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.

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.

The Four Children. Welcoming All Children to the Seder.

By Beth steinberg.
This blog was originally posted on the Times of Israel, on April 2nd, 2015. 

Each year, as we read the parable of the four children, I think about all those other children not mentioned in this historically, simplified description of human behavior.

“One who is wise or thoughtful.
One who is wicked or rebellious.
One who is simple or innocent.
One who does not know how to ask.”
Adapted from A Night to Remember, by Mishael Zion and Noam Zion

The Seder’s Four Children ask us to consider what is wisdom, rebelliousness, simplicity or, even being unable to ask? Emotions and questions that would seem to relate to the average child’s experience of learning and growing, of being and becoming a worthy individual.

The cousins. March, 2015

The cousins. March, 2015

Children. What do we want for them? So much. Make the right choices. Give the right answers. Live up to expectation. Make of yourself something that society values. Excel and shine, learn to be caring human beings, exemplify the wise and thoughtful child of the Four Children. Who would want different?

How do we react when they behave badly? Not well. You’re the evil child.

Get an A? You’re the wise child.

Seem sort of off? The innocent child.

More off? The child who lacks communication, who doesn’t even know how to ask. For so many things.

Becoming, of course, doesn’t happen in an instant. It takes time, along with fostering a range of necessary life experiences for each individual – part of their development and maturation process. Their actions and choices may vacillate, be they wise and unwise. Their big questions may be answered or left unresolved, their personal balance lost or found, their lives opened or kept closed to personal growth. As for their siblings and family members – they’re either carried along with them on their path to adult enlightenment or left behind in the dust of self-discovery. We parents can only leave the door wide open and hope that they will return to ask and discuss those ever so important four questions at the Seder.

While we now have many Haggadic variations on the four children – ones that do consider a different take on the traditional view of childhood and development – the tale of these four children can still be a moment of sadness for those with disabilities (and those who love them) at a Seder, or, of feeling marginalized because these descriptions don’t match their childhood (and parenting) challenges and experiences.

For this year, 5775, I offer up this take on the four children, recognizing that there will always be children who fly under the radar of general acceptance and love.

The one who is wise to people’s feelings, who senses happiness and sadness.
The one who struggles to understand and control their impulses and behavior.
The one who is innocent of unkind thoughts, who greets the world with pleasure and happiness.
The one who wishes to be welcomed and spoken to in public, while lacking traditional forms of communication.

Pesach Sameach.

 

My Perfect Internship

11053271_10152737475253441_5953663643612746229_oAs a recent college graduate, it’s a pretty standard thing to do an internship. A lot of people my age do internships to get experiences in various different fields that they are interested in possibly working in one day. It’s really not a rare thing.

What is rare, however, is to find the perfect internship. And let me tell you- I can say, without hesitation, that my internship experience with Shutaf could not have been more perfect. From the work I was doing to the people I was working with, everything was simply awesome.

Here are my top 5 reasons why Shutaf was such a perfect internship:

1) The staff at Shutaf is top-notch. I had the experience of getting to work with some really inspiring people, who all have such a passion and dedication to the work that they do day in and day out. I remember coming to the first staff meeting on a Tuesday morning and being a bit nervous. How do I suddenly incorporate myself into this organization that is already running so smoothly without me? My fears were relieved from the very minute the meeting started, as everyone on the staff was so welcoming and eager to hear my opinions on various topics.

2) My big project at Shutaf was so much fun and so rewarding! I had the chance to coordinate, for the first time, a team of runners to run in the Jerusalem Marathon in support of a more inclusive Jerusalem. It was a big task, but I was excited for the challenge! I’ve often heard friends complain that at their internships they weren’t given substantial, long-term projects. This certainly wasn’t the case for me!

3) Flexibility. As someone traveling in a new country, participating on a Masa program, and dealing with lots of constant schedule changes, flexibility was crucial. And at Shutaf, I found from the start that the staff was, thankfully, so flexible. I worked most directly with Elizabeth, the Director of Outreach and Education, and she always available by phone, email, text message, you name it! If I had a work conflict, she helped me figure it out. If I needed to come to the office a bit late she happily said “no problem” with a smile.

4) The kids and teens and Shutaf are simply awesome. I’m really going to miss seeing their faces every Thursday (and sometimes Tuesday) afternoon. Even with my limited Hebrew, they were eager to engage in conversation, learn more about me, tell me about their weekend adventures. They’re really just a great group of kids, each with such unique personalities. So full of life, so enthusiastic and willing to try new things, even things that may be scary and difficult at first.

5) Shutaf, as an organization, has the power to change the world, and I really do mean that. As I’ve said so many times to so many different people, Shutaf is a model of inclusion for the entire world. Read about Shutaf, visit the program, hear from volunteers, listen to personal stories and you’ll be amazed at just how flawlessly Shutaf works. I’ve learned so much from Shutaf and now’s the time for me to pass it on.

Written by, Rebecca Cushman, who interned with Shutaf from October, 2014-March, 2015. She was originally a participant in the “Real Life Israel,” Masa affiliated program.

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!