I just had the oddest conversation with my grandmother…. My grandmother is 86 years old and generally very well-informed. I had sent her a copy of my book a month ago and had never heard from her in our various conversations since about it- whether she had received it or liked it or anything. Finally, I just came right out and asked her. “So, Gran. Did you get the book?”
“I did. Thank you so much! It was certainly interesting, although a little thin on plot.” Oh good. A joke- probably. “I’ll be sharing it with the family across the street who have a darling little girl who they say has issues, but she’s absolutely darling, so I just don’t see it. But Claire Elizabeth, where did you get all of your stories to write about?”
“Well, Gran. That’s what happened to us… and I was hoping that our story could help others.”
“You don’t mean that our lovely girl has… that?”
And just like that, I was right back to THAT place. The place when I was first dealing with the label, the differences, the heartbreak, and the worry. The horrible feeling that “Autism” didn’t/couldn’t mean MY child- it’s some other child who belongs to some other mom who can cope, some mom who could deal with the isolation, the fear and the loneliness. Some mom who didn’t have this bright, shining star of a child who was being dimmed by…. this. A child who, I knew- I just knew- and really hoped- and still hope- that with enough love and therapy and whatever I could do, would wake up one day and NOT have… this. A child who would NOT be locked into a wordless world of sensation and fear. A child who would be really and truly herself.
And that place of shame- of keeping to our family and our close friends and keeping Elizabeth away from crowds and other children because I could not handle the differences and the fear and the looks and the hurt that went along with it. The place where I didn’t tell and I tried to manage everything. The place, that ultimately, faded and morphed and altered until I see my girl coping and blooming and becoming who she is. Autism is part of our lives still, but it does not control her – or us.
And I was annoyed that I felt that again- and defensive for Elizabeth and defensive for me and defensive for my grandmother’s neighbor across the street.
“You know, Gran, she can be marvelous and have autism.”
We’ve come so far- and yet, it still stings…