learning to live and love from a new perspective

Happy Thanksgiving

Every year on Thanksgiving morning, a big crowd of grown-ups and kids of all ages come trotting down our street. Many of them are wearing costumes, and they are following a jolly looking man dressed in a turkey suit. It all looks like great fun, but I never knew who was organizing the event.

A couple of weeks ago, there was an invitation on the email listserve from my kids’ school. Come join us for the annual neighborhood Turkey Trot! It listed the gathering place and start time.

Because we were hosting a very small gathering for Thanksgiving this year, I thought it would be fun to begin the day with people. The gathering place was just a few blocks from our house, so at the appointed time my son and I headed over.

The scene was festive. A banner was strung across the street, and people were wearing Thanksgiving Day costumes. A group of teenage girls were wearing their High School sports uniforms, and had on face paint. They were dancing on a front lawn turned dance floor. Then I noticed one of them was wearing a Trump/Pence banner tied as a cape around her neck. I felt my spine stiffen.

My son and I stood on the edge of the crowd for a while. G is eight years old, and he has autism. So, while he likes looking at the colorful costumes, and listening to the music from a distance, he doesn’t like being in the thick of things. I felt awkward standing there, but couldn’t enter the crowd because of G. Nobody approached us, so we just stood.

Just then, I noticed several dogs in the crowd. A couple of them were on leashes, but there were two large dogs who were unleashed. G spotted them at the same time I did. “Let’s stay calm,” I whispered to G. “You just stand behind me. If the dog approaches us, I’ll keep it away from you.”

I could feel G’s body become rigid. The dog came closer to us, and G’s fingers dug into my skin as he clutched onto me. Finally, he couldn’t contain his fear anymore, and he started yelling, “Stay away from me! Get that dog away from me!” The tears were streaming down his face. I got down on my knees, and gripped G in an enormous hug, letting his tears splash onto my shoulders. I whispered in his ear until the dog passed, and G’s breathing returned to normal.

Then I looked up.

A band of teenage boys was standing about five feet away from us. “Did you see that kid?” asked one teen to another. “He’s crying and screaming because of a DOG!” The whole group started laughing, and a couple made fake crying noises.

I took a deep breath and pulled myself together. If G sensed that I was angry or upset, he would lose it again.

“Come on G!” I said in the most cheerful voice I could muster. “The Turkey Trot starts now. Three, two, one, TROT!!!” And with that, we started running, leaving the crowd behind us.

My son is eight years old. He makes funny movements and unusual sounds. He often has big, emotional reactions to things that others can manage more easily. I’ve always been worried that he will be bullied or teased some day. However, yesterday was the first time it’s happened in my presence.

 

Below is the text of my portion of the Inclusion Presentation from last week’s PTO meeting.  It’s my impression that it was well-received by the audience, and I hope it served it’s intended purpose of putting a personal face on the topic of Inclusion.

My name is Alison Lobron, and I’m the mom of S in grade 5 and G in grade 3. My son G has an autism spectrum disorder and ADHD. He has been receiving Special Education services from Newton Public Schools since he enrolled in the Newton Early Childhood Program on his third birthday.

When G was first diagnosed with autism, and later with ADHD, I knew very little about either disorder. I have found the teachers and specialists at Newton Public Schools to be an invaluable resource in learning about how to understand my child’s unique neurological wiring, and how to best support his growth and development.

It is my hope that by sharing with you a little bit about our journey, that it can help paint a more detailed picture of how special education works at Franklin School. I’d like to begin by reading an excerpt from a blog post I wrote in the spring of 2014, when G was in Kindergarten.

Ever since G was a toddler, he has struggled with learning how and when rules apply.  Sometimes, he will over generalize.  If he is told to be quiet in the sanctuary at our synagogue one time (during services), then he will be quiet in the sanctuary always (no matter how loud and raucous everyone else is being).  He doesn’t recognize social cues…  he just remembers that last time we were in this place, he was told to be quiet.

Sometimes he will under generalize.  The other day, he put a hot French fry in his mouth and burned his tongue.  I taught him to look at the steam coming off the French fry.   The steam is a clue that the French fry is hot.  Blow on it first, it will cool off.  After ten repetitions, it seemed like he got it.  Until the next day, when we sat down for lunch and there was steam coming off his Mac and Cheese.  I assumed he wouldn’t put it in his mouth…  as we discussed JUST YESTERDAY that steam means the food is hot.  But I was thinking like me.  To me, steam means the food is hot.  To G, steam means a French fry is hot.  Steam coming off Mac and Cheese might mean something completely different.  So, he pops the noodle in the mouth…  and guess what?  Steam coming off Mac and Cheese is EXACTLY THE SAME as steam coming off French fries.

So how does this play out at school? In order to be successful in school, students need to learn school rules, and appropriate behavior for the classroom, the lunchroom, the playground, etc. We are all parents here. We all know how hard it is to get our kids to learn and follow rules for an extended period of time- like for an entire school day. This challenge is compounded when you have a tendency to over and undergeneralize. Some kids will learn and apply rules easily, and other kids will need more support. This variation of need is addressed by a system known as a Tiered Interventions.

Tiered Intervention works in the following way. There are three levels of support when it comes to teaching expected behavior and addressing inappropriate behavior. The first level of support is referred to as “Tier One”. Tier One supports are for all students. One of the main components of Tier One at Franklin School is Responsive Classroom. Responsive Classroom, when implemented with fidelity, puts in place all the things that most students need. Explicit review of behavioral expectations let students know what kind of behavior is appropriate in the gym vs the cafeteria vs the hallway vs the classroom. I strongly believe this is helpful for all children, but it is definitely true for a child who tends to over or undergeneralize. Morning meetings give students of all abilities the social skills they need to connect with other kids. Specific teacher language that is consistent from the classroom teacher to the lunchroom aide to the principal takes all the guess work out of trying to figure out what each new grown up wants students to do.

All of the Tier One supports are important for G, but they’re not enough. He also needs some individualized supports in order to be successful. These supports come from Tier Two (Show communication log, social story, Social Detective Book). When G was in preschool and kindergarten, he also received supports from Tier Three. At that time, even with all the support from Tier One and Tier Two, G would exhibit some “externalized behavior” – especially non-compliance. As a Tier Three support, his behavior was closely monitored by a Behavior Therapist. (Show some kind of data chart). The BT offered strategies to his teacher and aide, and eventually G developed the skills he was lacking. Because of his disabilities, he will always need some level of support, but it gives me a lot of joy to think about the supports that he no longer needs.

I want to say one more thing about G’s experience here at Franklin, and this is parent to parent. G has made such amazing strides, and has many strengths. But he is also vulnerable. Kids with special needs are about 60% more likely to be bullied than their non-disabled peers. Last year, some of the kids in G’s grade discovered G’s difficulties in learning rules. They created a game I like to call, “Let’s see what we can get G to do.” Most of the things they got him to do were fairly innocuous, like licking the table in the cafeteria. However, one day we were on the playground after school. A group of boys all picked up rocks and made a plan to throw the rocks on the count of three. They counted to three, and all the boys dropped the rocks, except for G. G didn’t realize he was being baited, and went ahead and threw the rock.

Fortunately, G has a strong team. One of the behavioral specialists went into the classroom and did a series of lessons on standing up to peer pressure and also how to be a good friend. The specialists worked in conjunction with his classroom teacher to address the needs of all the students and establish more supportive classroom norms.

G has been well-served by Newton Public Schools for the last five years. I couldn’t imagine what our lives would be like right now, if we hadn’t had access to the dedicated teachers and specialists here at Franklin. I also believe that the Tier One supports that are available to all students here at Franklin are precisely the kind of supports that make a difference for all students and help us build the kind of inclusive community we’d all like to have for our children.

 

 

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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