learning to live and love from a new perspective

I did meet with Ms. A and Ms. S. after vacation… and it was the start of an amazing conversation. To parents of typically developing kids, the world of Special Education must seem very mysterious and confusing. When the administrators tried to assure parents at the meetings that they had taken many steps to address the behaviors within the classroom, the words fell flat. I think that is largely because most people aren’t familiar with the breadth and depth of interventions that can be implemented when trying to address challenging behavior. As a parent who has been a witness to behavior modification plans of all stripes and colors, I could easily fill in the gaps that the administrators left in their communication. But most parents would not have the experience to do this.

What would it take to fill that knowledge gap? How could we change the conversation so that parents of typically developing kids could have some of the same understanding that those of us with special needs kids have?

Ms. A was excited to bring the idea back to her ESP team. The idea was well-received by her colleagues. They started working on an “Introduction to Inclusion” workshop over the summer.

Meanwhile, back in our neck of the woods, our new principal started work over the summer. Wouldn’t you know, the top item on his agenda was sharing information about Inclusion with the parent community. In fact, he planned to dedicate the first PTO meeting of the year to this topic.

And so it is that the pieces started coming together. We met as a team: the new principal, the ESP team, myself and another parent. We brainstormed how to get the message out to the parent community. How to validate some of the very real concerns that came out of last year’s difficult situation, while at the same time reversing some of the misconceptions that had taken root. It was a very exciting process.

At a certain point, I felt compelled to make a decision about whether I wanted to speak at the presentation, or listen as part of the audience. Part of me knew the answer before I’d even posed the question to myself.

As an activist, you often walk the fine line between personal privacy and advocacy. I always think long and hard before I share personal details about my life or my children’s lives. In this case, I decided that advocacy needed to trump privacy. This presentation needed a human face to it in order for our message to hit home. It filled me with trepidation, to return to the same room that had been filled with angry, frustrated parents and share a personal story, but I felt it was important to do so.

I agonized over those meetings for a quite some time. Long after the final meeting, when it was announced that next year’s fifth grade would be broken into four classrooms instead of three, and that extra support from the ESP team would be in place from the beginning of the year, echoes of these meetings still reverberated in my mind.

I agonized over those meetings… but I had no idea how to address the misconceptions and faulty assumptions that had been voiced so forcefully.

Several weeks later, I arrived at a turning point. We were invited into S’s classroom for a Writer’s Celebration. Before the official Celebration took place, we parents observed the teachers walk the kids through the opening steps of their day, including a Morning Meeting. While I had interacted with S’s teachers on many occasions, this was the first time I had seen them in action.

I was amazed and delighted at how talented they were! I studied and tried to implement best practices from Responsive Classroom for years when I worked for Project Aspire. As part of that job, I observed dozens of teachers in classrooms all over Boston and the surrounding areas. The teaching I saw that morning at our neighborhood school was among the best I’d ever seen. Period.

My brain was racing, and I knew I somehow had to capture what I was seeing. I grabbed a piece of scrap paper from the shelf and started taking notes. As soon as I got home that day, I wrote an email to S’s teachers.

Dear Ms. A. and Ms. S.,

 Thank you for inviting us into your classroom today.

 I wasn’t expecting the opportunity to witness/participate in a Morning Meeting.  It was so great!

I can’t remember if I shared all the details with you…  but in my past life I was the assistant director of program called “Project Aspire” (it was a small project based out of Harvard Grad School of Education).  The goal of our program was to support the social/emotional learning of students, and most of our work was based on Responsive Classroom.  I hope you don’t mind, but I took a few notes while I was in your class this morning of all the awesome things I saw.

  • Visual schedule (in words and pictures) that clearly delineated the schedule for the day + expectations for what students should be doing at each juncture
  • A *very* thoughtfully structured reward system, as evidenced by the timer and tracking system on the board
  • Frequent positive reinforcement for pro-social behavior (“Thanks for raising your hand.” “I like how you waited for me to finish.” etc)
  • The students were very aware of the behaviors they are trying to reduce (I heard you say “no blurting” several times.  S informed me that the students are also working on “no side conversations”.)
  • An emphasis on bringing the kids together in community in a FUN way
  • EVERY child was included.  Through your words and actions, you clearly value the contributions of each child….  and you model that inclusivity for the students.

 It’s been quite a challenging year.  As you are aware, there is a great deal of anxiety among parents about what is going to happen in fifth grade.  I’m hoping to be helpful (from the parent end) in channeling some of that anxious energy in a more productive direction 🙂  

 If either of you would be willing to meet with me after vacation to discuss this topic (building a stronger school/parent partnership), I would truly value your input.   

Thank you for all of your efforts on behalf of our children.  I hope you have a wonderful spring break!

 Sincerely,

Alison

I waited anxiously for a response, feeling like I could be on the verge of something very exciting. I didn’t have to wait long. Within a couple of hours, I received this message:

Hello Alison,

Thank you for your thoughtful and kind email.  It is so very much appreciated!  We are so pleased that you were able to notice so many positive things, as we are working diligently to create a kind and productive classroom culture.  We would love to meet with you after vacation.  When is a good time for you to meet?  We are free Monday, Tuesday, and Thursday after school.  

Thank you for taking the time to send this email, it means a great deal to both of us!

Take Care,

Ms. S and Ms. A

I felt like I was standing on the brink of a great divide-  the gap between home and school. And here we were, reaching across the aisle, ready to move forward together.  I couldn’t wait.

Last year was a difficult year in my daughter’s fourth grade class. S was placed in a co-taught classroom. The co-taught classroom is a relatively new model in our district. The way it works is there are two teachers- one general ed and one special ed.   The class is comprised of typically developing students plus a small cohort of children on IEPs. The two teachers work together to oversee the education of all the kids.

It’s an innovative model, and I’ve heard stories of co-taught classrooms working very well. Last year’s co-taught was not one of those classrooms.

There were a variety of factors at play that caused the demise of the fourth grade co-taught classroom. The mix of kids did not work. There were kids in the class who just did not function well together. There was behavior that escalated, and this group of kids just ramped each other up.

The whole situation was disturbing and sad. Ever since her first day of preschool, S was always enthusiastic to go to school. While there are always bumps in the road, S usually comes out of the building at the end of the day with something positive to report. Not so last year.

I did hear from S about various interventions that were taking place in her classroom. A visit from the school psychologist, followed by a visit from the district social worker. We heard from the principal that a special educator from the Elementary Stabilization Program was working with the teachers to try and turn things around. It didn’t appear to be having any effect.

Finally, on a Wednesday afternoon at the beginning of March, we received word from the principal that their efforts to stabilize the class in its current form had not been successful. A plan was being put in place to split the class in two. Each class would have ten students, and two teachers (general ed + special ed). This plan would be discussed in person at a parent meeting on Friday morning.

The day of the parent meeting arrived. It was horrible. Parents were understandably anxious and apprehensive. They were also angry. Our kids had been through a lot. The communication that had come from school was spotty, and didn’t give a full picture of how the breakdown in the class occurred, what interventions had been tried, and how the decision to split the class had been made. There also was no indication that serious planning was going to take place to make sure that the same issues did not recur in fifth grade. I completely understood where the anger and trepidation were coming from, because I was feeling a lot of it myself.

However, what happened in that parent meeting (as well as the three that followed) was devastating. There were many valid concerns that were raised. However, there was also an enormous amount of misinformation and false assumptions that were very hard to hear.

  • I don’t understand why you don’t just pull a kid out of the classroom and suspend him if he’s causing trouble.
  • It seems like our school doesn’t have the resources, and our teachers don’t have the skills, to educate kids with special needs.
  • Why do we use Responsive Classroom? It seems like it is the opposite of what our kids need.
  • Why do we even have these kids with special needs in our schools, anyway? Wouldn’t they be better served in their own school?
  • Why does the school district continue to invest in educating these kids? Is there any evidence that it makes a difference?

Sitting through these meetings was heartbreaking. These parents weren’t pointing the finger at my kid, as he wasn’t in this particular class. However, it was very easy for me to imagine if G had been in a class that went off the rails, that he would be among the students acting out. I couldn’t imagine walking into a meeting where people were talking about my son like that.

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.

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