Do you even like your job?

by: Yoni Arya, Assistant Director of Programming

img_5049Camp Shutaf, part of Shutaf Inclusion Programs, offers 3 weeks of camp for 130 campers, teens and young adult participants from the greater Jerusalem area. More than 50% of Shutaf families pay significantly reduced tuition for the program which includes busing to and from camp. Shutaf believes that every family should have access to quality summer programs regardless of their financial situation, and without the family having to jump through hoops in order to  prove that they need financial aid for camp.

I have had the absolute pleasure of working for Shutaf for the last three years, now going on four, and everyday I find something new that I love about job.

The best part of my job at Shutaf is our focus on  answering difficult needs, especially during  summertime, Which can be the most difficult time of the year for children with special needs and their families. Choices for activities are limited, and most of them end up putting families into debt.

I am so proud that Shutaf is a reliable, professional and affordable answer for so many children and  families.

Let me tell you more with a story from a pre-camp home visit. I knocked on the door, Emotionally  prepared (or so I thought) for meeting a mom and her two boys. A ten year old boy, “Moshe”, answered. “Moshe” is super polite, and very sweet – you can tell he is very excited to see me. I sit down with his mother ‘Sara’, and his brother ‘David’, who is thirteen and a Half (a very important point to David), and their older sister who is an IDF soldier.

‘Sara’ begins by telling me that she will only be sending ‘David’ to camp as she is not familiar with Shutaf programs, and only feels comfortable sending her older son. From the way she is speaking, and by informally  assessing  their extremely modest home, I can tell that there is a lot more going on here then she is comfortable sharing with me.

I tell her about camp and the  different activities we offer, and watch as both  boys get excited. We discuss tuition, and I can also see the look on Sara’s face as she wonders how she is going to pay for two children to go to camp for two weeks. Next,my favorite part of the home visit, getting to know the kids. I find out that David  loves to sing and apparently is very good at it. He also loves soccer, carpentry and swimming. “Moshe” is an energetic boy who also loves sports, swimming and playing with friends. The family, thinking I wouldn’t take a problem child, told me that the children don’t really have behavioral issues.  This seemed a little odd to me and the sister had made a couple comments to the contrary. I filled in the children’s information and told Sara to be in touch with our Director, Marci Tirschwell to discuss price (which she brought up numerous times during this home visit).

I wanted a little more information on these children as I felt i didn’t get to see the full picture. After getting permission from the mother I got in contact with the school social worker who handed me over to David’s teacher.  My expectation of this call was that the teacher would tell me that the boys have some behavioral issues but it is a manageable situation. Boy was I wrong. The teacher proceeded to tell me that not only do the boys have some behavioural issues but the financial situation was worst than I thought. She told me that Sara is a very caring mother and tries her hardest but can only send a very plain sandwich for lunch and the school provides clothing for the children.  Sara can’t even pay the 3$ that goes towards the classroom fund. ON top of all this she had to have surgery on her leg so she is not able to work.

We decided, as is our policy, to contact the city social worker and double check the financial situation and see if the social services department would help this family pay for camp. I tried to contact the social worker several times but only once got a hold of a different social worker that told me she would ask  the families social worker to contact me. She hasn’t yet. Meanwhile our counselors get in contact with our families the week before camp in order to update them on relevant information for camp. I was told by one of the counselors that they called the “Cohen” family and were told that the children are not signed up for camp.

Finding this very odd I phoned Sara. Sara told me the children weren’t interested in camp anymore. To try and feel out what the issue was I asked if they would like to come to camp for a week. As Sara is discussing this with David I hear one of the most heartbreaking sentences come out of David’s mouth. “Mom if it’s too much money I don’t want to go”. What is happening in our country when a thirteen year old is willing to pass an amazing summer experience because his Mom can’t afford it?

I immediately told her that I would call her back in a few minutes. I called up Marci and explained the situation. Her immediate response “make it happen”. I am extremely proud to work in an organization that gave me the opportunity to allow this family to come to camp no questions asked. These two children are coming to camp. The mother payed the lowest tuition that I believe we ever offered and this family deserves that. Some of my fondest memories are of camp I don’t think any child should be deprived of that.

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The Best Part?

Our summer intern, Stephanie Reynolds, has been chronicling her daily experiences at Camp Shutaf. A recent college grad from Toronto, Stephanie has been having a blast experiencing camp and inclusion the Shutaf way. Enjoy!

IMG_20150731_182637Interning at Shutaf includes getting to work with many great people at an awesome organization. It’s also offered a combination of experiences, in particular, unpredictability and being flexible. Prior to starting at Shutaf I thought I’d be working on social media but have to come to realize my role is much more diverse than that. Every day you have no definitive idea of what will be asked of you or what you’ll be doing. This is not a bad thing in my opinion because it means you can look forward to every day being a new adventure. You can never get bored with repetition and at an environment such as summer camp being able to adapt is a good quality to have. Being flexible means getting to enjoy the short time you have with the kids that much more.

When I was told I would be going to camp, I figured I would just be on the sidelines, watching and observing. While I do end up doing that (my shyness always gets the best of me), I also get to interact with the kids – today, I got the opportunity to get involved with other activities. I made a  purse out of newspaper which was really fun, and I also had the opportunity to dance again.

The best part? Trying to improve my people skills. I am being forced to break out of my shell and talk to people. The language barrier makes it a little difficult but it is still really fun.

Even more so, I get to experience in a small way, what it is like having a disability in day-to-day activities. Not being able to join in an activity, or feeling left out of something, are experiences that everyone feels at some point but for people with disabilities, they face that exclusion every day. I know I’ll never be able to truly understand the struggle but being at Camp Shutaf is helping me learn. The unpredictability and flexibility required is all a part of this process. Even though I don’t know exactly what I’ll be doing tomorrow, I’m still excited!

“That Word”

Yoni and Gabi

Yoni and Gabi

I recently attended a birthday party for a friend. There were sixteen people at the party — I knew four of them — one’s a very close friend of mine. We were all sitting down to eat when somebody used the word retard.

Of course, I’d heard it, but seeing as the guests were mostly strangers to me, I decided to just move on, and let it go. I convinced myself that this person — this girl-who-used-the-word — didn’t know that she was misusing “that word,” that is, using it in a negative way. My close friend, knowing how I feel about people using “that word” (and I truly believe my friend didn’t mean any harm by it, and did not expect the girl-who-used-the-word to react as she did), jokingly said,

“Yoni, did you hear that?”

I tried to laugh it off instead of starting a debate on why we should or shouldn’t say “that word.”

Which did not happen.

Instead, the girl-who-used-the-word, turned around and asked me why “that word” bothered me?

In an attempt to avoid a major disagreement, I kindly explained that the word “retard” bothers me, and would she use another word. Like many people my age, (I’m 23), she thought that it would be amusing to keep using “that word” to get a rise out of me. I continued to explain that I personally don’t like getting into this kind of conversation with random people that I don’t know, let alone at a friend’s birthday party. Just as in previous situations I have been in, where I’ve heard people justifying the use of the word “retard,” the girl-who-used-the-word began sharing her thoughts;

“But I don’t mean anything bad by it,”

“It’s just a word,”

“It bothers you because you work in that field,”

The last one is what really hit home for me, and I was ready to burst but kept my cool. I wanted to say, “No, it bothers me because I have a sister who’s retarded,” just to see what her reaction would be, and what would be the next excuse she would have for using “that word.” Instead, I resisted, and (slightly more aggressively than before) explained that I have my own personal reasons for my reaction when people use “that word,” and could she please respect my decisions.

At this point, I realized I wasn’t going to change this girl-who-used-the-word’s mind, and that in the process had put myself into an agitated mood.

When I find myself in a situation like this, I like to use a technique that I practice when working with kids. The main point of the technique is to bring the conversation back to something to which both parties can relate — individually and together. I asked the girl-who-used-the-word to respect me as a person, and just use a different word. Just like when you ask someone on the bus not to put their feet on the seat. They might not think it’s a big deal, or see why it would bother someone, but usually out of respect for the other person they’ll take their feet down. People in any setting should be able to have safe conversations with each other — to learn and discuss topics that spur different opinions, and in this case, not put the other party guests in an uncomfortable situation.

I ended up leaving that party feeling very irritated. It wasn’t just because “that word” was used, but that I was put into a compromising position — either abandon my principles or come off as an opinionated person who went off on a rant, lecturing someone at a birthday party.

When I mention “that word,” I am not just talking about the word “retard,” or “retarded.” It’s about so much more than that.

Many of us, myself included (my mother can attest to that), take very little time to consider how our words can hurt someone — with or without our knowledge. Whether it be racially, anti-Semitic, sexist or just a mean word, we should all just take a second, and before we open our mouths, try to respect the people around us.  Like my mother always says, “think before you speak!”

Yoni is the Teen Leadership Coordinator for Shutaf. 

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.

 

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!

I am not afraid. Finding strength in difference.

Written by Shutaf co-founder, Beth Steinberg, this blog originally appeared in the Times of Israel on December 10th, 2014

Hi, I’m Beth. I’m mother to Akiva, who’s 17 and has disabilities.

I am not afraid.

My son’s challenges are significant but I’m not afraid.

I am unsure about the future. His happy adulthood, my happy years as an older adult. What are his rights, what do I deserve, what will be the responsibilities his older brothers will shoulder? Will he be happy?HappyPic

I worry he might not be happy. But he’s almost always happy. That makes me less afraid.

When I write about Akiva – his needs, his challenges, my challenges – I choose my words carefully but I am not afraid. Except for when I hit ‘publish.’

When I talk about our journey as a family – the tough moments, the tearful moments, the moments that I just wish it were different – I try to be honest. I know honesty is important. I know many people pity us, pity him, don’t truly understand what it means to be his parent, his full-time advocate, his person, his people, his caring community. We’re the people who help him shower and dress, who care for him when he is sick, who sing songs with him. We’re the people who love him. Sometimes, I wish it were different but I am not afraid.

When I post a picture of Akiva, I choose the happy ones, the ones where his cute, uneven teeth, his often crossed-eyes, his sometimes grubby face, are softened by the happy smile on his face. He’s kinda funny-looking but aren’t we all?

I am not afraid to show the face of disability – his disabilities that is – via my son. I am not taking advantage of his well-being. I am letting the world know that disability is happy, disability is every emotion and more. Just like not having a disability is so many things and so many emotions and so many experiences.

I am not afraid of exposing us, of sharing him. While I know he’s unaware of this exposure, I know that showing him to the world, my extended world, will help ease fears and misconceptions about disability. I hope.

Akiva on his way to a party

Akiva on his way to a party

But I am afraid of a world that treasures beauty. Where skinny bodies and 6-pack abs, along with being blonde and gorgeous, is regurgitated on television and in movies. There are few positive images shown of real people who look different, as opposed to actors playing a part.

I’m afraid of a Jewish world that treasures learning. Where how many degrees and how much you earn, gets more respect than your dedication to being a good person, an inclusive person, a person who believes that we were all created in G-d’s many images.

I’m afraid for other parents of children, teens and adults with disabilities. Those who feel unsure that the world will appreciate their loved ones. That the world will look kindly on their stories. Their tales of difference and challenge, of unusual beauty lost and found.

I’m afraid of a world that divides people up according to who can and who can’t. A world that divides those with disabilities according to who’s got this and who’s got that. A world that decides who’s high-functioning – whatever that really means – and who’s not. A world that sentences you and judges you for your difference without knowing what that really means.

So, I work past the fears. I tell his story. I tell our story. I invite you in, to read, listen and comment, so that you can understand and appreciate. So you can smile at the different-looking-behaving-whatever person the next time you see them on the street and be glad that they’re a member of your community. Because their people, those who love them, need you to try to be less afraid.

“And a rock feels no pain. And an island never cries.” Paul Simon

 

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?

Screwing Up and Coping

By: Beth Steinberg

It should be on my epitaph, or maybe it’s the name of a movie like the Wizard of Oz or, It’s a Wonderful Life. I’d like the name to be a bit more down and dirty, kinda like that famous scene of a Russian roulette game in the movie The Deer Hunter, with a wigged out Willem Dafoe and a scary Christopher Walken. No, that’s not right either. Maybe it’s more like Cheech and Chong’s seminal Up in Smoke.

Ira, Akiva, and Beth at the circus.

Ira, Akiva, and Beth at the circus.

Ira and I played a little Russian roulette about a month ago…and lost. We always lose it seems, just when we’ve let our guard down. Not sure anyone ever gets that really. Don’t blame them, can’t really understand it ourselves.

We had two lovely meals out on that particular Shabbat, a true red-letter event, at two friendly homes. We made some tasty vegetarian dishes to accompany Friday night dinner – it was a big meal around a full table with a host of Akiva fans, including his hosts who know him well. Akiva sat, ate, wandered a bit, even petted their two lively dogs and had success in the bathroom. Whew.

Saturday lunch, it was another big meal around a full table (we were in charge of dessert, a decadent chocolate cake), with a group who was completely friendly to all of us, especially Akiva. Akiva sat, ate, played with toys and then…had a toileting incident on their lovely sofa.

We were both horrified. The hostess was a doll.

As she delicately handled the upholstery on her very beautiful sofa, and told me to relax, that “things happen,” I yammered on apologetically, wondering why we had allowed him to sit on the sofa, why we hadn’t taken him to the bathroom more (he had been taken twice), why we hadn’t brought along a special pad for him to sit on (forgot but then again, he’d done well on Friday and he hasn’t had an accident in quite some time), why we had let our guard down, and of course, why had we bothered taking him out for two meals over the course of Shabbat. That’s a challenge for us with Akiva, who’d never been to house #2.

Lost in the shuffle, of course, was Akiva. On the way home from lunch, freshly attired in clean pants, he was quiet, clearly desperate for his Saturday afternoon of music on the iPad, his way of relaxing – we long ago gave up that Sabbath battle.

I felt badly. He knew, on some level, that things hadn’t gone well, that he hadn’t been able to do what he needed to do in the conventional fashion when offered the opportunity.

Why? I can honestly say that if I knew why, I’d know why this particular skill has evaded him, and us by definition, for so many years.

If only we understood at a more base level, why people, especially those with disabilities, gain certain skills and not others. What makes expressive language such a challenge and receptive language not? I’m using our experiences with Akiva of course, I know for others it may be different. Akiva, who is very skilled in languages is very unskilled in chitchat, in expressing his thoughts, in just saying “hi, what’s new?” And that’s deeply troubling to him, social kind of guy that he is.

Imagine if you NEVER knew what to say, not even the most basic, “My name is Akiva, what’s yours?”

We all know people who are deeply shy, those who do struggle, quite painfully to navigate social settings. Or those, who stammer and stutter, who dream of speaking freely whenever they’d like.

For us, Akiva’s family, as well as others in his life, from his teacher to the therapists and Shutaf staffers who know him well, it’s often a mystery to determine what’s on his mind and what he’d like to share with us.

There are those who would say he functions at X or Y age level but we prefer to see him as someone who has the life experience of a young teen and as such needs to be respected accordingly. But it’s complicated when he needs help with everything he does and when certain skills of independent living continue to elude him.

So, we cope. We respect him. We support him, and welove him. Our own Wizard…in a Wonderful Life.

A Vegetarian on Israel Independence Day

Written by Miriam Avraham this post was originally appeared on April 23, 2012.

Morris and Martha Herman, ahead of their time.

Morris and Martha Herman, ahead of their time.

My dad was ahead of his time. He chose to become a vegetarian in the 1930′s, no doubt influenced by Harav Kook’s philosophy of vegetarianism as an ethical way of life. My dad believed that being mindful of what we eat together with daily exercise was the path to a healthy body, mind and spirit. You might say “duh!” today but he was living according to these principals at a time when everyone around him was eating steaks every night, smoking, drinking and living extremely sedentary lives. He maintained a vegetarian diet even during his service in the US army in WWII – telling us stories of how he dreaded KP (kitchen patrol) during basic training – “The chazer, uch!”.

Thanks to my dad, I’ve been a vegetarian all my life. But I wasn’t always grateful. As a kid growing up in suburban New York, the question kids most frequently asked me was “You’ve never had a hamburger?”. The answer was and still is “No.”. We didn’t even eat peanut butter and jelly sandwiches. My mom’s definition of a sandwich was a two inch pile of lettuce with some cheese. There was nothing to trade in my lunch box. Talk about weird. Being a vegetarian kid in the 60′s and 70′s was weird. I only started meeting other vegetarians as a teen when friends started ‘converting’.

Since there was never a vegetarian option at events, my mom would give us dinner before we went even to the fanciest of weddings, a habit I’ve only recently been able to break. Camp was a real problem since we weren’t just “non-meat-eaters” we were “healthful eaters” and that was in direct opposition to camp fare.

The list of how growing up vegetarian set me apart is long and having passed the “torah” on to my children and grandchildren, the sense of difference gets passed along too I think.

Every year in May I wonder how Yom Ha’atsmaut became the day of burnt offerings. It’s a relatively recent phenomenon since I remember people just enjoying nature, picnicking, going to the beach. My fondest memory of Yom Ha’atsmaut when I first arrived was riding bikes to the beach in near empty streets and having a picnic without the stench of “mangals” burning all around me. I think Israelis see the barbecue as a sign of affluence and I know people love it with a passion. I guess I will always be looking at this minhag (tradition) from the side, with a perplexed look and a nauseous feeling in my stomach.

Caring for Each Other, Across All Spectrums.

Why is the Grass Always Greener? Supporting Every Individual and Family.
By: Beth Steinberg

I wanted a Huckapoo brand shirt. It was the 1970’s, when those multi-patterned and brightly-colored shirts were the rage. They were expensive. My father was a congregational rabbi with four children, all enrolled in Jewish day-schools, and my mother was a stay-at-home parent. Huckapoo shirts just weren’t in the budget.

An example of a Huckapoo shirt from http://www.vintagetrends.com/

An example of a Huckapoo shirt from http://www.vintagetrends.com/

“If I just had one Huckapoo,” I reasoned with my mother, “everything would just be better.”

It was 7th grade and I had just switched schools, travelling 30 minutes to not just a different neighborhood but a more sophisticated zip code. On the first day, when I looked around the schoolyard and compared myself to the other girls, I knew I had some catching up to do.

Fitting in, I soon discovered was going to be complex. My father was a Conservative Rabbi and I was a commuter from a different geographical area relative to the school’s location.

Easy acceptance into the right group was not going to be bought with one shirt, although I never stopped hoping.

The Huckapoo shirt story popped into my head on a recent visit to my health provider’s main office in downtown Jerusalem. My husband and I were reviewing a payment for an emergency ambulance ride with our youngest son some time ago. While assessing our paperwork, the person helping us noted Akiva’s diagnosis, Down syndrome, and said “he’s not in the system.”

That has to be one of my favorite lines as parent to Akiva. “He’s not in the system.” Seriously?

Akiva is almost 17; he’s enrolled in a special education school, receives a stipend from the National Insurance Institute based on his disability and is recognized through the Ministry of Welfare as receiving services.

Incredulous, we had her check. Nope. Not listed as having Down syndrome. I mentioned that he actually has a dual diagnosis of Down syndrome and PDD – NOS, on the Autism spectrum.

“Oh,” she said, with an exultant tone. “You know, if he has Autism, he’s eligible for many more services than if he just has Down syndrome.”

Just has Down syndrome! Another moment of incredulity.

She then proceeded to show us the expansive list of what he could receive with the “right” diagnosis.

In 2014, Autism is that brand-name shirt, that Huckapoo that I never got. The diagnosis that insures you the proper cachet and instant acceptance into the right group, a clique filled with families, children, teens and adults with ASD, or Autism Spectrum Disorder.

And while they may wish their child didn’t have said diagnosis, they tend to group together, with those who are dealing only with their issues. That’s normal, of course. It’s vitally important to chat with parents experiencing similar things, but really, are we living such different lives?

Is developmental delay or cerebral palsy or whatever your kids’ diagnosis is, so scary that you can’t open your heart up to another parent walking a path not so different from yours? I don’t think so. It’s fear, just like the fear felt by those who haven’t dealt with disability at all.

Life with Akiva has meant that I have new understanding for anyone dealing with a challenge, whether it’s a cancer diagnosis or a broken leg. I get that they are navigating something new, something scary, something that pulls at their understanding of life as they know it.

But the cliquishness that develops in the world of disability just depresses me. Seems like something’s getting lost in the shuffle when we get “sorted” by disability, when we get “injected, inspected, detected, infected, neglected” as Arlo Guthrie put it in his famous song, Alice’s Restaurant. When we, those parents and family advocates, feel we only have the interest and strength for our own problem, as opposed to learning to care about the needs of the whole community of people with disabilities.

And I completely respect those families who’ve advocated for their children with Autism, who’ve fought for better services and won. That’s great! But the division of children, of teens, and of adults into labels – each one tossed it’s bone of assorted services and programs – creates division where it could create unity and empathy for shared experiences.

We need to work together, to join forces, in support of each other, in appreciation of each other’s challenges, of our children’s issues – regardless of perceived functioning differences, regardless of our own personal fears and presumptions. That’s how we’ll build an inclusive community. Together.