Standing Up for Children with Disabilities

Published in ChicagoNow, January 27, 2014 (Cartoon by Marcia Liss)

I just led a meeting for parents whose children will be starting kindergarten this fall. There were lots of great questions and some serious concerns. But it’s the special needs stories that always break my heart. In this case, someone shared a story about a child just diagnosed with autistic spectrum disorder. The family was willing to move to a community that would give the child the best shot, so I was asked, “Where should we move to receive the best education and special services?”

Sadly, there is no right answer and a good deal of heartbreak ahead no matter where they go. But the fact that the child has a family ready to relocate and advocate for what he needs is an important step in the right direction. Here are some of the stories I did not have the heart to share at the meeting:

In our school district, every third grader must play the recorder, even those with sensory and motor planning issues. The sound alone drives some of these children crazy. I know I can barely tolerate it.

A child with special needs has a piece in a community art show. The family is pretty excited to see it, until they actually see it. No way that was made by their child! That hurts more than it helps.

A child who has problems connecting with peers makes two good friends who include and accept that child. The friends’ parents hope they will stay together. The school separates them.

A child sits alone on the playground equipment. Several other children also play aimlessly by themselves. Several adults who seem to be in charge sit on benches talking, one on her cell phone. Recess, I guess. Sadly, this child, who has a dedicated aide, was excluded from the class field trip to the zoo that day. The child loves bus rides and the zoo but here he sits, wasting what could have been a great opportunity to include him with his peers.

A child with special needs, including extreme anxiety for which she is medicated ,has a hard time with dismissal. The noise and chaos are so dysregulating she sometimes starts to scream and cry. Her teacher views the behavior as something that can be cured by punishing her and decides to make her stay after class. By then she is so thoroughly upset she can’t find her way to the correct exit.

A non-verbal child uses an Augmentative Communication device at school to express his needs. The school takes his device away because his mother decides to home school him half-days. The mother feels the education her child is receiving at school is inadequate. To ensure that his voice will not be taken from him again, his mother has to get a Medicaid waiver for an iPad, even though his device is still sitting in the school.

Thanks to a Chicago Public School teacher for sharing this with me:

“My colleague’s niece was born with clubfeet and had been through various surgeries for correction. After returning from one of her surgeries she was in a wheelchair but able to attend school. While in drama class one day, her drama teacher excluded her from participating in the school wide performance due to her temporary limitations. She was very disappointed and informed her parents about the situation. Her parents were very upset because she was not being treated fairly. Her parents requested a meeting with the principal and the drama teacher. They discussed the situation at hand, and concluded that the student should not be excluded from the performance because of her recent surgeries. In the end, the child was able to participate in the performance.”

At least the last three stories had happy endings. The school finally agreed to a different dismissal plan for the anxious child. Medicaid agreed to provide an Augmentative Communication device for the child whose school had taken his away. The girl in the wheel chair was included in the school-wide performance.

What did these happy endings have in common? The children had parents who could advocate for them. What about all of the children with special needs who have no one to stand up for them? We have to advocate on behalf of all of our children.

In the words of the new MSNBC ad,

“Stand up! Stand up with the help of a friend! Stand up for someone you love, with someone you love! For social justice! For as long as it takes! Stand up even though they told you to lie down! Stand up.”