learning to live and love from a new perspective

Bike Camp

“When do I get to…?” has topped the list of frequently asked questions this year. After years of being dragged to his big sister’s activities, G is finally starting to develop an awareness that there is life beyond his iPad and activity books. And so it begins. “When do I get to go rock climbing? When do I get to do gymnastics? When do I get to learn how to ice skate?”IMG_2118

Part of me is thrilled. I’m so happy that he’s starting to be aware of the many activities his sister participates in. I’m also delighted that he views himself as capable of learning to rock climb, learning to do gymnastics, learning to ice skate. Part of me is sad. I’m aware that rock climbing, gymnastics, ice skating, horse back riding, playing softball and every other physical activity under the sun come easily to our adventurous, athletically gifted daughter. For G, reaching physical milestones has always been more of a challenge. I think back to his first wobbly steps, finally achieved on his second birthday, after over a year and a half of physical therapy.

And so, I meet the barrage of “When do I get to….?” queries with mixed emotion. Delighted he wants to try something new. Sad, knowing it will probably be hard. But most of all, determined to find a way to help him achieve his goal.

His latest question, “When do I get to learn to ride a bike?” hit me the same way. The last time we put him on a bike, he was absolutely uninterested. As long as his dad kept full body contact, with one hand on the bike seat, one hand on the handlebars, and David’s big shoulder leaning against G’s small one… everything was fine. But the second contact was broken; G burst into tears and demanded to get off the bike. Putting G on a pedal-less “balance bike” generated similar frustration.IMG_4323

Clearly, the traditional methods of learning to bike were not going to work for G.

However, my mission was clear. I set into full-on research mode, and discovered that there was to be an adaptive bike camp offered in the next town over from us for one week in late August. Somehow, I managed to clear my own schedule of work, personal, and family obligations for one week, find an alternate activity for S, purchase a bike for G, and learn how to use the bike rack on our car so I could transport the bike myself.

It felt like a lot of work, and I will readily admit I was quite grumpy about it.

IMG_4321I was quite grumpy about it…. Until we arrived at camp on the first day. Early on Monday morning, we walked through the doors of the local high school. Immediately, two smiling young women greeted us. They introduced themselves as Charlotte and Tracy- G’s biking buddies for the week. Charlotte and Tracy escorted us into the gym. The festive atmosphere blew me away! Upbeat music piped through the loudspeaker system filled the air. No less than thirty volunteers were busy greeting the eight nervous soon-to-be bikers, while four bike camp staff circulated amongst them, checking helmets and measuring legs. A fleet of shiny bikes in all shapes and sizes were parked at the edge of the gym.

IMG_4319Within minutes, the bike camp staff had expertly placed each camper on a perfectly sized adaptive bike. The front of the bike was the same as a regular two-wheeler, but instead of a wheel on the back, these bikes had a wide, tapered roller. Throughout the week, the campers progressed from the big rollers, to smaller rollers, and eventually to a regular two-wheel bike.

For the next hour and a half, the campers did laps around the gym on their adaptive bikes, accompanied by their volunteers. I spent the time on the sidelines, taking pictures and chatting with the other parents, some of who had travelled from great distances to bring their child to this camp.

When the time was up, G sadly said good-bye to Tracy and Charlotte. For the rest of the afternoon and evening, he spoke about nothing except bike camp. “Did you see me? Did you see me on my bike? I was riding so fast. I was like a blur! Tomorrow, I’m going to do it again. Today, I had one tune-up and moved to a smaller wheel. Tomorrow, I might have TWO tune-ups, and move to a smaller wheel, and a SMALLER wheel. Did you see me? Did you see me?!?”

IMG_4334As the week progressed, the size of G’s training wheels decreased, and his confidence blossomed. Every day, he bounced out of bed and asked, “Is it time for bike camp yet?”

For me, it’s been thrilling to watch him gain confidence and skill.   It’s also been very meaningful to be supported in this endeavor by an amazing group of volunteers. Every day, G and his fellow campers have been riding laps around the gym. Every day, a team of volunteers has been running alongside of them, cheering them on and encouraging them.

These are the ups and downs of parenting a child with special needs. Something as small as teaching your child to ride a bike requires a monumental investment of time, money and energy. It requires research, resources, and emotional stamina. That’s the down. But time and time again, I find the down is outweighed by the up. The experience of watching my child try something new and succeed. The camaraderie of sharing the experience with other parents of kids with disabilities. And most of all, the beauty of seeing a village come together- a team of experts, volunteers, and parents- working towards the common goal of supporting our kids is absolutely amazing.IMG_4344

Thank you, iCan Bike Camp, for your awe-inspiring work.

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Scenes from the Summer

It’s hard to believe, but I’m two weeks in to my second summer as a Yoetzet (parent liaison) at Camp Ramah New England.  I work with the youngest campers, who stay for a two week mini-session.  My first group of campers went home yesterday, and a new group will arrive tomorrow.  The time is going so fast.  I hate to pull myself out of the “now” to write a blog post…  but I also don’t want to miss the opportunity to record my reflections on this very special experience.

So, here are a few images and reflections on the past couple of weeks at Camp Ramah.

IMG_3918I feel so grateful to start every day surrounded by the sights and sounds of nature.  The first sound I hear when I wake up are birds chirping outside my window.  I walk through camp, absorbing the stately beauty of the trees, the bold expanse of the sky, and the magical twinkle of the lake.

The daily schedule begins with Tefillot (a short prayer service), which each age group (edah) does at the same time, but in different locations.  Most days, I am with my group–  and it’s such a fun way to start the day, singing prayers with my eight and nine year olds.  Other days, I don’t make it to Tefillot on time.  I like this just as much, because I get to walk through camp, and hear the prayers of each group that I pass, ringing out with joy-  a group of nine year olds with their spirited, cheerful shouts erupting from a screened-in pavilion, followed by the lower, but just as boisterous chants of the eleven and twelve year olds who get the prime prayer spot on the tented porch overlooking the lake.  A cacophony of traditional melodies plus updated tunes, combined with ancient words, intertwined with personal reflections.  It’s like walking through a patchwork quilt of music, hope, poetry and dreams.

The rest of my day consists of traveling throughout camp, checking in on various campers, and attending different types of meetings.  Planning meetings, meetings with the other parent liaisons, meetings (both formal and informal) with the counselors from my edah.  My role as parent liaison is interesting, challenging, fun and all-consuming.  If it was just a “regular job”, it would be satisfying work.

But it’s not a “regular job”, because it’s tied in to the mission of camp, which is to provide an outstanding, transformative Jewish experience for everyone in the community-  over the course of not just one summer, but over the course of many years.  I love that.  I love the impact that camp has on my campers and my staff.  I love the impact that camp has on me and my family.

My cIMG_9852-2hildren love camp.  The are nurtured, loved, cherished and challenged at camp.

Camp Ramah helps them find their best selves.

 

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My family thrives at camp.  We have time to grow ourselves, and time to come together.  We have the opportunity, away from the pressures and responsibilities of the outside world, to connect to one another in a deeper way.  It’s so good for us.

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When I was a classroom teacher, we used to talk a lot about creating “shared experiences” in order to create classroom community.  Do a read-aloud as a whole class, go on a fun field trip, have a class pet so that everyone has the chance to care for this creature together.

Being at camp is like participating in one enormous, shared experience…  but one that doesn’t just last for brief moment of a school year.  It spans over decades, and even generations.

My favorite moment so far this summer was at the first Havdallah of camp.  Havdallah is the ceremony that marks the end of Shabbat, and the transition into the new week.  According to tradition, Shabbat is over when you can see three stars in the sky.  A group of boys from my edah had been hanging out on the porch of their bunch for fifteen or twenty minutes.  All of a sudden, they started yelling and pointing.  “Stars!  Stars!  There’s one…  two….  three!!  It’s time for Havdallah!!”  We rounded up the edah, and made a huge circle on the grass in the middle of the field.  Candles, grape juice, spices and song.  I looked around that circle, trying to soak it all in.  The faces of the campers, all of whom were experiencing Havdallah as campers for the very first time.  The faces of the counselors, many of whom had grown up at Ramah, but were experiencing their first Havdallah as staff.  Eight year olds and eighteen year olds.  Ten summers can go by in a flash.

I vowed to appreciate every summer that I’m fortunate enough to spend at camp.  Ten summers can go by in a flash, and I want to cherish each and every one.

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Disclosure

G turned eight three weeks ago. With this milestone, has come an increased awareness. Slow at first, but picking up speed.

IMG_3342He’s reported to me many times in the last few months that something feels difficult for him to do. “Please stop yelling at me,” I’ll ask him, in as neutral a voice as I can muster while being screamed at for leaving a trace of peel on his apple slices.

“I’m doing the best I can.” He’ll reply, as genuine tears begin to form in his eyes. “My brain is saying ‘don’t yell’, but my voice isn’t listening. It’s hard for me.”

On a parallel track, G has had an increasing interest in his Social Thinking
books. Ever since he was in preschool, his teachers have used the Social Thinking curriculum as a tool to support his interpersonal skill development. Recently, I’ve purchased a number of books (and games, and posters, etc) for G to have at home. He loves reading the books and studying the characters. He also likes reading the books’ introductions- all of which describe Social Thinking as a curriculum that is beneficial for children on the autism spectrum.

And so, G was sitting on the couch a few nights ago, reading the introduction to one of his Social Thinking books. In the introduction, it stated that the book was designed to support the development of social pragmatic skills for those with deficits in this area, such as children with autism.

G was reading to himself, the words barely audible. But then, he repeated the last few words out loud. “Those with deficits in this area, such as children with autism.” He paused, his expression twisted with bewilderment. The word autism was familiar to him. He’d heard it before, but he didn’t know what it meant. A new awareness was seeping over him. He looked at me, questioning. “Children with autism? Mom, do I have autism?”

I froze. Deer in the headlight kind of frozen. But luckily, only for a moment.

“Yup!” I responded cheerfully. “Yup, you do. Do you know what that word means?”

G shook his head no.IMG_3341

“It means that your brain can do all kinds of amazing things. Your brain is really good at lots of things. Can you tell me some things your brain is good at?”

It doesn’t take G long to respond. His brain is good at LOTS of things. “Math. Reading. Science. Imagination.”

I reply, “Yes, that’s true. Your brain is really good at all those things. Your brain is also really good at remembering things- even if you only see or hear them one time. That’s all part of your autism.” I let that sink in. Then I continue. “Now, are there any things your brain is not so good at?”

This question is harder for G to answer. He’s quiet, so I step in. “It’s hard for you to remember the rules sometime, isn’t it? Like to know what is expected or unexpected behavior?” He’s watching me, quietly nodding. I continue. “It’s also hard to have a conversation sometimes, right? Like to think of the right words to say?” Again, he is nodding. “That’s part of your autism, too. Would you like to watch a video to learn more about autism?IMG_3382

I promised him we could watch a video at bedtime. In the interim, I previewed a few clips on You Tube. Most of the clips I could find were about kids who had a sibling or classmate with autism. The focus of the videos was to explain that child’s (strange) behavior to others. Nope. Not what I was looking for. I found one video where the main character was a 13 year old girl with autism. She explained in a straightforward manner about the great (and not so great) ways her autistic brain functioned.

I promised myself I would continue the search for useful material, but decided to show the clip to G as a starting point. He seemed to feel mostly satisfied with what he saw. There was one upsetting part. There was a graphic of 68 little tiles. 67 of the tiles were white. One of the tiles was blue- representing the 1 in 68 kids who hav autism. “What is the blue tile, mom?”

Even as the words were coming out of my mouth, I was starting to anticipate their impact, “The white tiles are kids who don’t have autism. The blue is a kid who does have autism.”

With that, he burst into tears. “Why do I have to be the only one? I want to be like everyone else!”

Oh, my poor heart. How it ached to see him cry like that. Someday, he will know that there are many, many blue tiles out there, just like him. Someday, he will know that there really is no such thing as a plain white tile. Everybody’s brain is unique. Some brains have ADD, some brains have off the charts IQ, some brains have epilepsy, some brains have photographic memories. Some brains are artistic, socially savvy, verbal, non-verbal, visual, introspective. Some brains are a combination of all of these. It’s not just “autism” or “not autism”.IMG_3383

But this is all information for another day.

I close my computer and give my boy a big hug. “I love you, G.” I whisper into his sweet-smelling hair. “I love every part of you. I love your silly jokes. I love your awesome smile. I love your bounciness. I love your amazing math smarts. I love your squeezy hugs. I love your autism. I love you.”

It’s a relief to have this particular conversation out of the way. It’s my job to help G feel comfortable and proud of who he is. It’s my job to help him find his tribe- both those with autism, and those who don’t have autism. It’s my job to bring others into our world, and help them understand G- who he is and what he needs. I think this job will be easier now that G knows he has autism.IMG_3384

I anticipate many more conversations in the future- both easy and challenging. Through it all, I am proud of my boy and proud of the thoughtful, independent, self-aware person he is becoming.

 

 

 

 

 

 

 

Do What Only You Can Do

Our community has just suffered a terrible lost. Gina Fried, a long-time teacher at our Religious School, and wife of our Rabbi passed away on Sunday after a long battle with cancer.

Gina wasn’t just any teacher. She was the kind of once-in-a-lifetime teacher who inspired all those around her. Gina communicated to her students, through words and actions that she valued them and that she believed in them. She empowered her students to find their own voices, and discover their own gifts, so they could use their gifts to make the world a better place.

I am grateful that I had the opportunity to be Gina’s colleague at our Religious School for six years.

Gina died on Sunday. The funeral was yesterday (Tuesday). About mid-day on Monday, I came to the realization that I had neither the time nor the emotional capacity to adequately prepare for Religious School and also attend the funeral. I felt conflicted and bitterly disappointed.

I went to sleep on Monday night feeling totally crappy. After tossing and turning for several hours, I fell asleep. And then I began to dream. My dreams were a compilation of an educator’s worst nightmares. All teachers know that when you’re super-organized and well-prepared for a lesson, that it has a better chance of going well. My dream was the exact opposite. School started. Nothing was prepared. Everything went wrong, including bad words written on the white-board in PERMANENT MARKER, a game of Monkey in the Middle with me as the monkey, and a small fire set in the kitchen that resulted in char-broiled hamentashen.

Just as I was successfully putting out the kitchen fire by dumping a bottle of Manishevitz on the last of the flames, I woke up.

As I drifted back to consciousness, I heard Gina’s voice. And in her completely direct way, with a mix of love and irreverent humor, she said to me exactly what I needed to hear. “You know, Alison, I don’t need to see your butt in a seat at Mishkan Tefillah to know that you are thinking about me. You go do what only you can do today.”

Religious school was lovely yesterday. Our Director of Congregational Learning led a short assembly. The kids who had been to the funeral shared their experiences. Other children spoke about their experience having Gina as a teacher. Still others didn’t know Gina well, but shared stories they had heard from their parents. We sang “Eli Eli”– a song that talks about how things (and people) can live on in your heart. After that we moved on to some super fun Purim activities. I’m happy to say that none of the things in my dream came to pass, and the hamentashen were delicious. I felt privileged to help create the space for our kids to come together yesterday- both in seriousness and in fun.

As for me, I know that Gina’s legacy of empowering people to use their gifts to make the world a better place will live on. Starting with me.

You are an inspiration, Gina. You will be missed.

Just So You Know

We are taking a walk on beautiful Saturday morning. Out of nowhere, G initiates a conversation.

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G: Just so you know, God does not exist.

Me: Oh really? How do you know God does not exist?
G: Well, I can’t see God. And I can’t feel God.

Me: You can’t feel God? Not even in your heart?

G: You can’t feel anything in your heart. Your heart is a muscle, and it has blood in it, not feelings. Just so you know.

Pause

Me: Does love exist?

G: (looking at me as if I’ve just sprouted two heads). OF COURSE love exists.

Me: Oh, really. Can you see love?

G: No.

IMG_2185Me: Can you feel love?

G: No.

Me: Well, if you can’t see love and you can’t feel love, then I guess love does not exist. Just so you know.

Pause

With one swift motion, G envelops me in an almost bone-crushing

hug.

G: I love you, mommy!

Me: I love you, too!

Pause


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G: Just so you know, God does not exist.

Reentry

Camp is over. We are back at home. Back to grocery shopping and driving carpools, folding laundry and cooking dinner. In some ways, 051-DSC_4473it’s nice to be home. We have air conditioning here, and comfortable furniture. But being away at Camp Ramah was an amazing experience. I learned during the first week at camp, that the word “ramah” means a high place, like a mountaintop. The motto for camp is “Elevate Your Summer.” This motto rings so true for me right now, as I re-enter the real world with both its creature comforts and also its mundane responsibilities. I look forward to next summer when I can ascend to that high place again.

Before I fully reenter my real-life world as a mom and teacher, I want to take one last look at the experience we had as a family this summer. I’ve spoken about my job. I’ve also spoken about how much S thrives at camp. I want to tell you a little bit about G’s experience.216-L2250071

This summer, as I struggled with the decision over working at Camp Ramah for the summer, a huge piece of the puzzle was what it would mean for G. At first, I wasn’t sure that bringing G to Ramah was a good decision. The childcare program for staff kids (called “The Gan”) sounded wonderful… but intense. The kids are dropped off right after breakfast and stay with The Gan all the way until dinner at 6:30. They have a full roster of activities: from sports to arts and crafts, Jewish studies to swim lessons. I worried that G wouldn’t be able to keep up. That he would go to all of the activities, but have trouble participating. That he would spend the summer on the sidelines.106-L2250585

In the end, the highlight of the summer was watching G absolutely thriving in the Gan. Everywhere I went in camp, I saw G with his friends from Gan. Every time I saw him, he was smiling, laughing, and interacting. I saw him playing soccer. I saw him at his two electives (cooking and outdoor cooking). I heard him initiate a conversation in Hebrew with his Israeli swim teacher. I saw him walking from the dining hall back to the Gan’s meeting place. One day, I saw him racing with a friend, then they stopped to watch a frog hop across the road.  Once their amphibious pal made it safely to the other side, G’s buddy said, “Come on, let’s go!” and grabbed G by the hand. The two of them raced off together.

It was such a joy to watch G be a regular kid at camp. He received a lot of support. The head of the Gan ran a very structured program, and created a wonderful environment for all the kids. The camp provided the Gan with an additional staff person to be a support for G. The staffer, A, was a young man in his mid-twenties whom we had met several times at Tikvah Shabbatons. It was a great match, and A quickly became one of G’s favorite people in camp.019-L2260635

Now, back in the real world, G will spend the rest of the summer the way he’s spent the last few summers. Extended School Year services (a “camp” offered by the school district where he will continue to work on his social skills and pragmatic language), some behavioral therapy at home, a week of social skills camp, one week of science camp (which might be good, but also might be disastrous) and a lot of “camp mom”. It’s possible that he’ll enjoy an activity or make a friend. But I don’t anticipate seeing the kind of head to toe joy I witnessed these last few weeks at camp.

Thank you to all our friends at Camp Ramah for making this such a wonderful experience for G.photo

Updates From Camp

Updates were promised… and so, here they are.

My first week away from home was staff training week at Ramah. It was intense. Camp Ramah is enormous. There will be close to 1000 campers here over the course of the summer. In order to make the camp function, there will be somewhere in the order of 300 staff members doing every job imaginable: cabin counselor, Jewish studies instructor, lifeguard, nurse, maintenance… the list goes on.   And yet, somehow, in the space of one short week, we were brought together as one community (Camp Ramah Tzevet) with a common task (delivering an excellent Jewish summer program to the children in our care, making it fun, and keeping them safe). As a Jewish professional and as an educator, I felt inspired many times during the training week. I felt a sense of responsibility to pass that inspiration on.

And then the campers arrived.

My job keeps me busy every hour of every day. I carry two cell phones: my personal phone, plus the phone issued from camp. On my personal phone, I communicate with the other members of my staff- mostly by text. (“Jennifer needs to go the infirmary to have her wrist checked by the doctor.” “Have all the kids written home today? I need their letters before lights out tonight.” “Michael looked sad during swim class. Do you know what’s bothering him?”). When my camp phone rings, I know it’s a parent calling to ask me about his/her child.

The pace of the job is intense. Every day literally feels as if it is a week long. I remember something that happened this morning, but it feels as if it happened six or seven days ago.

The job is physically demanding. It is a quarter mile from my bunk and my campers’ bunks to the part of camp where the dining hall, infirmary and social hall are. I make the walk (round trip) four or five times a day.

The learning curve of this job is STEEP. In order to do my job, I’ve had to quickly form relationships with co-workers all over camp. I’ve had to figure out how to access the technology I need (set up my voicemail on my camp phone, navigate the “campminder” database for accessing camper files, etc). I’ve also had to figure out all the systems in camp (how to clean up after meals, how to get a letter mailed, how to sign out of camp on a day off). For the first two weeks, I was trying to absorb so much new information, I thought my brain was going to burst.

Do I like what I’m doing? Overall, the answer is yes. I love the challenge of calming an anxious parent or finally getting through to a child who is homesick. I love strategizing with the counselors on my staff, and seeing them implement the ideas we came up with.

The hardest work I do is around inclusion. Addressing the needs of kids with special needs is challenging in any environment, but it’s particularly challenging at camp. One of the things that makes camp so special is the opportunity for kids to grow in independence and to figure things out themselves. But for the kids who need structure and routine, the laid-back, “see if you can figure it out” atmosphere doesn’t always work. It’s my job to help build a bridge between what the inclusion kids are able to do, and what they are expected to do at camp. Sometimes that means helping them to learn a new skill that they need at camp and sometimes that means creating an accommodation for them. Creativity, cooperative problem-solving, and flexibility are all essentials in the process. The most rewarding moments so far have been witnessing my inclusion campers overcoming hurdles that seemed impossible on day one, but by day six or seven they can navigate with ease.

So, what’s my overall assessment? It took about three weeks to escape the feeling that somehow I was doing my job all wrong. For three weeks, I constantly felt behind the eight ball, like I was running around putting out fires, rather than scanning the horizon and effectively preventing the fires from starting.

But, my first group of campers went home on Sunday. I had a day off on Monday, and came back to camp rested and ready to greet the new group of campers on Tuesday. Somehow, with the arrival of the second group, I’ve turned a corner. I no longer feel like I’m playing catch up. I can think proactively about these kids and what they need from me in order to make their experience at camp fun and exciting.

Now, with a scant ten days remaining of my time here, I’m finally getting the hang of it, and I’m finally starting to relax and enjoy. I’ve found myself laughing and smiling quite a bit the last few days.

Last night after dinner, the Israeli dance music started playing over the loud speaker. Three hundreL2210594d campers rocketed off their wooden benches, and the dining hall erupted in exuberant, joyful energy. G whispered excitedly into my ear, “I know this dance!” And for the first time all summer, G and I joined the crowd on the makeshift dancefloor. A moment later, S appeared by my side. And there we were, the three of us, caught up in the crowd, dancing, singing and smiling.

It’s a hard job. It’s tiring. Some days I feel emotionally drained. But there are moments of such immeasurable beauty and connection. I feel like I’m doing something important, and that I’m contributing to something larger than myself. And, I’m going to come home from camp with lots of great stories to tell!

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