May 26, 2011 | 11:23 pm

How the “F-word” can trump the “R-word”

Posted by Michelle K. Wolf

If a picture is worth a thousand words, than one video (or two) must be worth even more. This week, I watched two short videos (yes, the links are coming) on the subject of how people perceive people with special needs.

The first was a new Public Service Announcement (PSA) produced by a national joint effort of Special Olympics and Best Buddies to get people to stop using the word “retard” in their everyday language as a synonym for “stupid”. This “Spread the Word to End the R-Word”  (http://www.r-word.org) campaign is trying to raise awareness that the current common usage of the R-word is in fact, very offensive to people with intellectual disabilities, and for those who love them.

Their new 30-second PSA is called “Not Acceptable” and it first aired after Glee on Tuesday night, featuring people of different ethnic backgrounds, each of whom expresses that it is not acceptable to call them by what were once common words, but are now recognized as offensive slurs.  At the end of the PSA, co-star Jane Lynch joins Glee actress Lauren Potter and together, they ask viewers to stop using the R-word. (This video was pre-screened and endorsed by a number of advocacy organizations including the ADL, GLAAD and the NAACP.)
Watch the PSA here

The second video was shown at The Friendship Circle of Los Angles 8th Annual Evening of Recognition on May 25th, in which I was honored to be honored, along with Mrs. Raizy Brief.

In this video, the letter of choice was “F” as in the Friendship Circle, and their Friends At Home program, which matches teen volunteers with participating children and teens with special needs in their homes. Teenagers receive training and preparation before their first visit. This is just one of a dozen programs offered by Rabbi Michy and Miriam Rav-Noy, along with their dedicated staff and the hundreds of teen volunteers.
Ariel Bernstein, a very articulate high school volunteer, spoke at the dinner, described how she bonded with her teenage “match”, a fun loving Orthodox teenage girl I will call Bracha with whom Danny has attended public school for many years. Ariel spoke that although Bracha can’t speak well, but she is able to use sign language to communicate. At one point, Ariel wrote their names down on a piece of paper. Bracha immediately intertwined her index fingers, making the sign for “Friendship.”
You can watch the Friendship Circle video here:
http://www.youtube.com/watch?v=riDbc22ftPE

Please, sign the pledge to stop using the R-word, and even more importantly, open your hearts and minds to potential new friends.

May 20, 2011 | 3:22 pm

Pinch Me: We are hearing HaTikvah in the White House

Posted By Sally Weber and Michelle K. Wolf

In the Green Room

Michelle: The email invitation came on Friday, May 6th while I was at the pool for Danny’s weekly swim lesson. As I watched him laughing and kicking around with his long-time swim instructor, I read over the text a few times. It read: ”Attached is an invitation from President and Mrs. Obama for Jewish American Heritage Month. We hope you will be able to attend the event.” And then I opened the attachment with a Presidential seal on top. Sally Weber and I, co-founders of HaMercaz, the one-stop program funded by The LA Jewish Federation for Jewish families raising a child with special needs, were actually being invited to the White House on May 17th, to celebrate the “generations of Jewish Americans who have helped form the fabric of American history, culture and society.”
Luckily, I was going to be on the East Coast anyway, to see my daughter perform in an off-off Broadway show, so it wasn’t too big of a hassle to book an Amtrack train from New York to DC and change the return flight home.

When I told Danny, my 16-year-old with CP and other developmental disabilities that I was going to stay an extra night on the east coast to see the President he got very upset. I asked him what I should talk to President Obama about if I had the chance. He replied, “Shuki” the name of our cat. I told him the President family’s had a dog, not a cat in the White House. The next day, I again asked the same question. Danny replied quickly:” Get a cat!”

On May17th at 1:45 pm, under drizzling skies, we gathered at the southeast entrance to the White House, going through our first security check, making sure our names were on the list and our photo ID matched our name (we had given our social security numbers ahead of time to the Social Secretary), and then to the X-ray/security tent before entering the east wing of the White House. A Marine in dress whites greeted us, “Welcome to the White House.” I had to keep remembering I wasn’t on a back lot at Universal Studios.

In the Ladies Room, everyone was primping, reminding me of a Prom Night. I thought I would look like a tourist snapping away photos, but everyone else had the same idea—35 mm cameras, cellphone cameras, and video cameras. There weren’t any restrictions on what we could photograph so we all took pictures of everything—chandeliers, vases, and views, even the kosher food menu.

As the male a cappella group, The Maccabeats from Yeshiva University performed, the crowd of around 200 surged toward the gold rope that had been set up in front of the stage. William Daroff, the head of the Jewish Federation’s of North America DC office had warned me ahead of time that to have a chance of actually shaking the President’s hand, you needed to be right up against the rope.

Although some tall people did get in the way of a perfect sightline to the stage, I could nevertheless see President Obama walk over to the podium very well (good thing he’s tall) and the excitement in the air was like the opening of a U2 concert. As it turned out, I was close enough to shake the President’s hand (twice) and ask him Danny’s question. “Mr. President,” I said, starting to feel very silly, “my son wants to know if you will get a cat in the White House?”
A half smile appeared. “I’m not really a cat guy.” he said. In retrospect, I should have asked, “Are you a post 67-borders kind of guy?” but it was two days before the big speech.

Sally:

My White House adventure began with an excited call from Michelle:  “Did you get the White House invitation? Can you go??” Hadn’t a clue what she was referring to.  And I was about to Skype with my grandchildren in Houston (we DO have priorities, after all!)  By Sunday, it all became clear:  my invitation had been emailed to Michelle along with hers, we were indeed invited to the White House.  And all priorities changed!  I was able to invite my husband, Malcolm, as well—we scurried for reservations (ended up on separate flights because of the late notice) and I proceeded to bounce off the walls for the next seven days.

Our visit started with a very special opportunity as we joined long time friends Janet and Rep. Henry Waxman at the Holocaust Commemoration Ceremony that Capitol Rotunda, an event honoring Elie Wiesel and keynoted by Supreme Court Justice Stephen Breyer.  Henry was also one of six Congresspeople who escorted camp survivors as they participated in candle lighting ceremony.  We entered the Rotunda through the Hall of Statues, flanked by military personnel in full dress, each holding a flag representing the U.S. Army battalions that had liberated concentration camps.  The US Army Band played a moving medley of Jewish music that echoed through the great Rotunda.  For me, the most moving moment was after the event—when Henry joined the survivor he hosted, a very elderly woman who refused to use her walker and instead walked elegantly on Henry’s arm to the candlelighting, flanked by her children, grandchildren, and I suspect great-grandchildren for a family portrait of this powerful moment.

From there to the Senate Dining Room for lunch, then to the White House.  Dayenu!  But our day had just begun.  The reception was held in the East Wing, where the entire second floor was open for our celebration.  Following the Maccabeats’ performance (I’ll be the coolest grandmother in Houston when I send my kids the photo of me posing with them..or is it them posing with me?), with no pomp and circumstance, came President Obama.  He commented on the privilege of meeting briefly with the Maccabeats and actually having them sing him a short song—which went something like ‘Four more years, four more years!’  The group laughed in appreciation. 

The event was on live feed—my daughter said that the second he walked in, all you could see were cell phones and cameras in the air.  Guilty as charged!  A few minutes, a handshake (strong, lots of eye contact) and an autograph later, we were off to the party.  Kosher food and Hatikvah at the White House—who could imagine?  As mentioned, all the rooms were open to us—who knows who sat on the chairs that Malcolm, Michelle, Rabbi Denise Eger, Rabbi Adam Kligfeld and I sat on that afternoon!

We were a widely diverse group—academics, rabbis, members of social service organizations, Democratic Party activists, authors and artists.  Almost universally, two degrees of separation at most. The 200 people gathered shared a similar thread of conversation:  How did you happen to be invited?  Names and emails were exchanged, new networks established.  The adrenaline rush continues!

OK, the universal question from everyone:  What are you going to wear?  Bottom line, we all looked great.  And as a friend said to me, ‘Well, whatever you wear, the Obamas haven’t seen it yet.  Just don’t wear the same thing the next time’.  Next time..from her mouth to God’s ears!!

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May 13, 2011 | 12:35 am

Wake Up and Smell the Ensure!

Posted by Michelle K. Wolf

Everyone I know seems to be taking on a new role these days – taking care of aging parents or grandparents.

I spent an emotional hour with one of my dearest childhood friends at a restaurant last week, helping her adjust to her new full-blown responsibility as a caregiver for her 88-year-old mother (same age as my Dad). Her mom has been hospitalized for 3 long weeks, first for bronchitis-turned-into-pneumonia, and now dealing with getting her off a feeding tube and a worsening of her dementia. When I went to get my hair cut today, my hairdresser was talking about her mom’s slide into frailty, and inability to take care of herself anymore. And last week at shul, I got into a brief conversation with a newer congregant, who was there with his 91-year-old Mom, who whispered to me, “I see you here with your son and wondered how you did it. Now I’m Mom’s caregiver. She’s acting more like 19 than 91—she’s so stubborn.”

As my 19-year-old daughter used to say: Welcome to My World!

The type of case management we have been doing for many years for our son in order to get the optimal medical care, medications and therapies is a new skill that many of my same-age peers are just starting to learn. With the graying of the Jewish community now in full swing, it is time that everyone learned a few key lessons of how to provide caregiving for a relative:

1) Get a big 3-ring notebook or an accordion file and start keeping every piece of paper connected with your loved one in the same place, in chronological order

2) Create a phone directory with the names, phone numbers and emails of every professional with whom you come into contact—do not keep the information scribbled on a bunch of post it notes attached to your computer

3) Try to plan ahead for possible next steps—so that can mean checking out different in-home options, assisted living or even skilled nursing homes. Having knowledge ahead of time will go a long way to minimize stress down the road

4) When someone is in the hospital, it is critical that family members or close friends be there to be advocates. Hospitals are disconcerting even for the healthy, but when you are sick on top of being elderly or disabled, it can be much worse. Paying close attention to which medications are being administered is very important.

5) Always be on the lookout for the positive—in the midst of medical appointments and therapies, you can easily overlook the chance for something wonderful, like a smile on seeing a rainbow or enjoying a frozen yogurt on the way home.

Above all, always treat your loved ones as you would want to be taken care of—because in a few years, you may be on the receiving end of caregiving.

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May 8, 2011 | 1:57 am

Counting the Omer and our annual IEP

Posted by Michelle K. Wolf

This year, for the first time in my life, we are “counting the Omer”, the 49-day period between Passover and Shavuot, which is traditionally considered to be a period of spiritual elevation and self-fulfillment. Every morning, Danny takes a marble from a large container and moves it to a small container and we say the bracha together. We consider this part of his “functional math skills”.

Each of the seven weeks of the Omer is given a separate emotional attribute that we are supposed to really focus in on. As it happed, Danny’s annual IEP (Individual Education Plan) meeting at LAUSD fell on Day 15 of counting the Omer, which begins a week of “Tiferet”, translated as “harmony” or “compassion”.

For those of you lucky enough to have missed the experience of an IEP meeting, it’s kind of like a cross between a very grueling job interview and a parent-teacher conference. There are usually many representatives of the school district, including the special education teacher, special education administrator, general education administrator, and the various specialists such as speech therapists, occupational therapists and physical therapists.

The stated goal of the meeting is to “design an educational plan to meet your child’s individuals needs” but invariably, there are attempts to remove or shorten services provided by the specialists, and we spend most of our energy as parents trying to keep the services we have.

As it turned out this year, the IEP team was a good one, with everyone providing mostly positive reports and suggestions, but when it came to the specialized services, it was all about cutting back services. The speech therapist said he was looking for a more flexible approach than once-a-week 60 minutes and proposed 30 minutes of consultation in the classroom. We were fine with being more flexible in how the speech therapy was provided, but pushed it back up to 45 minutes. Then the occupational therapist wanted to cut her once a week session from 30 minutes to 25 minutes. We said no way. Everyone present on the “team” knew that the real reasons for the proposed cuts was the state budget, but wasn’t allowed to say that, so we all did a delicate dance around the real issue of public education funding, or lack thereof.

Every one present was professional and kind, and showed a genuine interest in Danny’s education. We walked out feeling a sense of compassion, even if the money counting is the subtext for all of the other assessing and quantifying.

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