In an earlier blog entry “Recommended Reading,” I mentioned that some of my favorite books about autism are memoirs written by parents describing how autism has impacted their children and their family lives. Recently, I read a memoir published last summer entitled Dancing with Max: A Mother and Son Who Broke Free written by Emily Colson, who describes her life as a single parent raising a son with autism. Even though each child with autism is unique, I always find the similarities between Alex and other children with autism intriguing, and I enjoyed reading about some of the interests that Max and Alex share. In the book, Emily describes her son filling a toy shopping cart with items around the house, pretending that he is playing his favorite game show, Supermarket Sweep. Alex also loved that show, and we specifically bought him a toy grocery cart and plastic toy food so that he could play along with the show as he watched it every day. Another interest that Alex and Max share is their fascination with commercial refrigerators in stores. In the book, she writes that Max asks to “check out the refrigerators” when they go shopping, which sounds like something Alex would say, and I’ve often caught him tilting his head at odd angles, looking for the temperature settings in the refrigerators when we go grocery shopping. A similarity that Max’s mother and I share is our desire to make certain our sons are well-dressed so that they are appealing to others. In the book, she explains going through Max’s preschool clothes to give away to charity, noting, “I held the pint-sized khakis he wore on his first days of school, the beautiful sweaters I dressed him in after his diagnosis. These were clothes that whispered, ‘This is someone’s child. Take good care of him. He is cherished and deeply loved.’” Her explanation moved me to tears because I, too, wanted people to know that Alex was adored as I dressed him in attractive sweaters, nice pants, and penny loafers to go to special education preschool. I thought perhaps people would be kinder and more patient with him if he were well-dressed and immaculately groomed with every hair in place. We took great pride in Alex, and I wanted his appearance to reflect that pride.
Another issue Emily Colson describes skillfully in her memoir is how other people react to Max’s behaviors related to autism. Frantically struggling to make certain that she gets Max the help he needs, Emily battles with the school to obtain appropriate services and placement. When Max was six years old, she met with the classroom supervisor, who is neither sympathetic nor helpful. She describes this meeting as follows: “I watched as the supervisor rolled his eyes and spoke as if he’d never seen a child as unfortunately disabled as my son. And then he smirked as if it were pointless to help Max, a waste of time and resources.” Whenever I hear stories like that, I am thankful that we were able to home school Alex and not have to deal with such uncaring people. In another heartbreaking story, she relates an incident in which she and Max are watching young boys leaping off a bridge into water. Noticing that one handsome, well-dressed boy about twelve years old keeps looking over at them, she wonders if Max might have been like him, had it not been for autism. Suddenly, the other boy begins screaming at his friends, not caring that Max can hear his insults, “It’s the retard! I told you guys I was right. It is the retard.” Again, I am grateful that we have been able to shelter Alex from the cruelty and bullying of adolescent peers who would take advantage of his weakness. She, like me, realizes that our sons are actually superior to these “normal” teenagers because Max and Alex would never say anything deliberately mean to make someone else feel bad. Moreover, our boys are excellent for determining people’s true character by separating the kind from the unkind. Later in the book, she states, “I’ve been fascinated by the way strangers react to Max. He brings out the best and worst in humanity, from the rudest of remarks to the most genuine act of selflessness. No one remains neutral.” From my experience, I’ve also found this to be true, and fortunately, most of the people we’ve encountered have been quite understanding of Alex’s differences, and he seems to have a good sense of those who care about him and warms up to them more quickly.
One of the strongest themes in Dancing with Max is the role that faith plays in their lives, which has been crucial to our life with autism, as well. After Max has regularly watched television broadcasts of a church service, she makes arrangements for them to attend that church in person. The experience is delightful to Max, who happily recognizes the familiar aspects of the service, and the people of the church are warm and welcoming to both of them. During the service, she notices a woman keeps looking at Max, and she wonders what the woman is thinking about Max’s somewhat unusual behavior. After the service, the woman approaches them, introduces herself, and explains why she was watching Max, saying, “I came to church today…facing a problem. A huge problem. But then I saw your son’s joy and your joy for him. It changed everything. It changed me. Max is a messenger for Jesus.” Of course, Emily is touched by the woman’s kindness and by the positive impact Max has had upon her through his uninhibited expression of joy. While the stereotype of autism is that these children are often emotionally flat, those who recognize their capacity for emotions can enjoy watching their happiness through laughter and smiles that are natural and never self-conscious. Throughout all the various trials and difficulties, Emily maintains a hold on her faith and proclaims, “God’s fingerprints are all over our lives.” I completely agree because I, too, have seen the hand of God in our lives with Alex, and I know that through the difficulties He has made us stronger and our faith deeper.
“You have turned my mourning into joyful dancing. You have taken away my clothes of mourning and clothed me with joy, that I might sing praises to You and not be silent. O Lord my God, I will give You thanks forever!” Psalm 30:11-12