Full Circle

Preface

 

August 2007

Ethan 5 greenJust hear them out, Meg.” My husband John gently coaxed me to attend the meeting with Ethan’s principal, guidance counselor and gym teacher three weeks before school was in session. Over the summer our eldest of three had turned five, about to start Kindergarten at a new school. At the end of Spring, I had purposefully written a letter to the school’s principal, advising her of the fact that, like his mother, Ethan was born with only one finger on each hand (with his feet similarly impacted). Convinced that the letter would be both informative and constructive, I carefully had explained that despite Ethan’s physical difference, he would maneuver well in class, at recess or quite frankly anytime at school without any extra intervention.

However, to my dismay, my letter prompted the school administrators to request a meeting to discuss Ethan and what his specific special needs would be so the school could best prepare for his arrival. Noting that my letter had clearly backfired, I was completely frustrated. “Why should we go? You and I both know that he doesn’t need any extra help. I didn’t need it, so why would he?” My husband looked at me with love in his eyes and I softened. “Meg, you went to school ages ago. What if the school can offer something that just might help Ethan? Don’t you think we should at least hear them out?”

Reluctantly, I acquiesced and the next morning I found myself at the meeting with the faculty, inwardly grinding my teeth. The principal began. “Mr. and Mrs. Zucker, the 504 plan is available to Ethan, given his disability.” Instantly, I felt my stomach tighten. She continued, as the guidance counselor and gym teacher simultaneously smiled in our direction. “504 plans are developed by school teams and parents to support the educational needs of a K–12 student with a disability that “substantially limits one or more major life activity” such as: learning, speaking, listening, reading, writing, concentrating, and caring for oneself.” Noting my hesitation, she added, “Mrs. Zucker, you wouldn’t believe how many parents would given anything to have their child have a 504 plan!” For the first time since we sat down, the guidance counselor spoke. “Mr. and Mrs. Zucker, we can work together to develop the plan so it is tailored to Ethan’s needs. For example, if you’d like, we can let Ethan take all his tests untimed, to make sure he has the time he needs to complete each in-class assignment and exams.”

In that moment I could feel my blood beginning to boil and, sensing my tension, John placed his hand on my leg as if to say, “Don’t overreact.” Ignoring my husband’s effort, I quickly reported. “Don’t you all see? If you give him extra time on his tests, he’ll take it!” I paused. “He doesn’t need the extra time now, but if you do this, he will always think he does.” By the end of the meeting, after some private negotiation with John, I agreed to a modified plan. Essentially, we would work before the year started with the gym teacher who would share with me her lesson plan for the semester. That would give me ample opportunity to show Ethan how to physically approach the challenges he would face in gym class in the coming term. The whole process felt like one big waste of time to me, yet, on the outside chance that there would be an activity in gym that he couldn’t perform, I acknowledged it wouldn’t be so bad to prepare him in advance. I frequently worried about him feeling embarrassed if he couldn’t keep up.  Later that evening as Ethan and I practiced stacking red plastic cups together in his bedroom, an activity the grade was scheduled to focus on that Fall, I couldn’t help but feel that the faculty didn’t really get it. I wished then that they could get a true sense of our day to day experience because only then would they understand that Ethan didn’t need, and wouldn’t benefit from, their extra attention. In fact, they might see that the attempts to accommodate him would more likely retard his development than help it.

 

 

 

 

Recently, the principal of our elementary school, Dr. Sheila Cole retired. She was ready to close out this chapter of her life and start a new one helping communities in developing countries.  In short, Dr. Cole had big travel plans and I knew it would be awhile since I would see her again. It occurred to me that the best going-away present I could give her was a DHIFI peacock bracelet. After all, I actually credit her with giving me the inspiration to establish Don’t Hide It Flaunt It. Six years earlier, when Ethan was in 1st grade, he was the target of some 4th grade bullies during recess and in the cafeteria. They mocked him for his one fingered hands and left him feeling scared and vulnerable. When we became aware of the incident, John and I immediately arranged to meet with Dr. Cole, both with and without Ethan, intending that we would all work together to ensure that type of behavior would not be repeated.

A month or so afterward, I received an unexpected email from Dr. Cole inviting me to speak to the entire school faculty, guidance counselor and nurse about what it is like to have and parent a child with a blatant physical difference. The theme of my talk was how best to preserve the ego of the student with the difference, while encouraging open conversation not only between the teacher and student, but among the students as well. I gave the presentation, the first I’ve ever done on this subject, and felt pretty good about it. Afterward, I received emails from several of the teachers, the guidance counselor and Dr. Cole herself. It seemed that my talk was ‘a hit.’ All of a sudden, as if a light bulb had switched on after a lifetime of darkness, it occurred to me that not only did I feel comfortable in front of an audience talking about my condition, now that I had two children with it too, I had something meaningful to share.

And so, as a result of Dr. Cole’s prompting me to speak after school to her faculty, I decided to launch Don’t Hide It Flaunt It. As my writing began to reach more people, even finding some willing takers in national magazines, my children were simultaneously working their way through Dr. Cole’s elementary school. Throughout, Dr. Cole continued to support my efforts. Whether it was my kicking off the ‘Kid Flaunt,’ as a pilot competition in her school, my leading a ‘Character Counts’ Assembly to the entire grade school (grades 1-5) about “Difference,” having students participate in the national children’s Peacock art contest to create a logo for DHIFI, or even just to present to all 1st graders, sharing a book Ethan had written and Charlie illustrated on bullying. Now when I look back at the overprotective and fearful mother I was when Ethan first entered school and see the changes I’ve made so that now I’m encouraging everyone to flaunt their differences, I’m still surprised by the evolution. But I know that Dr. Cole planted the seed of Don’t Hide It, Flaunt It and then helped me grow it.

I visited the school on Dr. Cole’s last day to drop off the bracelet. She wasn’t in so I left her a note of thanks. Then, this past week, I received an unexpected email from Dr. Cole who had just spent time with a church group in Latin America. She shared a journal entry from her trip and, as I read it, my face moistened with tears. As it turned out, it seems I left just as much of an impression on her as she did on me:

 

“The praise dancers entered the sanctuary and took their places. A small girl with one arm and the other arm only to her elbow and legs only to her knees was carefully placed in the center of the front row of the praise dancers.

photocoleAs the praise dancers began their routine, the child began dancing and praising G-d in her own way.   The joy that was expressed on her face was inspirational. Some of the participants in our vision mission trip immediately thought that the people in this church were trying to manipulate our emotions by placing this child in the front row. I saw a child who was overcoming her limitations on her own terms.   But what I realized was that she did not see them as limitations but what G-d has given her and she used what was given to her to praise G-d. 

I realized that if she had appeared at my school I would have tried to provide her with a 504 so she could meet the expectations of the grade level with the necessary accommodations, just like I tried to provide for Ethan, a student in my school. His mother, who has the same genetic issues as her son, shared that as she was growing up in the Middle East she did not have any accommodations and she adjusted on her own. She wanted her son to do the same. I couldn’t see how that could happen. I insisted on establishing a 504 on her terms and eventually, her son, like this child did not need any accommodations. Now, finally I understood. A least restrictive environment really means just that. Allowing this child to dance in her own way, to use a tambourine in her own way gave her an opportunity to meet her full potential. To deny her the chance to display this exuberance to the glory of G-d would be criminal and also deny us, the congregation, of seeing pure joy from one of G-d’s precious creations.”

Dr. Sheila Cole October 2014

 

 

Postscript

This post is dedicated to Dr. Cole and all principals, guidance counselors, and teachers in our New Jersey town Zucker family June 2014who have open their classrooms, auditoriums and cafeterias, allowing us to share Don’t Hide It Flaunt It’s message of self-acceptance.  We are forever grateful.

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