Caring for Each Other, Across All Spectrums.

Why is the Grass Always Greener? Supporting Every Individual and Family.
By: Beth Steinberg

I wanted a Huckapoo brand shirt. It was the 1970’s, when those multi-patterned and brightly-colored shirts were the rage. They were expensive. My father was a congregational rabbi with four children, all enrolled in Jewish day-schools, and my mother was a stay-at-home parent. Huckapoo shirts just weren’t in the budget.

An example of a Huckapoo shirt from http://www.vintagetrends.com/

An example of a Huckapoo shirt from http://www.vintagetrends.com/

“If I just had one Huckapoo,” I reasoned with my mother, “everything would just be better.”

It was 7th grade and I had just switched schools, travelling 30 minutes to not just a different neighborhood but a more sophisticated zip code. On the first day, when I looked around the schoolyard and compared myself to the other girls, I knew I had some catching up to do.

Fitting in, I soon discovered was going to be complex. My father was a Conservative Rabbi and I was a commuter from a different geographical area relative to the school’s location.

Easy acceptance into the right group was not going to be bought with one shirt, although I never stopped hoping.

The Huckapoo shirt story popped into my head on a recent visit to my health provider’s main office in downtown Jerusalem. My husband and I were reviewing a payment for an emergency ambulance ride with our youngest son some time ago. While assessing our paperwork, the person helping us noted Akiva’s diagnosis, Down syndrome, and said “he’s not in the system.”

That has to be one of my favorite lines as parent to Akiva. “He’s not in the system.” Seriously?

Akiva is almost 17; he’s enrolled in a special education school, receives a stipend from the National Insurance Institute based on his disability and is recognized through the Ministry of Welfare as receiving services.

Incredulous, we had her check. Nope. Not listed as having Down syndrome. I mentioned that he actually has a dual diagnosis of Down syndrome and PDD – NOS, on the Autism spectrum.

“Oh,” she said, with an exultant tone. “You know, if he has Autism, he’s eligible for many more services than if he just has Down syndrome.”

Just has Down syndrome! Another moment of incredulity.

She then proceeded to show us the expansive list of what he could receive with the “right” diagnosis.

In 2014, Autism is that brand-name shirt, that Huckapoo that I never got. The diagnosis that insures you the proper cachet and instant acceptance into the right group, a clique filled with families, children, teens and adults with ASD, or Autism Spectrum Disorder.

And while they may wish their child didn’t have said diagnosis, they tend to group together, with those who are dealing only with their issues. That’s normal, of course. It’s vitally important to chat with parents experiencing similar things, but really, are we living such different lives?

Is developmental delay or cerebral palsy or whatever your kids’ diagnosis is, so scary that you can’t open your heart up to another parent walking a path not so different from yours? I don’t think so. It’s fear, just like the fear felt by those who haven’t dealt with disability at all.

Life with Akiva has meant that I have new understanding for anyone dealing with a challenge, whether it’s a cancer diagnosis or a broken leg. I get that they are navigating something new, something scary, something that pulls at their understanding of life as they know it.

But the cliquishness that develops in the world of disability just depresses me. Seems like something’s getting lost in the shuffle when we get “sorted” by disability, when we get “injected, inspected, detected, infected, neglected” as Arlo Guthrie put it in his famous song, Alice’s Restaurant. When we, those parents and family advocates, feel we only have the interest and strength for our own problem, as opposed to learning to care about the needs of the whole community of people with disabilities.

And I completely respect those families who’ve advocated for their children with Autism, who’ve fought for better services and won. That’s great! But the division of children, of teens, and of adults into labels – each one tossed it’s bone of assorted services and programs – creates division where it could create unity and empathy for shared experiences.

We need to work together, to join forces, in support of each other, in appreciation of each other’s challenges, of our children’s issues – regardless of perceived functioning differences, regardless of our own personal fears and presumptions. That’s how we’ll build an inclusive community. Together.

Accepting Grace: The Choice of Prenatal Testing

Originally posted as “Prenatal Testing: Making the Right Choice” in the online edition of Charisma Magazine on June 18, 2013.

Acceptance. Finding grace. Being chosen. In the Old Testament, we are given many examples of ordinary people coping with extraordinary decisions both ethical and moral.

Sometimes they stumble, such as Moses hitting the rock instead of speaking to it at Meribah, or the children of Israel’s Korach-led rebellion in the book of Numbers. Sometimes they are challenged, as in the story of Abraham’s attempted sacrifice of his son, Isaac, or Esther the Jewess becoming wife to Persia’s King Ahasuerus.

Making choices is what life is about, along with gratitude for G-d’s gifts, even the seemingly hard-to-understand ones. When my youngest son, Akiva, who has Down syndrome and autism, was born almost 16 years ago, many people asked me, “Didn’t you know?” or “Didn’t you test?”

I was 34, almost 35, when I became pregnant for the third time. We lived in Brooklyn, N.Y., in a young, upwardly mobile neighborhood with liberal values and a penchant for Mexican food. Our friends and egalitarian-minded Jewish community were made up of lawyers, doctors and other professionals. Disability was present in the greater community, but there were few, if any, children with Down syndrome. Akiva, who was born at home, was and is a chosen and loved child, despite the surprise of his diagnosis.

In the years since his birth, I’ve discovered that for many, choosing not to test for genetic disorders is simply considered irresponsible. Today, prenatal testing is described as safer than ever, and it can determine many genetic aberrations in addition to Down syndrome. Once you’ve tested and discovered an issue, the most sensible and advised course of action, in my world, is to abort the defective fetus. If you don’t test or choose not to abort, you represent a population that is assumed to be, in the words of a Jerusalem-based writer, “traditional or very observant … couples who refuse to have an abortion … [and] prefer to raise a less-than-perfect child.”

Wow. A less-than-perfect-child. Is that the child who goes out drinking in his teens, crashes up the car and flunks out of school? Or is that the child diagnosed at three with autism, learning disabilities or the new epidemic of our time, depression?

Or worse, is it the child who breaks the law and ends up in jail, lost to his family, perhaps forever? It’s a strange and offensive assumption to make, that parents of children with Down syndrome, a seemingly preventable disability—and let’s stretch that to children with other disabilities as well—prefer our children, imperfect as they may be. And how simplistic is it to presume that a person who lives a religion-based life finds it any easier to accept difference than their secular peers, a sort of “Punish me, I deserve this hardship because of my religious commitment”?

As for preferring a less-than-perfect child, to what, I ask? To their typical brethren? When did we lose sight of the ethical and moral issues here, that these are children who were, certainly in our case, planned and desired additions to a family?

Having come to maturity during the age of a woman’s right to choose, most of my circle considers it their absolute right to choose pregnancy and not have it chosen for them. They chose to become pregnant, and unless that choice led to infertility and its corresponding difficulties, they became pregnant. Once pregnant, they set out to have the perfect pregnancy, complete with appropriate exercise classes, stylish maternity outfits and a skilled practitioner who would deliver said healthy baby at the best hospital when the time came. They wanted their babies, those perfect babies, the ones with the number 10 apgar scores at birth, what they believed was their right to receive.

I won’t deny the at times painful facts of parenting my son. He’s chronologically 15 but operates at a much younger level. He sat up unassisted at 22 months, walked at six and requires assistance for most of his basic needs. He also has an excellent sense of humor, a real knack for languages and an almost encyclopedic knowledge of musical theater, much like our eldest son.

Accepting the birth of or later diagnosis of a child with a disability is a moment of reckoning—for the child, for the parents, for the family, friends and extended community. For many, what initially feels like tragedy gradually becomes normal. Discovering that you are capable of loving, caring and accepting difference has a way of changing you for the better. While there are families who are divided by disability, there are families who are united, learning to support each other through challenge and relishing those special and sometimes long-awaited moments of success.

It’s funny. While I reject the notion that we as a family were chosen “to bear this burden,” or that “it was G-d’s will,” and I hated when people said things like, “Akiva couldn’t have been born into a better family,” I recognized that there was a part of me that did feel that we had been uniquely prepared for this mission, perhaps because of our lifestyle as a homeschooling family or because of our supportive religious community or maybe because Akiva was our third boy—we knew how to do this. We chose not to test. We didn’t play Russian Roulette; we had a baby.