There are few feelings I can call up with as much clarity as I can the feelings I experienced the first time I read Mae’s first report that labels her as Autistic. There was almost a physical sensation of drowning, a kind of overwhelmed I had never experienced before. Sometimes even when we know things, seeing them written down gives them a weight they didn’t have when they were just thoughts. The tangible quality of the report meant that my suspicions were now confirmed and that there were experts who looked at my child and were naming those behaviors I had tried desperately to ignore.
It has been seven years since I first held that report, seven years since I had the feeling that life would never feel normal again, seven years since I joined the club of Autism families, seven years since I learned that the diagnosis is the first and hardest step. Recently, we have started seeing a new neurologist. After several years of taking a break from the constant doctor and therapy appointments, we are back at it. As I sat in her office last week and she outlined for me the referrals and the tests that we would be doing over the next few months. I found myself almost moving back in time. It was as if, it was 2011 or 2012, years consumed entirely by Autism, hand-wringing over medical bills and watching my child for any sign of improvement to justify the fact that Autism had taken every aspect of our life hostage. I worried as I sat in the doctor’s office last week if it is possible to do both: can we manage the numerous appointments and therapies and still have a normal life?
I left the appointment, exhausted and fragile as if all the weight of the original report had rushed back into my life. These last few years I have convinced myself that I am completely at ease with my child’s Autism, I was reminded last week that I will never be. I can easily love her for who she is. I no longer wait to hear her voice, or expect that one day she will wake up and want to live in my world, but I have found this peace because I stopped asking questions or looking for answers. However, as she gets older it is time to focus again on all the ways she isn’t who we imagined she would be. We will do a series of tests, we will go back to the days of fighting with the insurance company, sitting in therapists’ and doctors’ offices who try to provide answers to questions none of us can even name.
There is a part of me that questions why we should even bother, a part that already wishes we had never met this new doctor or initiated this whole chapter. However, there is another part of me that knows that this discomfort I feel is all just a part of what it means to be Mae’s mother. It is my job to look for answers, just as it is my job to teach her brothers to never take anything for granted.
I think people assume that the hardest parts of having an Autistic child are the parts they can see. The tantrums, the lack of communication, the loss of freedoms, but they are wrong. The hardest part is the feeling that there are always more questions, there are always more ways in which you could do better. The hardest part is reminding yourself that your job is just to love your kid and keep putting one foot in front of the other.
Katherine Osnos Sanford 