The Only Reason I Feel Grief for My Child on the Autism Spectrum
In my experience, the hardest part about being the parent of a child with a disability is the constant pushback and resistance from the institutions that are tasked with accommodating and supporting your child. There are both short-term and long-term costs to all involved; including the schools and teachers.
Like slow-moving geological forces, the pressure and strain of an inflexible, archaic, and inherently conflicted system will, over time, change you. It is inevitable. It has changed me for sure. In “Thirteen Doors,” I open one of my chapters by quoting Elizabeth Kubler-Ross, “Should you shield the canyons from the windstorms you would never see the true beauty of their carvings.” It is a positive spin on how adversity can be transformative, and how that transformation can also lead to something beautiful. Kubler-Ross, a Swiss-American psychiatrist and author of “On Death and Dying,” explained in that text her theory of the five stages of grief; Denial, Anger, Bargaining, Depression, Acceptance.
If I ever had any real grief about having a disabled child, it was never rooted in my daughter’s differences. It had always been focused squarely upon the things she as an individual, and we as a family, have been prevented from accessing because of how she has been failed.
If you take the pessimist’s view of Kubler-Ross, the strength and beauty of the canyons is only evident because there is nothing there to shelter them from the wind. And unfortunately, that is how many families with disabled children feel — alone and unsheltered from a relentless and erosive force.
I just finished reading Lulu Miller’s “Why Fish Don’t Exist,” which explored aspects of the early eugenics movement in America, and how its poisonous seeds ultimately spread to places like Germany. It was a potent chaser to my previous read, Isabelle Wilkerson’s “Caste,” and the revelations that early Nazis looked to the U.S. for lawful ways to codify discrimination and hate.
It is hard for me to listen to how, historically, children like mine were treated as “unfit” by my own government in a manner that was socially acceptable for the times. A treatment that once portended euthanasia eventually fell out of favor and transformed more culturally palatable forms of institutionalization and sterilization.
It is hard for me to believe that we are not living in the modern iteration of eugenics; children like mine ostracized and quietly eliminated from public education – sent to programs for “children like them.” The American community classroom has become reserved for only those that by birthright should have access to what is already accessible to them.
The revelation that one is beautiful may require that we confront the imprinted notions of who we are, and an exposure to the “windstorms” can help you find your own resolve. But no one needs to have the flesh stripped from their bodies to see the strength and natural beauty of their bones. And we certainly do not need to torment children to help develop theirs.
There is research that suggests the average life expectancy of someone who is autistic is half of the average American’s. When you overlay race and socioeconomic status, those numbers become even more grim.
It is not difficult to understand why individuals with a history of trauma may have shorter lifespans. There is nothing protective about autism that shields one from the life-shortening pressures and stressors of a world that was not built for you. To have your child restrained, secluded, ignored, unsupported, bullied, or even murdered by their school system creates a pain in a parent’s chest that will never go away. This says nothing for the anxiety, depression and self-loathing it can cause in the disabled child should they manage to survive.
The pain and grief I still carry is over the death and dying of the naïve perspective I once held about an American education. I never believed that the schools I went to were exceptional, but I did believe the system was altruistic and accessible to all. I know that nothing is without its shortcomings; my parents both spent over 40 years in education, but never once did I hear them speak in exclusionary tones about a disabled child.
As a parent of a disabled child, there is no other choice but to be an advocate. Good schools do exist, but they are not accessible to all. Good teachers exist, and I truly believe that most educators are on the same side as the parent’s – the side of the children. But you are often placed in a position where there is no middle ground as the parent of a disabled child; access is either being provided, or it is not. And it is hard to feel like you are not constantly failing your child, especially if your natural tendency is not to be confrontational or argumentative. But it is the system that has failed you.
If you are struggling, find an advocacy group. Larger organizations like DREDF and Wrightslaw are good resources that can help you with templated letters to write your school district for a variety of common issues. Locally, work to find or build a social network within your own community of similarly situated families. Social support for your child is important and social support for you as a parent is often an essential lifeline.
Miller reminds us in her book of what Darwin had to say about the success of a species; it is deeply rooted in variation and diversity. When schools become homogenized, everyone loses. You and your child have a #righttobelong!
Getty image by Max Riesgo.