A Voice for Kids with Special Needs

Published in ChicagoNow, September 30, 2013

At age 68, I have found my voice – and I am lending it to the children with special needs who are unable to express the injustices perpetrated upon them every day of their lives by our public education system. After working for over 25 years as an administrator in early childhood education, after teaching both preschool and high school, after raising three children, I am now the grandmother of a child with special needs. Walking in these shoes has definitely made a huge difference in my perspective.

My many years of experience founding and then running Cherry Preschool, an inclusive early childhood program, only partially prepared me for what it feels like to be the one who deeply loves that child with special needs. As my grandchild has moved from preschool, where inclusion was embraced by the children and staff alike, to public school, where inclusion is complicated by a curriculum that needs to be mastered and untrained staff that still think of inclusion as “being in the same room,” I have become even more passionate about advocating for these children.

What I have learned about public school is that some teachers and paraprofessionals (aides) are qualified to do this work but some are not; some are kind while others lack the patience and empathy required; some are well meaning but have no training or guidance. Probably all feel unsupported by a system that expects them to manage more and more challenges while also meeting increasingly rigid and demanding standards and tests, which are also used to measure how effective they are.

Yes, there is plenty of pain and frustration to go around, but I feel compelled to advocate for the children who cannot share why they cried that day, or how their teacher made them feel unworthy, or how an aide mistreated them in a misguided effort to impose discipline. How are parents supposed to feel when their child’s “behavior sheet” comes home day after day with numerous check marks for “bad behavior” but no plan to understand what the behavior means or to address the problem appropriately? Or when a typically developing child reports that the aides in the self-contained special education classroom are very mean to the children in the hallways and during art, music, gym, and library? Or when a child is encouraged to run around alone in a corner of the room during drama, one of that child’s supposed “inclusion” times? Or when a child’s iPad, which contains a program that gives her a voice, comes home fully charged day after day? Or when the music teacher excludes all of the children with significant special needs from the school-wide performance? Or when a child with a dedicated aide is still left out of a field trip to the zoo? I could go on and on, but the larger question is this: How and where do we begin an effort to right these wrongs?

Whenever I think of children with special needs, I think of Bob Dylan’s wishes for children in his song “Forever Young” featured on Parenthood, a show that includes among its characters a child on the autistic spectrum:

May you build a ladder to the stars And climb on every rung…

May you grow up to be righteous May you grow up to be true

May you always know the truth And see the lights surrounding you

May you always be courageous Stand upright and be strong…

May you have a strong foundation When the winds of changes shift

May your heart always be joyful And may your song always be sung

May you stay forever young

There are words in the song’s lyrics that capture so much of what makes these children special in the best sense of the word: righteous, true, courageous, upright, strong, and joyful. They can be the bravest and most honest children with fully joyful hearts. Hopefully, they are lucky enough to have the strong foundation of loving parents who will do anything, sacrifice anything, to make their lives better. Hopefully, they are blessed to be surrounded by the light of love.

Children with special needs teach us to say less and listen more, looking for our cues in the light in their eyes. Through them, we learn that, as Shakespeare said in the sonnet I was forced to memorize in 10th grade, “Love is not love that alters when it alterations finds … it is an ever-fixed mark that looks on tempests and is never shaken.”

We who love these children pray they will built that ladder to the stars, no matter how high it is able to reach, climb on every rung, and continue to sing their songs – and we pray that others will also be blessed to hear and appreciate those songs.