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Being Included

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I open up Amanda’s sixth-grade school planner and find a yellow sheet of paper with three famous historical quotes. The directions say that each student is required to choose one of the quotes, stand in front of the class and recite it. Attached to this yellow sheet is a pink sticky note saying, “We are not sure if Amanda will do this but thought it was worth a try.”

My first thought is “Are you kidding me?” These are big-worded, long-sentenced quotes. There is no “Mr. Gorbachev, tear down that wall!”

My daughter Amanda is 13 years old. She has Down syndrome, celiac disease and Type 1diabetes. She required multiple surgeries the first two years of her life including a tracheostomy, a procedure that created a hole from the front of her neck into her windpipe to provide an unobstructed airway. While she is a bit of a “watcher” when facing a new activity, once she feels comfortable she jumps right in. She competes in Special Olympics gymnastics and participates in basketball, kickball, swimming and soccer. She is an altar server at our church. Her medical challenges have not made her into a timid or fragile girl!

However, articulation and voice control are issues for Amanda. Vocal cord damage from her surgery makes it hard for her to speak intelligibly. Public speaking is not something we have ever considered.

I stare at the quotes and think to myself, “She cannot read these words, much less say them out loud.” It would be so easy for me to send a note back saying “This is something Amanda just cannot do at this time.” Her teachers would not question my decision.

I ask myself, “What exactly would she learn from this exercise, really? What harm would it do to keep her safe from the possible teasing of her peers if she stands up in front of the class and cannot be understood? Why put her through the time it would take to practice these words that have little meaning to her, all for something she may not even attempt?”

I glance at my daughter happily eating her after-school snack. I know the assignment is darn near impossible. I also know when she sees all the other students one by one standing at the front of the class reciting their quotes, she is going to want her turn. How can I, an inclusion supporter, take that away? I can’t. So, I attach a new sticky note for the teacher asking if Amanda can do a specific part of one of the quotes. The answer comes back the next day, “That would be fine.”

Homework is a struggle for many families. My friends with typical children lament the time spent daily on school work. They discuss the task-avoidance strategies their young scholars employ. They share the challenge of balancing after-school activities, instruments, tutoring, sports teams and academics. How does anyone manage it all?

When you have a child with significant special needs, work is modified to meet and challenge her at her own level. You walk the fine line of making it doable—but not too easy. You must make it meaningful—but not over her head. You follow the classroom curriculum and try to focus on the concepts that will teach and engage your own child. You want your student to be an active part of the class. But you also have to balance therapies, doctor’s appointments, and all the after-school activities. Life would be so much easier for parents if homework did not exist!

Amanda and I spend the next few days after school practicing her mini quote. There are two words that are a bit tricky, so we practice slowly. We both tap the syllables out on our laps as we say them, to enunciate and articulate clearly. I make sure she does not get sloppy saying the words she knows. Amanda willingly practices. We take turns standing up and saying the quote, clapping for each other when we finish. The day of the speech arrives and she is as ready as she will ever be. We practice one more time after breakfast, and then off to school she goes.

I know Amanda has probably practiced more than any other student. I wonder if I have made a big deal out of something that really does not matter. I worry that she will not even get up in front of the class and try. Then I worry that she will get up in front of the class but will speak so quickly that no one will understand a word she says. I pray the children in her class will not laugh—or worse, there will not be an uncomfortable silence when she finishes. I want to drive to the school and make up some silly excuse to take her out early so she misses the part of day for the speech. OK, I don’t think about that one too hard but it crosses my mind briefly. It is going to be a very long day.

Around lunch time I check my phone for email and there is a message from Amanda’s teacher. The subject line is “The Speech.” I am afraid to look. I hold my breath and click the message. I read: “Well, we weren’t sure if she would actually get up and do it, but she did! She did a wonderful job and everyone applauded her speech. Thanks for the practicing at home!”

Here’s what I learned: I should never underestimate my daughter, even when a task appears to be too difficult for her. She doesn’t have preconceptions about what she can or can’t do. What she knows is she had a quote just like everyone else in her sixth-grade class. She waited her turn, just like everyone else. She walked to the front of the class, just like everyone else. She read her quote, just like everyone else.

This is what she said: “We hold these truths to be self-evident, that all men are created equal.” And that was just enough!    ■

Deborah Cavanagh lives in Manlius with her husband and two children. She has written for local organizations supporting children and adults with special needs and publishes the blog www.momofmanyneeds.com.


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