“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Monday, May 17, 2004

Overcoming a notorious reputation: Roy and me part 1

There is a young boy with Aspergers syndrome who has been attending my church. As with many individuals with disabilities like autism, he has developed a "notorious" reputation in the regular Sunday school class. Apparently he has been disruptive, and has even cut off some hair of a young girl in the class (that appears to be the height of inappropriate behavior that one might engage in). In her wisdom, the director of the children's ministry at the church has been working with parents of children with disabilities and interested others (like myself) to develop programs and other ways to support children with disabilities as they are integrated into the general classes. All that to say, that I am now a buddy in the buddy program for an 11 year old boy with Aspergers syndrome. I want to share that experience with you. I will call him Roy for the purposes of this.

At the close of our class for adults with developmental disabilities (an exciting session with international guests where I discussed the incidences when Jesus showed himself to followers in the 40 days between his resurrection and ascension) Roy's mother met me. We went downstairs to find Roy who I would be accompanying to Sunday school. Roy is an average sized boy, for his age, with dark hair and a friendly face. His eyes are constantly moving to take in all that is going on around him. His mom took a couple of pictures for a Social Story book we are going to work on. He allowed me to greet him with a handshake, and I asked him where he would like to meet his parents at the close of the Sunday school class. We agreed on a spot under a gazebo and off we went.

We entered the stairwell and he charged up the stairs at times on all fours. I did the best I could as a 48 year old with bad knees to do the same, climb on all fours that is, which he appeared to enjoy letting out a laugh. We then entered the classroom and endeavored to sign in. He looked for his name, which didn't appear, and looked at me with a cross between confusion and indignation. I looked for my name which also didn't appear and mimicked his stare. He added his name to the list, I mine. We wrote out our name tags (his mispelled, his real name is a bit more difficult than Roy) and I asked him where he wanted to sit.

All the while I looked to observe interactions between him and those around him. It seemed the others were going about their own business and gave little attention positive or negative. Any looks cast in our direction were probably more related to my 6'7" frame following this boy to his seat. We listened to announcements, he occasionally looking around at the other children or up at me. At times I asked him something about the announcements, and he would provide a brief answer.

When the singing began, I wondered how he would react. To my surprise, he sang. He sang beautifully, although a little behind the meter of the song. As other voices were fading, his was just getting the word to be sung, so it lingered. I did my best to have my voice linger with his. I quickly recognized that he knew little of the words of the song except the last word. I got his attention and enunciated the words for him before they would occur in the song and he appeared to appreciate that, being able to sing more of the words. But his little voice was beautiful! It was high pitched, on key and beautiful.

Generally the pace of the class was fast which appeared to confuse him somewhat, but to his credit he has learned to be still, and let things play out around him. I was impressed at his patience in being in a fast paced environment and keeping his calm. In such a fast paced environment, it is easy to see how children with disabilities such as Roy's might get frustrated and act out. Those working with folks such as he need to set things up for him a bit, and give him the opportunity to process before making too many demands.

As the program continued, students were given food rewards (candy etc.) for completion of various challenges. I had been strictly warned that Roy couldn't have any sweets because of various aspects of his disability, and I noted that there were no treats available that he could have had even if he had earned one. I noticed that Roy looked at the treats, not particularly in a way indicating that he wanted one. I guarantee there will be treats he can enjoy as well in that basket in the future.

We then broke into groups to play Jeopardy. The game was slow enough moving, but was difficult even for me to follow. The rules seemed somewhat amorphous. At one point our group was asked a question which we got right. I did the "raise the roof" gesture to celebrate with the group which he mimicked. Later there was a question asked, a part of which the group couldn't get. The go to answer to a Sunday school question is always, Jesus, which he happened to say spontaneously (I wonder if he understood?), and got right (when the others didn't say it) and he celebrated with me with a high five.

At about that point the class was closed and we went downstairs to meet his parents again. He appeared a bit concerned that we didn't meet in the predetermined gazebo, but he went with his parents and that was it.

Labels mean different things to different people. People need to learn that these labels cause fear to some who use them because of a lack of understanding. Parents in describing their child to churches might consider describing the child's behavior rather than giving the diagnosis. A parent recently told me that his child had autism, adhd, schizophrenia and a litany of other disorders. As a professional in the field, I kind of laughed (the parent was taken aback) at the foolishness in giving a child so many diagnoses loaded with such inflammatory terms. To me it illustrated that those making the diagnosis weren't sure what the diagnosis was, so they loaded on 15 different things in the hopes that one would catch it. Perhaps it helps parents to know that doctors know what their child has, but when you are on the other side, the professional side you realize how silly such information can be. Parents then share those diagnoses with others, and it becomes a situation where the parent thinks he is being helpful, while the church worker is looking for an exit.

Probably every day won't go as well as today. Who knows what mood I will be in? But I was once again struck by this sweet little boy with a severe reputation, and how little it took to help him integrate a bit.

More to come.


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