Six years ago, Enigma was diagnosed with autism.
Five years ago, Enigma was diagnosed with a developmental delay, not autism.
Four years ago, Enigma was diagnosed with PDD-NOS, a developmental delay, not autism, but maybe something like SID.
Three years ago, Enigma was diagnosed with Asperger’s Syndrome.
Three years ago, I resigned myself to the fact that Enigma was… Enigma. In those years, I researched everything I could. Gluten-free diets, chelation therapy, occupational therapy, physical and speech therapy. I looked into horse therapy, music therapy, the Indigo/Crystal child books and I cried. I cried a lot. I blamed the vaccines, my stress-filled pregnancy, the genetic factors involved. I questioned the two miscarriages I suffered after his birth. I read the connections between autism and Alzheimer’s, I tried to force him into desensitizing situations and then sheltered him from all the quirky things that caused him to freak out. I became hyper-aware of his sisters’ delays, and when they were tested for fine/gross motor delays and scored low, it was my turn to freak out.
Enigma began improving over the past three years. From countless hours in school, and out, with speech/occupational/physical therapists and eventually aging out of, or “graduating” from those services, Enigma was, “as good as he can get,” or, “he will never be considered ‘normal,’ but will always be quirky. Aspie’s are the computer engineers of our time.” Platitudes that worked for those awkward moments in the various therapist or doctor’s offices before escaping to the solitude of my car where I could cry more.
Don’t get me wrong, Enigma is awesome and my life would not be the same without the 10 year old boy who still strokes my hair when he thinks he can get away with it, would be able to get me out of DC in case of a major crisis (on the Metro, of course) and has recently begun calling zoos, “Animal Prisons.” But, it has recently settled into my heart that no matter how much I research, hope, bargain and scream, I have to accept that Enigma will never be cured. He’s not growing out of this. Its not a developmental delay, and its time to start planning for his future.
There is an IEP on Monday after which life will move on. But right now, I’m going to make myself a nervous wreck researching something, anything, that can give my son a life he will love, even if he forever lives in my basement.
Enigma’s place on The Spectrum is still fairly livable, somewhere between Asperger’s and “mild autism,” which means that he will likely be able to hold a job of some sort, but may never be able to live on his own. I could be wrong (I hope to hell that I am) but if, at 10, he is “as good as he can get,” then there are long-term issues to prepare for. In addition to the autism, he is hypotonic and possibly has undiagnosed cerebral palsy, which we will be finding out before he starts 5th grade.
(I don’t know where the rest of this blog went. How insane is that? MERCURY!!!)