Increasing the dialogue among stakeholders in New Jersey’s special education system

Pencil with eraser on standardized test sheet

By Joanne DeSimone

I recently took notice of a headline which read, “Alabama school board member considers institutionalization for special ed students.” Early into the video, school board member Ms. Ella Bell says, “Is it against the law for us to establish perhaps an academy on special education or something on that order, so that our scores that already are not that good would not be further cut down by special-ed’s test scores involved?”

Of course she’s defending herself now. “I never uttered the word nor have I ever considered “institutionalizing” students with special needs.”

Too late Ms. Bell. When people speak before they think, they say exactly what’s in their heart.

To be fair, I don’t believe Ms. Bell was thinking about locking up children with disabilities in some kind of Willowbrook type facility, but her message was clear. Special education students are bringing the schools down.

I have long believed the education system in America is widening the gap between students with and without disabilities. We are a product-driven society and our education system is set up the same way. I listen to parents in my community complain about test scores and rankings and property value. As a special educator I hated testing students, comparing them to the “standards” of non-disabled children. As a parent, I don’t care about school ranking and test scores.

I do care about expectations being too low. I care that our country is so focused on winning a first place, world-wide intellectual status that educators are forced to ignore what they know about child development. The state and federal governments are willing to stress our schools, educators and an entire generation of children by judging them first and foremost on test scores. The higher the grade, the more valuable you are.

People with disabilities are the most marginalized group in the world. My children are well loved by their school teams, our family and friends, but that doesn’t blind me to the fact that a good portion of the world places them on a sub-level because they are disabled.

I’m not willing to look at my children that way. I’m not willing to judge my children’s teachers by test scores and rankings. I care about my children’s personal growth and everyday experiences.

When I was studying dance and learning to choreograph, I was taught to focus on the process not the product. I try to teach this lesson to my son, Sebastian, everyday whether we’re discussing academics or sports because I don’t want him to judge himself through the eyes of our education system.

A few months ago, when Sebastian graduated from middle school, he spoke to his elementary school principal. He talked to her about his academic struggles and his fears about losing. She told him, “We’re never losers. We’re either winning, or learning.”

Wise woman. Afterwards, Sebastian and I talked about the fact that only one person comes in first, but everyone is trying to do their best.

A month later, when Sebastian confessed that he refused to go to his first cross country meet last year because “I was afraid I wouldn’t be useful to the team,” I reminded him of his principal’s lesson.

This past week Sebastian and I went to a team meeting with his new high school cross country coach. I perked up when she said, “Trust the process,” explaining that improvement takes dedication, time, and work and her goal is to help each person reach their own individual success.

Her words fit perfectly with what I’ve been trying to teach Sebastian. He is one of the kindest, most respectful teenagers I know. I tell him to be as kind and patient with himself as he is with others. And focusing on his new coach’s philosophy, I told him even if he crosses the finish line last, he’s winning his journey.


Joanne DeSimone is a former teacher with degrees in Dance and Special Education from Hunter College. She and her husband John are parents to two sons, Benjamin who has physical, medical and intellectual disabilities, and Sebastian, who is on the autism spectrum. Her essays have appeared in Mamalode, The Mighty, Literary Mama, The Huffington Post, The Washington Post, and Brain, Child Magazine’s Blog. She has finished a memoir about how the struggle to balance her sons’ medical and educational challenges drove her to reconnect to the lessons I learned as a modern dancer.

To learn more, go to: https://special-educationmom.com/

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