Posted by Michelle K. Wolf
As Americans, we tend to think to think that in general, our social service programs are the very best in the world, and that everyone else can learn from us. When it comes to special needs, at least for Jewish children and adults, there is much we can learn from Israel.
When our family was in Israel last spring, we visited two very different special needs programs in Israel that were simply amazing: Beit Issie Shapiro and Kibbutz Kishorit.
The first organization we went to was Beit Issie Shapiro in Ra’anana., a comprehensive special needs center and national program started by a South African family in honor of their father, Issie Shapiro, whose life mission was to create compassionate, progressive programs for those with special needs. We drove into the parking lot of the main campus a few days before Passover and were impressed right away with the outside playground being used at that moment by a group of Israeli Arab mothers and their children with disabilities.
During our tour, we saw the therapeutic swimming pool in use as a training class in hydrotherapy for physical therapists from throughout Israel, early intervention classrooms very similar to what Danny had attended at age 3 or 4 (down to the same Picture Cards used to let the children know what activity was next), more outdoor play areas, and then the highlight of the tour, the Snoezelen Room. These very cool rooms contain beanbag chairs, a ball pit, low lighting, and special effects through special lights, vibroacoustic stimuli and deep sensory stimulation. It is both intriguing and relaxing at the same time. We had a very tough time dislodging Danny from the vibrating, singing beanbag chair.
Beit Issie Shapiro introduced the Snoezelen concept to Israel (developed in the Netherlands in the 1970s), and has helped set up some 350 Snoezelen rooms in Israel and more than 1,300 professionals have been trained, which means almost as many Israelis have access to a Snoezelen room as they do to cell phones. In case you are wondering, the word comes from two Dutch words, “snuffelen” (to seek out, to explore) and “doezelen” (to doze, to snooze).
We avoided the on-site dental clinic, since Danny, like many children and adults with special needs, is hypersensitive regarding anything involving his lips and teeth, and he can spot a dental chair from across a football field. Our visits to the dentist with Danny here in Los Angeles are usually drama-packed, with howling, screaming, and kicking. The Beit Issie staff told us that they use the Snoezelen Room techniques to reduce anxiety levels of children with developmental disabilities and conducted a formal study to prove that the “duration of anxious behavior dropped from 23.44 minutes to 9.04 minutes” on average. (I don’t think I would have liked to been the person holding the stop watch for that study.)
In addition to a therapeutic day care (up to age 12) and after school treatments, Beit Issie is working hard to create accepting and involved communities , advocacy programs and they are working in partnership with others to improve the legal rights for those with disabilities. They provide family support with special outreach to fathers, grandparents and siblings. And they created the first accessible and inclusive park in Israel and as we saw, also work with Israeli Arabs who have children with disabilities. The list just goes on and on.
Now, if we could only find that vibrating, musical beanbag chair……
Beit Issie Shapiro is holding their 5th International Conference this summer on the topic of “Learning from the Past Shaping the Future “Tel Aviv, Israel, 5-7 July, 2011, Dan Panorama Hotel. For more information, go to http://www.comtecmed.com/beitissie/2011/program.aspx
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. . .
12.5.13 at 8:56 pm | The first national Leadership Institute on. . . (14)
4.21.11 at 11:23 pm | In the search for a "home" for our young adults. . . (12)
9.29.13 at 11:39 pm | A new policy is making a lot of people go from. . . (8)
March 30, 2011 | 10:35 pm
Posted by Michelle K. Wolf
“Everyone came here tonight for a reason,” said Dr. Michael Held,
Founder and Executive Director of the Jewish special needs non-profit
Etta Israel, “whether you are a parent, a potential resident, or a
sibling or other relative of a Jewish adult with developmental
disabilities.” The 70 participants, some wearing head coverings and
many not, looked around the room exchanging knowing glances, a
collective sense that we are all on the same quest to find a “home”
for our loved ones with special needs when it is time for them to
leave the nest.
A new innovative independent housing program called J-CHAI was
launched by the Etta Israel Center Tuesday night in the boardroom of the Los Angeles Jewish
Federation, funded in part by a $200,000 three-year Cutting Edge grant from the
Jewish Community Foundation of Los Angeles.
Dr. Held explained that this new housing model was based on four years
of research and discussion (including input from the Federation’s Task Force
on Housing for Jews with Special Needs) ,and took into account many current trends.
First of all, more adults with developmental disabilities and their
families are seeking a higher level of independence than afforded in
traditional group home settings (Etta Israel also operates 3 Jewish
group homes in North Hollywood and a fourth is in the works). This
desire for greater autonomy is accompanied by the fiscal realities of
California –- more people are now diagnosed with developmental
disabilities- and the average costs of each client is increasing as more
of the state caseload reaches adulthood along with the mounting
So what exactly is J-CHAI?
It probably helps to begin with what it is not. It is not a building.
It is not a kibbutz-style arrangement. And it will not be the same for
J-CHAI will help families find regular market-value apartments
clustered in the Pico-Robertson area, as well as finding an
appropriate roommate, and then with its staff, establish both
independent living and Jewish life goals for each resident. As Dr.
Held joked, “J-CHAI keeps the ‘J” in your child’s Chai (life).” For
the first time in their lives for many of these Jewish adults,
targeted at ages 18-35 (and older, on a case-by-case basis),
They will have the ability to exercise control
over their lives in such areas as community, communication,
empowerment/independence and Jewish values.
Each participant’s schedule will be individualized, with most
residents either engaging in vocational training, educational
opportunities or working, depending on their abilities and skills.
Through the state-funded Regional Centers, many will receive ILS
(Individual Living Skills) or SLS (Supported Living Skills) in such
areas as money management or travel training. Those with more
significant behavioral or physical challenges may get IHSS hours (In
Home Supportive Services) funded by the state, provided the program is
With this innovation and higher level of independence come costs.
Families will have out of pocket costs –the costs of rent (shared by a
roommate), a sliding scale J-CHAI fee of $1,200-$2000 month, and
everyday costs of food, utilities, etc. Government funding such as SSI
(Social Security Income) can help defray some of the costs. The
estimated range is $2,300-3,600 a month, with the hope of attracting
other funders down the line.
The program is designed to provide ongoing support, year after year,
All participants are asked to commit for a minimum of one year to be
accepted into the program; this commitment will help create with the central goal of building
a strong sense of community among the residents.
One of the parents who spoke during the presentation said that her
son, now 30 years old, lives in one of the Etta group homes and lives
a “full and wonderful life”. Most of all, she said, she is filled with
gratitude and peace of mind.
Isn’t that what every parent wants for their grown children?
For more information/applications, go to www.etta.org or send an email
March 22, 2011 | 10:50 pm
Posted by Michelle K. Wolf
Last year, we spent most of April (including Passover) in Israel since our oldest daughter was spending her “gap” year there between high school and college. She was enrolled in an intensive Israeli leadership preparatory program called “Nachshon” named after the Biblical hero who was the first Israelite to jump into the Red Sea. Legend has it that the Red Sea didn’t actually part until Nachshon was up to his nose in the water.
Traveling 7,500 miles away across ten zones is tough on anyone, but Danny did pretty well on the trip over, excited about seeing his big sister, and for some inexplicable reason, really enjoyed the hot kosher meals served on the plane. During our flight from Philadelphia to Tel Aviv, we met another family who was also traveling with a physically disabled child; they had other grown children (and grandchildren) living in Israel so they made the sojourn at least twice a year. They gave us a few tips about which bathrooms on the plane were the most accessible, the procedures for departing the plane with a wheelchair at Ben Gurion Airport and what to watch out for when using our California disabled placard, (some of the disabled spots in Israel are reserved for specific people/placard holders, but it can be hard to tell).
We had a joyful reunion in the airport in the afternoon and then got our rental car—we held our breath that all of our luggage and Danny’s large stroller and walker would fit in the economy-sized car we had pre-ordered on the Internet, but luckily, we were upgraded and the trunk accommodated everything. Long after dark, we arrived at our Jerusalem apartment on the 6th floor (with a very small and very slow elevator) and settled into our temporary home.
The first place we went to visit was Hebrew University - Mt. Scopus campus to get that magnificent view of all of Jerusalem, and we stopped for a snack at the local Aroma coffee shop (think of a kosher trendy Starbucks with a much bigger menu). It was difficult to get Danny up the narrow front steps, so I wheeled him around to a side door which was heavy and hard to open. The place was crowded, with tables close together, and hard to navigate even with the walker, and we finally were able to sit down.
An employee with Down Syndrome came around to pick up the dirty dishes from the people before us. Some of the patrons stared at her, and also at Danny, but then an older, professorial-looking woman entered and started to chat with the young woman, asking her about Passover plans and then said “Chag Sameach” to her (and to us on the way out).
(I later found out from the non-profit Eleywn Israel http://www.israelelwyn.org.il/ that they work closely with Aroma coffee shops to train and place workers with disabilities and that Aroma has a longstanding policy of hiring workers with disabilities and in fact, almost every Aroma restaurant in Israel has at least one such employee.)
This theme of stark differences between the positive and negative aspects of disability continued during our trip. At times we would find a great disabled parking spot, but with no curb cuts. Or, in crowded malls and venues, people without a disabled placard would pull into the space ahead of us. When we complained to the security guard standing just a few feet away, he would mumble, “I can’t do anything about it”.
On the other hand, some people took great pains to include us, including a lovely modern Orthodox family who we met in the neighborhood shul. They invited us over for a lavish last night dinner of Passover, with four courses, Torah study, and a look at the husband’s photos from his post-army trip to the states many years earlier. They were fine with Danny playing with toys on the sofa, or even rolling around on the floor as the evening grew late.
One of the more interesting incidents took place a few days into the Passover holiday when the elevator in the apartment building broke down and the key part to fix it wasn’t going to be available until “after the holiday”. There were many families with young children in strollers, so this was a hardship for many of renters. But when people saw us coaxing Danny up and down 6 flights of stairs with his walker (and he managed to do it, even if it took even longer than the slow elevator), they grew furious with the apartment management, and our situation became the key point of protest. Many renters personally apologized to us for the inconvenience.
Next: Our visits to Beit Issie Shapiro and Kibbutz Kishorit
Note: A sad farewell to Kenneth Schaefler, a friend, role model and colleague who devoted his professional career at the Los Angeles BJE to make Jewish education available to students with diverse learning needs. He championed disabilities awareness, special education services at Jewish day schools and worked with state-funded regional centers for early detection and intervention as well as professional development for teachers. May his memory be a blessing.
March 18, 2011 | 11:39 am
Posted by Michelle K. Wolf
In Joan Didion’s powerful memoir “
The Year of Magical Thinking
” detailing her grief process after losing her husband, Gregory Dunne, she talks about a seeing their family doctor who is also a good friend. He asks her how she is and just hearing the question prompts a shower of tears. “I just can’t see the upside in this,” is how she finally answers the doctor.
Although by no means an equivalent situation, that quote pretty much sums up the situation now faced by children, teens and adults with development disabilities in the State of California.
In a week filled with images of the Japanese earthquake, tsunami and nuclear disaster, ongoing fighting in Libya and the savage murder of the Fogel family in Israel, you may have missed the news report that the State Legislature approved over $6 billion in cuts to health and human services in California. Just as a reminder, here’s what six billion looks like: $ 6,000,000,000.
For persons with disabilities who are low-income and have complex conditions, these cuts will impact every aspect of their lives, from the reduced hours of in-home help with the most basic tasks of everyday living such as toileting and eating to capping the costs of hearing aids for Medi-Cal adult recipients to $1,510 a year, which in most cases will only pay for one very basic hearing aid that isn’t suitable for many adults with special needs.
In addition, Medi-Cal providers are getting a 10% permanent cut on top of previous cuts, which means that fewer doctors and clinics will even agree to see Medi-Cal patients. And public school budgets including special education, are also taking a huge hit, with more pink slips coming soon.
Direct cuts to persons with disabilities are coming by way of “service standards” which sound good but really means rigid rules that limit “the type, scope, amount, duration, location, and intensity of services and support purchased by regional centers for consumers and their families. The “standards” could even “prohibit the purchase of specified services”—whether the consumer needs them or not.
Yes, I understand that our state budget is in shambles and there’s not enough money to go around no matter how much we beat our chests and picket the State Capitol, but I’m not seeing any creative solutions to covering this gap either. How about having all the financial institutions in California that got federal stimulus funding to provide no-interest loans to social service providers and school districts? Or having the top 50 foundations and wealthy individuals give away an extra percentage point or two of their investment dividends to close some of the gaps? Working together in new ways to help the most vulnerable among us could actually be an upside.
For more information about the state cuts to persons with developmental disabilities, go to Keep the Lanterman Promise at http://keepingthelantermanpromise.net/ and Advocacy Without Borders: The California Disability Community Action Network at http://www.cdcan.us/
March 14, 2011 | 12:19 am
Posted by Michelle K. Wolf
“Hava narishah - rash, rash, rash (Wind your noisemakers - rash rash rash)”
—Chag Purim song lyrics
The chance to scream “boo” at each mention of the arch-enemy Haman during the Megillah (scroll) reading of Purim is a pretty fun experience for most Jewish children.
Purim, which this year falls on March 20th, is one of the more festive Jewish holidays that celebrates the deliverance of the Jews from their enemies in the biblical Book of Esther. Purim encourages kids (and adults) to dress up in costume, have a few drinks (for adults) and in general, to cut loose and act a little crazy.
Sounds like a good holiday for Jewish children and teens with special needs, right?
The problem is many children with special needs, especially those on the autism spectrum, also have sensory integration issues. Simply put, this means that their bodies respond to sensory input differently than typically developing children. For someone with severe sensory issues, many everyday sounds, such as an electronic can opener or a squeaky shopping cart, can be perceived like nails dragging on a chalkboard.
Imagine then, what that cacophony of groggers, screams and yells in response to the 54 mentions of “Haman” can feel like to someone with sensory integration issues?
When Danny was younger, he would start screaming and crying at the very first mention of “Haman”; he would become completely inconsolable. We learned to take him out in the hall, or into a nearby room where he could still hear the excitement, but the sound was highly buffered. This was challenging when his big sister was participating in the costume parade for young kids and wanted to stay in the sanctuary for the megillah reading.
With the help of different sensory integration interventions, which included deep pressure “brushing” through the use of a special brush followed by gentle compressions to the shoulders and elbows, Danny was eventually able to tolerate louder and louder noises. In fact, now he likes to stand as close to the speakers as possible whenever amplified music is played. At age 16, he is also now able to sit through an entire megillah reading and will even ask for “more” when the reading is completed.
But what about all those kids who can’t handle a typical synagogue megillah reading (one local shul boasts of holding the “world’s noisiest megillah reading” but asks that families refrain from bringing ”cap guns or explosives”. If hearing the megillah read is considered a important mitzvah, how can all our kids participate?
In Los Angeles, Rabbi Jackie Redner & the Nes Gadol (Great Miracle) Program at Vista Del Mar held their first annual sensory-friendly pre-Purim celebration on Sunday that featured a retelling of the Purim story without any noisemakers (just “jazz hands”). This is a low-cost easy-to-implement idea that I hope many other synagogues, community centers and other Jewish organizations will start to offer in the coming years.
One of the lesser known traditions of Purim is to give either food or money to the needy, “matanot la’evyonim,” and as part of that tradition, we are supposed to give a small
donation to whoever asks without first asking to check the person’s bank statement. (My Dad has fond memories of going door-to-door on the Lower East Side in New York and saying a few Yiddish lines in verse which resulted in a sizable amount of cash by the end of the day).
In the spirit of “matanot la’evyonim” let’s make it a communal goal that sensory-friendly Purim celebrations be created in all Jewish communities so that every child will have the opportunity to hear the Purim megillah. It’s a small donation that will yield many gifts in the years to come.
March 8, 2011 | 7:58 pm
Posted by Michelle K. Wolf
Ben Azzazi taught: “Do not disdain any person. Do not underrate the importance of anything – for there is no person who does not have his hours, and there is no thing without its place in the sun” —Pirkei Avot
The word “inclusion” in a special needs context can mean many different things – for example, it can mean a physically accessible environment with ramps and elevators, which is very important to those with physical disabilities if they want to be able to literally come through the front door. It can mean having large print siddurim for persons with vision-impairments or having access to assistive learning devices for those who are hard of hearing or deaf. For children and adults who have behavioral challenges, it can mean being more tolerant of strange noises or gestures.
However, for most people with special needs and disabilities, the word “inclusion” is far broader. To quote my friend and mentor Shelly Christenson from Minneapolis and the author of
The Jewish Community Guide to Inclusion of People with Disabilities
“Inclusion is the opportunity for people of any and all abilities to participate in meaningful ways within their community. The key word is meaningful.”
Throughout Jewish communities in North America (and in Israel too), there are certainly more programs and services than ever before to include Jews with special needs (and their families), but all too often the efforts are fragmented, under-funded, and kept segregated from the “regular” programming for lack of a better word. Real inclusion goes much deeper than a special program; to be truly successful, inclusion must permeate every aspect of the institution.
For me, it is all about having a warm heart and an open mind.
Our 16-year-old son, Danny has multiple disabilities including cerebral palsy, and loves going to our synagogue, Beth Am, every Saturday morning. Is it because of the lovely special needs service called Koleinu (“Our Voices”) which takes place every two weeks with a gifted and trained Jewish educator? Is it the chocolate doughnuts served at the kids services? Or is it the security guard I will call Mr. M?
Mr. M is not a special education teacher. He is not a rabbi. He’s not even Jewish. But he knows how to light up Danny’s face by saying, “Shabbat Shalom Danny Wolf—give me a high five” and then doing a fist bump (or two, or three…). It’s a completely natural and welcoming impulse on the part of a synagogue employee whose job description most certainly does not state that his position will be in charge of “providing special needs inclusion”.
Danny will go out of his way with his walker to find Mr. M, whether his station that morning is in the front of the synagogue, under a tree or in the parking lot, and believe me, Danny will do almost anything to get out of extra walking.
Overall the number of people with disabilities is around 20% and with the number of children diagnosed with Autism Spectrum Disorder still on the rise (the most recent CDC report states that 1 in every 110 children has been diagnosed with autism, including 1 in 70 boys), there is no question that the Jewish community has no choice but to be more inclusive of this growing population. The big question is how.
Mr. M. has shown us the way.
March 4, 2011 | 8:00 am
Posted by Michelle K. Wolf
Once Danny was enrolled in a government-funded special needs class at age 3, we sought out Jewish programs and services that would meet his needs. My husband and I both had strong (very different) Jewish backgrounds and enjoyed cherished Jewish camp and travel experiences as teens.
My husband’s parents were leaders of their Conservative synagogue in the Philadelphia suburbs; he went to Camp Ramah, USY Israel Pilgrimage and USY Eastern European Pilgrimage in the 70s near the height of the Cold War (a good story for a different blog…).
My parents were Labor Zionists, married in Israel in 1949, and a founding family of a Reform synagogue in North Orange County. I went to many different Jewish summer camps and a summer trip to Israel with BBYO (B’nai B’rith Youth).
At age 6, our daughter is at a public elementary school and goes to a Hebrew-speaking after-school program run by the Israeli Scouts. Our house is kosher and Israeli kid songs fill the air. It is inconceivable for Danny not to receive a Jewish/Hebrew education.
But the after-school religious school program at our shul doesn’t start until age 5, so for Danny we have to look elsewhere. After much asking around, we finally discover the Shaare Tikvah Hebrew School for Developmentally Disabled students, ages 3-18 at Valley Beth Shalom, fifteen miles from our house.
The program is once a week on Sunday mornings. Danny is enrolled and we drive him there on Sunday mornings (traffic usually moving at good clip) and we figure out how to work in a workout at the gym. We are glad that VBS doesn’t require temple membership to participate. Danny learns Hebrew words, songs, and Jewish holidays and generally has a good time. As parents, we begin, for the first time, to meet other Jewish parents in the same situation.
We attend the Bar Mitzvah of a cousin on the east coast and my father-in-law says, “Just think, Danny will be Bar Mitzvah ten years from now”. I remember wondering at the time if he would have a Bar Mitzvah at all. (He did at age 14).
I stop going to Tot Shabbat programs with Danny at our shul for awhile – it’s just too painful to watch his same-age peers talking, dancing and interacting while Danny is either rolling around on the carpet or whining.
Years fly by, and we keep going to Shaare Tikvah on Sunday mornings. By the time Danny is 10, there are a lot of new Jewish special needs programs such as Friendship Circle Los Angeles and the Camp Ramah Special Needs Family Shabbatons..
Our friend Elaine Hall, whom we meet through our daughter’s drama program, has started The Miracle Project, a theater program for kids with special needs and their typically developing siblings and peers (all beautifully documented in her book, Now I See the Moon) . Turns out Danny is a (kosher) ham He learns to respond to the Director’s cues and says his parts right on time.
That summer, we really feel the need for a break and decide to send Danny to an overnight summer camp for a week. After much research, we find that the only viable option is a community non-profit serving children and adults with disabilities called Ability First, which at the time operates a beautiful camp in Malibu with beachfront views and a swimming pool.
All of the staff is hand-picked and well-trained. They can handle kids in wheelchairs and those who have behavioral issues. We don’t have to pay for an aide, as we later do at most Jewish settings.
We bring Danny up to camp along with kosher hotdogs, boxes of his nutritional supplements and many medications that we give to the two full-time nurses. After a quiet, relaxing week, we drive back to camp and hear that loved the singing and the campfires but got homesick at night. His counselor, Scotty, gives him a goodbye hug and hands us a scrapbook. Driving home along that slender ribbon of Pacific Coast Highway, I read aloud what Scotty has written in the scrapbook: “Danny, it was great having you in the bunk. Yours in Christ, Scotty”
Coming next: What does “inclusion” mean and why it needs to happen more in the Jewish community
March 1, 2011 | 5:41 pm
Posted by Michelle K. Wolf
When I was in a public elementary school in the late 1960’s, one of my friends had a younger sister with Down’s Syndrome. She attended the same school but was in separate, self-contained classroom that we had no contact with except at lunchtime and recess. No one explained to us why she was so “weird”, as we said at the time. Most of my friends avoided having any contact with her whatsoever, and a few nasty kids would call her “retard”. I have to confess that I also found her strange, and was completely embarrassed to be seen talking to her, even for just a few minutes at lunchtime.
Flash forward to 1994, when our second child, a boy is born at Cedars-Sinai. The pregnancy is full-term; the delivery on Thanksgiving Day is long but not exceptional. Daniel Reuben Wolf weighs in at 7 lbs, 12 0z and is 19 inches long. His bris is held on schedule at our home, surrounded by friends, family, and many Jewish nursery school classmates of his big sister, Rachel. We adjust to having two children and getting by on a few hours of sleep and a lot of caffeine.
And then at two months, Danny gets a bad cold which moves quickly, very scary, into a high fever, a bad cough, trouble breathing…RSV pneumonia. He ends up staying five long nights in the Pediatric ICU at UCLA Hospital, hooked up to electronic leads, a pulse oxygen monitor on his tiny forefinger. I spend the day of Shabbat with Danny while my husband and daughter are saying the mishaberach (healing) prayer for him at shul. The chief resident of the floor is a young male doctor wearing a kippah who reassures me, saying that lots of babies have RSV and make a full recovery.
We take Danny home and notice that he’s not moving around much but during his well baby visits to the pediatricians, they tell us, “every baby develops at his or her own pace.” Then, at six months, both he and his big sister come down the chicken pox, and nothing is ever the same. At ten months, he’s not crawling, only saying vowels and not able to hold a bottle. My mother babysits him for a few hours, and tells me, “Honey, something just isn’t right”. Boom. Suddenly, we find ourselves smack in the land of special needs.
A montage of those early years – a blur of appointments and assessments with doctors and therapists, checking out every book on developmental disabilities at the Beverly Hills Library, whispered worries at night after the kids are tucked in. One prominent neurologist says Danny just needs a little occupational and physical therapy and that by age 2, he will have caught up. Various diagnoses are discussed, discarded. He is ultimately given a diagnosis of cerebral palsy/developmental delay, which the specialists find much too vague, but nothing else sticks.
Age 2 comes and goes without much progress. The word gets out among our friends in the Jewish community. People try to be comforting, to focus on the “catching up” aspect. A few friends who have been down this road give us pointers and a copy of “Welcome to Holland” by Emily Perl Kingsely, a poem which compares having a child with disabilities to planning a long-anticipated trip to Italy but inexplicitly ending up in Holland. The piece, which moved me to tears the first time I read it, ends with advice to accept your new reality because “if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland.” Okay, I say to myself, we will focus on the “tulips” of special needs and not worry about missing out on the gondolas in Venice. (Aside: by the fifth time I receive “Welcome to Holland” I am ready to throw up).
We redouble our efforts with more therapies, join list serves of parents, and spend hours working with Danny to teach him the most basic of movements, and sounds. As the months and years pass, it becomes clear to everyone that Danny is stuck in Holland. By this time, most of our friends have enrolled their second or third child in Jewish day schools. It dawns on me that during my entire graduate school education as a Jewish communal service professional, we never once discussed special needs or developmental disabilities.
Another second journey seeking out Jewish special needs programs and services has begun….