Dream Map to a Mind Seized: A gentle reminder of what true love looks like
I used to fantasize about becoming a wildly successful author or influential teacher; now I fantasize about having a map of my son’s body and brain, showing me the areas of hurt and how I can help. Gone are the phantom shelves of books I would have liked to write, the modestly tucked-away folder of imaginary teaching awards.
When I first knew that my son, now 3, was on the autism spectrum, I had hoped for the possibility of a high-functioning form, but that was before I learned he also has a rare form of epilepsy and a host of immunological problems. Now I just want him to be functioning—that is, alive and able to eat and walk and perhaps even improve over time.
Parents of children on the autism spectrum often talk about a number of comorbid conditions that can accompany the disorder—immunological dysfunctions, frequent ear infections, intractable strep, gastrointestinal disorders, rampant yeast, inexplicable regressions, allergies. I did not guess that my son would have all of those as well as epilepsy (there is an 11- to 39-percent overlap between the two conditions), or that our concerns over his seizure disorder would begin to trump our fears about everything else. I also did not realize that he was to have more than one regression, which would rob him of all of his hard-won language and communication skills, forcing him to retreat into a wordless and inaccessible world where I could not follow.
I put aside everything else to try to help him. I’ve taken time off from teaching to relearn the very process of learning. I don’t research Keatsian arcana anymore; instead, I am trying to learn the silent physical rhymes and looking-glass puns of sign language. “Stars,” for example, are inverted “socks.” “Number” is a dancing “more.” “Thank you” is just a touch away from “good.” “Sorry” is “please” closed up and hiding. Never, of course, has my research seemed more essential.