beautiful three-year-old daughter that a neighbor babysat while Jeritiza worked. No other candidates came close to her experience.

After four months of maternity leave I went back to work, exhausted and nervous about leaving my beautiful little girl alone with a stranger. But Jeritiza told me it would be okay, and it was. Our friend’s son started coming over a few months later and the two were like brother and sister, hiding in the closet together, dumping baby powder over each other’s hair, and laughing over every little thing. Jeritza had a schedule all figured out, with their eating and napping schedules mapped out so that child received undivided attention for part of the day. The kids blossomed, and when they turned two, we enrolled them in an Israeli Gan (home day care).  We gave Jeritza plenty of notice, and thought that was the end of our employer/employee relationship.

Fast forward to after Danny, our second child was born. Jeritza was working for someone else, and we had hired a friend of hers who didn’t drive. But by 13 months, when Danny’s developmental milestones were lagging behind, we needed to enroll him in an Early Intervention program three mornings a week which would mean someone to drive him. Along with Early Intervention was Occupational and Physical Therapy at Cedars-Sinai, and although I had cut back to part-time work, I still needed someone who could drive Danny to all these places as well as our daughter’s  after-school activities; Jeritza came back in our lives. She caught on quickly to the exercises we were instructed to do daily with Danny, stretching his arms diagonally and encouraging him to roll and crawl.

Although she left us again a few years later to follow a boyfriend to Iowa, we stayed connected. We provided references for other employers, and when she came to Los Angeles with her two kids, we employed her again a few days a week.  She helped us with the move to our new house 12 years ago, while pregnant with her third child. On Fridays, she helped cook Shabbat dinner, taking special pleasure with making a sweet tzimmes and perfect matzo balls. When we went out of town, she was the house sitter. No one else but her has ever changed our Passover dishes, and she was there to help with my Mom’s shiva minyans in our home six years ago.

Even when she wasn’t working for us regularly, we talked. Sometimes I would call from the car, and we would catch up with the kids and other people we knew in common, from former/present employers to her siblings still living in Guatemala.

In July of 2011, she collapsed with a seizure while signing up her son for summer school and the diagnosis at Kaiser was swift and cruel—a brain tumor --glioblastoma, grade IV.

Her funeral services were yesterday, and I still can’t believe she’s really gone. We will stay close to her children, doing what we can to help, but it feels like an important part of our extended family has disappeared. We will miss you, Jeritza.

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November 4, 2012 | 1:04 am

The Power of Social Media to Help Disabled/Frail Elderly after Sandy

Posted by Michelle K. Wolf

An emergency personnel carries an elderly resident from flood waters brought on by Hurricane Sandy in Little Ferry, NJ, Oct. 30. Photo by REUTERS/Adam Hunger

“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.

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October 24, 2012 | 9:44 pm

Ann Coulter Needs Some Serious Behavioral Intervention

Posted by Michelle K. Wolf

Ann Coulter. Photo by Wikipedia/Gage Skidmore

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.

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October 21, 2012 | 10:27 pm

Working Moms Who Are Really in A Bind

Posted by Michelle K. Wolf

With all the chuckling over the image of “women in binders” from last week’s presidential debate, it is easy to overlook the issue of workplace flexibility that Gov. Romney inserted into the national conversation.

When he talked about providing flexibility for a woman on his staff while Governor in Massachusetts he focused, as do many in the working world, on moms of younger children:

"I recognized that if you're going to have women in the workforce that sometimes you need to be more flexible," Romney said. "My chief of staff, for instance, had two kids that were still in school. She said, 'I can't be here until 7 or 8 o'clock at night. I need to be able to get home at 5 o'clock so I can be there for making dinner for my kids and being with them when they get home from school.' So we said, 'Fine. Let's have a flexible schedule so you can have hours that work for you.'"

The thing is, for us moms of kids/teens/ adults with chronic illnesses and developmental disabilities, we need flexibility and understanding in the workplace for a whole lot more than just coming home to make dinner (that’s why God invented Trader Joes by the way).  We may need time off during the workday for meetings with special education administrators at the public school, to attend speech therapy sessions or even to provide medical assistance. But don’t worry, we will make sure that the work gets done, even if we answer emails in the middle of the night and take our conference calls in doctors' waiting rooms.

Take the example of a courageous Mom in Washington D. C. Latesha Taylor a 36-year-old single mother has been caring for her daughter’s type 1 diabetes for eight years, and when the school district’s nurse isn’t there, it is Latesha who has to drop everything at work and run over to the public school to help out with blood glucose monitoring, insulin shots, and any emergency glucagon to keep her daughter Loretta healthy and able to learn during school. Because of all these absences, Latesha’s had trouble keeping a job. Thanks to legal advocates and the American Diabetes Association, the school district has agreed to train more staff in the schools to help Loretta manage her diabetes, but I am still concerned that the flexibility Latesha will need for all the medical-related appointments may not be forthcoming from a future employer.

Another issue is that kids like our son, Danny, don’t magically become able to take care of themselves just because they have reached some chronological age. With his combination of physical and intellectual disabilities, he will need someone around 24/7 for the rest of his life. And no matter how organized I’ve tried to be, there are invariably unanticipated situations. The sitter gets a flat tire, Danny gets a stomach bug or the high school decides to throw in a “minimum day” without telling us. In all those cases, Mom gets the first call.

I’ve been pretty fortunate. Since Danny’s diagnosis at 13 months, my direct supervisors in various Jewish and general non-profit agencies have been very supportive but that doesn’t mean that the whole organization gets it. Unless the organization has a clear written policy about how they will handle workplace flexibility for on-going family issues for all employees, previous “understandings” can disappear overnight.

So maybe we do need some binders after all…

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October 13, 2012 | 11:49 pm

After the special needs b’nai mitzvah: Only a beginning

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

Disability and the Presidential Debates

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?

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September 27, 2012 | 9:28 pm

Rooting Out Evil

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

Rosh Pina: Cornerstone of Special Needs Inclusion in the Jewish Community

Posted by Michelle K. Wolf

“The stone which the builders rejected has become the chief corner-stone.”
--Psalm 118

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 elana@rpcornerstone.org

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September 13, 2012 | 11:17 pm

Shining a Camera At the Dark Side of School Discipline

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

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September 5, 2012 | 9:13 pm

How to Survive the Transition Back to School

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.

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