December 28, 2011 | 10:36 pm

Quirky Wishes for 2012

Posted by Michelle K. Wolf

1. Parents who watch any Disney/Pixar DVD more than 100 times will be automatically entered into a special million dollar lottery

2. Scientists will conclusively discover that if parents consume enough dark chocolate, their children’s behavior will dramatically improve

3. Any elected official who votes to cut funding for the disabled will spend the next 24 hours taking care of someone who is in a wheelchair

4. The ability to be very, very focused like a laser on one particular subject will be highly valued by society

5. Elevators will always work

6. Major philanthropists in the Jewish community will start directing a good chunk of their capital spending into residential facilities and high quality programs for Jewish adults with disabilities

7.  Danny will expand his eating to a least one fresh vegetable

8.  All luxury goods would be taxed at an extra 3%, and that funding would be restricted to funding special education teachers and aides in public schools

9.  The Ramah Tikvah program would have a free Shabbaton once a month all year long

10. People with special needs and disabilities will be thought of as “quirky”, not strange or odd

December 21, 2011 | 1:53 am

Miracles, Big and Small

Posted by Michelle K. Wolf

The four letters on our non-Israeli dreidels spell out it clearly: A Great Miracle Happened There.

Depending on your interpretation, the miracle is about the unexpected come-from-behind military victory of the Maccabees over the Syrian Greeks, or the Temple’s skimpy supply of oil lasting for 8 days, or maybe a little of each.

But for families who have a child or teen with special needs, miracles come in many shapes and sizes, from the child with special needs making it through a family dinner without throwing a tantrum or finally being able to brush their own teeth while their same-age peers are getting their driver’s licenses.

One of the unanticipated silver linings of raising a child with significant special needs is that it can liberate the parents from comparing that child to peers, cousins, even siblings. The only true yardstick is that of the child. And every accomplishment and small step in the right direction can be celebrated for what it is, another milestone.

Last week, we attended a wonderful pre-Hanukkah party at Vista Del Mar, co-sponsored by HaMercaz and the Vista Inspire Program. Families filled the dining room, enjoying their first latkes of the season, with art projects for the kids with special needs and their siblings. And then it was time for a great skit called the “Magic Ladle” presented by the participants of the amply-named Nes Gadol afterschool Jewish special education program, which Danny enjoys very much.

I watched all kids acting and moving around the stage, and felt pangs of jealously that Danny wasn’t up on the stage with them. But then the lights went down, a screen came up, and there was Danny in a video, “cooking” latkes with a metal spatula and eating a bite out of almost every latke. With artful editing, the piece was a delight.

In a recent Parade magazine article, the co-author of the book, “Gabby” about Rep. Giffords quotes her husband, retired astronaut Mike Kelly as saying, “You don’t get the life you planned,” he says, “That’s what Gabby and I have learned. When things look bad, the only answer is to find a path through it. What other choice do you have?”

And while you are finding that path, who knows, you might encounter a miracle or two.

Happy Hanukkah!

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December 16, 2011 | 12:37 am

Warrior Parents Indeed

Posted by Michelle K. Wolf

If you have ever been deeply involved in an issue or event that gets intensive media coverage, it is easy to find mistakes in what is ultimately reported in the press.  As a journalism major in college, we were warned that no matter how many people we interviewed, no matter how much depth and nuance we brought to a given issue, there would likely be “insiders” who disagreed with our coverage.

This is certainly the case with the extensive four-part series currently running at the LA Times, reported by Alan Zarembo with front-page photographs, and accompanying charts and facts with additional material including videos on line.

Although our son Danny is not autistic, he does share some sensory sensitivity common to children with autism and the majority of his classmates and friends with special needs are on the “spectrum” as their parents say. And many of them are quite upset with how the subject of autism has been approached by Zarembo in the first three parts of the series, especially taking issue with the article’s implications that some parents are exaggerating their children’s symptoms in order to get an autism diagnosis.

As my friend Judy Mark writes in her letter to the editor:
“In reality, for every child mislabeled as autistic there are many more who have the disorder and never get the diagnosis that will provide them with the services they desperately need.”

My own flash point with the series was with the second article, titled, “Warrior Parents” featuring a photo of Jonah Funk, one of Danny’s bunkmates from the Tikvah program at Camp Ramah, on the front page.  Zarembo detailed much of the hard work Jonah’s mom, Stacie, has done to ensure that Jonah gets the help he needs, and then wrote, “But not all parents have the time and resources to fight the way Funk did. That contributes to striking disparities in how the services are distributed.”

He goes on to document that white children (with Asian children not far behind) with developmental disabilities receive significantly more state funding than do Latino and Black children. Instead of looking at the systematic reasons for this, which I will get to in just a minute, he seems to criticizing the White/Asian “warrior parents” for hogging up the scarce resources available at the state and school districts.

Here’s the thing: each person who is eligible for Regional Center services paid for largely by the state is assigned a Service Coordinator (their titles have changed over the years but they basically function similar to a social worker). This Service Coordinator is charged with helping each family develop an individual plan, and in some cases, funding the services, such as social skills, respite and various other therapies/programs. Why aren’t the Service Coordinators doing more (with encouragement and support from their management) to help educate and empower those Latino and Black parents? Shouldn’t we be trying to bring everyone up to an optimal level of functioning instead of bringing the system down to the lowest possible level?

For parents who are educated and understand how to navigate the system, the Service Coordinators function as more of liaison than a case manager. Here’s my recommendation – create two parallel systems, one for parents who can “self-advocate” and they can be given vouchers, based on their children’s level of need that can be “cashed in” with any pre-vetted vendor, with all reporting done on-line.

The second system would be for parents who need more guidance and support, with intensive hands-on case management from the Service Coordinators.

There’s already been a successful pilot of the first model called, “Self-Directed Service” for adults with developmental disabilities at the East Los Angeles Regional Center, in partnership with Area Board X and it shows great promise.

One last thought – the timing of this series couldn’t be worse, as Gov. Brown announced on Tuesday that the state budget “trigger” cuts of $1billion will impact heavily persons with developmental disabilities including a 20% across-the-board reduction for in-home service hours. We can only hope that the LA Times will devote the same number of column inches to the consequences of those cuts as they have to this series.

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December 8, 2011 | 4:57 pm

After The Angel

Posted by Michelle K. Wolf

As Jews, we are told to take the Torah and “turn it and turn it again.” This can result in the proverbial, “2 Jews and 3 arguments” experience, but can also provide a whole new perspective on an old text.

For example, I recently learned that Jewish tradition teaches us that Jacob, as a result of his wrestling with an angel, ends up with a dislocated hip and was physically disabled for life with a permanent limp. Who knew? I always thought it was a description of a metaphysical experience, with Jacob confronting his “darker” side and having emerged victorious, is given a new, stronger name, “Yisrael”

In a new book titled, Esau’s Blessing: How the Bible Embraces those with Special Needs by Ora Horn Prouser, the author explores how this disability impacts the rest of Jacob’s life, resulting in a more passive and vulnerable personality.

She writes:

“…Jacob seems far more subdued than his (new) name might suggest. When Jacob’s daughter, Dinah is raped, a devastating affront not only to Dinah but to the honor of her whole family, Jacob refuses to take any stand without his sons present (Genesis 34:5)”

As a Jewish educator, Prouser has worked with many Jewish children who had special needs and hopes that by using a disability lens to re-examine the lives of such Biblical notables as Moses, Esau and Samson, it will result in a kinder, more compassionate Jewish community.

One of most intriguing profiles she writes is the chapter devoted to Isaac, and her hypothesis is that he was mildly mentally retarded, the same conclusion drawn by Rabbi Judith Z. Abrams in her 1990 article in the Reconstructionist magazine, “Was Isaac Disabled? “

Here’s the facts:
• Isaac is born to older parents (Sarah was supposed to have been 80!) who are themselves close relatives.
• When his father, Abraham almost sacrifices him, why doesn’t he protest or fight back? Why does it take him so long to figure out was going on?
• He is easily tricked by Joseph into giving him the blessing instead of to Esau

I’m not fully convinced that these facts, plus other textual nuggets, truly add up to a definitive DSM diagnosis, but it’s pretty intriguing to think about.

I urge Jewish professionals and parents raising children and teens with special needs to take the time to read this new book, available at www.BenYehudaPress.com

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December 2, 2011 | 1:37 am

Retail Therapy

Posted by Michelle K. Wolf

I think that shopping must be an inherited gene on the maternal side, as my Mom was often known to say, “The prices were so low, I just couldn’t resist.” My husband can spend hours in an outlet mall in the men’s stores and my daughter also enjoys snagging a good bargain on the latest fashion.

But for Danny, our 17 year old with significant developmental disabilities, shopping holds limited appeal. He likes the children’s book section or the DVD movie section for a few minutes but then is more interested in getting a “mall cookie” (what we called Mrs. Fields) or taking a walk. He’s never been able to communicate with us any type of “wish list” as I remember making as child, going through the entire Sears catalog and earmarking my heart’s desires.

We’ve been paying a private speech therapist to come over to our house once a week since the speech therapy provided in public school is only given in groups and the therapists aren’t permitted to touch the children’s lips or mouth, which is of course precisely the type of therapy Danny needs at this time. Plus the fact that Danny sometimes acts up during therapy sessions at school, one time even shoving the table down to let the therapist know he was done.

At any rate, Danny is finally talking more. And part of that communication has taken a new turn regarding shopping. One of his favorite DVDs of all time is the first of a series of Israeli children’s song compilations, called “Shirim K’tanim” sung by Uzi Chitman, a well-known Israeli singer. Unfortunately, the beloved DVD disk broke during a trip to Israel in spring of 2009, and we couldn’t replace it because the DVD is now only available in an Israeli-DVD format and we have an American DVD player.  Not compatible.

A multi-region DVD player can solve this problem, but when we first checked into buying one, the cost was several hundred dollars, and we forgot about it. But Danny didn’t. He kept asking us for “Uzi Plane” as he called the first disk, after a song about flying in an airplane. A few months ago, Danny came up with a solution. “Uzi plane, money” he said. We tried to explain that the DVD itself didn’t cost that much, but that different formats were the problem (who in the hell came up with different DVD formats for different regions anyway??). Finally, we found a multi-function player on the Internet for less than $50 and ordered one. Then, we took a trip to the Steimatzky’s store in the valley for the DVDs.

As it turned out, the only DVD in the series that the store did not have was “Uzi Plane”, but they did have all the others, including one that had also bitten the dust several years ago which we purchased as a poor substitute. The new multi-function DVD player was installed, and the substitute DVD popped in. Big smiles all around. Then we played the Hebrew version of Aladdin we’ve had around for years but never have been able to play because it is also in the Israeli-DVD format. Danny was delighted to hear Jasmine speak in Hebrew. Everyone was happy.

Two days later, the new multi-region DVD malfunctioned, and refused to read any DVD’s (American or Israeli-formatted). “Can’t read disk” it said, over and over again.

Back to the drawing board…

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