Watching the Grass Grow

Akiva on the slopes. Killington, VT 2009

Akiva on the slopes. Killington, VT 2009

I can see myself in my mind’s eye. I’m laying on the lush lawn of my youth in Malverne, Long Island. It’s hot. I’m staring intently at the grass, examining each blade, watching for insects and whatever else of interest catches my eye. As a kid, I could do this for hours – ah, life in the 60’s and early 70’s before the computer – when one would stay outside playing as long as the weather was good, and until your mom called you in. I’d work on my headstand, my cartwheels, playing spud and kickball, and watching the grass grow.

When my eldest was born, I’d lay him on the bed next to me and admire him; his body, his little fingers and toes (even Natan, now 6”1’ or so, was small at some point) and his sweet, fuzzy head. I’d wait for him to move and shift, and when he was a bit older, I’d try to catch his eye and get him to turn in my direction and smile. I felt like I was recapturing those long ago days of my childhood, like I was watching him grow before my eyes. But of course, I couldn’t really watch him grow as everything he did, and my next one, Gabe, happened in lightning flashes – too fast for me to even notice, ensconced as I was in the daily work of nursing, changing diapers, and managing home and hearth. One minute they were mewling lumps and literally overnight they were smiling, sitting up, crawling, walking and…in the army.

I was just typing up a doctor’s letter for some paperwork we need to get together for Akiva. We’re applying for a visa for a foreign worker, something that is a great thing in this country. It’s most commonly used for at-home-elder-care as well as supporting kids or adults with chronic health issues or special needs who live at home. Think of it as making it possible for a person to live at home  – as they should. Studies show, by the way, that young adults with special needs thrive at home – with their parents and families, even if they’re out working and doing each day.

Ira and I have been moving towards this decision slowly – it’s not an easy one as you would imagine and we’ve had many moments of guilt about bringing in a stranger and of ceding 15.5 years of 24/7 responsibility to another person. Living here, we know of so many good stories and I’ve met many lovely foreign workers and I deeply admire their work ethic, along with what they give up in order to live and work in another country. If we get approved and can have a p/t person – unclear – it would ease the laundry load, the 6am-morning-grind, and offer us some evening help when we have meetings or other commitments. It would also make Shabbat more restful and shul-going easier.

As I was writing up the letter, I referred to one written before we moved to Israel by Akiva’s then geneticist, Dr. Bob Marion. Dr. Marion – a prince among men and if you ever need a specialist in genetic disorders – he’s at Montefiore in the Bronx – give him a call, watched over Akiva’s development from infancy until we left. We’d visit him every year or so in order to have an expert with whom we could talk about any number of issues. There’s a clinic with similar care at Hadassah’s Mount Scopus hospital that’s good but we’ve only gone once – it wasn’t the same without Bob Marion.

The funny thing? The information in the letter really hadn’t changed. Don’t get me wrong, Akiva has matured and grown, developed and learned new skills, in addition to a new language, but his everyday independent living skills still stink. The grass has grown, ever so slowly.

With Akiva, it’s always been about watching the grass grow, celebrating each hard-won moment of development, stuff I never thought about with the big boys.  When he sat up assisted at 17 months and on his own a few months later – you had to see how he figured it out – we sponsored a kiddush. When he stood and saw the world from a different vantage point – he was pleased with himself. When he walked at 6. When he first kissed – really puckered and kissed with his lips – he was 9. When he ran and jumped – it’s hilarious to watch – he was 11. When he started carrying his own backpack, and when we noticed that he really knows his neighborhood and could probably find his way home – not that I’d trust him to cross the street safely by himself.  And how about this one? When he finally pointed down into the toilet when peeing – a big one, as you can imagine.

I’m not telling you this stuff so you can feel badly. I’m telling you this stuff because it’s wild to slow the world down and get off. That’s what Akiva does daily – takes the world at his pace. As for the rest of us, it’s a page from a book that we should take the time to read.

Naked on the Subway

Akiva and his cousin Adam at our family Hanukkah party

There’s been so much written since the shootings in Newtown, CT – it becomes hard to separate fact from hyperbole. The essence is clear, that is, we need to establish and enforce gun control laws in the US- we have needed to for a long time, and that the medical establishment needs to reevaluate how it serves people with mental illness. But do we understand what families need and what individuals coping with disability or mental illness really need? I don’t think so.

I thought about all of this yesterday, as we drove Akiva up north for a Bat Mitzvah in bucolic Kibbutz Hanaton, not far from Nazareth. We listened to music on the way up and got out of the car in a good mood, happy to join the party a bit late but thankfully just in time for the Bat Mitzvah girl’s torah reading. We left, less than 2 hours later, needing to get Akiva home to his house, his familiar turf and away from us. As I said goodbye, I was pretty much tearful, disappointed that it didn’t work out better.

After holding him back so that he wouldn’t touch people too much as part of his efforts at conversation, and sitting next to him at a meal with a family who was pleasant but with whom we couldn’t really speak because of monitoring Akiva, and having my head yanked at or my hand scratched because Akiva clearly didn’t feel at ease, it was time to go.

Ira and I were surprised at how quickly the day went sour – it hadn’t all been bad. We had enjoyed services, Akiva had taken a walk to visit the cows, the day was lovely, kids were running around outside – Akiva likes that – and there was space to breathe, always nice for him. But? It was unfamiliar – most people there didn’t know him and couldn’t therefore relate to his need for friendship and conversation, let alone how Ira and I feel when we can’t even manage adult conversation or seem remotely friendly.

That was the worst part of it for me. I could feel my face kind of taking on that Steinberg frown, when you can’t really smile anyway – it’s an inheritance from my Grandma Rena z”l, a Polish/Russian thing, I guess. I feel like a social outcast, unable to exchange pleasantries or show myself to be a socially pleasant person. Ira says it’s like that dream of being naked in public – on the subway, let’s say. Funny thing is, nobody notices except you.

And you know, that’s how it is. Nobody sees you in those moments of quiet desperation. You can be truly invisible. Sometimes I remember that when I lived in Brooklyn, there were those who knew me before, before Akiva, when I didn’t feel marginalized to the border of the kiddush room or the sidelines of the party or wherever else I try to make Akiva’s behaviour manageable in public. Since we’ve moved, I recognize that as Akiva’s gotten older, it’s even harder to socialize in public settings together. Even if he’s being accommodating  we’re aware of him, or watching out for him, just not at ease. Friends and family will say, ‘get a babysitter,’ when we don’t know if we should bring him to the party, not always recognizing we feel badly to leave him out. Or, they say, ‘bring him, we’d love to have Akiva,’ and they mean it but don’t always want to think of how hard the party will be with him. They just want it to work out, without always realizing the emotions at work.

As for babysitters, we just tried a new one, an adult, who took Akiva on happily until it didn’t go so well. I recognized her frustration – they had a bad ending to a not so bad day, really. When it got too long for him and he balked – big time – instead of evaluating what happened and figuring out how to have a more successful outing next time, she told me that she’ll have to charge a lot more. It’s okay in the long run. Being Akiva’s sitter is not for everyone. I get that – it’s not so easy to find a sitter for a 15 year old boy with developmental delay.

What it makes me realize is that when we talk about inclusion in the community – integration, appreciating each other’s differences, reaching out to the four corners of the room, the school, the synagogue and beyond, what it will really take is seeing, really seeing the truth of what people are coping with and wanting to understand and listen first before we move ahead with the work of understanding need and creating new community paradigms.

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.

This is My Brother, Akiva

Gabe Skop, (he’s the one on the left) now 19, is not a man of many words. Affectionate and warm, he’s always ready with a hug, enjoying many good friendships with guys and girls alike. This year, he’s having a particularly Israeli experience at a Mechina, or pre-army program. The Mechina movement exploded in post-Rabin-assassination-Israel along with the realization of the growing rift between secular and religious Israelis. Gabe’s Mechina, Aderet, is pluralistic, catering to kids who come from all kinds of backgrounds, many of them at a point in their lives where they want the freedom to explore their religious identity in a non-judgmental environment – that is, away from Mom and Dad.

There’s lots of Torah l’shma – learning for the sake of learning – with visitors from all walks of Israel life, religious, cultural, and political. There are no tests but lots of projects for the good of the Mechina as well as the greater community nearby.  One to two days a week they volunteer after school, helping with homework, hanging out, acting as role models for kids who may lack those positive influences in their lives. Gabe’s favorite things of the year have been the intense workouts to prepare them physically for the army, as well as the week long hikes and other trips around the country. It’s camp…for a year.

Each participant is supposed to teach a class during the course of the year. Gabe was not pleased. All year long, he reported about some of his friend’s classes, relating the success stories mostly. In truth, he hadn’t found his topic until about a month ago when I shared Bill Kolbrenner’s article, The Courage to Embrace Imperfection, with him on Facebook. Gabe hadn’t considered that many people, most really, would probably choose to abort a fetus with a known disability – a testable disability, such as Down syndrome. I shared another article or two with him, including Bill’s other article that I love, along with a piece I wrote some years ago, when Akiva was much younger about testing and abortion, or what I describe as the yen for the perfect child.

Gabe was off. Through the Passover break, he read and thought and talked about it with others. A few heated discussions about the topic made him realize that for many, a women’s right to choose should come first and foremost and that it’s not for him to judge. Others disagreed. All this, with Akiva around full time during a long and at times tiring vacation from school.

Back at Mechina, Gabe called me and talked through his presentation – he’s not one for note taking and it can be hard for him to focus through on such stuff so I suggested that he ask friends to help, which he did. At one point, I said to him, “You know, it’s okay if you talk about how it’s hard sometimes with Akiva, or that maybe you wish he didn’t have special needs,” to which Gabe replied, “Oh, I’m older now, I don’t think about that anymore.” I closed my mouth before the flies flew in, wowed.

As it so happened, Miriam and I were visiting Aderet on the same day Gabe presented. We were speaking about inclusion and Shutaf and Gabe liked the idea of speaking right after us – it all worked out so perfectly. Miriam and I did some role playing with the kids and a good discussion was sparked about the rights of people with disabilities – is it truly a social justice issue and does the government really have to provide and should all communities, including more closed ones, such as kibbutzim, be required to accept families who have children with known issues into their communities?

And then, after a short break, it was Gabe’s turn. He scrawled the word, מפגר, or ‘retard,’ on the whiteboard. Asking the crowd what the word meant to him, there was a discussion of the misuse of the term, the redirection, if you will of a diagnosis into a negative word, a curse word even, at times. He gave the dictionary definition and then, put up a picture of Akiva. It said underneath the picture – and it was of Akiva at his cutest, ‘smilingest’ best – this is my brother, Akiva, he has Down syndrome. He went on to explain a bit about the syndrome as well as answer questions about Akiva and his development and what he’s like before moving on to Bill’s article and a heated discussion about abortion. It went well. I was proud, overwhelmed really.

Why? Not because he argued for or against abortion – that’s something for him to work through and understand, even if he doesn’t always agree and he comes by it honestly. We neither tested or thought of aborting – not because I don’t believe in a women’s right to choose but because I didn’t think that I had the right to choose what baby I get. Of course, I don’t really know what I would have done had I known and am glad for that and I can be honest and say there are times I wish it was different but I’m not sorry – there’s not tragedy here, only life lived as best as we, and I, can.

Back to Gabe. That simple statement. האח שלי, עקיבא. יש לו תיסמונת דאון – it was just so beautiful in its completeness and Gabe was completely comfortable saying it. The truth really does set you free.

The Future – Yikes!

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

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

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

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

So many questions. Not enough money.

A Round Peg

Raising children is the most challenging job we are given in this life – navigating the early, sleepless years, then providing the support and guidance our children need as they grow into their teens years. If you’re a thoughtful parent, it will lead you to some serious questions about your personal beliefs and red lines.

I have found that raising a child with special needs increases the challenge exponentially.

My daughter, Adina, is a capable 15 year old teen with Down syndrome – she loves music, painting, ceramics, falafel, John Travolta, Glee, dancing, hanging out with her niece, campfires, taking the dog for a walk. Speech has always been her biggest obstacle and once she finally had the flow of the words down pat, she suddenly retreated. She speaks in less than a whisper and struggles to get the words out that are so obviously right there on her tongue. As a result, she gets ignored a lot – who has the patience?

Being Adina’s mom has taken me places and taught me things I never would have learned or accomplished otherwise. I learned to put “knowledge” into perspective. Our society worships “smart” – the kind that gets you to the top of the class and into the best schools. Thanks to Adina, I have realized that the traditional kind of “smart” is over-rated. How many smart people do you know who are not especially happy human beings?

Adina intuitively knows and insists upon what is right for her at any given moment – she doesn’t usually care what those around her think about it. She is the round peg and the world is a square hole. When she was younger, teachers, after-school classes and other kids would round out the corners a bit to accommodate her. But as she gets older there’s less tolerance for her slower pace, verbal challenges, extreme shyness and other “unusual” behaviors. The square hole gets smaller.

Yet, when we’re with people who truly appreciate her for who she is, we both relax and I always feel as if we just moved beyond the mundane to a higher plane.  She smiles her beautiful smile and her whole face lights up. She is understood and most importantly accepted. And that feels sublime.