I recently read about a 5-year-old autistic boy who lives very close to me in New Jersey being denied lunch at his school because his parents were late with his meal payments. The article sent me into an annoyed state that I couldn’t shake. I’m not even sure why I reacted in the way that I did, but it was something that I didn’t take lightly. When I was about this boy’s age my mother joined the Jersey City Board of Education to help with the Special Education Department so I wouldn’t have to go through similar struggles. In my case it wasn’t about lunch like this boy, but it was that I missed 76 sessions of my occupational therapy which was discontinued because the therapists in the schools decided they didn’t like going into what they perceived was a “bad neighborhood.”
The school told my mother if she cared about me she would take me to a local hospital for the services I should have gotten in school. They got about the same reaction from my mom that the parents of this boy had over not giving their son lunch. She finally reached a compromise where they offered to give me compensatory services, but she turned that down because they only offered me the services not the rest of the kids in my multi-handicapped class. A year later she won the election for school board by one vote. Over 16 years later, my mom is in her sixth term and has 680 students on the autism spectrum in her school system. If that little boy attended her schools they would have to answer to her. Her school system’s occupational therapists are among the best in the state, and they are using applied technology and iPads in their high school classes to improve the communication skills of autistic students.
One trait autistic individuals struggle with throughout our lives is the ability to understand what common sense means. We sometimes can be gullible, naïve, and not aware of the world around us. For this reason, I wish many times that adults who care for autistic individuals would use a higher sense of urgency when it comes to the safety of our community. While autistic people may struggle with common sense, it would be great if people around us who supposedly have it would use it!
I spoke to a mother recently who pleaded that cameras be put in her autistic son’s classrooms because she firmly believed that he was being abused. Because her son is nonverbal, it is hard for him to communicate exactly what has happened to him except by the bruises he displayed which could not have been self-inflicted. Whether it is unnecessary restraint or something else, autistic children who cannot speak are at a distinct disadvantage in the school systems and need our protection.
So why did the story of the boy who was denied lunch make me so angry? What buttons did this story push in me? Much of the work I do is with parents and grandparents of young children who want to know that their son or daughter will be OK. They rely on my experiences to help them be hopeful. Whatever the level of communication their loved one is capable of they want me to use my voice to tell them what growing up with autism is like.
That’s where my anger—almost my rage—comes in. How dare they add one more problem for this little boy who has so much else to endure every day in the schools? How dare someone tell my mother, who spent a tremendous amount of time dragging me to doctors, neurologists, and therapists that she didn’t care about me when, in fact, she had the courage to tell the schools to be accountable, to do their job, to protect me, to protect children like this little boy, and all the others like him? With the staggering statistics of 1 in 88, where is the accountability for providing services to our growing population? While most people in our community are committed, caring individuals, how do we deal with the uncaring, reckless and dangerous ones?
How do we protect our children so when they are 24 years old like I am, a story about a little boy missing his lunch doesn’t set off a wave of angry memories buried deep inside and a need to protect all of the young ones in our community from senseless acts of cruelty?
I spend a lot of my time spreading optimism and hope in our community but sometimes I just have to shake my head and say that the reality is we still have a long way to go.