Valuing Differences. Guest Blog by: Jenn Smith

Jenn interned at Shutaf during 2013-2014 academic year.  Originally from LA, she lived in Jerusalem while studying in Hebrew University’s Non-Profit Management and Leadership MA program.  Thank you, Jenn!

Jennifer SmithPrior to my first visit to Shutaf’s afterschool program I was warned that most of the kids would speak little to no English, however with two months of ulpan under my belt, I was confident that I would be able to communicate with at least some of them. Boy was I wrong! When I arrived at the program, the kids were all very warm and welcoming, but once they started talking, I seemed to have forgotten all of the Hebrew that I had learned! A young girl immediately approached me to investigate who I was and what I was doing at Shutaf. A staff member not only had to translate for me, but also respond on my behalf. I was not as fortunate other times that afternoon and often found myself frantically searching for help when a child attempted to communicate with me. I was dependent entirely on the English-speaking staff. Not being able to communicate with the kids made me feel useless and completely isolated from the very people I was there to interact with.

As the afternoon progressed, many of the kids seemed to pick up on my limitation or special need, if you will. One boy took my hand and brought me over to where lunch was being served and merely pointed to the items that he wanted and required my help getting. Another girl, who insisted that we work on her art piece together, simply communicated by passing me a crayon and pointing at her drawing. I knew I correctly interpreted her actions when a huge grin spread across her face after I began adding a little jewelry to the ladies in her drawing! She clearly had not yet learned that every woman is in need of a little bling and I was happy to share such an important life lesson with her! After our artwork was complete, another group of kids gestured for me to join them on the floor for a card game that I was unfamiliar with. They demonstrated first how to play and then handed me the cards so that I could have a turn. They were patient when I didn’t catch on to some of the rules immediately and persistent in trying to find alternative ways to explain something when I didn’t understand their hand mimes the first time. Similar instances occurred throughout the remainder of the afternoon and, by the end of the program, I was baffled as to where the time went!

I had never thought of myself as being a person who has a disability, but reflecting back on my first visit to Shutaf, I now see that I was. Yes, it was only temporary and, in the realm of disabilities, doesn’t even begin to compare, but it did give me a quick glimpse into what many of these kids experience on a daily basis and may continue to throughout their lives. The initial feelings of isolation, exclusion, frustration, and purposelessness that endured when I arrived at Shutaf are typical for a person who has a disability. Although adjusting to this new environment and impairment of mine was difficult and uncomfortable at first, having the kids at Shutaf accept and include me despite my differences, made a huge impact and had me leaving with a sense of purpose. This outcome, I believe, can be attributed to the amazing, inclusive environment that the Shutaf staff has cultivated.

Above all else, Shutaf has taught me to value people’s differences by understanding that everyone has something worth contributing. I was lucky enough to be in an environment with kids who are thoughtful, tolerant, kind, and patient, and also embrace this very notion. Unfortunately, this is not always the case. It is important to remember that although you may not know now what it feels like to be a person who has a disability, likely, at some point in your life, you will (World Health Organization). Keep this in mind before you decide to brush off someone who might be a little bit different from you, or even before you choose to park on the sidewalk, making it virtually impossible for someone in a wheelchair to get somewhere they need to be, instead of spending the extra ten minutes it takes to find a parking spot, or before you opt to not make your business, classroom, program, or whatever else, accessible for everyone because it requires a little extra work on your end or might cost a bit more.

A huge thank you to all of the Shutaf staff and Shutaf participants for the invaluable lessons you have taught me over the last year! I will be sure to share those lessons and I hope you and everyone reading will do the same!

A Pure Heart

In this soul searching season, I’ve been thinking a lot about how I’ve changed my attitude towards parenting when it comes to Adina. For so many years – about 15 – I worked tirelessly to get her every possible therapy, work with her at home on building her skills and for a while I was even teaching her math when I realized the school system was unequipped to do so. I would say a prayer when lighting my Shabbat candles that she be the most she can be.  There was never a question in my mind that I had to do EVERYTHING I could to ‘move her ahead’.

But lately I’ve been wondering how this all effected her. Something her new homeroom teacher said to me in a meeting before school started clarified this even more. She was talking about how the school’s approach is to encourage change and I got a shiver down my spine. I replied that I believed real change comes from within. To the teacher’s credit, she agreed.

It was then that I realized how much my attitude had changed. As Yom Kippur approaches, I spoke to Adina about fasting – she knows everyone around her fasts and for a while after her bat mitzvah I thought I had to encourage her to fast as well. But she wants her drink of water before going to bed and she needs to have lunch the following day. I’ve always gone along with this thinking some day she’ll ‘get it’ and want to try and fast the whole day.

But now I finally ‘get it’. She doesn’t need to fast. She doesn’t need to review her actions and her thoughts of the past year. She doesn’t need to repent. She doesn’t need to clean her slate. She has a purity of heart that the rest of us can only yearn to achieve.  She accepts other people for who they are – let’s them just be.  If you’ve never been in the presence of someone like Adina, taken the time to get to know her, you might not even be able to grasp this concept – it is so unique.

While I’m a bit sorry it’s taken me this long to realize all of this, I’m grateful for having finally understood in my heart that not only should I let her just BE but that I need to aspire to be more like her.

I’ve updated my candle lighting blessing for her – I pray that she will be happy and love herself just the way she is.

G’mar Chatima Tova

Tsav Giyus Rishon (First IDF Recruitment Order)

Earlier this morning, I walked Adina over to our first day of Shutaf Summer Camp at the Kiryat Moriah campus – a short 10 minute walk from our house. I reminded myself that all the hard work I put in to make Shutaf a reality for Adina and other kids with special needs – it’s all worth it when I see Adina’s smile when she joins the beautiful big circle of 60 children and teens, 20 staffers and Deb in the middle, starting off the day.

Shutaf is an integral, positive part of Adina’s life. At Shutaf she gets the attention and support she needs when she is overwhelmed with the social demands of being in a group. Most importantly she is accepted and loved for who she is, just the way she is.

When I returned home, I opened the mailbox to find an envelope in Adina’s name. I knew it was her tsav giyus rishon (first army recruitment order). I was expecting it to arrive soon, as her 17th birthday approaches, but I wasn’t prepared for how it would completely throw me. I feel completely bereft.

Having trained myself to only focus on what she CAN do, this envelope suddenly reminded me of everything she can’t and won’t do or be. It took me right back to square one – 16 years ago – when we got her diagnosis of mosaic Down syndrome.

That envelope brought all my concerns and fears for Adina’s future to the surface. I know how capable she is and how loving and kind she is, but I also know that the world turns very quickly and doesn’t stop for people who need another minute to catch up. How will she fit in?

For my part, I will continue to believe in her.  We may yet see her in IDF uniform as a volunteer.  Maybe she’ll do some other form of national service. Whatever she does, she has my endless love and highest respect.

From the Shutaf Kitchen

From guest blogger and newest Shutaf volunteer, Ada Broussard

My first introduction to Shutaf came when Beth Steinberg sat on a panel and for a mere 15 minutes talked about the organization’s inclusive programming for kids with special needs.  With warm gestures and wide eyes, Beth really captivated my class of mainly females, who after the panel, all waited like hungry dogs to get her card and hear a little more from this passionate woman from Brooklyn.

Now, it’s noteworthy that I often misplace things.  With good intention, the most mundane items like my cell phone, get left on the balcony, or hidden in the spice cabinet. Beth’s card, however, I put in my safest zipper compartment, and immediately put it on the fridge when I came home until I could sit down and email Beth. I wanted more Shutaf in my life, wanted to feel for myself the fun, open, and creative atmosphere that comes through from the video that Beth showed us.  And, if I could meet the wanna-be John Travolta featured on the video, well… my new life in Jerusalem would be that much more fulfilled.

And suddenly, after a probably over-eager e-mail, I found myself on an unknown bus, headed to an undiscovered part of town, to see the real-live Shutaf…  all whilst baking cookies with a Canadian-Israeli chef, and five older teens with special needs.  A bit nervous?  Definitely.  Equally excited?  Of course.

Here are a couple of things I  gleaned from my first day with Shutaf:

1.  Eating cookie dough is perhaps very Americana (I’d like to be proved wrong), and needs to be carefully marketed to the new bakers.  Seeing as this was the first week of a long series of baking classes, I have full confidence that by the end, bowls and spoons will be licked clean.

2.  There is no crying, only laughing, over spilled milk and broken eggs.  Baking with a room full of teens with special needs is no less messy than my baking by my lonesome, and the results are no less delicious (this week we made oatmeal-raisin cookies, sans raisins for some haters).

3.  For some, warm cookies are inherently more interesting than the baking process itself;  I hope the next class we can learn a bit more on the magic that happens when you mix baking soda with four and sugar, and that the end product is only the result of sweet stirring and purposeful measuring.

4.  And last, and probably the take-home theme of the day: Shutaf truly practices inclusion via quality programming. At this first baking class, I was the new girl in a room full of friends… not to mention, the new girl with the .. uhhum.. questionable Hebrew.  And yet, by the end, I forgot all about my apprehensions and found myself welcoming a slew of grammar corrections from five funny, opinionated, thoughtful, competent, and soon-to-be master baker teens.

I’m so glad I’ve found this little niche with Shutaf.  Even though, quite honestly, I don’t know what my niche will fully entail.  I do know, though, that if it includes me hanging with wonderful kids, learning more about quality special needs programming, and having weekly access to fresh-baked goods.. well… that’s fine by me and my belly.

Special Teens

When is a teen with special needs being a “teen” and when is s/he being “special”?

That is a quandary that many parents of teens with special needs find themselves in. Think about it – teens can be moody, unpredictable, in their own world, extreme in their responses – different.   When you add special needs on top of all that, how is a parent to cope?

I often think that the first sign that my daughter Adina was becoming a teenager was when she refused to let me cut her bangs – starting right after her bat mitzvah. Her beautiful honey-colored, straight hair became a “curtain” that she very quickly realized was handy to hide behind. (Teen or Special needs?)

Adina fell in love with John Travolta, discovering Vinnie Barbarino from Welcome Back Kotter.  She decided to change her name to Vinnie and refuses to answer to Adina – even gets insulted when you use her “real” name. (Teen or Special needs?)

This week she brought a friend home directly from school without checking with me first. (Teen?) She then got tired of said friend after an hour, wanting her to go home already. (Special needs?)

Adina’s immediate response to any uncomfortable situation is to cry. All along I thought that was definitely special needs since I figured she cries because it’s hard for her to verbalize her feelings. (Special needs?) Then someone told me how her typical daughters spend a lot of time crying. (Teen?).

When they enter their teenage years kids with special needs are learning independence and forging their identity just like typical teens. But unlike their typical peers they do not have the resources to cope with the challenges of adolescence. Where does that leave us parents? We try to navigate this tricky territory together with our kids and let me tell you, it aint easy.

Embracing Independence

I almost can’t believe it. Adina is taking the Jerusalem city bus home from school. For a 16-year-old girl with Down syndrome, this is a HUGE step and can only happen if she has been properly prepared and taught how.

That’s where Shutaf comes in. Adina has been part of the Shutaf Teen Explorers’ program since its inception in summer 2010. The purpose of the program is to help young teens with special needs transition into this next stage of life, to see beyond their own, everyday worlds and realize that they can be part of the bigger community.

During Shutaf camp sessions, the kids take city buses together, visiting places of business, volunteering, learning self defense skills – taking a closer look at the community around us. Taking the bus together with her Shutaf friends and staffers was the perfect introduction for Adina to what can be a scary first time experience for any kid. Sure, she had taken public buses before with us but with Shutaf she learned to pay for herself and figure out where she wanted to sit or stand on the bus – without Mom taking the lead.

Most of the kids in her special ed. class ride the city buses and Adina decided she was ready to give it a try. I was excited by her initiative and ready to help her make it happen. I accompanied her on the school-home route five times and then she was ready to solo, equipped with a bus ticket and a cell phone. She’s been acing it – handling the crush on the bus calmly and completely sure in her knowledge of when to push the button and when to get off the bus.

My only concern is the unexpected and then it happened. This week Adina missed the bus for the first time. She has her own pace in life and I’ve never figured out how to rush her – it’s simply impossible. Know what she did? She called mom. The absolute right move. Yes, she was crying and upset but she problem solved and made the call. I was able to talk her through it, making her understand that she has to relax and be patient and wait for the next bus. Three calls later, she was on the bus – thrilled to have successfully managed the setback and quite proud of herself. Will she walk to the bus stop faster next time? Stay tuned…

Travels with Akiva. Part III

We’ve pulled it off. Naomi and Joe’s wedding. An almost 1000 mile road trip with the whole family to Niagara Falls and back, 2 shabbatot in different places as well as numerous hotels, al fresco meals and hugs and kisses with a myriad of friendly faces. It’s been a whirlwind for Akiva, who’s been sleeping late and has even nodded off in the car on occasion, something he hasn’t done since he was about two years old.

He’s shown amazing resilience and we’ve all had fun. In truth, much more than I truly anticipated before we left. It’s hard to truly know what he’s taken in but he’s aware, I think, that it’s all been a great big adventure and that his world has been expanded beyond its usual boundaries. And only today did he mention the airplane, the ‘bayit house’ which is what we call our home in Jerusalem, and Shalva, the afternoon program which he loves and attends daily after school.

Back in Israel, Akiva’s life is so routinized. That works – for him as well as for us. School, Shalva, quiet evenings at home relaxing after a bath and snack. Bedtime. Life is straightforward and holds few surprises. It’s a blessing for all of us and yet, there’s the rub – his life is so small, too small sometimes. For 2 weeks, he had a huge adventure – new places, new faces, new experiences along with seeing all that’s familiar and dear to him in NYC and Brooklyn. I only wish it wasn’t so complicated. Special tips? Rented a mini van for travel – really a smart idea. Everyone was comfortable and Akiva had his own row. Hotels? Make sure they had a pool for early morning fun before sitting in the car. Snacks? As familiar and happy as possible.

Thank you to the special friends who spent time with Akiva and let us have some fun in the evenings and by day in Brooklyn; Brenda, Elana, Gella and most of all, our dear, Erszi.

See you again soon.

Seemingly Small Steps

My daughter Adina hasn’t missed a Shutaf camp session yet – she’s been to all 13 of them since our first summer camp in August 2007. She was my reason for creating Shutaf with Beth Steinberg and embarking on this incredible journey together with our staff and all the children who have enjoyed many hours of quality inclusive programming at Shutaf.

Adina’s group, the Chokrim (Explorers) are an inclusive group of young teens who leave camp to go about town, learning independent living skills like riding a bus, paying for a snack, volunteering at a soup kitchen, self defense skills as well as learning about the wider community. Finding out what potential jobs are there? What does a hotel look like behind the scenes?

I love seeing Shutaf lessons brought home. Adina, 15 ½ , has always been hesitant to hold money in her hand, let alone feel confident enough to conduct a purchase on her own. At Shutaf she’s been learning how to make a simple purchase by herself with staff support. What an incredible opportunity.

Yesterday, we were having lunch at a local pizza parlor, enjoying the last day of summer vacation together. After lunch, Adina wanted ice cream for dessert.  I gave her the money and told her to go inside and buy it. Instead of her usual “you do it”, she agreed! Wow! In our world, that’s a tremendous breakthrough, close to a miracle… and it is thanks to Shutaf.

The Future – Yikes!

Here we are, raising our daughter with special needs – thankful to have enough money to give her private lessons and therapies when needed. We’re grateful to be able to put aside money in a savings account for her, thinking we’re being responsible and taking care of her future needs. But are we?

I’ve lived inIsraelfor over 30 years and after years of scraping by, we are finally financially solvent. Recently, we reviewed our savings of 10 years. We have put together enough for a bare monthly minimum for our daughter to live on for hardly two years. Rude awakening? More like panic.

Like everything else in the world of special needs inIsrael, it’s all a mystery until you’ve gone through it yourself. No government agency volunteers information or assistance – in fact when we met with a social worker from the welfare ministry to hopefully get some information about assistance and services for our teen with Down syndrome, we were told that they had NOTHING to offer. Well, maybe one weekend a year when we could park her in one of their “nofshonim” and have a weekend off to ourselves. Well, that might work for dogs (and often not very well) but children or teens don’t feel comfortable in a completely alien environment without a single familiar face. So we said “No thanks.”

When your child is small, you expect to be providing for all her needs but as a child with special needs gets older, you start to think: Does this dependency ever end? Who will take over from me? How will she manage as an adult? How will I provide for her financially? Does she have to be a burden on her siblings?

So many questions. Not enough money.

An Act of Kindness

When a frail and elderly person gets on the bus, or enters a crowded room, do you give up your seat?  If someone enters in a wheel chair, do you make room for them?  What about for the young, ambulatory person with special needs?

Our son Akiva, who has Down Syndrome, loves to take buses; he loves to see performances; he loves to go to synagogue.  He isn’t very good at standing and he needs to claim his seat when he gets to a new place right away.  Arriving with him in a crowded space is one of the most stressful things that we, as his parents, experience on a daily basis.  We know that as soon as he gets there, he is 100% focused on where he is going to sit, and he feels very anxious if it isn’t immediately apparent to him where he will find his “place.”  As his caregivers and “navigators,” we feel that anxiety build acutely as we approach with him.
When we do finally arrive with him, the stress reaches a peak.  We say to ourselves: I just hope that someone will see us walking in, see Akiva’s excitement and inability to control himself, and quickly vacate the nearest few seats so we can begin to get him settled and relaxed. We are almost always disappointed, as we wrestle him to keep him on course, climbing over legs and seats, working hard to keep him from touching everyone he passes, stressing about the loud and not so articulate noises he is making.  Even in the place we regularly go to synagogue – a small and friendly community, where most people are kind and understanding to us – we find that people don’t realize that the one thing we need most, the one supreme kindness they can show to us, would be to simply clear out the seats nearest the entrance when they hear us approach.
We try not to be resentful of this.  Though it may be clear to us, people just don’t realize how important it is to us and to Akiva, to have a place to sit as soon as possible upon arrival.  We have no way of knowing how we would react under analogous circumstances – we have trouble remembering a time when we weren’t tuned to the needs of Akiva.  Yet, we know, in fairness to us, and to our peers, who genuinely want to “do good by us,” that we have to find a way to get the message across.  Parents of children with special needs hate to feel constantly needy themselves; we want people to anticipate our needs, so that something seemingly so simple as the entry into a crowded room can be accomplished smoothly, without feeling we are the focus of everyone’s attention.  It is a small, if not obvious, kindness to show us, and can make a huge difference in our ability to cope on a given day.
Thanks to guest poster, Ira Skop.  Read and share with others.