September 28, 2011 | 8:49 pm

A Rosh Hashanah Story about Special Needs

Posted by Michelle K. Wolf

I have heard from my father the Holy Komarna. One time a Jewish peasant boy came to the big town to celebrate Rosh Hashanah.
He didn’t know how to pray. He could not even read the letter Alef. He only saw that everyone was traveling to the synagogues to participate in the holy prayers. He thought, “If everybody is going to town I must go too!”

He arrived at the town synagogue with his father and watched the congregants crying and singing together swaying to and fro.
He turned to his father and asked, “Father, what is this all about?”

His father turned to him and said, “The Holy One blessed be sits enthroned in the heavens and we pray all year long to Him. We especially pray during these two days of Rosh Hashanah when the whole world is being judged and each person is being judged for the rest of the year.”
The son responded, “Father, what am I to do since I do not know how to pray?”

His father quickly said to him condescendingly, “All you have to do is be quiet and listen to the other Jews praying. That is enough for you.”

“But Father, if I don’t know what these people are saying how is that going to effect God’s decision? How is being silent going to help me?”
His father became unnerved and blurted out, “Listen, you should be quiet so no one will know you’re an ignorant peasant!”

The son stood still for a couple of minutes as his father and the rest of the congregation continued praying and then - the young boy stood up and spoke loudly.
“I am going to pray to God in the way I know best. I will whistle to God as I whistle to my flock of sheep.”

He began whistling the sweet calling as most shepherds know. His father was enraged. The boy continued whistling with all his might not caring what other people thought.

Now, it happened to be, that this particular Rosh Hashanah, all the heavenly gates were shut and suddenly because of this pure whistling of the heart, all the gates burst open. The prayers of Israel were finally heard.

Nachlei Binah P. 317 #632 Tehillim Ben Beiti, Rabbi Eliezer of Komarno

September 23, 2011 | 1:19 am

Re-igniting Passion in Parents

Posted by Michelle K. Wolf

Katie Nack, one of the parents who lobbied for the Lanterman Act in the 60s, and a personal mentor

Sorry but this post isn’t about that type of passion (although that’s important too and is covered well by many other JewishJournal.com bloggers). The type of passion I’m writing about here is the need for parents to start actively engaging in the political process on behalf of their children with developmental disabilities to ensure that the needed services are funded so our kids can live full, meaningful lives with as much independence as possible.

At a recent Autism Society of Los Angeles conference held at Vista Del Mar, speaker after speaker exhorted the parents and professionals in the room to re-engage now, at this critical time when both the State of California and the Federal government are pondering how much and what to cut in terms of social services and provider reimbursement. At the heart of the debate in California is the key question: Will the landmark Lanterman Act still exist?

The Lanterman Developmental Disabilities Services Act, known as the “Lanterman Act”, is a key piece of legislation that was first passed in 1969 under the leadership of Assemblyman Frank. D. Lanterman, who represented the La Canada/Glendale/Pasadena area (a Republican and self-described fiscal conservative to boot).

There’s a great back story: a group of like-minded parents who refused to put their children with mental retardation into state hospitals (which was the conventional medical advice of the day) joined together and advocated strongly for a system that would help them keep their kids at home. Thanks to the persistence of this group of parents, children with developmental disabilities were finally able to receive state-funded treatments and care at home. The Lanterman Act—later amended several times—“creates a system where each person with a disability is empowered to participate in choices about where and how they live, learn, work and play. Each person with a developmental disability has an Individual Program Plan (IPP) which specifies the services and supports the person will receive, while also considering the individual’s needs, desires and objectives.” –from http://keepingthelantermanpromise.net/

(For a great documentary on this subject of those trailblazing parents, go to http://www.lanterman.org/uploads/videos/video_werehere.html)

Liz Spencer, a services coordinator at the Westside Regional Center said at the conference, “The parents in the 60s fought like hell and gave us the Lanterman Act. If it goes away, it is our own damn fault (she has a 23 year-old with Downs Syndrome).”

Valerie Vanaman, the well-regarded attorney for parents for any cases involving special education, disability issues and rights, also presented at the conference, and warned everyone, “Lawyers can’t protect the Lanterman Act—the Legislature created it and it could disappear tomorrow.”

Speaker after speaker gave us an action plan:
1) Learn what is happening in Sacramento and Washington DC
2) Get on email action network lists, and respond
3) Testify at hearings in Sacramento and in Los Angeles
4) Show up at rallies
5) Get on the boards of your local Regional Center

Like the parents who came before us, it is up to us to join forces and not allow the great gift we have been given to be discarded.

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September 16, 2011 | 1:24 am

Really Not Sweating the Small Stuff

Posted by Michelle K. Wolf

Our daughter Rachel was telling me about a new friend at college who gets upset at every little thing, from an email that doesn’t get answered to losing a favorite scarf. Rachel was telling her that our family tends not to be upset by little things, mostly due to her younger brother Danny having special needs.

I had to laugh when she said that, since our home has its own share of drama from stopped-up toilets to missing cats, but it is true that having a family member with developmental disabilities gives us a different outlook than many. Dealing with chaos has its privileges. We are used to the last-minute crisis, can handle a vast array of minor medical issues and keep on hand the appropriate cleaning materials for all types of messes. Most importantly, we have learned how to improvise.

When Rachel was in Shalhevet Middle School, the girls were all brought together for some type of group counseling program and the question was posed, “What really upsets your Mom?” Many of the budding teens talked about such everyday annoyances as red wine being spilled on white rugs (who would ever own such a thing?) and finding a tear in a favorite dress while heading out of the house. I think Rachel talked about our car breaking down at night just after we had dropped off my husband at LAX for a business trip (to France no less). Danny started to cry along with the moaning engine so I pulled into a nearby gas station, trying to stay calm and figure out what the hell to do. Just as I was getting ready to call a friend for help, a taxi driver with no passengers pulled up to get some gasoline. The three of us jumped into the van and went home.

As we like to say—“Don’t worry—it could always be worse.”

For Los Angeles-area friends with special needs kids and teens—Come to the Kehillah Kedosha OurSpace Gathering this Sunday, September 18th at 2:30 in Gates Canyon Park/Brandon’s Village in Calabasas. RSVP to sngilboa@vbs.org

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September 9, 2011 | 12:02 am

Flying while Disabled post 9/11

Posted by Michelle K. Wolf

A lot of people get upset about being subjected to an intrusive pat-down from TSA officers as part of airplane security if something unusual is detected during screening with advanced imaging technology (AIT)” or if they opt out of screening by AIT or walk-through metal detectors. As my 20-year-old daughter likes to say, “Welcome to my world!”

When the new security regulations came out post-9/11, I found myself subject to a full pat-down if I wanted to stay with our son Danny, who has cerebral palsy and other special needs and uses a large stroller in walking any long distances. Because he can’t walk independently through the metal detector, he is always subject to a pat-down, and since he would go into a full tantrum if left alone with a stranger, so am I. For the most part, the TSA officers are kind, and don’t subject Danny to much more than a friendly squeeze on his arms, back and legs, but I get the full treatment, standing around barefoot in an eagle-arm stance, blushing and trying not to engage in any eye contact with other passersby. The female officers doing the pat-down are always very professional, and tell me exactly what they are doing, trying to get it over as soon as possible. They don’t like it any more than I do.

And then there is always a flurry of activity around the liquid nutritional supplements that we bring along for Danny to drink; sometimes they are opened up and given a quick chemical test. I have to remember to tell the officers all the different places I’ve packed them away, so there’s no surprises in the x-ray machine. “We found two more bottles,” one overly energetic young female officer once yelled out.

But when we fly in or out of Israel, neither Danny nor I have to be subjected to this embarrassing ritual. We chat in English with the security guards who ask us about where we grew up in the United States and where we went to religious school. They glance at his many bottles of turbo-charged Boost or Ensure and send us on our way with a quick “Shalom”.

Believe me, I fully understand the need for security given the realities of our post 9/11 environment, but there’s got to be a better way for everyone concerned. Some critics say that the current security system spends too much time and money trying to find weapons instead of ferreting out terrorists. As a backgrounder report from the Council on Foreign Relations says, “One approach, called behavior pattern recognition (BPR), uses behavior clues to identify potential terrorists during passenger screening. Rafi Ron, former director of security at Tel Aviv’s Ben Gurion airport and now a security consultant working with the TSA to implement BPR programs at U.S. airports, says if BPR is widely implemented it will “add a very important security layer to our aviation [system].”

In the meantime, I prep Danny and myself before each airline trip. “The nice man is going to do a quick check, check, check,” I say to him, as I tickle him in the tummy. On our most recent trip east, Danny was even given a TSA sticker at the Philadelphia airport as a reward for staying calm during the now-common ritual. As for me, I am still working on not blushing.

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September 2, 2011 | 8:45 am

Weathering the Storm

Posted by Michelle K. Wolf

As we prepped for our annual trip east to visit relatives and take our older daughter to her dorms at NYU, we started tracking Hurricane Irene, and hoped she would stay far away from us in Philly and suburban New Jersey. But there was no escaping the wide swath of wind and rain. First our flight out of LAX on Thursday Aug. 25th was delayed almost 5 hours on the ground, and Danny, our 16-year-old with significant multiple disabilities was in no mood to wait. We kept throwing vanilla Frappucinos at him to keep him happy and stressed the need for him to stay “flexible”—something we are always talking about since Danny craves structure and sameness.

After we finally arrived at Philadelphia International Airport, the air was heavy with humidity and anxiety. We had planned to stay in Philly thru Shabbat and then drive to New Jersey on Sunday morning to get our daughter in her dorms in Manhattan on Monday. But our sister-in-law called, telling us to get to NJ as soon as possible, ahead of Irene.

We threw our luggage in the car and arrived well before Shabbat. Once there, we helped move lawn furniture inside an outside shed and located flashlights, and candles. Saturday morning was rainy but not too windy, and we stayed mostly inside, watching CNN and assorted movies. By nightfall, however, the rain intensified and my husband took the kids on a “hurricane walk”. We told Danny that “Irene was coming” and for awhile, he thought it meant another houseguest. Then we explained it was going to be very noisy with a lot of wind and rain during the night, and indeed Irene made quite a racket between 2-4 am with tree branches twisting and groaning in the wee hours. We woke on Sunday to very minimal damage—a downed screen and some bushes and plants askew but when we drove to the grocery store, there were huge downed trees blocking the road causing all manner of detours. Sunday was a quiet day with light rain and some wind and we thought we were done.

Then, at 10 pm Sunday night, the power clicked off. No electricity meant Danny couldn’t watch his beloved DVDs so we got creative and taught him to sing a new version of “Goodnight Irene…we have no electricity”. We went to a diner for lunch and tried to help our brother and sister in law salvage their two freezers worth of expensive kosher meat by taking it over to other relatives who still had power. Danny was starting to enjoy the evenings with candles and flashlights. Monday morning dawned and with it, every smoke alarm going off simultaneously, creating a shrill racket. Everyone else was holding their hands over their ears but Danny stayed in bed, rolling around in his blankets, completely calm and happy.

Finally at 3 am on Tuesday morning, the power was magically restored, and we all trooped into Manhattan on a beautiful sunny day. After our daughter was moved into her dorms, it was time to say good-bye, and that’s when Danny had his meltdown. Flexibility can only take you so far.

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