Posted Sarah Blitzstein, MA, MSW, Director, HaMercaz
There’s something amazing about summertime. Spontaneous trips with the family to the beach, the children’s museum, the amusement park. There’s no homework, schedules are loose and everyone is more laid back. You pile into the car, pack leftovers into Tupperware and head off into the hot summer sun. At the end of the day, everyone enjoys an ice-cream and the kids fall asleep on the way home.
Sounds like the perfect summer day, but for many families raising children with special needs,. ‘spontaneity’ and ‘loose schedules’ are more curse than blessing. Kids with special needs often love routine and schedule and spontaneous trips aren’t on their schedule. Trips to the park are difficult because your son with autism wants go up and down the slide for hours, which is hard when other children are waiting in line. A child with sensory issues may hate the feeling of sand on his body. And you may have other children as well—siblings who want to (and can) run around the playground, wait their turns, climb the jungle gym unaided. Other moms and dads seem to be socializing with one another. But you can’t because you need to watch your child’s every move. And sometimes that includes apologizing for your child’s behavior, knowing they are thinking ‘why doesn’t she discipline him?’ or ‘what kind of a dad hovers that way??’
Are you looking for a different experience? One where you might say, ‘This is a place where my children can feel safe—and I can relax with other moms’? Where you might say, ‘This is the only place where I don’t feel my child is weird—he’s just one of the group’? Where another parent might say to you, ‘Don’t worry, this is a place where you never have to feel embarrassed’? This is what families who attend HaMercaz playdays tell us…over and over and over. HaMercaz is the one-stop resource for families with children with special needs, a program of the Jewish Federation and Jewish Family Service and eight other Jewish agencies. Our multigenerational family events are held 5-7 times a year. And the events are for the whole family—you and all your children, grandparents, cousins, aunts and uncles. Anyone you want to bring. Each family event is held in a setting reserved especially for HaMercaz families—the Zimmer Museum, the Noah’s Ark Exhibit at the Skirball Cultural Center, parks, equestrian centers. These family events are wonderful ways for families with children with a variety of special needs to meet, play and get to know each other. As one of our moms told us, ‘I get to play, too—with other moms!’
On September 15 HaMercaz is hosting a family play date at Noah’s Ark at the Skirball Cultural Center (visit www.Hamercaz.org for more information). If you live in Los Angeles and have a child or grandchild with special needs, you’re invited to join us. We’d love to have you join us; at the end of the day, everyone leaves with a goody bag and a smile on their face. It may not be ice cream, but it’s just as sweet.
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August 19, 2011 | 7:35 pm
Posted by Michelle K. Wolf
People buy health insurance (or their employers purchase for them) for just one reason –to get help when they are sick. Why else should you (or your employer) pay monthly premiums? For people who are generally healthy or have common medical conditions, health insurance can work pretty well, taking care of, for example, ear infections in little ones, physical therapy for bad backs in middle-aged folks and even heart problems for grandparents. But for parents raising a child or teen with developmental disabilities or other complex medical conditions, it feels all too often that you are on the frontlines of an epic battle.
According to Marty Omoto, Director of the California Disability Community Action Network, there’s a very important piece of pending legislation in Sacramento authored by Senate President Pro Tem Darrell Steinberg (Democrat - Sacramento, 6th State Senate District) that would require health managed care plans and health insurance plans to provide behavioral health treatment for persons with autism spectrum disorders as a covered benefit.
This bill, SB 770, would mandate coverage of behavioral health treatment, such as Applied Behavioral Analysis (ABA) and other intensive early intervention therapy, for thousands of people with autism spectrum disorders. The bill expands the list of qualified autism providers to include any licensed or nationally certified professional, or any provider of these services approved as a vendor by one of California’s 21 non-profit regional centers which contract with the Department of Developmental Services to provide or coordinate services and supports for individuals with developmental disabilities.
Sponsors of the bill include Autism Speaks, Alliance of California Autism Organizations, Special Needs Network, and The Help Group.
Steinberg is hoping to see SB 770 passed before the Legislature adjourns for their year on September 9th but the bill is expected to face fierce opposition from managed health care plans, who in the past have said that behavioral health treatments for autism should be provided by school districts and the state-funded regional centers. Naturally, both the school districts and regional centers expect for private insurance to pick up the tab. In the middle of this high stakes game of “eeny, meeny, miny, moe” are the parents of children diagnosed with Autism Spectrum Disorders, just trying to get funding for their child.
I have collected my own share of gray hairs dealing with our various health insurance companies, and the situation was much worse when we opted for less expensive HMO coverage (we have since bit the bullet and moved over to the much more expensive PPO coverage). One particularly bizarre situation was when Danny was around 9 years around and developed ataxia, a condition that threw him off balance and stopped him from being able to walk independently. He had outgrown a toddler’s stroller and needed a very expensive bigger type-stroller and the government-funded California Children Services would pay for it completely but only if we got a denial letter from our private insurance company. I have a distinct memory of sitting in my car on roof of the LA Jewish Federation’s parking lot, crying into my cell, “Please, we desperately need you to deny us in writing”.
Although this bill doesn’t address that particular issue, it sends an important message that health insurance companies have to make it easier for families raising children with special needs and developmental disabilities to get the services they need to treat their medical conditions.
It’s clear that our side could use some bigger guns, like SB 770.
August 11, 2011 | 11:25 pm
Posted by Michelle K. Wolf
I have always liked monkeys. As a child, my “lovey” wasn’t a bear or a doll – it was a sock monkey I named “Judy” after the chimpanzee in my favorite TV show, “Daktari”, which was a short-lived television series in the late 1960s about a veterinarian who ran an animal study center in Africa and tried to protect the wild animals from nasty poachers and other bad guys. When we go to the zoo, I always insist on a visit to the chimpanzee enclosure, and love to watch them play and swing around.
So with that said, it isn’t too surprising that I wanted to see the latest Planet of the Apes movie, even if the performance capture special effects were supposedly more complex than the plot. Movieweb.com sums up the plot as” …an origin story in the truest sense of the term. Set in present day San Francisco, the film is a reality-based cautionary tale, a science fiction/science fact blend, where man’s own experiments with genetic engineering lead to the development of intelligence in apes and the onset of a war for supremacy.”
But from my perspective, the movie had a lot to say about the challenges of raising a child (okay, in this case a chimp) with special needs as well as caregiving for an elderly parent. The main character played by James Franco is a biomedical researcher raising an orphaned chimp from infancy and is also taking care of his aging Dad while at the same time trying to find a cure for Alzheimer’s disease (talk about your sandwich generation).
There are a few key scenes that really resonated for me as a parent of a teen with developmental disabilities. One was when young Caesar, the super smart alpha chimp, is looking out of his attic window at the neighborhood kids riding their bikes and having fun, and he stares out at them with such a look of longing and desire. Caesar sneaks out to have some fun too, and is nearly clubbed to death by a nasty neighborhood dad. At another point in the plot, Caesar is trying to figure out his identity with his adopted human family—is he an animal, a pet or a human? Caesar poignantly signs, “ What is Caesar?”
People often ask me what Danny thinks about having disabilities, but due to his limited speech abilities, plus his obsessing on certain subjects, which is currently the “SuperFriends” cartoon boxed set with the “Legion of Doom”, I don’t really know what he thinks about it. Every now and again, however, I do see that same sense of longing and desire to be part of something that he can’t join in. Sure hope he doesn’t start a revolution about it.
August 2, 2011 | 5:36 pm
Posted by Michelle K. Wolf
Our family does many things differently from other families.
This weekend, my husband (who used the money he earned as a Torah reader in his teens to pay for flying lessons), flew the four of us to the Gilroy Garlic Festival and then to Sacramento in a rented 4-seater Cessna182 RG for a weekend of fun in the sun (not to mention all that garlic). Even after 22 years of flying with my husband, I still find myself reciting the Shema under my breath while sitting in what is basically a Mini Cooper with wings, but not Danny. He now loves flying in a “small plane” and craning his neck to see, as he calls it the “view LA” especially at night, when the carpet of lights twinkle from the mountains to the sea.
As I’ve mentioned in other posts, when Danny was younger, he was very challenged with sensory integration disorder The slightest noise—a can opener, an espresso machine, even hearing a shofar blow, would send him into a crying jag. In his first few trips in the small plane, he fussed and yelled and refused to wear the headphones which help to cancel out the very loud engine noise. We weren’t sure he was ever doing to be able to adjust to the sensory issues inherently present in small plane flying. But, then as he worked with an occupational therapist, and we did a “brushing” program with a non-scratching surgical brush and also deep joint compressions, he gradually become more tolerant of all types of sounds. In fact, Danny now seeks out the speakers at a concert, getting in as close as possible.
In preparation for a three-week western states “road trip” in 2005, my husband decided to take Danny a few short trips, just the two of them, so Danny could gradually acclimate to the whole routine, including the pre-flight “run up” in which the engine is tested and is incredibly noisy.
We ended up logging slightly over 21 hours of actual airtime, flying 3,000 miles in total. Our route took us from Southern California to the Grand Canyon in Arizona; Bryce Canyon in Utah; Santa Fe; New Mexico; and then north to Salt Lake City; up to Boise, Idaho; west to Gold Beach on the rugged Oregon coastline and finally to Sacramento for an old-fashioned July 4th complete with fireworks with my sister and her family before coming home to Los Angeles. We had varied experiences at different airports along the way—we landed our plane at small strips in the middle of the Arizona desert with sagebrush tumbling over the runway and at fancy private jet operators where the Cessna was like a broken down 1990 Honda being parked next to a BMW at the Beverly Hilton Hotel.
After that vacation, Danny truly earned his “wings” —in fact we now use the reward of a future trip in small plane to encourage positive behavior. Like I said, we just do things differently.