My boys are in drama camp this week, their last camp of the summer. This Saturday, camp will culminate in two performances of Snow White and the Seven Dwarfs. Because my boys limitations are “mild” and invisible to most strangers, I try to ”mainstream” them as much as I can.
They have sensory processing disorder, a metabolic disorder (pyrroluria) that looks a lot like Asperger’s that we treat with vitamins, and mild anxiety. Most people who meet them at first don’t even realize they aren’t neurotypical. They do so well at times, and I’m so used to their issues, that I wonder if the labels need to follow them to new situations. I think, Maybe I should let the labels go, not mention them to the camp counselors, maybe they’re close enough to ”normal” that no one will notice. Maybe my kids are typical enough that I’m not even qualified to blog at Easy to Love. Then, when I turn off the autopilot and pay attention, I’m reminded that the therapies have helped but my boys aren’t “cured.” I realize that this community is where I belong, because they understand and can relate to my situation.
The first day of drama camp included auditions, even though everyone was guaranteed a part (not necessarily a part they liked or wanted, but a part nonetheless). They began with lining the kids up by height in a long line. Although my kids were among the last to find their spot in the line, I was still hopeful that they might go through the camp with their issues unnoticed. The director instructed everyone to go down the line, saying their first and last name and their age. Simple enough. He said it twice and gave an example, “Joe Smith, age 9.” No problem. But after twenty children said their names and ages perfectly and the line came to my seven year old twins, they struggled to follow even this simple instruction.
“Will, my name is William but I don’t want you to call me William, I like to be called Will. My last name is Drury. I was born in February and I’m twelve…no seven.”
The other kids chuckled and the counselors scribbled on their pads. Sitting in the audience, even I snickered a little. There was no way my kids were going to get one of the good parts, with lines, singing, and action. I felt like I could read the director’s minds: They can’t follow simple directions. They ask too many questions. They complain about not having enough space to sit, they can’t sit still. These kids are going to be trouble. We’ll cast them as bats. Even the five-year old can be a bat.
So I’m trying to help my boys embrace their inner bat, and gloss over their disappointment at not having a better part. I struggle daily with where my boys will fit in the social structure of their lives. My hopes are so high because they are so smart and funny and strong and talented. But in times like these I wonder, Are they destined for a life on the third string? Don’t my children deserve more than that?
Parenting an ETL child is a daily roller coaster ride. Being on the edge of disability is a tough place for a parent to teeter. I haven’t given up hope yet that they might learn to manage their issues so well that they could experience a more typical adulthood, but some days their issues stand out so prominently against the “normal” social canvas that my hope begins to run thin. I wonder if it might be easier on my psyche to just climb off the roller coaster and give up the hope. What toll am I taking by wobbling along the line between remaining optomistic about future improvement and accepting that my children will always struggle?
So far, I’m not ready to climb off the roller coaster. Optimism is the foundation of my stubborn nature.
Please commiserate with me. When have you struggled with optimism versus acceptance of your ETL child?
Lorraine Wilde is a freelance journalist, environmental scientist, and mother. Her work has appeared in Nashville Parent, Entertainment News NW, Ithaca Child, and the parenting web site Neighborhood-Kids.com. She also blogs at My Wilde World.