The R Word


Mentally retarded. 

Mental retardation.

These are not words that you want to hear in association with your child. These are fighting words. You call a kid can wait for mama bear to come get you. She will come. And you won't need to wait long either.

I held myself together fairly well as the genetic counselor explained Conor’s test results to us. I had already started to research Fragile X Syndrome. I felt prepared. I was caught off guard when she said that the average IQ we could expect with a Fragile X diagnosis was 30-50.

I lost it.

30 to 50. 

If you aren’t familiar with the IQ scale, you could say that 100 is about average. 30-50 is the lowest 0.5%. It has been professionally described by words like: imbecile, moron, and retard. On one scale I saw it described as “trainable” mentally retarded. Trainable. Like a dog. On another scale, below 70 was simply labeled "feeble mindedness.”

I know that an IQ test cannot measure the full potential of a child and it cannot summarize all that they are capable of. I know that Conor is more than some number. Some test. Some average. But taking it for what it is worth, a starting point, perhaps? It was pretty damn shocking and has helped shape my understanding of the challenges to come.

As kids go back to school this week, the “R” word is weighing extra heavy on me. I pass multiple school drop off zones on my drive in the morning and I can’t seem to keep the tears from rolling down my cheeks. I remember being in school. I remember identifying the kids who were different and avoiding them. I remember saying the word retard. It’s hard to stomach these memories. I was a kid. I wasn’t a cruel kid but I was still learning. How can I expect other kids to know better than I did? To treat Conor better than...well, to treat Conor better than I would have.

The truth is, I can’t expect it. And I won’t. Luckily I know that most kids will learn and that gives me comfort. Maybe Conor will even be the one to teach them? It is kind of beautiful that he has that power. Some kids won’t learn though and will go on to be bullies in their adult lives. I know that I can’t concern myself with that. It exists. It sucks. But I hope that anyone who is willing to get to know Conor, willing to give him proper time to adjust, will enjoy him for everything that he is and not criticize or punish him for what he isn’t.

As Conor struggles to adjust to his new Early Preschool class this week, I worry about what his teachers will think of him. Will they give him the time he needs? Or will they get frustrated with him and label him as difficult? Will they see his humor and recognize his potential? Will they fall in love with him like his previous teachers did? How do I protect him? How do I face this year after year after year? How do I prepare him for people who won’t understand his needs?

Retard is a strong word with a rough connotation. It’s hard to introduce to people without bias. But it is an important part of our story. And I want to talk about it. I want it to be okay.  No one is defined by a single word. Or a single label. Conor will continue to teach us all that.

XX, Bev