Posted by Michelle K. Wolf
A small news item on LA Observed caught my attention this morning:
“Lakers Center Andrew Bynum was videotaped parking his BMW across two marked disabled spots at the Bristol Farms store in Westchester. Joel Grover of KNBC has posted stills from the video, which the stations says was shot by a parking enforcement official.” He was unfortunately, not fined nor cited, which really pisses me off, since with a $14 million salary, the $353 fine would hardly be a financial hardship, and would have sent out a loud and clear signal that people who don’t have legitimate disabled placards shouldn’t park in disabled sports. Not ever. Even if you can rationalize it—“Um, these groceries are really heavy and I’m in a big fat rush to get to practice.”
We have had disabled parking placards for at least a decade for our son Danny, who has mild cerebral palsy. As we encourage him more and more to use his walker instead of his large-size stroller cum wheelchair, having access to the disabled spots becomes even more important to us in terms of mobility training and helping him to be independent. During his recent stay at Camp Ramah in Ojai, the camp put in a “curb cut” and laid down plywood to accomodate his mobility needs, which was truly heartwarming.
In general I find that most people are really good about observing the law and leaving the spaces open to those who really need them, but every now and again, there’s some jerk who decides he/she can’t be bothered to obey the law and be a good citizen. I don’t follow sports very closely (okay, hardly at all) but my friends who do tell me this isn’t the first time that Bynum has shown himself to be something less than a model citizen and display good sportsmanship.
Two suggestions for Mr. Bynum’s T’shuvah, or repentence, regardless of not getting fined:
1) Make a donation to a local charity that helps people with physical disabilities
2) Spend some time with someone in a wheelchair or a walker and experience life from their perspective, as did Yankees Manager Joe Giradi when as part of Yankees HOPE week of community service, he surprised an elderly blind Yankee fan and came to the stadium with her and her guide dog along her usual route—2.5 hours of train, subway and sidewalk.
Now that’s what I call walking the walk.
12.5.13 at 8:56 pm | The first national Leadership Institute on. . .
12.3.13 at 7:51 am |
11.22.13 at 6:05 pm | When all four Jewish movements come together to. . .
11.15.13 at 12:00 am | Self-Advocates and Family Members are furious by. . .
11.3.13 at 10:36 pm | Teachers-in-training want to include more. . .
10.27.13 at 10:12 pm | A group of parents in the 50s and 60s refused to. . .
July 13, 2011 | 11:47 pm
Posted by Michelle K. Wolf
Since Danny is still at Camp Ramah, I’ve had a little more time to read my email inbox, and it is buzzing about all the proposed Federal cuts to Medicaid, (called Medi-Cal in our state) and how those cuts would impact families taking care of a child or adult with developmental disabilities. The Obama Administration is opposed to most Medicaid cuts, but the issue is still in play, tossed around like a political football.
Compared to Medicare and Social Security, Medicaid is the lesser known of the three major entitlement Federal programs, but is absolutely essential for the most vulnerable populations in society. As the Almanac of Policy Issues says, “The significance of Medicaid’s role in providing health insurance cannot be overstated. The Medicaid program covers millions of low-income women, children, elderly people and individuals with disabilities. “
For adults with developmental disabilities, Medicaid is their main source of funding for almost everything they need or do –medical care, in-home care, residential services, even transportation. For us, Medicaid is our secondary health insurance for Danny, after our private PPO insurance, and it has helped with big ticket items, like wheelchairs and voice output devices (which run around $8,000). If the program is block granted, that means states would receive a fixed amount of money, and many programs would be likely be drastically reduced or eliminated. With spending caps, the ceilings will be set well below current spending, again resulting in program cuts.
On The Arc website (the national group founded in 1953 by parents originally called the National Association for Retarded Children), there were moving stories about the four families who traveled to Washington DC last week to tell their story, including Natalie and Ruben from Texas.
I identified with them at once—parents of 31-year-old TJ, who was born with significant intellectual and developmental disabilities. He needs assistance with everyday activities like bathing, brushing his teeth, getting dressed in the morning, communicating effectively, walking, and preparing his meals. Medicaid covers TJ’s neurologist, endocrinologist, rehabilitation specialist, occasional home care, speech therapist, orthopedic specialist, primary care, and his prescriptions. Medicaid Home and Community Services funding has also paid for modifications to their home that allow TJ to live with them, like ramps and bathroom modifications.
If cuts are passed to Medicaid, there will be increased pressure for religious and faith groups to pick up the slack and fund/provide more help directly to their congregants and members. In essence, it would be turning back the clock to the time when some local communities did an adequate job of taking care of the vulnerable, and others didn’t. Doesn’t sound like a fair playing field to me.
July 7, 2011 | 9:13 pm
Posted by Michelle K. Wolf
For the past two weeks, our household has been strangely different – no puzzle pieces or Lego toys strewn around on the floor and poking up from the sofa, no strains of the “Macarena” and “Theme from Rango” can be heard coming from the Ipod, and the only movies playing on the DVD are art house movies from Netflix.
Thanks to the Tikvah program at Camp Ramah (California) and our wonderful 1:1 aide, Danny, 16, is mid-way through Session I in Ojai, the longest time he will have ever been away from home. A few years ago, we started Danny off with 2 weeks away, and have gradually increased his time at camp, until now he will be gone a grand total of 26 nights (but who’s counting?).
When Danny was little, the most we could hope for was one or two nights away—his complicated medication regime, his craving for routine, and his inability to communicate very much except for an emphatic “NO” and whining on demand. Family members have also given us some nights off which we appreciate, but the logistics are complicated.
We first got an entire weekend away when Danny was around 5 through a program at United Cerebral Palsy (UCP) called “respitality” in which local hotels provide two free nights of stay for the parents, and UCP provided a qualified respite worker from one of their many group homes to take care of Danny, all for free.
The respite worker was very competent and a warm, loving person, who unfortunately, couldn’t really get the hang of kashrut and according to our daughter, fed Danny cheese pizza with a kosher beef hot dog. Plus the respite worker let our daughter stay up way past her bedtime and watch “Jerry Springer” on TV. Oh well. Everyone survived.
But camp, both general and Jewish seemed like the better plan for some quality respite time. Danny first went to a summer camp sponsored by Ability First , and then JCA Shalom and now the Ramah special needs Tikvah program, where his favorite day of the week is Shabbat.
In previous years at camp, we were contacted often about various issues, but this year seems to be going smoothly after an initial bout of homesickness at night. We view on-line photos of him enjoying himself in his favorite place in camp—the pool—and read the blog written by the counselors, so we know all is fine, but it is both liberating and disconcerting not to know what’s happening with him every day.
We’ve decided that “no news is good news” and linger a little longer in the newly-installed hammock, savoring the free time and looking forward to his return in mid-July. Until then, there’s no reason to make the time go any faster.
June 30, 2011 | 12:47 am
Posted by Michelle K. Wolf
As a parent of a child with special needs, we have been warned by many behavioral experts about not giving into “attention getting behavior”
such as when Danny takes off his seat belt in the car or purposely spills an ice-cold drink at the table. The typical parental reaction, of course, is to yell and make a big deal (which I stand guilty as charged), but it turns out that getting visibly upset actually reinforces the bad behavior. Instead, we are counseled to re-direct that need for attention to positive behavior, and to minimize the attention given to the undesirable behavior.
Tracy Morgan must be one dude in need of a lot of attention. Thanks to my friend Ellen over at Love That Max, I caught up with the comedian’s latest “not dos” as we call screw ups around our house. First, he mouthed off some nasty anti-gay remarks in Nashville including the remark that if his son were gay, he would “pull out a knife and stab” him. He apologized twice for that hateful comment, and teamed up with the Gay & Lesbian Alliance Against Defamation for meetings in New York and Nashville. Then he turned around in New York City and during a stand-up routine at Caroline’s Comedy Club on Saturday night, June 25th, he made fun at people with disabilities, and their moms. “Don’t ever mess with women who have retarded kids,” he said. “Them young retarded males is strong. They’re strong like chimps.” Previous news articles about Tracy Morgan have mentioned the fact that he has an older brother with cerebral palsy and much of his attraction to comedy developed from that experience.
As they quote on BlackAmericaweb:
“In his book, “I Am The New Black,” Morgan is more serious than funny, sharing his poverty-stricken childhood growing up in the Brooklyn projects. He says he developed much of his comic skills from childhood. One of the things he says is that when bullies tried to pick on him, he couldn’t summon his older brother because of his disability (his brother has cerebral palsy), so he learned to be funny.”
Whatever the rationale for his latest rant, it’s clear that Tracy needs to start engaging in some positive behavior that will bring hm the attention he apparently craves. And by the way, Tracy Morgan is absolutely right about one thing—us moms of kids with special needs are super strong. We have to be.
June 23, 2011 | 11:39 pm
Posted by Michelle K. Wolf
Support for families raising a child with special needs can take many forms.
When Danny was around 3 years old and we realized that his “developmental delays” weren’t temporary, we began to more actively seek out help and advice. A family we had known for years with a teenager who had intellectual disabilities took us out to dinner and shared the twists and turns of their own challenging journey. Family members offered to help pay for expensive therapies. And a total stranger volunteered to come to over to our home once a week as part of the then “Family Friends” program at Jewish Family Service.
Herb Ehrmann, a successful retired attorney who had been personally touched with his own children with special needs first entered our lives 13 years ago, and still comes over once a week in the evening to provide us with some “time off” or respite from parenting a child with significant disabilities. He is always exactly on time, and invariably in a good mood.
Over the years, Danny and he have developed their own little rituals, such as eating certain food, (for many years Danny called him “Herb Toast”), and watching baseball or basketball on TV, something Danny never does with anyone else.
We usually use those precious free hours to go to the gym and have a good workout, often followed by frozen yogurt (if we are feeling virtuous) or ice cream (when we are not). Other times, we use the time to hear a lecture or see a movie, re-entering the world of ideas and culture outside of our respective work areas.
As with any close friend, we experienced good times together, such as Herb’s marriage to his lovely wife, Connie, and summer evenings in their Jacuzzi, as well as the darker, sadder parts of life.
In addition to coming over to our house once a week, Herb also volunteers for Chaverim, the social/recreational program also provided by JFS (with partial Federation funding). He takes the adults bowling, and goes away overnight with them on Shabbatons and other special events.
This Sunday, Herb is being honored at the10th Annual Shining Star Fundraiser for his 20 years of “generous and dedicated service” to Chaverim at 2 pm at the Milken Community Campus, 22622 Vanowen Street in West Hills.The program will feature a special performance by the Chaverim Singers, silent and live auctions and appetizers & desserts.
For us, Herb has become a very close family friend indeed and we wish him Mazel Tov on this well-deserved honor.
June 16, 2011 | 11:48 pm
Posted by Michelle K. Wolf
Last night I attended the “Father of the Year” 2011 Awards dinner at the Beverly Hills Hotel which benefited the American Diabetes Association, and was deeply moved by the videos, tributes and speeches of the three honorees. One of the honorees was Dr. Kevin B. Kaiserman, a pediatric endocrinologist who works with Type 1 diabetes kids and teens (a newly-diagnosed 17 year-old kept texting him questions during the evening). He talked about how his own father, also a physician, took Kevin along with him to see patients when he was just a child (way before patient privacy laws) and showed him by example how to be both a caring doctor and a loving Dad.
I wish there was a similar gala evening honoring those Dads of kids and teens with special needs who go way beyond the call of duty.
The Dad who takes his twin kids with severe asthma to the Cedars ER so often that the graveyard shift staff members know his name. The Dad who spends every night sleeping with his daughter who has seizures to make sure she makes it through the night. And the Dad who spends countless evening and weekend hours helping his son with cerebral palsy learn how to walk (I’m getting personal here).
What makes these Dads really special is their commitment and dedication to their children, despite the conventional thinking that after a special needs diagnosis, Dads tend to retreat into their professional lives and re-double their efforts to make more money while the moms typically take on the day-to-day tasks of therapies, medical appointments and fighting the insurance company for coverage.
As Jill Brooke said in a HuffPost piece posted on Oct. 24 2008 :
“A recent study in The Journal of Consulting and Clinical Psychology revealed that parents of a child with attention deficit hyperactivity disorder are nearly twice as likely to divorce by the time the child is 8 years-old….
The caregiver—usually the mother—will feel like a twister has ripped through her home and heart, literally uprooting her life. To survive is a daily struggle; to thrive requires a candor between husband and wife that drills into the deepest crevices of their beings and leaves no emotional stone unturned.”
In the Jewish community, our biggest accolades are typically given to the men who have been professionally successful, are the biggest philanthropists, or garner the most Oscars. We tend to stay away from talking about the work/life balance when it comes to fathers, and ignore the fact that 60-hour week jobs can often take guys away from being actively involved in their families, with or without special needs.
I want to end by giving a special shout out to my husband, Aron Wolf, for being such a great Dad for both of our children, and trying to live up to the immortal lyrics of “The King and I” when Yul Brenner sings, “Everyday I do my best for one more day”!
June 10, 2011 | 12:21 am
Posted by Michelle K. Wolf
I don’t spend much time worrying about vampires, mutant aliens or even earthquakes (okay maybe a little) but the fear monster that lurks in the back of my head is: will someone else ever be able to take care of our teenage son Danny with multiple disabilities as well as we do?
This fear was intensified the other day while reading the NY Times article of June 5th, 2011 with the blood curdling headline of A Disabled Boy’s Death, and a System in Disarray, part of a larger investigative series, highlighted the problem of low-paid staff, some with criminal backgrounds, who often provide the hands-on caregiving on a daily basis. After just finishing reading “The Beautiful Girl” by Rachel Simon, which provides a historical fictionalized account of similar state institutions during the 60s , including many acts of cruelty and violence against disabled residents, I had felt thankful that we were living in better, more enlightened times; the NY Times article felt like a slap in the face.
Because of this investigative series of articles, I am sure that a full government investigation will take place, some people (mostly lower level) administrators will be fired, and things will improve, at least in the short run. But the fear that a crazed, stoned minimum wage worker can hurt or harm our son remains high.
While worrying about this distant future, I do have something far more pleasant to look forward to (as does he)—the Camp Ramah California Tikvah program which starts in just a few weeks. Danny will be accompanied by a wonderful aide, who we have literally known since his birth, and I know that Danny will be well-cared for, even spoiled by having tons of attention from campers, and staff. We have already begun to pack the first duffel bag, and almost every day Danny finds another toy, a book, that he wants to see packed.
We will all benefit from the 26-night break (but who’s counting?), and will enjoy a happy reunion mid-July The question is, how can we take that wonderful away-from-home intensive Jewish experience (with a pool to boot!) and turn that into an adult lifetime?
June 2, 2011 | 9:43 pm
Posted by Michelle K. Wolf
In the Jewish community, there’s a certain jockeying among parents (at least among the moms) about whose kid spoke first, or who said the longest sentence, or who asked the best question. And while an early verbal ability often equates to high intelligence, what about the kids who can’t verbalize?
In our journey with Danny, we have met many disabled children, teens and adults who can’t verbalize, due to various developmental disabilities, yet they still have plenty to say, if only they can find the right alternative communication system. For some, it takes a complicated computer voice output device to be able to communicate, and for others, a simple letter pointing board can make all the difference.
Over the years, Danny has worked his way up the ladder of various alternative electronic devices, starting with a simple device such as this
and he is now using a pretty sophisticated voice output device that uses icon pictures, as well as a keyboard. Most of the time, he likes to tell us what he wants to do such as go to the beach or the park, or talk about his cat (a major topic as you might gather from previous posts). Lately, he is also using it to look ahead at the calendar, such as upcoming holidays and when Camp Ramah starts. In school, he uses it for spelling words and to help drill the Freshman basketball team (his aide is a former basketball coach).
There’s a new documentary called “Certain Proof: A Question of Worth” which will have its west coast premiere in Los Angeles this coming Saturday, June 4th at 10 am at the Laemmle’ Sunset 5 as part of the “Dances with Films” low budget independent film festival.
The film is a feature documentary about three children living with significant communication and physical disabilities and depicts their parents struggling against the public school system in an emotional battle to prove their worth. I am hoping we can get a copy of the film for a showing when it is not Shabbat, but in the meantime, you can get a real sense of the film by watching the trailer at http://www.certainproof.com/press.html
Although Certain Proof doesn’t feature any pirates, drunken bachelors or food-poisoned bridesmaids, this is still a summer film worth seeing.