Since the late 1980s the Jewish conversation — and Jewish funding — has orbited around the goal of Jewish continuity. Whether the cause is Jewish peoplehood, intermarriage, education or even Israel, ensuring our Jewish continuity inevitably grounds the discussion.
But one issue critical to continuity has been missing from the conversation for far too long: supporting our disabled and special needs populations.
With 14 percent of children in North America having special needs and an even larger percentage of people (young and old) living with a disability, hundreds of thousands of Jews in North America and around the world must forego Jewish experiences in order to participate in secular programs — schools, camps, vocational services and more — that meet basic developmental needs.
Even in major Jewish markets, families with disabled children struggle to engage in Jewish life. This summer, international media reported on the Samuels family of New York, who were forced to choose between providing a Jewish education for their daughter Caily, who was born with Down syndrome, and a secular program that would accommodate her special circumstances.
For a people who value fairness, inclusivity and justice, it’s unacceptable that so many of our own are turned away in this manner. We need to tackle Jewish continuity head-on by ensuring that Jews with special needs have a place to live, learn and work within our communities.
First smile, first steps, first word: Parents eagerly await their babies’ milestones and celebrate each one. My family is no different. We celebrated recently when my youngest son, Lewis, got his first tooth.
The celebration was sweeter because, like most of Lewis’s milestones, we’ve had to wait longer for it.
Lewis has Down syndrome. Among the many surprising facts we have learned since his birth is that teething is often delayed in babies with Down syndrome. Lewis’s first tooth didn’t come in until he was 14 months old, eight months later than his older siblings.
Maggie is a 17 year-old girl with Down syndrome, who loves life, adores food, and can’t live without music. She is my daughter, adopted from Brazil at 14-months old. She is very uncommunicative unless she knows you, and is happy to sit without talking for long periods of time. She could eat peanut butter at every meal. She decides what she will and will not do and can out-stubborn most people we know, hands- down, no contest. She loves Mary Poppins, and Hairspray, and Beauty and the Beast, and can sing most of the songs, and knows all the words. She doesn’t go anywhere without her dolly (a dark brown groovy girl), and you can use that dolly to motivate her to do almost anything. She loves to work, though due to limited abilities, there are few things she can do completely on her own. Those things she can do, she does in spades! She sets the table, clears the table, puts all the clean dishes away, carries laundry to each person’s room, puts groceries away, and loves it when we do a whole-house cleaning.
Most people don’t think too much of Maggie, or what they think isn’t too nice. She makes funny sounds. She pulls her pants up after she goes to the toilet (all the way up to her chest, and usually over her shirt, which does look a bit socially unacceptable). She says the same words over and over and over and over. She doesn’t ask about your life, or what you’ve been doing. She is 17, and takes a dolly everywhere she goes.
During the discussion here last week about the challenges of parenting a disabled child (“Is It Harder to Have a Child with Down Syndrome?”), I heard from Stacie Lewis. An American living in London, Lewis has an 18-month-old daughter named May, who has severe brain damage, caused by lack of oxygen at birth.
Lewis has been blogging about May since the baby was 4 months old, at Mama Lewis and the Amazing Adventures of the Half-Brained Baby. Often her readers leave comments praising her courage and patience — the same kind of comments that many (though hardly all) Motherlode readers left on the Down syndrome post.
Those sort of comments tick Lewis off. She is not some kind of hero, she says, just a mother who drew an unexpectedly complicated hand. And, as she writes in a guest post today, sometimes she gets more than cranky about it.
Read more here: A Hero or Just a Parent? – NYTimes.com.
Three months ago, my niece Polly was born. In the short time since, she’s already undergone one extensive surgery to repair two holes in heart. And we’ve now learned that she has one additional opening on her heart that may or may not close without further surgery.
Like one out of every 800 babies born in the U.S., Polly has Down syndrome. But despite the fact that DS is a top genetic issue, perhaps the top genetic issue in the country, funding for it has been consistently reduced. This year, the National Institutes of Health expects to spend just $19 million on Down syndrome research — less than 0.01 percent of its research budget, and less money than it plans to spend studying attention deficit disorder ($73 million), youth violence ($114 million), smallpox ($96 million) and more than 170 other subjects.
We have the power to change this.
Read more here: Kathy Ireland: The Tragic Shortfall in Down Syndrome Research.
AT 1.21am on May 7, 2004, Sofia burst into our world. A few years later, my elder daughter Gabriella asked me: “Was Sofia born with Down syndrome because you had a cracked egg?”
I immediately thought of the tarot card the Ace of Wands in the Mother Peace deck. An egg cracks open and the sun is born. From the centre of the fire a baby leaps with joy, expressing hope for the future. I thought to myself: “Yes, this is how Sofia entered into the world, with love and in strength, the whole family full of hope, looking towards a future with infinite possibilities.”
It was the labour I had always longed for, completely natural with no medical intervention, just a family with its midwives, giving birth in a homely environment. When you are lucky enough for this to occur it is a great blessing and an incredibly empowering experience.
Read more here: Little Sofia’s journey of the heart.
Parents of children with severe disabilities have many challenges and concerns. One big worry is who will care for their children after the parents are gone.
Al Etmanski is a veteran community activist, and after his daughter Liz was born with Down syndrome, he turned his attention to the needs of those with disabilities and their families. Etmanski was feeling pretty good about the work he was doing in Vancouver, British Columbia, until he was approached by three men at a party. All were in their 70s and had children with disabilities.
Etmanski says the men told him they were pleased with his work helping younger parents. But they asked: “What about us?”
Etmanski wasn’t sure precisely what they meant.
The men told him their adult children were OK now, but they were worried about what would happen to their children in the future. Existing programs and services wouldn’t keep their children safe, they said.
Read more and listen to the story here: Finding Support For Children With Disabilities : NPR.
As a mother, you send your children off to their first day of kindergarten with pride, anticipation and excitement. But a part of you can’t shake those nagging questions: Will they make friends? Have someone to play with at recess? Be bullied?
As director of PACER’s National Center for Bullying Prevention, and the mother of a child with Down syndrome, those questions don’t just go away with time. And that worry only intensifies.
Read more here: Activist inspired by Down syndrome son – CNN.com.