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.”
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November 16, 2012 | 6:30 pm
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.
November 11, 2012 | 1:19 am
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.
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.