I want excellence. I want opportunities.

I’m the mother of a 17 1/2 year old girl with special needs. As I watch Adina’s peers without disabilities graduate from high school this month, going on to mechina or the army, my heart aches. What future awaits my daughter? She has another 3 years to go in the Israeli special education system. And then what?  Where are her Mechina programs, army options, college track?

vinnyAdina started out by being individually included in neighborhood preschools and elementary school until fourth grade, when she expressed that she was tired of always being “on the side”. We transferred her to special education – Tidhar – a wonderful school for children with severe learning disabilities, as well as emotional and behavioral issues in Jerusalem. She had three excellent years there. But since then, she hasn’t yet found a place that truly answers her emotional needs.

And yet, the bigger question is what happens after the school years? Adina loves to work with babies, horses and dogs – she’s a good worker. Where is the vocational school that will train her to do these jobs, truly believing her capable of hard work and giving her the emotional support she needs to succeed as well as the social framework that a young person craves? Where are the adult education frameworks, and college programs for young adults with special needs, like Adina? Don’t they also deserve to continue their formal education, just like everyone else? Where are the job opportunities for these capable young people?  They are part of our society, even if they think or move a bit slower than most of the rest of us.

For example, the Jerusalem municipality should have a certain number of places set aside for people with disabilities – cognitive and physical – in its city programs. Imagine if the municipality, when planning a complex of discounted studios for artists, set aside a studio or two for artists with special needs. Nobody wants or needs a “Festival Tsamid” – a separate municipal festival for people with disabilities – that just emphasizes difference. It’s condescending, wastes public funds that should be spent on quality services and ultimately and is of no interest to anyone in the broader society.

I want opportunities, excellent opportunities for my daughter. I want people to see and really understand what she CAN do and not only focus on her limitations. Stop separating and feeling sorry for the person with cognitive disabilities! Instead, stretch your mind and open your eyes to believe in that person’s abilities and her inherent right to be an integral part of society. That will benefit the person with cognitive disabilities and even more, will strengthen our society.

It’s time to think about finding a way to integrate people with cognitive disabilities into every walk of life, naturally.  Cafe Aroma does it on a national level. Why can’t the government? It’s not because of limited budgets, it’s because of limited thinking.

Disabilities Inclusion in Israel: We Can Learn from LA

by Laura Kam and Beth Steinberg

Beth Steinberg lowresFlying into Los Angeles I am filled with envy. I am meeting with Jewish community leaders involved in disabilities issues and I am keenly aware of the work that is ongoing in this area. From the activities surrounding Inclusion Awareness Month, the Federation’s excellent blog, The Better Together Inclusion Conference and the Mission to Israel which focused on best practices for community inclusion, there is much to proud of.

As a disabilities-rights activist, the co-founder of Shutaf (partner in Hebrew), an inclusive, informal education program in Jerusalem, and a mother of a teen with Down syndrome, how I wish I were coming to Los Angeles to share Israel’s advanced attitudes and wisdom with people who have disabilities. Like so many Israelis, I wish that I was thrilled not just with our newly elected government in Israel but with their respective platforms on the rights of all people with disabilities. I wish I could tell you about conferences dedicated to including people with disabilities in Israel – in schools, camps, after school programs, universities and the workplace. Sadly I cannot.

There is very little formal outreach, let alone mentorship and training for educators in the field – both in traditional settings as well as informal education – regarding inclusion.

When conferences on disabilities do take place they are more often than not for specific disabilities only – inclusion isn’t present when it comes to the division of people with disabilities in Israel, let alone in the greater society. Our community is, for the most part, fragmented and weakened by fear, by the fear of association with the other who has a disability different than ours.

Another issue in Israel, as in the United States, has been the rise of Autism to the top of the “disabilities heap.” Autism has become the label of the moment – the cause célèbre in the world of disability, pushing aside the needs of all people, children in particular, with other developmental disabilities.

This inequity, one that’s reflected in the generosity of municipal and government coffers, has caused a growing need throughout Israel and particularly in poorer municipalities such as my hometown of Jerusalem. This is a city that lacks the funds to professionally handle educating and supporting the growing numbers of children diagnosed with a range of learning issues that include Autism spectrum disorder, as well as other developmental disabilities. As for quality inclusion programs including schools, after schools, and day camps for all children and teens – with and without disabilities – they are few and far between.

Parents have proved to be a powerful force in the world of Autism, in Israel, as in the rest of the world, lobbying, demanding and receiving specialized classrooms within general education schools as well as longer school days, and a school vacation schedule that is much more comprehensive than children with cognitive disabilities, severe learning problems, and emotional/behavioral issues receive. As well, many of the specialized programs for students with Autism are held in general education facilities, giving those children opportunities for inclusion alongside their typical peers that is rarely offered to children with cognitive and physical disabilities.

Reassessing how government agencies divvy up people with disabilities in order to provide support services is critical if all are to have equal access to the help they need.

Currently, the three available designations, Autism, cognitive disability and rehabilitation (an all-inclusive label that truly means nothing), create barriers that limit access to a range of programs both social, educational and vocational, for adults as well as children.

Two weeks before the last election, Prime Minister Netanyahu said that his government would put together a “special plan” for dealing with people with Autism. Yair Lapid’s Yesh Atid party, made Autism funding a critical part of the deal they cut before entering the coalition, something that many would describe as sector-based legislation, an old- style way of doing politics that many would like to see ended.

It is well known that a number of governmental leaders have family members with disabilities and we applaud those who’ve talked about it honestly and we respect those who have chosen to protect their privacy. But we are now demanding that Israeli leaders put the needs of all Israeli citizens with disabilities on their platforms.

If they do, perhaps the community will be able to come together, as you are, in Los Angeles.

We have much to learn.

Beth Steinberg is the co-founder of Shutaf Inclusion Programs in Jerusalem, providing year-round activities for children and teens with special needs, ages 6 to 21. www.campshutaf.org

להמשיך לתת באהבה

כרמית מדר, רכזת תוכנית המד”צים של “שותף” משתפת אותנו במחשבותיה על העבודה והעולם הקטן.

חזרתי היום מהעבודה בשותף בצהרון וגם בפעילות של המדצים. יצאנו להתנדב, לתרום לקהילה, לתת באהבה – ארזנו קופסאות מזון למשפחות נזקקות. איזה כיף היה לראות את המדצים מסתובבים באולם עם כל המוצרים, ממינים ומכניסים לארגזים עם חיוך והרבה שמחה בלב!

carmit and tamarוווואאווו, מאז הקיץ האחרון כבר עברה כמעט חצי שנה. בקיץ האחרון התחלתי לעבוד בשותף, בקייטנה. אני סטודנטית לתרפיה באומנות וחיפשתי לי עבודה לקיץ.  בפסח שלחתי מייל לדב לובל שהיא ניהלה  אז את שותף אבל בעצם הכרתי אותה דרך איב ווטסטין שהיתה המנהלת הראשונה של שותף….

איזה עולם קטן, חבר מביא חבר וזה הרעיון בשותף- שילוב ושיתוף בקהילה- אנו צריכים אחד את השני, עושים אחד למען השני, ומקבלים את הכח להמשיך ולתת  באהבה.

 תודה רבה לשותף,

כרמית

Continuing to Give With Love

Carmit Madar, our guest poster this week is Shutaf’s Teen Coordinator. Read some of her thoughts about her work at Shutaf. 

I just got back from my Thursday afternoon’s work at Shutaf’s youth group and later in the evening Shutaf’s young leadership (madatsim) program. This week the madatsim teens and staff went out to volunteer – give back to the community with love – packing up boxes of food for needy families. It was wonderful to see the madatsim moving around the room, sorting and packing boxes with huge smiles on their faces and joy in their hearts!

carmitWow! Nearly six months have passed since the summer. I was an art therapy student looking for a summer job when I got a job working at Shutaf’s summer camp last year. I had heard about Shutaf from Eve Wettstein, Shutaf’s first program director, and sent an inquiry to Deb Lobel, the program director who took over from Eve.

What a small world – “a friend brings a friend” (Shutaf travels via word of mouth). These are the central themes of Shutaf :  inclusion and community where we all need each other, doing for one another and receiving strength and inspiration to continue to give with love.

Thank you Shutaf!

Carmit

Distraught and Isolated

In the Western world we place great store by a person’s intelligence. We have the greatest respect for people who are ‘brilliant’. We can even feel more comfortable with someone with a disability if they have normal intelligence. Here in Israel you hear the term ’emotional intelligence’, referring to people who can connect with another person, any person, with surprising ease, way beyond the norm or capable of easily understanding nuances of a complex social situation.

vin in poolMy daughter, Adina, has incredible emotional intelligence, way beyond what you would think someone with cognitive challenges would be capable of. She knows when someone is ‘for’ or ‘against’ her – accepting her or being judgmental. She also knows, for example, that an aide in a special education school should be respectful of the students. In recent weeks the aide in her classroom has been making her life in school untenable. She calls Adina ‘annoying’ tells her to go ‘cry elsewhere’ or embarrasses her in front of the class. Is Adina super sensitive? Absolutely. Should this aide be allowed to continue to work with teens with special needs? I think you’d agree with me that if she hasn’t changed her behavior in several months then she should be fired. School administration doesn’t see it that way. They’d much prefer to have Adina adapt, the way the other kids manage with this staffer. In fact they will explain to me how Adina is probably misinterpreting the situations and the aide’s intentions.

But I’ve just told you that Adina has higher than average ’emotional intelligence’. You see Adina knows how inappropriate this aide’s behavior is. She knows she is deserving of respect. For Adina, these issues are black and white – which means that she can’t go to school while the aide is there because that feels unsafe and I think she also knows that the aide’s behavior is simply wrong.

In the past I would have picked up the fight to get the aide dismissed. By this time in my life I know exactly how that’s done. But I’m not choosing that path this time around. I think Adina is saying more than just I can’t stand this aide. I think she’s sick of school, sick of people wanting her to fit into their cubbyholes, sick of them trying to ‘fix’ her. I think she’s ready for more choice in her life. She’s ready for less pressure to conform.

But how do I make that possible for her? I have no idea. I thought she had four more years of a special education framework so I’m not quite up on what’s out there besides school. The little I’ve heard about doesn’t seem so exciting. She needs time to transition into adulthood. She’s not ready for a full time job for example. And meanwhile she’s at home.

Talk about feeling distraught and isolated…

Informal Education? Not in Israel.

How do you explain the importance of informal education to someone who has no experience or point of reference, someone who has never participated in a professionally run camp or after school program.And how do you explain why informal education is so crucial for kids with special needs.

The importance of structured after school activity is not recognized in Israel – the loneliness that kids and especially teens with special needs experience is not appreciated. Their need for well planned, quality informal education programs not understood.

In Israel, the powers that be and indeed, the public, think that education happens during school hours and consists of imparting information. Older generations will tell tales of their youth growing up in the Scouts or other youth groups. But I sometimes think youth groups in Israel today are quickly on their way to becoming obsolete. They serve a small percentage of youth and while they may claim an educational approach, I question whether the implementation bears any resemblance to the plans. As for inclusion – while they might be waking up to the need to include or serve kids with special needs, youth groups do not have the resources or know-how to do this professionally or successfully.

Informal education for kids with special needs requires money and professional planning as well as ongoing guidance. Yes, the way we do it at Shutaf. It’s not rocket science and yet sometimes I feel that people in Israel from all walks of life view us as if we’re from another planet.

Taking a walk through Shutaf’s Hannukah camp this week, I was profoundly impressed with the energy and order that reigns, despite the obvious behavioral challenges of some of the children. Staff are well trained, engaged and leading by example. I didn’t hear the standard Israeli camp theme of “Yalla! Yalla!”, prodding the kids along. Rather, I saw groups engaged in morning activities – looking at PECS boards to see what activities were in store for the group that day, discussing the previous day, giving out stickers for good behavior. I saw kids – with and without special needs – getting the attention they needed in the moment, in a low-key and appropriate manner.

This is simply not a given here in Israel. I’m not saying that Shutaf is the only one that understands informal education. I’m saying I wish others did informal education in Israel as well as we do.

Preparing a child with special needs for the siren’s wail

 

Reposted from the Times of Israel Blog
NOVEMBER 22, 2012
Beth Steinberg
The siren wails. Your heart stops. Depending on where you live and when you hear the siren blast, you have between 15-90 seconds to get yourself and your children to a hopefully secure location. Once there, you remain for approximately 10 minutes, while you work your radio and your smart phone in order to find out where and when the rocket landed, and calm everyone, including yourself, down.

What about families raising a child with a disability? Preparing a child or teen with special needs for the noise, the rush and the fear that accompanies a tzeva adom or Red Alert is something that families in Israel’s southern region deal with daily. If a child has sensory issues, they may close down at the first sound of the siren, or worse, freeze in place, unable to move. An older child can’t be swept up and carried – parents, family members and caregivers need to be exceptionally savvy and calm under extreme circumstances.

On Friday evening, at 4:45pm, the first siren in more than 30 years rang out in Jerusalem. We had just stepped out with our son, Akiva, who’s 15 years old and has developmental issues, on our way to synagogue. We looked at each other in shock and were thankfully able to get back into the house without Akiva totally realizing what had happened. He was confused but mercifully compliant although he balked initially at returning to the house.

When we addressed leaving the house about an hour later, we thought carefully about how to talk about it with him. Akiva is strong and capable and known for stopping in his tracks if he’s moved too quickly – that is, without preparing him. We came up with two plans. Plan One? We told him that if there was a ‘big noise’ we’d run ‘chick-chock-a-roo’ into a building. Akiva who likes certain kinds of words, responded to that with a smile and seemed reassured. Plan Two? Ira would push him down to the ground with my help – as safely as we could – and one of us would lie on top of him, sheltering him as well as themselves as best as possible. While we walked to friends for Shabbat dinner, we repeatedly went over the plan. If we lived in Beersheva, or Ashkelon, or Ashdod, we would have done a real-time run through of what we’d planned in order to ensure that Akiva would have been as familiar as possible with what to expect.

Another family in the neighborhood, parents to a teenage daughter with special needs who is particularly sensitive to noise and emotional upset, immediately began discussing the what ifs, like what if there another siren, or worse, a siren at school? She was able to express, “I’m afraid of a siren,” but, as the mother described, she was already worried about her daughter, knowing how she might perseverate over this frightening moment.

I spent some time this week strategizing about this new reality with members of the Shutaf team, the Jerusalem-based inclusion program that I co-founded with Miriam Avraham. Program director Marci Tirschwell commented that it’s important to strike the right tone with kids, regardless of disability, one that takes into consideration their age and way of relating to the world around them. “The bottom line? Talk to the kid and be honest without being alarming,” Tirschwell explained and say, “I’m going to show you where you have to go – you will be safe. Tell it like it is in a simple way so they can understand it at whatever level they are at.”

Another Shutaf parent, Lisa Arya, described the conversation that she had with her daughter, Gabriela, who’s 14 and has developmental and communication issues. First Gabriela said, “I don’t know,” when asked how she would react if a siren blew. Lisa said “we talked about the details of going downstairs, like lock the door or not and take the dog or not?” detailing a plan for coping with all the eventualities, including the social setting of the shelter which is perhaps more stressful for Gabriela than the actual siren.

Arya, who has two sons serving in the IDF, said that she is careful not to overreact about things for fear that Gabriela will mimic her reactions. Gabriela asks about her brothers’ safety but is reassured by what she’s told. “The reality is too abstract for her,” says Lisa, unless she sees newspaper or Internet imagery that might make her relate in a more direct way.

Encouraging a child to express their worries, or watching for behavior that suggests stress is important as well. One parent described it as being a detective, looking for clues or suggestions that everything isn’t right and then responding in a calm and informative fashion. If a child isn’t showing signs of concern, or isn’t capable of engaging in a conversation, parents can still talk about it with them, or even prepare a series of simple images that will offer them something familiar with which to relate during a red alert. “Preparation,” says Tirschwell, “it all comes down to preparation.”

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.