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.

Special Teens

When is a teen with special needs being a “teen” and when is s/he being “special”?

That is a quandary that many parents of teens with special needs find themselves in. Think about it – teens can be moody, unpredictable, in their own world, extreme in their responses – different.   When you add special needs on top of all that, how is a parent to cope?

I often think that the first sign that my daughter Adina was becoming a teenager was when she refused to let me cut her bangs – starting right after her bat mitzvah. Her beautiful honey-colored, straight hair became a “curtain” that she very quickly realized was handy to hide behind. (Teen or Special needs?)

Adina fell in love with John Travolta, discovering Vinnie Barbarino from Welcome Back Kotter.  She decided to change her name to Vinnie and refuses to answer to Adina – even gets insulted when you use her “real” name. (Teen or Special needs?)

This week she brought a friend home directly from school without checking with me first. (Teen?) She then got tired of said friend after an hour, wanting her to go home already. (Special needs?)

Adina’s immediate response to any uncomfortable situation is to cry. All along I thought that was definitely special needs since I figured she cries because it’s hard for her to verbalize her feelings. (Special needs?) Then someone told me how her typical daughters spend a lot of time crying. (Teen?).

When they enter their teenage years kids with special needs are learning independence and forging their identity just like typical teens. But unlike their typical peers they do not have the resources to cope with the challenges of adolescence. Where does that leave us parents? We try to navigate this tricky territory together with our kids and let me tell you, it aint easy.

Travels with Akiva. Part III

We’ve pulled it off. Naomi and Joe’s wedding. An almost 1000 mile road trip with the whole family to Niagara Falls and back, 2 shabbatot in different places as well as numerous hotels, al fresco meals and hugs and kisses with a myriad of friendly faces. It’s been a whirlwind for Akiva, who’s been sleeping late and has even nodded off in the car on occasion, something he hasn’t done since he was about two years old.

He’s shown amazing resilience and we’ve all had fun. In truth, much more than I truly anticipated before we left. It’s hard to truly know what he’s taken in but he’s aware, I think, that it’s all been a great big adventure and that his world has been expanded beyond its usual boundaries. And only today did he mention the airplane, the ‘bayit house’ which is what we call our home in Jerusalem, and Shalva, the afternoon program which he loves and attends daily after school.

Back in Israel, Akiva’s life is so routinized. That works – for him as well as for us. School, Shalva, quiet evenings at home relaxing after a bath and snack. Bedtime. Life is straightforward and holds few surprises. It’s a blessing for all of us and yet, there’s the rub – his life is so small, too small sometimes. For 2 weeks, he had a huge adventure – new places, new faces, new experiences along with seeing all that’s familiar and dear to him in NYC and Brooklyn. I only wish it wasn’t so complicated. Special tips? Rented a mini van for travel – really a smart idea. Everyone was comfortable and Akiva had his own row. Hotels? Make sure they had a pool for early morning fun before sitting in the car. Snacks? As familiar and happy as possible.

Thank you to the special friends who spent time with Akiva and let us have some fun in the evenings and by day in Brooklyn; Brenda, Elana, Gella and most of all, our dear, Erszi.

See you again soon.

An Act of Kindness

When a frail and elderly person gets on the bus, or enters a crowded room, do you give up your seat?  If someone enters in a wheel chair, do you make room for them?  What about for the young, ambulatory person with special needs?

Our son Akiva, who has Down Syndrome, loves to take buses; he loves to see performances; he loves to go to synagogue.  He isn’t very good at standing and he needs to claim his seat when he gets to a new place right away.  Arriving with him in a crowded space is one of the most stressful things that we, as his parents, experience on a daily basis.  We know that as soon as he gets there, he is 100% focused on where he is going to sit, and he feels very anxious if it isn’t immediately apparent to him where he will find his “place.”  As his caregivers and “navigators,” we feel that anxiety build acutely as we approach with him.
When we do finally arrive with him, the stress reaches a peak.  We say to ourselves: I just hope that someone will see us walking in, see Akiva’s excitement and inability to control himself, and quickly vacate the nearest few seats so we can begin to get him settled and relaxed. We are almost always disappointed, as we wrestle him to keep him on course, climbing over legs and seats, working hard to keep him from touching everyone he passes, stressing about the loud and not so articulate noises he is making.  Even in the place we regularly go to synagogue – a small and friendly community, where most people are kind and understanding to us – we find that people don’t realize that the one thing we need most, the one supreme kindness they can show to us, would be to simply clear out the seats nearest the entrance when they hear us approach.
We try not to be resentful of this.  Though it may be clear to us, people just don’t realize how important it is to us and to Akiva, to have a place to sit as soon as possible upon arrival.  We have no way of knowing how we would react under analogous circumstances – we have trouble remembering a time when we weren’t tuned to the needs of Akiva.  Yet, we know, in fairness to us, and to our peers, who genuinely want to “do good by us,” that we have to find a way to get the message across.  Parents of children with special needs hate to feel constantly needy themselves; we want people to anticipate our needs, so that something seemingly so simple as the entry into a crowded room can be accomplished smoothly, without feeling we are the focus of everyone’s attention.  It is a small, if not obvious, kindness to show us, and can make a huge difference in our ability to cope on a given day.
Thanks to guest poster, Ira Skop.  Read and share with others.

Start with the Playground

The playground. Seems innocuous, the perfect meeting place for kids and parents. Just like you remembered it when you were a kid, right? Not so right, is what I always remind myself especially today after a particular memorable trip to a local and lovely playground in Jerusalem, in Park Gilo.

Set at a high point in Gilo, with shady trees and an impressive choice of activities, we tumbled out of the car with excitement – Akiva, age 13.5 with Down syndrome and PDD, and his 2.5 year old twin cousins, Ziv and Lev and their father, Daniel. The little boys ran ahead, throwing rocks and chatting as they ran towards the slide, swing and fun things that awaited. Akiva came more hesitantly – he doesn’t know this playground and therefore it was unfamiliar to him, almost scary in its newness.

As we walked, I saw a problem in the distance – a basketball court. Akiva is surely a closet LeBron, a would-be Michael Jordan, with the way he reacts to basketball. With the laughter of the little boys fading in the distance as they raced ahead of him, Akiva stopped cold in front of the fence, watching as two boys, maybe 10 or so, shot some hoops with their father. His desire to join the game was palpable but he wouldn’t budge from his place – not even to go inside the court area and sit on stone ledge and watch the action. I say watch the ball play as it would be hard for him to join in even if they would, in theory, be nice enough to invite him.

Akiva doesn’t really have any ball playing skills and worse, despite his size, he doesn’t really possess any playground smarts or know how. He’s an island in the midst of play swirling around him, focusing on what he knows and wishes to do – sort of – at any given time. We stood next to each other – I did walk away for a few minutes, feeling frustrated at my inability to shift him past the oh-so-tantalizing scene – Akiva rocking a bit, putting up a hand as if he wanted to touch the ball, easily 20 feet away from him, separated by a chain fence and a world of difference.

Then, I noticed something amazing. A swing for a kid with special needs. A big kids swing, not a baby swing. Chair like and maybe even Akiva’s size. Akiva used to love to swing until he grew out of the baby swing, probably around the same time we could no longer hoist him in and out, forcing his legs through the holes. There was a reclining swing at Carroll Park, back in Brooklyn and it was a popular ride, comfortable in its position – see, it’s not so bad to have special needs, I would think to myself, watching the line of kids waiting their turn wondering if I should just walk up and say, ‘hey, this swing is for kids like Akiva.’ No matter, Akiva preferred the baby swing as it was, get the theme? familiar.

Slowly, I convinced Akiva to leave the basketball court and make his way over to one of the play areas, which his cousins were about to leave, enticed as they were by the curvy slide and other attractions in the nearby ‘big kids’ part. Akiva went on the merry-g0-round for a bit and then began to speak of wanting to sit on a bench – translation, ‘I’ve had enough of this strange place and I need something familiar.’ I began coaxing him over to the swing, wanting him to see that this was potentially a fun activity and not scary. He balked. Sat down. I encouraged, tried a ‘1, 2, 3.’ Nothing happened. He pointed in a vague direction towards the bench. I tried again. No success.

I lost my cool. Manhandled him as I tried to get him to stand and just look at the bloody swing, sitting there so attractively. He was impervious. And then I noticed something as I attempted to show him that one could just sit down in the swing. The swing had a chain across it – a safety chain of a sort, I supposed, fine if you’re a typical kid who’ll climb in and stick your legs under it, but not fine if you’re a child with special needs who’s not so able and adept. What if you’re a kid in a wheelchair who’s parent is struggling in the first place to lift your flailing arms and spastic legs, wanting to give you a chance at that fantastic gift of air and freedom, space and flight, that comes with a great turn on the swings? Nothing. Nothing is what happens. The chain had no safety latch. The swing, for all of its allure – at least to me – turned out to be cheap and tawdry, disappointing and worse really. More to me than Akiva. I guess he knew that swinging is no longer for the likes of him.

I apologized to Akiva, who was giving me the sad face – he has the saddest face one could ever have – and gathering up our stuff and attempting to regain my cool, we walked over to the other area, sat on a nearby picnic table and watched the kids jump, run, climb and play on the structures. We shared a snack with the twins and their dad, and then walked back to the car after a time. On the way to the car, I noticed a ‘landsman’ with his daughter, an adorable 4-year old girl with Down syndrome. I stopped to speak with her father, who wanted to know how old Akiva is – this, while Akiva pumped his hand and wished this very religious looking guy a Shabbat Shalom – and does he speak Hebrew. I could barely speak in a civil way but gave him my card and told him he should look into Shutaf when his daughter is older. He thanked me and we each wished each other Hag Sameach.

I wondered if his daughter likes the playground as I watched him slide her into the swing, placing her smaller body in with ease and how he’ll feel about the playground experience as she gets older.

I’ve hated the playground for years. The happy kids. The chatting mothers. The sense of a community that I can no longer be a part of, especially as Akiva’s body changes from boy to man – he’s not that big but still – even when his emotional and developmental needs are that of a younger child. But forgetting my own personal angst, why can’t playground spaces really be more thoughtfully designed for all kids – typical and special needs – so that parents don’t have to have their very delicate hopes dashed, over and over again.

This Passover, remember that inclusion starts at home – at our tables, in our playgrounds, in our hearts and minds. Don’t just say it, do it.