I am very open and forthcoming about Sophie being autistic. Autism is what most people see when they interact with her, she behaves in a typically autistic way. She's so totally autistic in fact that I often forget about the brain malformation, which incredeously is laying dormant for now. When I do remember however I feel the cold pangs of anxiety as to how and when (and if) the fact that her brain is made so differently will affect her. It feels impossible to hope that it won't, that she will live her life as if her brain was not malformed, how she is amazingly living now.
Sophie was born with a certain duality to her. First of all, she was born under the horoscopic sign of Gemini, or the twins. That sign is the classic symbol of a double nature in one person. Secondly, her hair was split evenly down the middle of her scalp into two colours- black and white (the black gradually faded to a dark brown). You don't have to be a new-age mystic to feel some goosebumps at that. My husband would often say that he wonders how her hair will affect her further personality. Everyone scoffed "it's just hair!" Well, then.
Moving along, her development was also of a dual nature. She started off advanced (very early speech, large vocabulary) and ended up severely delayed. And finally the diagnosis of autism followed by the discovery of Polymicrogyria, the aforementioned brain malformation. Further deepening the strange duality, in the autism world she is considered severe. In the PMG crowd her level of affliction is mild. It's like she is straddling these two worlds of two totally unrelated disabilities, fitting fully neither here or there.
I belong to several PMG groups online and I know she is incredibly lucky given which areas of her brain are affected and her seemingly small degree of physical disability. The fact that she doesn't suffer from seizures as of now is a small miracle in itself. She is even lucky in her ability to eat solid food without any problem. We don't take anything for granted. While her particular kind of PMG (bilateral perisylvian) is often blamed for robbing children of their speech, with Sophie again it's not so straightforward. Children who don't speak due to PMG never develop that ability. They don't learn to speak clearly and then suddenly lose it.
Autism is a neurological condition, as is PMG. They both affect the brain, one in an invisible way, one in a tangible, seen-on-an-MRI way. Both are mysterious and outcomes vary greatly. And by some luck of a cosmic draw, both converged upon my little girl and made her who she is. And as much as I love to know and understand everything, Sophie's condition(s) might remain mysteries unsolved for as long as I live. And aside from occasional panic attacks in the face of the unknown, I think I am ok with that.
|Understanding everything is overrated anyway|