Murphy’s Law prevailed or so it seemed at 4am when Akiva woke up at 4am with a major stomach upset. After we settled him back into bed – ours – and cleaned the bathroom and started the laundry, we laid in bed on either side of him, willing him to better health by morning.

Between 7:30-8:00am we had a ‘conference at the mound’ with both older boys – Gabe was home from mechina for the weekend. Ira had already checked the flights and our accommodations. It seemed like we could delay the whole trip for a day – leave Monday and return home the following Monday. I was tired, totally beat and just not sure what to do. Akiva, thankfully, is a healthy boy regardless of his special needs and usually bounces back nicely but there was no way to know how this thing would play out and how many days at home he might need before returning to school. Being sick was not what we had bargained for, of course. When we made these plans, we didn’t want to burden Natan with a sick, younger brother, especially when we’re talking about stomach stuff. Akiva is not fully toilet trained – it’s no small issue, especially when he’s sick.

After much analysis – including conversations with my two sisters –  and thankfully, Akiva woke up at one point so we were able to make a general assessment of him – not too bad, that was the good news – we decided to go ahead with our plans. The big boys felt relaxed overall and Gabe would spend an extra day at home keeping Natan and Akiva company before returning to his mechina program the next day. Natan, although not sure how it would all play out, seemed to feel that it would all work out.

We left at 9:30am, not sure we had made the right decision or not but knowing that Akiva was in capable hands. Natan send regular SMS and email reports and Akiva ended up spending Sunday and Monday home from school – Natan was pleased that Akiva was seemingly bored and ready for action by Monday night, a sure sign of good health.

The skiing? It was wonderful and we missed having all of our boys with us. We noted people with physical disabilities skiing on the mountain and wondered if Akiva might be able to join us on a future trip. We always skied as a family in the US – Vermont resorts were particularly welcoming to us and to Akiva, who still talks about Nisei and Bronwyn, two lovely counselors on two different trips to Killington. We came home to a tired Natan, who’d also hosted two aunts, an uncle, and his grandmother on Shabbat – don’t worry, he didn’t have to do too much cooking.

What’s the moral of the story? We have good kids. Sure, we know that. Akiva does bounce back nicely from illness. We know that too and are grateful. Maybe that sometimes you can forge on ahead even when it all seems impossible and still manage those moments that are so desperately needed in life – like vacation.

Yoni’s face lit up as he described a challenging experience during Shutaf’s Hannukah inclusion camp in late December. “Yoni dealt with a child who was having a tough day and needed to be outside much of the day,” explains Moriah, a social work student and teen advisor. Daily meetings with Moriah and the rest of the teen staff cover strategies for coping with the stresses of a busy day working with 12 active and lively campers, ages 6-14, 75% of whom have some sort of special need. “He wanted to be outside…I also like being outside,” explains Yoni, continuing, “and I saw that it was good for him.”

Yoni, who is 17 and has special needs, is a member of the Shutaf Young Leadership and Ruderman Vocational Training Program in Israel. During the year, this inclusive group of teens – ages 16-21 – enjoys a variety of age-appropriate activities.  Yoni just started the personal safety and empowerment section of this year’s program with El Halev, an organization that specializes in self-defense training for women as well as special populations. In the spring, the teens will take part in a culinary training segment which will include planning, preparing, packaging and selling a food product – all important skills toward developing confident and capable young adults who can successfully navigate in the greater society.

His mother Susan is so pleased that he can take part in the program. “He’s learning and doing practical things and having a good time socially…nowhere else can he get these opportunities,” she remarked. She is delighted that Shutaf has taken an interest in teens with special needs, adding, “he’s pleased and proud to be a counselor.”

Shutaf’s Program Director, Elizabeth Corlin, detailed a conversation she had with El Halev’s trainer, Emouna. “She has already seen a difference in Yoni this year…He’s toughening up and learning how to say no as well as how to whack the heck out of the punching bag,” she said with a smile.” All important skills for this quiet, shy and thoughtful teen. He wanted, needed and deserved more than just going to school and not having social outlets as well as a way of preparing for his future.”

Creating opportunities, learning self-advocacy, making new friends, and feeling in charge of one’s life – in an atmosphere of inclusion and acceptance. For all Shutaf teens – with and without special needs – it’s a fantastic experience.

Every Thursday, as I prepare Akiva for the day ahead and walk through his morning routine I try not to feel too pleased that it’s Thursday.

I pack up his lunch along with his pajamas, a change of clothing and make sure that he has clean socks and a toothbrush while Akiva hums his way through his breakfast of toast and fruit, his ever present iPad playing his favorite tunes or stories. It’s Thursday at Shalva, Akiva’s afternoon program of fun, peer activities and family respite. This year, Akiva goes 5 days a week to Shalva, along with many of his Feuerstein school mates – on a school bus – after school each day. He returns home at 6:30/7:00pm relaxed and happy, after a full day and a tasty dinner at Shalva. Great, right?

On Thursdays, Akiva also sleeps over at Shalva’s immaculate facility in the Har Nof neighborhood of Jerusalem, tucked into his bunk bed with Shimmy, or is it Sendy, in the top bunk bed, a staffer nearby in case of any nighttime needs. On Friday morning, Akiva is bused to school, returning home to get ready for Shabbat at about 12pm to a house humming with pre-Shabbat activities.

Not bad at all. Thursday nights, Ira and I often go out for a late bit to eat, or schedule stuff that isn’t as easy to do the rest of the week when a sitter has to be booked if we both want to step out together and the big boys aren’t around – which is almost never these days. Sometime we just cook for Shabbat and relax knowing that we don’t have to get up at 6:15am on Friday.

I always wonder what time I’d get up on a regular basis if Akiva was a teen of typical development, or, what I like to call ‘ordinary.’ If Akiva was ordinary, he’d roll out of bed – or not – and if I was a nice mother I might slap a sandwich together for him – or not – or maybe he’d just kiss me good bye as I’d lay slothfully in bed until 7am. Hard to imagine.

Instead, Ira and I have a weekly rotation of mornings, based on our gym and work schedules, one of us freed from the morning routine every other day. Mind you, it’s not like it’s so hard. After years of getting up early – in the dark and cold – Akiva’s a pro and quite routinized to the system but it’s still an effort and I confess, I hate it.

Did I say I hate it? After 21.5 years of steady parenting, it’s hard to find a way around this feeling. Is it time to hire the live in? Ira and I often analyze the numbers and what it would mean to have someone in the house – all the time. Great, I think, especially if it meant no morning stress and evenings where I could hop out and do what I want, when I want.

And then, that monster called parental guilt hits. I love my boy. Love his chipper, good nature in the morning and his loving hugs at night before bed. Okay, I get it – I love Thursdays and most importantly, Friday mornings – and am just grateful to Shalva for the parental respite. Getting a break really helps break the parental doldrums. And besides, guilt is just a bore – doesn’t really help work through the real challenges of disability every day.

As I write this, it’s Sunday. Deep breath. Thursday will come soon.

 וכאן נכנס לתמונה “שותף”. עדינה משתתפת בתוכנית “חוקרים” של “שותף” מאז תחילתה בקיץ 2010. מטרת התוכנית לעזור למתבגרים צעירים עם צרכים מיוחדים לעשות את המעבר לשלב הבא בחיים – לראות מעבר לחיים היום יומיים שלהם עצמם ולהבין שהם יכולים להיות חלק מהקהילה הרחבה.

 בקייטנות שותף, ה”חוקרים” נוסעים באוטובוסים עירוניים יחד, מבקרים בבתי עסק, מתנדבים ולומדים כישורי הגנה עצמית – מסתכלים יותר מקרוב על העולם מסביב. הנסיעה בקבוצה עם חברים וצוות של “שותף” היתה ההקדמה המושלמת עבור עדינה לחוויה שעלולה להיות מפחידה בפעם הראשונה – עבור כל ילד. וודאי, היא נסעה באוטובוסים עירוניים בעבר יחד איתנו אבל ב”שותף” היא למדה לשלם על עצמה ולהחליט לעצמה איפה היא רוצה לשבת או לעמוד – בלי שאמא מובילה אותה.

 רוב הילדים בכיתה שלה בחינוך המיוחד נוסעים באוטובוסים ועדינה החליטה שהיא מוכנה לנסות. התרגשתי מהיוזמה שלה והייתי מוכנה לעזור לה להגשים את המשימה. ליוויתי אותה חמש פעמים במסלול בית ספר-הביתה והיא היתה מוכנה לנסות לבד – מצויידת היטב עם כרטיסיה וטלפון נייד. מאז היא מצליחה בצורה מרשימה – היא לא מתרגשת מדחף ההמונים ובטוחה לחלוטין מתי ללחוץ בכפתור “עצור” ואיפה לרדת.

הדאגה העיקרית שלי היא הבלתי צפוי ואז זה קרה. השבוע עדינה פספסה את האוטובוס בפעם הראשונה. יש לה את הקצב שלה ואני טרם גיליתי איך לזרז אותה – זה פשוט בלתי אפשרי. נחשו מה היא עשתה. התקשרה לאמא. המהלך הכי נכון שיש. זה נכון שהיא בכתה והתרגשה אבל היא פתרה בעיה וטלפנה. יכולתי להרגיע אותה בטלפון ולהסביר לה שהיא צריכה להרגע ולחכות לאוטובוס הבא. אחרי עוד שלוש שיחות, היא היתה כבר על האוטובוס – מאושרת שהתגברה בהצלחה על המכשול והיתה מאוד גאה בעצמה. תשאלו אם היא תלך יותר מהר לתחנה בפעם הבאה….אודיע בהמשך.

That’s where Shutaf comes in. Adina has been part of the Shutaf Teen Explorers’ program since its inception in summer 2010. The purpose of the program is to help young teens with special needs transition into this next stage of life, to see beyond their own, everyday worlds and realize that they can be part of the bigger community.

During Shutaf camp sessions, the kids take city buses together, visiting places of business, volunteering, learning self defense skills – taking a closer look at the community around us. Taking the bus together with her Shutaf friends and staffers was the perfect introduction for Adina to what can be a scary first time experience for any kid. Sure, she had taken public buses before with us but with Shutaf she learned to pay for herself and figure out where she wanted to sit or stand on the bus – without Mom taking the lead.

Most of the kids in her special ed. class ride the city buses and Adina decided she was ready to give it a try. I was excited by her initiative and ready to help her make it happen. I accompanied her on the school-home route five times and then she was ready to solo, equipped with a bus ticket and a cell phone. She’s been acing it – handling the crush on the bus calmly and completely sure in her knowledge of when to push the button and when to get off the bus.

My only concern is the unexpected and then it happened. This week Adina missed the bus for the first time. She has her own pace in life and I’ve never figured out how to rush her – it’s simply impossible. Know what she did? She called mom. The absolute right move. Yes, she was crying and upset but she problem solved and made the call. I was able to talk her through it, making her understand that she has to relax and be patient and wait for the next bus. Three calls later, she was on the bus – thrilled to have successfully managed the setback and quite proud of herself. Will she walk to the bus stop faster next time? Stay tuned…

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.

So, back to Welcome to Holland. We had packed and prepared for a journey which ultimately was different than what we expected. By the time we pulled in to Newark at 7pm EST, we were all beat, having woken up at about 5:50am to get ourselves ready for a 7am cab to the airport. The snacks were eaten, extra sandwiches were done, and everyone’s nerves, especially mine, were jangly. All those DVD’s and music downloaded to the iPad? Just didn’t work over the long flight. Need a better plan for the way home or maybe tranquilizers – for me, that is. 

Lessons learned? Always ask for extra help. In the airport, we checked in on the business line. Nice. Then, when it was time to board, I went right up to the desk and was ushered in by a side door. Also nice. On the airplane, nothing special in terms of help from flight attendants. But lots of nice people in the aisles who didn’t react too badly to Akiva touching their heads and saying hello as he marched by to the bathroom – and he went many times. With success I might add. When we staggered into the arrivals area in Newark, someone brought us up to the front without even asking. I was reminded of coming back from Israel in 1970, the whole family and the customs officer looking over my tired parents – we’d been in Israel for 6 weeks – and saying ‘I imagine you have nothing left to declare.’ Then, my biggest moment came at the taxi stand. There were a lot of people waiting in line. I couldn’t even imagine waiting there with Akiva, who was tired, hungry and just needed to be ‘home.’ I explained to the dispatcher that I was traveling with a child who has special needs and that we’d just come off of a long international flight. And you know what? He put us on in the next cab.

Akiva is so pleased this morning, as he sat up in bed at 4am going over all the high points of the past 24 hours – taxi, airport, airplane, food on the airplane, etc.

Today, we’ve planned a happy day for him. Pizza with our dear friend and his, Erzsi, a trip on the subway and dinner with good buddies Bunky and Elisabeth. All is good.

So, armed with toys, music, books and movies on his iPad, as well as a laptop and pile of dvd’s to amuse him, we wait here in the airport to board. The airport was fortunately quiet this morning and we left on the early side so as to avoid lines. That worked well as did asking to check in on the business class line so that we didn’t have to wait too long with him – he was very excited and ready to touch and shake hands with everyone in the airport. The airline was amenable and even asked if we needed any other special services or assistance – good to keep in mind for a future trip once I see how this one works.

We have sandwiches and snacks but the big issue is surviving until we board. He just doesn’t understand why we haven’t boarded yet.  Okay, I get that. I’m ready to board too.

Now, off to buy some pretzels and a small toy or treat to surprise him with on the plane. Toileting has gone off successfully so far this morning  - that’s a relief too. Hopefully that will continue on board.

Asking for help is always a challenge as well. As a parent that’s always the biggest issue. I hesitate to ask for help as I’m sure it will all be okay and it goes against my American nature but I’m also growing convinced that asking helps people be aware of your needs. I’ll let you know if I’m good at that. Happily I’m traveling with my middle son, Gabe, who’s a good ‘asker.’ Wish me luck.

The emotions are overwhelming. We made Aliyah in 2006, shortly after Gilad was captured. His fate has been linked with our first years of living here in Israel. He was only 19 when he was captured and I’ve often wondered how he’s coped with captivity. I guess we’ll eventually hear some of his experiences but it almost doesn’t even matter and he shouldn’t feel obliged to tell us anything. We know it wasn’t easy. We know it was lonely, and we can only imagine the personal pain and suffering of the past 5 years – for him and for his family.

I have tremendous respect for his family. I’ve never witnessed such devotion. They made Gilad’s life and freedom their goal and cause these past 5 years. I can only imagine their bone-deep exhaustion. May they all heal…together.

As for the cost, it’s painful – beyond so, especially for families who lost loved ones. I won’t analyze the politics and the potential what-ifs but I’m glad that the government made this happen. Gilad was my kid. My kid went in and out of the army while he was in captivity. My kid came home. Gilad needed to as well.

Enjoy the celebration.

The day was cloudless with an endless blue sky. Everyone talks about that but it’s such a memory of that day, a fall day in NYC. The garden door was open, the oatmeal in process, the big boys downstairs getting dressed. We intended to bike to homeschooling soccer that day -at the fields of Stuyvesant High School, directly in the shadow of the Twin Towers. A large sound shattered the quiet of the morning. I remember looking up and assuming it was a truck backfiring or some big city noise that was most likely innocuous. When the phone rang about 20 minutes later, after a 2nd large boom, I knew better.

One always thinks of the strange lucky things of a day like that. That Ira didn’t go to the South Tower to do work for Aon, a client. He also could have gone to the WTC concourse to do his banking or pick up a morning snack – as he claimed he was planning on doing that day – but he didn’t. Or, the other countless stories I heard – “I was late that day because I voted,” or “I dropped my kids off at school and missed my usual train,” or, “I don’t get to work until 9:30.” That was the mistake of the terrorists. The hedge fund men and women were the early risers, at work by 7:30 like Akiva’s therapist’s husband, Steve or another woman I knew whose husband died that day. The rest of the crowd, like most of NYC? At work after 9:00 or so. Just think of how many more people would have died had Bin Laden and his guys known that.

I remember the family whose kids – they attended a local Jewish day school near our house in Brooklyn – we hosted that day, their parents were unable to get across the East River until the late afternoon when the subways started up again. We ate snacks, watched videos and even threw a softball around with their grateful dad when he arrived to get his kids. My boys were sad for so many reasons but in particular, they remembered that we ourselves had planned a trip to the top of the Towers, an annual not-back-to-school-event for the Thursday of that week. Imagine that.

And then there was the ash, and the smell. The burning, acrid, nasty tires-burning-odor that filled our nostrils for months after 9/11. It was a swirling cloud of grief, of memories, of people’s essences and personalities that peopled that very unhealthy and unnatural smell. Ira’s cough which developed from the gunk in his office and downtown – the WTC cough the doctor called it. Flying bits of papers in the garden; a memorandum, a fragment of a note, some person’s mundane desktop aflight in the days after the towers fell. The odor weighted us all down along with our sadness, our relief and the repeated stories of the day that we told to each other, sharing our grief, sharing our loss, almost wishing for a sadder story or closer experience to the death and mayhem.

I hate looking at images from that day, needing no reminder of the fearful specter of the tallest buildings that I knew falling from their place in the sky, leaving a downtown shrouded in dust and ash. I need no reminder to think of the people who died that day and the terrible photos that lined the city streets for months afterwards, Looking for Him, Looking for Her, each one a testament to a life lived and lost. And they felt so lost – their bodies missing and incomplete, blasted apart in the violence of the days event.

I think of the good. The time spent with my kids in the year following, giving up work to be close to those who mattered the most. I didn’t realize then why I had done it but it was a good decision. I think of NYC banding together, people showing their kindness, their caring and their will to be normal in the face of something truly abnormal.

We were all included that day. Nobody was left out because of race, wealth, cultural ethnicity, religious inclination, and disability.