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Family Story: Chrystal

My daughter, Chrystal, was born in Matagalpa, Nicaragua. Where we lived inclusion in the neighborhood is a birthright. By the time Chrystal could toddle, the she would head out our open door to the equally open house next door. Neighborhood children played together in the unpaved street out front, and Chrystal progressed seamlessly from spectator to participant. As time went on, the kids would ask, “Why doesn’t she talk?” and I would explain, “Chrystal has something called Down syndrome that means that she grows a little more slowly and has her own calendar for doing things. It’s not a big deal.” And, somehow, it wasn’t.

When it was time for preschool, it was easy to convince a friend of mine to enroll Chrystal in her small private preschool. Although the teachers had minimal training in general and none whatsoever in special education, I strongly believe that Chrystal benefited from the situation and learned much in her three years there.

By the time Chrystal was 4, I had began to consider moving to U.S. for her education. It was my understanding that “there” in the first world inclusion was the norm. Our friends in Portland told us about a Spanish immersion program starting up at their neighboring Atkinson Elementary. It was to be a dual immersion model and they were looking for Spanish speakers. Encouraged, I e-mailed the principal, John Withers. I told him that we were living in Nicaragua and planning to relocate to Portland; that my daughter had Down syndrome and spoke only Spanish, although I had always spoken to her in English and she understood it. That she had already had the equivalent of kindergarten in Nicaragua, but I wanted her to do it again in the States; that self-help skills were not a problem and I believed that she would do alright in a classroom with no extra help.

And here’s where something of a miracle occurred. The principal wrote back to say that Chrystal seemed uniquely suited to the Spanish Immersion class and that he would reserve a space for her. It wasn’t until years later that I realized what a rare gift that e-mail was. At the time, it just seemed routine and natural. I have had occasion to thank Mr. Withers – a skilled and visionary educator – many times over. Our story would have been very different without him.

From the beginning, Chrystal received speech and some extra help in the resource room. From middle school on, she has had 2 -3 periods in the “resource room” and the rest in the general education classroom. There were a few years with aides, and many without. It was almost never easy. The IEP always felt like a trial by a jury, not of your peers. There have been “behaviors”, conferences, countless “what do we do with Chrystal?” e-mails. But after 12 long years, we have more or less “made it.”

Through the smoke and lightning of her adolescent years I can now glimpse what I got for my efforts. An empowered and pig-headed, charming and sociable individual who thinks she owns the high school, who put herself on the ballot for site council (didn’t win), who is full of impossible dreams and who wrote an article for the school paper last year asking why the kids in the life skills class were separate from the rest of the school.

The main reason I fight for inclusion is simply that it’s the law of life. We are all stuck together on this planet, and learning to get along is simply more important than quadratic equations, or writing a perfect sample, although many of us can accomplish all of these.

The next reason I fight for inclusion in the classroom is entirely selfish. Today my daughter walks the halls of Cleveland High School and reaps the benefits of earlier policies of inclusion: kids are accepting, friendly. Disability is “no big deal” to them. These will be Chrystal’s employers, customers and co-workers for many years to come and I have a direct stake in not seeing the clock turned back.

The last reason I believe in inclusion is, in the words of Norm Kunc: “No matter how good the teacher, you can’t teach a child to swim in a parking lot.” The dream of all of us is that our children can lead independent, happy and productive lives in the community. Academic skills are important in doing that, but more vital is that undefined and unmodifiable ability to “get along” with people: adjusting to changes, listening, speaking up when necessary, and a zillion rules dictated by culture. These skills can’t be taught “in a parking lot”. Only exposure to other kids can do that: over and over and over.

I will wonder for the rest of my days if I made the right choice in leaving Nicaragua, but I would never retrace the steps we took once we arrived. I only hope that the doors we were able to open remain so for all those who want to go through them.

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