Friday, January 15, 2010

Anger & Ignorance School Inclusion Solution - Part II The Good Part

I just read a statistic that only 1/3 of the children diagnosed with ASD also suffer from mental retardation. I have not been able to verify it, but it does seem to line up with what I see. Nicky has his share of deficits including severe language processing difficulties, sensory challenges and weak social skills. But he is a smart boy who does best surrounded by typical peers. For that reason I have always been committed to full inclusion. It's a battle because the system is not set up or funded to serve the growing ASD population and everyone is learning, teachers, administrators, aids and the students. So every step is a journey complete with uncharted territory and daily revelations.

Nicky began middle school this year. He's enrolled in a magnet program and is fully included in general ed. This is not our local school so he began 6th grade with all new classmates and teachers. Earlier this year a student in Nicky's class lost it when she believed Nicky had intentionally spit on her. Those of us who know Nicky knew that he did not spit on her intentionally. It was an accident. Most likely he was doing his stemming behavior; jumping up and down making noises and he drooled on her. Had this type of accident happened between two typical peers it would have most likely been handled with with a simple apology. But because so few people at the school understand autism or knew Nicky the event took on a life of it's own upsetting kids, aids, parents and teachers.

This post is not to revisit what happened that day, it's about how something that looked and felt really bad turned out to be an amazing opportunity. If you want to you can read about what happened that day in an earlier post called Anger & Ignorance School Inclusion Solution Part 1.

Following the "Spitting" incident, myself and an Autism Specialist scheduled a time to talk to Nicky's classmates and to do an intro to ASD. This is a new school and our goal was to dispell myths about ASD, give the kids some basic info and a forum to ask their questions and at the same time his teachers could listen in and learn too.

When I arrived at school I looked cool on the outside, but I was nervous. Nicky's elementary school kids had known him since first grade. They were liked Nicky. These are middle school kids at the stage where it's so important to impress others and fit in; they are new to Nicky and I really didn't know what to expect. I only prayed that my little man had not become the school leper. I knew talking was the right thing to do for Nicky the teachers and the kids if we wanted them to see him for who he is beyond his autism. But I had no idea how the kids would respond. Would they talk openly, would they inadvertently say things about Nicky that would hurt my feelings, would they be cruel, indifferent, kind, curious or polite? Would I be able to respond with kindness if I heard something hurtful. Would I be able to reach outside of myself and remember that ANYTHING they say, good or bad is good because it creates the opportunity to have a conversation. Would I take everything personally? Would my every emotion be written all over my face exposing my feelings if someone said something that hit a nerve?

My worries were for naught! The specialist was great. Before we connected with the kids she asked that Nicky not participate. She wanted the kids to be able to speak freely and she didn't want to risk making Nicky feel bad. I agreed, and then we went in the classroom. She did not begin by introducing me, instead she went right into the conversation by asking what the kids knew about autism? What did they think it was? What had they heard? Some of the kids gave really good answers far beyond their years, and others were only able to repeat the myths. But they all seemed to talk openly and freely. Next she introduced me, Nicky's mom by saying "Nickys mom is here because she really wants to answer your questions and help you to get to know Nicky". I got the look I typically get from kids. They look at me, slightly puzzled as if to say - and others have said - You're Nicky's mom?. I often think that on some level the kids figured that kids with autism, came from parents with autism and not from a normal looking mom. They genuinely seem surprised to see me, it's like a light bulb goes off "special needs kids come from normal mom's. Interesting". The kids were asked what did they notice about Nicky (This is the moment when I did my best to freeze a casual look on my face when I was actually fearful about what might be said.) The kids suprised me as the enthusiaticaly raised thier hands and making comments; Nicky is always happy, he love animals, he's funny, he's aways in a good mood. I signed a deep breath of relief.

Then we moved on to learn what they knew, what did they thought autism was, had they had heard about autism, did they know anyone with Autism? Turned out that about 15% of the children did know someone with autism (other than Nicky). The children had lot's of accurate pieces of information and lot's of inaccurate pieces of information consistent with "autism myths" that float around society. Next we jumped into an Autism 101 introduction; We let the kids know that Autism is not contagious, it's not caused my mom's who don't pay attention to their babies, all people with autism are not mentally retarded, they want and need friends just like everyone else. People with autism are individuals and are not all the same, just like everyone else.

The kids were amazing they shared their perspectives and listened closely to ours. Their questions were thoughtful, they wanted to know; How I felt when Nicky was diagnosed? Was autism caused by vaccines? Was Nicky considered low or high functioning autistic? How hard was it to care for him? Does he get along with his sister? What do we do as a family? How did I know something was wrong? Do you think Nicky wants us to treat him like we treat the other kids? If we are behind him and we are talking to him, can he understand us?

These wonderful young minds blew me away. I was not prepared for such insightful questions from 6th graders! They were interested and wanted to learn. When it was time to leave some kids came up to me and wanted to ask me more questions about Nicky. We were shattering myths and the kids saw a new side of Nicky, and they were no longer afraid.

Our talk did not convert any of the kids into Nicky's best friends and no kids have volunteered to come to our house and hang out with him. And I didn't expect it would. But it did make things better at school because they are not afraid of him, they understand him a little better and they care a little more.

There is lots of information on line about how to talk to typical children about autism. If anyone wants my resources...leave a comment and I'll dig them out.


  1. It was very rewarding to see that the students in Nicky's school were open, genuinely curious and willing to share out with you and the autism specialist. I have encountered the same wonderful responses from children and have generally have found only the adults to be jaded and closed to conversation.

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