What's Best For Kayla

After venting about our IEP meeting and the school's recommended placement for Kayla for middle school, a common refrain I hear is "You know what's best for Kayla."

But I don't feel like I do know what's best for Kayla.

I know what I want for Kayla.

What I want is an inclusive education. What I want is for her to go to a school like this, or this, or this. I want her to go to a school that belongs to the Inclusive Schools Network.  I want her at a school where inclusion is the culture, where inclusion is the belief, where inclusion is embedded in the school life. I want to live in a school district like the Deer Valley Unified School District in AZ, where Michael Remus is the Director of Student Support Services. I want someone like Michael Remus to bring his power point "The Road To Systems Change" to this district and provide them with training.

Example from the power point presentation: Change of Thought Process. - From "Where do I put them?" - To "How do I deliver their services in a more inclusive setting?" That has never been the thought process at our IEP meetings.

I want this experience for her because I know that an inclusive educational experience is not beyond the realm of possibility and that it can be successful and rewarding if it is done correctly.

But when I've sat in IEP meeting after IEP meeting after IEP meeting for five years and hear mostly negative viewpoints on my child with an intellectual disability being educated in the general education classroom it starts to wear on me. It takes its toll emotionally. I start to question myself if I'm doing what's best for my child.

I hear the buzzwords over and over that my child needs "specialized instruction in a small-group setting with a highly-qualified specialized teacher." What I don't hear are suggestions and plans on how to deliver those services in a general education classroom.

Another frequent topic in IEP meetings, and another argument the school has for self-contained placement, is Kayla needs one-on-one support for frequent redirection because she is so easily distracted, can't focus, and is impulsive. Oh is she ever impulsive.

A couple of years ago Kayla was diagnosed with ADHD. We have decided, for now, to not medicate. I wonder what schools do with students who have ADHD and aren't medicated, because I know I'm not the only parent who has chosen to not medicate. They find strategies and ways to deal with the behaviors, don't they? They don't recommend that unmedicated children with ADHD be in self-contained classrooms for their core academics do they?

This ADHD diagnosis is another example of not knowing what's best for Kayla. Maybe medication would be the best thing for Kayla. Maybe it would help her to grasp concepts easier and retain information and learn more skills because she would be able to focus better. Maybe we are holding her back from reaching her 'maximum potential' in the realm of education because she's too easily distracted.

But it worries me. I'd hate for her to have to rely on, and be medicated for years and years on end. And there is a whole process with figuring out the right medication and the right dosage and going through different side effects.

Some kids have lesser ADHD symptoms when they eliminate gluten and/or artificial colors/dyes/ingredients from their diet. Kayla was diagnosed with Celiac Disease 6 years ago - she's been on a gluten-free diet for that long and I never saw any changes in her. I avoid buying products with artificial ingredients (not to say that she doesn't occasionally get it from elsewhere, but for the most part it's not in our diet), and I don't notice any changes in her.

She had a sleep study done, twice, that showed moderate sleep apnea. Symptoms of sleep apnea can mimic ADHD symptoms. She'll have her tonsils (they are large) removed this summer and then a follow-up sleep study. I'm hoping we'll see changes in her attention span and focus after that.

For now we are trying Vayarin - a "non-drug clinical dietary therapy for managing ADHD symptoms..." After a little over a month I haven't seen any drastic changes (although it does say it could take 1-3 months to see any affects because it's not a drug so it won't have an immediate affect on the body.)

So how do I know what's best for Kayla? I feel inadequate even as her parent. I can't go back two years and see how things would have turned out if we would have medicated her right away.

We sat in our end-of-year IEP meeting and were told that after two years they just didn't believe the placement Kayla had was the best placement for her to thrive, and grow, and learn and reach her potential. They don't feel like they did right by her. Even though she made progress and met all the goals on her IEP. We were told "We didn't close the gap so something has to change, the placement needs to be different."

We didn't close the gap.

I know schools receive a report card on how well they are doing with closing the gaps of the sub-groups: minorities, poverty, English-language learners, and students with disabilities.

I'd like to see the statistics on how much this school has closed the gap specifically with the students that are educated in their two self-contained rooms. If they are closing the gap so well with that placement then why are those students still in self-contained rooms for most of their day?

And how are you going to close the gap with students with intellectual disabilities when I've always heard "the gap continues to widen the older they get." Kayla isn't going to catch up to where her same-age peers are. They are going to continue to learn at double, triple, quadruple the pace of what she learns every year. The point is for her to move forward, to make progress.

I don't feel like I know what's best for Kayla because I can't go back and travel the other road to see how that decision would turn out.

I only know what I want for Kayla, I know what's possible with inclusion, I know what research has shown to be best practice.

I know that a study from Bunch and Valeo in 1997 showed that "Special Education placement for students with disabilities has failed to demonstrate substantive advantages over regular classes despite lower teacher-pupil ratio and specialized teaching. Special Education has not proven to be academically and socially stronger than would regular class placement."

That was nearly twenty years ago, and yet, here we still are - placing students in classrooms by their diagnosis and delivering all the core academic subjects in self-contained classrooms.

And I know that Dr Robert Jackson found, "No review could be found comparing segregation and inclusion that came out in favor of segregation in over forty years of research." In over forty years no review came out in favor of segregation.

More from Dr Jackson's report: "...students in segregated education do less well than those who were included, and the longer they were segregated the larger the gap with their included peers." It isn't just a benefit for Kayla to be included as studies have found "...children without disability made significantly greater academic progress in mathematics and reading in inclusive schools."

That's why I may not know what is best for Kayla, but it is what I believe is best for Kayla.