Akiva and the Missing Glasses. A NeverEnding Story.

Now, where did I leave you?

It was early June when in the space of one week, 2 pairs of Akiva’s glasses went missing.

The story has continued in amazing, astonishing and mystifying ways.

BEFORE YOU READ ANY FURTHER, please don’t tell us to get him glasses with straps – been there, done that – or to get his glasses personalized – we have – or tell us he’s a candidate for LASIK surgery – right now it’s not on the table – or that he should have contacts – if you’d like the job of putting them in and removing them, but know he’s not a candidate.

HappyPic

Akiva and his glasses – previous pair

HOW IT ALL BEGAN: Two pairs of glasses gone in a week. One pair went missing at school. One pair went missing at Shalva.

DIFFERING REPORTS: What really happened and when the missing glasses were first noticed as gone.

STRANGE MOMENT: One month later, 1 pair reappeared only to go missing again a week later.

THIS WEEK: We swapped him into a cheaper $80 online spare. That pair was grabbed and broken by someone yesterday, at Shalva.

GLASSES COUNT: That’s 3 glasses in 6 weeks.

ALSO THIS WEEK: Ira put on his detective hat and went and chatted up the afterschool bus drivers. The bus and what happens on the bus, is of course, a black hole. One driver said, “sure I know Akiva wears glasses.” Ira inquired if he’s ever found a pair on the bus, and believe it or not, he went and fished up a pair saying who’s are these? Guess what, They’re Akiva’s but an older pair from who knows when. Can you imagine? The bus driver never once asked at school or Shalva, or the children and teens on his bus, if anyone recognized the glasses.

SAID BY STAFF: Now we know to check Akiva when he comes off the bus. That’s because we’ve never discussed this before? And what happens in September, that is if I’m not in jail by then, when you have complete staff turnover as you do each year?

SAID BY OTHER STAFF: These things happen.

The facts as we see them.

AKIVA’S FRAMES: Akiva has worn the same frame for some time as it’s easy to replace online and fits him reasonably well. And, they have his name on them. Ok, it’s in English but seriously. He does occasionally wear another style – yes, they have a strap and yes, that doesn’t matter.

AKIVA’S VISION: Akiva is -9, or 20/1000! He’s significantly nearsighted. Measuring his sight is done passively, but we’ve seen, as he grew accustomed to glasses, how much they help him see better. Yes, people with Down syndrome are often over-corrected but we see that he does need some kind of correction.

Akiva also has strabismus (he’s cross-eyed), and nystagmus (rapid eye-movement, now much better), and has had corrective surgery (as have all 3 of our children, as it runs in the family).

GLASSES COUNT: We estimate 17 pairs. Since 2006, when we moved to Israel, we’ve ordered glasses online, through a few local shops in Jerusalem (1x a year we get a Maccabi discount), and through our cousin the optometrist (good glasses too high a loss factor).

What’s next? Don’t know.

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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

2 Glasses in 1 Week. Who’s Responsibility Is It?

Hey,  you keeping score at home?

Akiva just lost another pair of glasses on Thursday.

School says he got on the bus with them.

Shalva says he got off the bus without them.

And I say, “Are you kidding me?”

They got lost on the bus. The bus? It’s like Switzerland. Nobody’s responsible. Bus companies are a law unto themselves, with little requirement to offer anything beyond the most basic of services. After all, the company chosen to ferry a city’s children to and from school – an important job one would think – only win the contract because they were the lowest bidders.

There’s a special place in hell for bus companies.

Drivers? They’re generally a likable lot. Matrons? Some are better than others., and bottom line, they are deeply underpaid. You know what? You get what you pay for.

Akiva Blog

In the ten years of Akiva losing his glasses in Jerusalem, somewhere during the course of his day – and often on the bus – they’ve never been found. What do the bus drivers do with them? Do they throw them out because they can’t be bothered checking in at their various stops to see if they belong to anyone. Only once, and they weren’t Akiva’s, did a bus driver find a pair of glasses and return them to us.

Again, I remind you that Akiva is significantly nearsighted. It’s not like you can pick up his glasses and use them to read the phone book. Truly, they’re only useful to him.

By the way, the recent pair of Akiva’s glasses have his name engraved on the earpieces. Yes, in English, but it is his name. A nice personalized touch that has proven to be useless.

When I asked the lovely and responsible National Service counselor for his group at Shalva why Akiva’s glasses aren’t looked for as he gets off the bus, (as if we haven’t discussed keeping an eye on his glasses before), she said, “well we’re not always there to take him off the bus,” but she’ll make sure they’ll pay more attention next time.

What should I do with that?

Nothing as it turns out. I’m too furious. And we don’t have another spare on hand.

Why? Because we’re lousy parents I guess.

It’s June. The craziest time of the year. I’ve had 3 weddings in the past 10 days, alongside rehearsals for summer Shakespeare, while by day, preparing for Shutaf’s critical summer fundraising campaign for camp due to begin in less than 2 weeks.

I guess, stupidly, we thought we had a grace period before the next pair would go. But I’ve often observed, losing glasses comes in 2’s and 3’s. Well we’ll avoid the 3rd loss as we have nothing to give him this time.

Ira, who was landing in NY as the news played out on Thursday, will make a quick order but it can take up to 3 weeks to get them delivered. Should I pop over to the local glasses store and order a $350 pair? I could but with 2 glasses gone missing in 1 week, I’m shockingly reluctant.

That means Akiva goes fuzzy. Out of focus. Unable to truly see well, until the $50 replacement pairs arrive.

And it’s nobody’s responsibility, as it turns out, but ours.

Akiva and the Missing Glasses: A never-ending story of Disability and Vulnerability.

Let’s talk about vulnerability. And don’t go putting your sad and supportive face on, thinking, “Oh, Beth’s about to tell us another Akiva story.”

I am, but that’s not the point.

I’m here in the house, staying cool, doing my happy Friday thing, fruit crisp in the oven, Ira out buying whatever he’s decided we need.

My phone bleeps. Ira’s telling me some story about Akiva’s glasses being thrown off the walkway at school. The teacher called all flustered with some whole ‘meysa,’ or story, which we immediately tune out. What’s the point in listening? Someone grabbed them off of his face. He was clearly not in a supervised space – whatever, can’t supervise everyone at all times – and the glasses landed, wherever they landed, to join Akiva’s other gone-missing-never-to-be-found-glasses that go missing in a given year.

Ira and I, the good Anglos that we are, buy more glasses. Heck, we support Zenni optical, ordering 4-6 glasses yearly.

The school? They do nothing.

Akiva has lousy sight and while he’s kind of cool being out-of-focus in his daily life, we are not. Wearing glasses has been a task that we’ve worked on, assiduously, since he was about 7 years old. It took years for him to accustom himself to them, and indeed agree to wear them. While he doesn’t necessarily ask for them, he gets that they have some use for him in his daily life.

Akiva also, like many of those with Down syndrome, has a small face, little ears, and a minuscule nose bridge, making fitting him in a good looking pair of glasses a challenge. We’ve tried many types of frames, going back and forth between the more expensive stretchy frames with better quality lenses which we buy locally (they fit the best), to cheaper online options that do the job less comfortably.

Beth and Kiv

What’s school supposed to do? I should be grateful, I guess, that Akiva’s not at risk for the stuff that’s standard procedure in Israeli schoolyards countrywide, where tough and even bullying behavior is too often excused as the norm.

Ira and I get that you can’t keep your eyes on every student, and every event that goes down. We really do. But what about Akiva’s vulnerability in this? What about his inability – truly – to protect himself? What happens – and I assure you I worry about it daily – when the boys are all sent off to use the facilities before breakfast? Who’s watching them then?

In an educational system – and this is a worldwide issue I’d say – predominantly staffed by women, at a certain point, boys are left to do their own thing in the bathroom. Builds independence and all that.

Bullshit.

If a person is vulnerable, then we must be charged with protecting them.

If a person is vulnerable because of disability or age or illness or whatever, then we must put a plan in place for assuring them their safety. Always, and at all times of their lives – cradle to grave. That’s what social services is supposed to be about.

That’s what building and securing the person’s well being – regardless of specific need or age – is all about.

And in childhood, when the responsibility is shared by many different agents, from school to after school programs to other children’s homes on playdates, that becomes complicated.

Parents presume – or they wouldn’t send their children off – that the these other environments have claimed responsibility for them.

Should they?

Can they?

“So, what are you thinking about – for Akiva – after next year?” asked the school advisor recently.

“Nothing,” is what I felt like saying, instead responding in a desultory fashion with whatever the moment required.

What would I like to do?

I’d like Akiva to live at home with us, until he’s an old man, and we’re even older.

I’m down with keeping the helicopter blades permanently turning over him, Ira and I (with the help of Akiva’s caregiver, Indu), continuing to be in charge of fussing over him, making sure he’s happy and well-turned out. You know, well-fed, well-slept and well-watered, clean-shaven, glasses cleaned, blackheads removed (my job), fingernails trimmed (Ira’s job).

In short, loved and respected. Honored and yes, protected.

We don’t see anyone truly applying for the job.

קייטנה לילדים בעלי צרכים מיוחדים מחפשת מקום קבע בירושלים

Author: Dana Pollak. This originally appeared in Walla News, on May 7th, 2015

שתי אימהות לילדים בעלי מוגבלויות הקימו מסגרת שתספק מענה לחופשות ולאחר הצהריים עבור
150 ילדים בעלי צרכים שונים. עכשיו, הן מחפשות מקום קבוע שיגרום להן להפסיק לנדוד, לטענתן לעירייה “לא אכפת”. עיריית ירושלים: “הבקשה תיבחן”1469827-18

מרים אברהם ובת’ שטיינברג, אימהות לילדים עם צרכים מיוחדים חיפשו מסגרת לילדיהם לתקופות חופש – חיפוש שלא העלה פתרונות. לכן, החליטו השתיים לפתוח בעצמן מסגרת עמותת “שותף”. כעת, אחרי שנים של פעילות, הן מחפשות מקום קבוע שיארח אותן בחופשת הקיץ. פניות לעיריית ירושלים, העיר שבה פועלת הקייטנה, נתקלו בדחיות חוזרות ונשנות לקבוע פגישות.

“התחלנו לפעול ב-2007 אבל עד היום לא מצאנו בית קבע”, אומרת שטיינברג, “את הפעילויות במהלך השבוע אנו עורכות בבית ימק”א בעיר ואת קייטנת פסח עשינו במוזיאון הטבע. היה מקסים שם וזה יכול להיות מקום מצוין גם לקיץ, אבל עכשיו מדברים על מכירת הקרקע לטובת בנייה. למה לא להשאיר משהו לטובת הילדים?”

“אנחנו שלושה חודשים לפני אוגוסט והמצב קשה. איש לא רוצה אותנו כשמדובר על תקופה של שלושה שבועות בלבד”, אומרת שטיינברג. “בפסח אנחנו הולכים לבתי הספר, אך בקיץ זו תקופה של שיפוצים לקראת השנה הבאה, אז זו לא אופציה. אנחנו מנסות לדפוק על כל דלת בתקווה למצוא מקום שיקבל אותנו ויהיה בגודל מתאים ונעים לילדים וגם מותאם לצרכיהם”.

את “שותף” הקימו שטיינברג ואברהם, עולות מארצות הברית, בעלת קייטרינג ומעצבת גרפית. תחילה, הייתה זו מסגרת קטנה שמטרתה לספק מענה לכמה משפחות שהכירו שחיפשו תעסוקת אחר הצהריים ובחופשות לילדים. “זה התחיל מעשרה ילדים שהעבירו שבועיים בכייף עם ארבעה מדריכים”, אומרת שטיינברג, “כשדיברנו עם ההורים הבנו שכולם הרגישו שלראשונה מצאו את מקומם. זה התחיל כמיזם פרטי לגמרי והפך למסגרת שהיא הרבה יותר ממה ששיערנו”.

כיום מציעה “שותף” תכניות שבועיות ופעילות בחופשות ליותר מ-150 ילדים ובני נוער עם צרכים מיוחדים בגילאי 21-6 בירושלים. הארגון יצר מודל משולב חדש שבו 75% ילדים עם צרכים מיוחדים והשאר הם ילדים “רגילים”. בין התכניות שמפעילה העמותה ניתן למצוא מועדוניות, קייטנות בפסח ובחופש הגדול, סדנאות שילוב לקהלים שונים ותכנית מד”צים- מנהיגים צעירים עם צרכים מיוחדים.

ייחודה של המסגרת הנו, כאמור, השילוב שבין ילדים עם צרכים שונים באותה מסגרת, שילוב מסוג שלא נראה באף מקום. הדבר מוביל לרשימת המתנה לקייטנה, רשימה שכוללת בעיקר ילדים רגילים. “אחרי הכל, גם הם מחפשים מסגרת ואנחנו נותנות משהו שלא קיים כאן. יש הורים שמבינים את היתרונות”, אומרת שטיינברג.

אברהם מוסיפה: “אנחנו עושות בפועל מה שהאקדמאים ואנשי המקצוע מדברים עליו – שילוב. זה לא רק לקחת ילדים בלי צרכים ועם צרכים אלא גם לערבב בין המוגבלויות. היום, מדיניות הממשלה מונעת שילוב שכזה וזה חבל. זה מוביל לבזבוז כספים כשעושים פעילות אחת לאוטיסטים, אחרת לבעלי פיגור ואחרת לבעלי תסמונת דאון. לכן, אין לנו טעם לגשת למכרזים של העיר או של המדינה כשכל מכרז מגביל אותנו לסוג מוגבלות ספציפי ואוסר עלינו לשלב ילדים עם מוגבלות אחרת או ילדים רגילים”.

“אם לא נמצא מקום גדול מספיק נאלץ לקצר את הקייטנה”

השתיים פנו לעיריית ירושלים במטרה לקבל סיוע באיתור מבנה – אך לא הצליחו למצוא אוזן קשבת. “שנים אני מנסה לשבת עם ראש העיר ולספר לו על העבודה שלנו אך זה לא יצא לפועל”, אומרת אברהם. “יש לנו פגישות עם אנשים בעירייה ממחלקת שיקום ומאגף הנוער, והם יודעים שאנחנו פועלות למען ילדים עם צרכים מיוחדים אך לא ממש אכפת להם. אנחנו מקבלות מהם עשרת אלפים שקלים, אבל למה זה מספיק? הם לא מבינים שאם משקיעים בילדים האלו עכשיו יהיה להם עתיד טוב, הם לא יהיו נטל על איש. אבל היום איש לא משקיע בהם”.

“אנשים בעירייה או גורמי מקצוע לא רואים את הפוטנציאל, לא מבינים שאנחנו הצעד הבא. אבל אנחנו ממשיכות לבדנו”, אומרת אברהם. “אם לא נמצא מקום גדול מספיק או כסף לשכירות למקומות שכרגע אין ביכולתנו לממן ולהתאים לצרכינו, נאלץ לקצר את הקייטנה. אבל זו לא הכוונה”, היא מוסיפה. “אנחנו כאן לספק מסגרת לילדים, מסגרת שתתאים לצרכיהם ותעניק להם את הכיף שכל ילד עושה בחופש הגדול”.

מעיריית ירושלים נמסר: “עיריית ירושלים מאשרת הקצבות על-פי קריטריונים מקצועיים, והעמותה קיבלה הקצבה בסכום של עשרת אלפים שקלים. לעירייה הגיעה רק לאחרונה בקשה מעומתת ‘שיתוף’ להקצאת מקום לפעילותם, והבקשה תיבחן בהתאם לקריטריונים ולנוהל ההקצאות”.

לפניות לכתבת דנה ווילר פולק: danawp@walla.co.il

Shutaf: The Best Place To Be

In one room, four pre-teen girls closely followed the complicated sequence of Zumba steps their teacher, Lisa, was doing in time to the music.  In an adjacent room, a small group of children, aged 6-13, sat in a circle petting a variety of animals brought in by Aryeh, a staffer from Jerusalem’s Nature Museum who has worked at Shutaf for many years.  One boy finally worked up the courage to pet a rooster (more than I could do); another stoked the soft fur of a white a rabbit; and others carefully held guinea pigs, and other tame animals.  Downstairs in the gym, under the supervision of a gym teacher, two teams were engaged in a spirited obstacle course-type relay race involving running, balancing on a beam, and aiming a basketball into a net.  A preteen unable to run due to a back injury, participated by serving as the timekeeper with her Smartphone.  But, winning or losing didn’t really seem to matter; it was all about being in the best place to be for having fun, socializing, cooperating, and getting exercise.

Marci, the Program Director of Shutaf’s informal, inclusive education program had been giving me a tour of the inclusive afterschool activities held two afternoons a week at the Jerusalem YMCA.  It was important for me to see and appreciate first-hand one of the Shutaf programs in action.

Arranged by Skilled Volunteers for Israel, I was a volunteer from the U.S. for a month. Thus far, I had been spending my time working at the Shutaf office alongside Beth and Miriam, the organization’s founders; Marci and Yoni, a staff professional), with Elizabeth, the Director of Outreach and Education, and Rebecca, another volunteer from the U.S.

Meeting four days a week at the office, we collaborated on key issues: program planning, grant writing, and program assessment.  We clarified ideas about each program’s goals and objectives (for the after school program at the YMCA), camp programs (the week before Passover and for three weeks in the summer), and the different units specially designed for the teens.  For example, we documented what had occurred during a teen unit on going to a restaurant, and another on sex education.  We listed the ways in which these units resulted in a positive impact on the teen participants.  For the restaurant unit, we discussed how the teens succeeded in learning appropriate restaurant behavior, how to order, and what it meant to converse over a meal.  We worked on formulating and refining plans to share with current and future donors, to ensure that they would understand and financially support Shutaf’s many, valuable programs.

I have come to appreciate that no matter where you may be—at the YMCA, at camp, taking a field trip with the teens, or working at the office with extraordinary colleagues—Shutaf is the best place to be, not only for the program participants, but also for a volunteer.

Thank you, Shutaf!

Judith Zorfass, February 24, 2015

P.S. And the extra bonus for me was that it was the best place to be for the month of February—who cared about a Jerusalem snowstorm (we had much, much worse back home in Boston).

judyz (1)Dr. Judith Zorfass is currently a senior advisor to a project funded by the U.S. Department of Education, Office of Special Education Programs and a supervisor of special education student teachers for Lesley University.  From 1986-2014, she directed over 25 federally-funded projects at the nationally-recognized organization, Education Development Center. Her work focused specifically on literacy development, special education, and technology implementation. She has conducted research studies, developed curriculum, created software, designed and conducted online courses and webinars, designed websites, and carried out professional development. In addition to authoring the book, Helping Middle School Students Become Active Researchers, she has written book chapters and journal articles. She frequently presented at national conferences.  Dr. Zorfass received her doctorate in reading and language development from the Graduate School of Education at Harvard University.  She has been delighted to be visiting Israel from Boston for the month of February, volunteering at Shutaf in Jerusalem.

 

A Conversation with Yoni

Yoni Arya, is Shutaf’s Young Leadership Coordinator. 

What was your first connection to the field of disabilities?
I have ADHD, so growing up I was in a school where they didn’t know anything about what I was doing and they just tried to medicate me. Most people just pushed me to the side because I was being annoying and they didn’t know how to deal with me.

DSC_5489Who was the first person you remember encountering with special needs?
I remember there was a neighbor I had with severe psychological needs. I remember him being different and I was conscious of it. Everyone kind of laughed at it.

As someone who grew up with a younger sister with special needs, were there times that you felt your sister got all the attention?
No. In fact my sister was the easy one. I was the hard one! I never felt like she got all the attention. It’s hard for me not to be the center of attention!

Were there times you had to stand up for your sister?
My sister’s disability isn’t something you see so thankfully, we haven’t really bumped into people that were mean or making fun of her. We’re very protective of her but we haven’t had a need to protect her.

What is your role as a sibling of an individual with special needs?
To provide as much normalcy as possible. As a sibling, I would treat her any way I would treat any other sibling.

What do you see your role being as your sister gets older?
As she gets older, I think I’ll be the one taking most of the responsibility, if it’s not my parents. As she gets older, hopefully she’ll have a community, but I’ll be her support system and she’ll be at my house for Shabbat.

Were other kids in school growing up conscious of the fact that you had a sibling with special needs?
I don’t hide it, but it’s not something that comes up unless someone asks me. I don’t feel like I need to tell people before they come over to my house, “Hey, my sister has special needs.” I don’t need to warn you about how she’s different.

What did you learn from your sister?
I think I learned most that people portray what they want you to see. People are very different with their family than how they are outside. I’m with my sister, Gabby, all the time, and I know she acts very differently at home than when she’s out with other people!

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!

Sleepless in Jerusalem.

By: Shutaf Co-Founder, Miriam Avraham

vin in poolParents of children, teens and adults with disabilities see the world through a very different prism – a unique prism of worry. We worry about different and more things than the rest of you do. The things that are obvious, attainable and easy for typical children can be huge obstacles for a child or young adult with special needs. Other 18 year olds are moving on to a new stage in life – completing a gap year, going into the army or national service. At our house we’re trying to get Vinnie to serve herself lunch.

This latest surreal situation in Israel is scary, especially for Israelis in the south. I can’t imagine. While Jerusalem has been relatively quiet, Vinnie was outdoors during one siren and the loud noise freaked her out. She’s been uptight since then, has had trouble falling asleep and bad dreams.

I worry if I’ll be able to wake Vinnie from a deep sleep so that she’ll cooperate and run down the 3 flights to the bomb shelter in our building. I worry if she’ll act fast enough and figure out what to do if a siren goes off while she’s out walking the dog. I accompanied her one day but she wants to do it herself. (Something we worked hard on to help her gain confidence and be able to do this on her own)

Vinnie’s not going to her school’s summer program because they don’t have any bomb shelters or safe rooms. She’s bored at home, missing her routine. Luckily my husband and I work at home and we are coordinating our time so that we don’t leave her alone in case a siren goes off.

We’re always treading a fine line between protecting her and helping her learn new skills and gain self confidence so she can enjoy being a young adult and become more independent. Yet, in crazy times like these it’s really hard to keep sight of that line. We’re trying to continue a daily routine yet keeping her safe might mean losing a lot of hard earned achievements.

So who can sleep?

#IsraelUnderFire How are children with disabilities coping?

Dear Shutaf Friends,

For children with disabilities and their families, the current barrage of sounds and images are deeply disturbing, from rioting in the city to the frightening blast of the sire. For panicked parents, herding a child with sensory, developmental and/or physical challenges into a public bomb shelter is a nightmare.

Miriam Avraham, Shutaf co-founder and mother to Vinnie, was grateful the siren blared before he daughter’s bedtime, “Vinnie is very sensitive to sounds and can quickly become emotionaly overwrought. I can’t just get her to run down the stairs to the bomb shelter in the middle of the night.”

During this tense time, we need to live our lives as normally as possible. At Shutaf, the means preparing for 3 wonderful and inclusive weeks at our August camp, while solving new challenges caused by the current situation.

  • A more secure venue for camp.  Today, we signed on a newly-renovated space with a safe room on every floor.
  • Increased camper demand.  We’ve added an additional group, making room for more campers.  We’ve maxed out registration and have a waiting list.
  • Keeping teens in camp.  Instead of riding public buses to local activities, teens will take private, Shutaf-arranged buses and do more in-camp activities.

With your help, we can ensure every child’s safety, security and success at Shutaf.           With your help, we can raise an additional $25,000 in scholarship funding for August.     With your help, we can ease parental stress, offering respite to more families.

With our deepest thanks,

Beth Steinberg and Miriam Avraham, Founders, Shutaf

Rena Magun, Board Chair, Shutaf

P.S. Show your support for Israel.  Help send a child to camp.