Very early on right after Mae was diagnosed I had a constant and overwhelming desire to try and fix Autism. I was convinced that there would be a doctor, a supplement, a therapy that would unlock the words from my child’s mouth. We traveled from New York to Boston consulting every expert we could. We tried every combination of nutrients and foods imaginable. Every conversation, every thought was consumed by the need for answers. I struggled at the time to reconcile this endless search with my Buddhist studies. Those studies told me to live in the moment, to be present with whatever arises, to learn to love what was right in front of me. I wasn’t sure how to align the need to have answers about my child’s condition and my belief that honest and loving acceptance of what is in front of you is the best way to live.
We don’t really understand acceptance in Western culture. Or at least I didn’t. I felt like accepting my daughter’s diagnosis was a kind of capitulation. Acceptance felt like giving up, so I resisted it. We spent every penny we had. We turned every meal into a therapeutic endeavor. We sued our school district so she could go to private school. We watched her like hawks waiting for evidence of improvement. Our sense of wellbeing was entirely wrapped up in whether or not Mae had a good day or a bad day, on whether or not she was “improving.”
After almost two years of battling with an enemy of our own making we couldn’t do it anymore. We had no more money for therapies. We were tired of meals whose success hinged on whether or not she sat and used a fork. We just wanted to enjoy our family again. So we stopped. Instead of trying to solve the “problem,” we worked on accepting our daughter for who she was. She stopped being a diagnosis and became our daughter again. It doesn’t mean we don’t work to make sure her life is filled with activities and people who nurture and care for her, or that we don’t high five her when she joins us at the table, or demand that she use her limited language skills whenever possible. We do all those things. It also doesn’t mean that I don’t occasionally get sad about the things she could be doing this summer if her brain were wired just a bit differently. I would be lying if I said I never think about it.
In our case, acceptance was not capitulation. It was actually a very conscious and loving gesture towards both ourselves and our child. Learning to accept her diagnosis and what it meant both for her and for us as a family liberated us from our own expectations. I have found that the more willing we are to accept the truth of difficult situations the more easily we can adapt to them. When we resisted the hard truths of Mae’s diagnosis by insisting we could fix it we were blind to what was really in front of us, which was a beautiful little girl with a twinkly smile and an awful lot to teach us.
I am a polygamous parent. We all are to some degree. If you have more than one child you know they need different parenting styles and norms. In our case having two sons who are neurotypical or normal and one daughter who is severely autistic, we are almost constantly managing two distinct families. We are lucky in that our sons adore their sister and vice versa. Since the moment they left for sleepaway camp she has insisted on spending hours sitting in the car. Despite the fact that she can’t speak she understands that eventually that car will bring her back to her brothers wherever they may be.
When a house is filled with young children it vibrates with movement. Even when they are absent their clothes swirl in the dryer, their dog snores on the couch, their toys wait patiently on every available surface. I have found that it is easy to get caught up in the movement, particularly if both parents are working. There is always something to do: a meeting to attend, a room that needs picking up, an appointment that needs scheduling, cupcakes that need to be made…..The days seem to gain speed until all of a sudden they are years. I remember holding Benny once when he was small, it was two in the morning and he was on an elaborate sleep strike. It felt personal, as if his 8 or 9 week old self was deeply committed to disrupting my sleep, potentially forever. I was giving an internal finger to all those well meaning people who had looked at my newborn and said “enjoy it, it goes so fast…” Not at 2 in the morning it doesn’t…..
Katherine Osnos Sanford 