Tuesday, November 10, 2009

Anger & Ignorance Two Parts of the Inclusion Solution

Today when I picked Nicky up from school and I asked his therapeutic aide my daily question. "How did it go today?" His aide took a deep breath, sighed and said, "Not so good. We had an incident." Following a long silence that seemed to last forever, he went on to explain how he had left the class room to take a break, while Nicky stayed behind with another aide. While on his break he heard a commotion coming from the classroom. He rushed into the room to see the girl Nicky sits next to huddled with her friends and yelling, "He Spit On Me, He Spit On Me!" The aide who had been watching Nicky had been called out of the classroom so Nicky was by himself when whatever happened took place. I was pleased to hear that the teacher in the room remained calm, despite the upset to both the aides and kids.

When I heard this I was puzzled because I know that Nicky's behaviors do not include spitting on people. Nonetheless, whatever did happen resulted in a young girl having saliva on her sweater - it was not that Nicky had intentionally spit on her. That said, I was relieved when his aide told me that some of the kids still joined him for lunch and they did not think Nicky had spit on her. At the same time I was sad to hear that any of Nicky's classmates were upset, frightened, angry, repelled or disgusted by his actions. I also worried that this incident might give them a reason to stay away from him or make him more of an outsider than he already is.

This is not the first time that an action of Nicky's - which other kids were not familiar with - had gotten him into trouble. In elementary school Nicky ran into the boy’s restroom right as the bell rang for recess instead of making his usual trip on his own before or after recess. The restroom was quickly filled with loud screaming boys running all around. Nicky went into sensory overload and began jumping and hand-flapping. He hand-flapped right into another little boy who thought Nicky had intentionally hit him. The boy turned around and punched Nicky dead in the mouth! That was a hard day.

In both of these situations I knew what Nicky was doing and I knew he never meant to harm anyone. He just doesn't have the same controls over his body that most of us have and take for granted. Nonetheless, I know he behaves in ways that people are not used to and it can be both disconcerting and frightening.

Today, I could see his aide was shaken. He was worried that Nicky had been unfairly targeted and would be ostracized. He was angry that kids were making fun of Nicky and that this moment might define him for the rest of the year, or longer. It hurt him because he wanted to protect Nicky and he wanted to protect himself. I know, because I have been there. I used to be the one who got upset and defensive when people stared at us, didn't include him, or treated him in any way that was unkind. I know, intellectually, that most people are not intentionally being hurtful or mean. But in the moment, when their words or actions hurt, their ignorance wasn't a good enough excuse. I was unforgiving and angry.

Over the years concern for Nicky's well being has grown larger than my need to control outcomes, larger than my embarrassment, larger than my disappointment, pain and fear. Slowly I've moved away from being so angry and judgmental about the things people say or do. Like a bonk on the head, one day I realized that my feelings were keeping me from being a larger part of making it better for Nicky and me. It was I who wanted Nicky fully included in his schools and community, not necessarily the other way around. It was I who was unable to see that these challenging situations were opportunities to teach people about Nicky so that he could be included in our community. This awareness made it helped me to accept that people don't understand Nicky or Autism. It has made it possible for me to respond to people objectively. Now I work to see questions/situations as opportunities for every person who talks to me to learn something about Autism.

I see questions like "Can he read?" or "Can he understand me?" or “Can I talk to him?” as opportunities to teach. Instead of stupid questions that used to hurt my feelings and make me angry. I now smile, take a breath, get in touch with my gratitude and I say things like "Wow, good question, thanks for asking. Yes, you can talk to him and, yes, he can read. He's a great reader and he writes too, as a matter of fact he spells better than most people I know. He memorizes almost everything so don't hesitate to ask him how to spell a word if you ever get stuck. He's a great kid who's got a great 'thinker' but his processor is messed up." So different from how I responded when I was angry and defensive.

Today I was able to hear the aide, I was able to put myself in his protective defensive shoes and talk about the lessons I'd learned. Specifically, I have come to believe that our role is not to judge, but to be the calm ship in the storms created by fear, a steady force that calms people who don't understand and use these tough situations to help others learn. It’s the only way I have found to really be part of the "inclusion solution", one situation at a time.


  1. This was a great post and thank you for sharing your story. It's comforting to know that there are other parents who are also facing the challenges of inclusion for our children. I use to feel the same way about being angry and defensive. But I realized that every situation is a positive one even though it might be a negative one at first. I believe that when there is an opportunity to teach and inform others about Autism, it only makes this a better world for our kids! :)

  2. Donna, your wisdom, knowledge and patience is incredible. That you have taken the circumstances of Nicky's condition and have both grown yourself and are willing to educate the rest of us is exceptional. I wish I had half of your patience and insight. Thank you for the continuing lessons.

  3. As much as I rush to Casey's defense, I also am overly cautious in trying to see my son through the eyes of the other children in his classroom. It must be hard for them, too, as my son calls out answers when they are patiently raising their hands. Or when he conducts a vigorous nose-pick session--at the shared desk. Yuck. In many ways, it was easier when the "special" kids were separated out...easier but not honest about the make-up of the world and certainly not fair to the special needs kids who were teased, demonized and excluded. Nor did that model teach tolerance, which it turns out, is rather important! But it IS hard.We mothers live with these kids and know their intelligences; to others, their abilities and skills are not readily apparent. I don't fault others for their questions...I just wish my son presented a more full picture of himself -- the picture I see of him -- to others.

  4. This is an issue near and dear to my heart. Unfortunately, it does not go away. My 15-year old came home from school very upset and told me that the kids in PE were laughing at him. My first impulse was to call the school and complain; then I remembered that 1)my son needs to learn to cope with the outside world; 2) sometimes he does goofy stuff and maybe the laughter was part of the scenario; 3)moms can't go running into high school--it's totally uncool. Wow, guess I still haven't figured out this inclusion stuff.

  5. I loved the whole tone of your article. As a teacher of children with autism I feel like we are all ambassadors of good will and education. I agree, each opportunity that potentially hurts is an even greater opportunity to teach, as long as we can cope with our own feeling. I trully find it healing to be able to turn around these critical situations that could explode in a bad way and make them into something positive. What's that saying? "When given lemons make lemonaide" Thanks you so much for your insight and share. Our children and their families continue to be the pioneers of social action for autism.
    Laura Gross

  6. Thank you Maria, Cherlbee, Casey,Yudi and Laura for taking the time to respond. We are so all in this together :)

  7. Thank you so much for sharing your daily ins and outs, as they help those of us who are fortunate enough to get to work with your children know what happens "behind the scenes". I love your outlook on educating those around us. The more people we can involve with your amazing child and his daily struggles and accomplishments, the more teammates he will have on his team!