The Problem of Summer Holidays and Working Parents

by: Alisa Fox Coleman, Director of Organizational Advocacy

It’s nearly the end of June. It’s the time that panicked parents ask themselves, “what am I going to do with my kid for the next two months?”

My youngest son is 10, he is the first of my four kids to go through the long and hot, two-month summer holidays while both of his parents are working full-time. We feel sorry for ourselves as parents, having to juggle child-care, and find answers to the problem of the summer. Most of us parents get 14-18 days of holiday each year. Summer holiday is 45 days – these are just  logistics but does anyone think about the summer from our kids point of view?

Going to school is tough, and I am not just talking about the academics. Peer pressure and teacher expectations are an ongoing challenge during the course of the year.

Holidays should not be about any of that.

Holidays are for fun and relaxation – all those adjectives we would use for taking a break from the conscious and subconscious struggles of the school environment. At least, that’s what I think holidays should be.

Holidays are also  a time for informal education. They’re for a different kind of educational experience – of equal importance to every child as the school year is. As a child and teen I remember waiting until my next camp experience. I made so many good friends at camp. I learnt about myself, and how to live and work in a group setting, first as a camper and then as a counsellor. If I could go back to camp tomorrow , I would.

Camp Shutaf Is an oasis of calm amongst the storm of yearly peer interactions . Quality counsellors, and a relaxed family-style environment with fun, low-tech camp activities.

Every child is treated as an individual with their own preferences, abilities, and moods.

When a child walks in to camp in the morning, whatever mood they may be in they will be greeted by counsellors who care,  staff who want them to be happy and have fun.

Sounds obvious, but as we all know as parents, camp is often like a factory – rushing kids on and off buses, and from activity to activity. Often, kids don’t feel good about themselves if there is an activity in which they are forced to take part. Or, it is run by counsellors who are young, and without the proper tools to deal holistically with the kids in their care.

On my vacation, I personally do not want to be forced to do anything that I don’t want to do!

So what is different about Camp Shutaf? Shutaf Inclusion Programs in Jerusalem offers inclusion day camps three times  a year during longer school holidays, for children with and without disabilities. Camp Shutaf’s biggest program is August camp. This summer, 135 participants, ages 6-23, will enjoy 3 fabulous weeks of day camp in Jerusalem.

Shutaf’s innovative, reverse-inclusion model combines a majority group of participants with varied developmental challenges (75%) with a smaller group of participants (25%) without disabilities.

How does this work you may ask?

Firstly, there is a long waiting list for the campers without disabilities.Shutaf’s inclusion ethos, professional program planning and staff training ensures an excellent program in an uniquely, accepting environment .The camp provides quality, personal attention , an inclusive and accepting atmosphere all of which you can only describe when you have seen it in action.

The counsellors listen to the needs of all the kids in their charge. Every kid has good days and bad days or days when they arrive at camp not in the mood.The difference is that their counsellors will listen and be patient and do their best to accommodate and be there for them.

When you do not label kids special things happen. All the kids are looked at as individuals with their own feelings and needs.

The counsellors are not told before who has the disability, they work on dealing with each kid in their charge individually.

Many professionals in the field of disability  have gone to visit Shutaf over the years, and they all admit that it is difficult to tell which are the kids with disabilities and which are without .

When you focus on kids having fun with an emphasis on peer- communication , everyone wins.

Honestly, I wish I could spend my vacation, doing fun activities in a chilled fun environment where people care about me.

Wouldn’t you?

I’m sure all of our kids would.

Alisa

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.