Yesterday Boston-based author Susan Senator posted a piece about the chronic inadequacy that can trouble parents raising children with disabilities.
In If I Were A Good Mother she details a long list of all of the things she could do, or could have done, to improve her son Nat's life (Susan has written for BLOOM and is the author of three books about parenting children with autism).
I'm sure if we randomly picked 20 parents of older or adult children with disabilities, sat them in a room, and asked them to write what they "wish they'd done differently," they would each produce an elaborate and, to the outsider's eye, bizarre list. It would be full of unrealistic expectations, magical thinking and a whole lot of self-condemnation.
Here are some of the things on Susan's list:
She'd read to her son everyday, constantly engage him, type with him on Facebook, and be happy and not frustrated with any progress, no matter how minute. In addition, she would have signed him up for therapeutic horse riding years ago, instead of recently, researched a shared living program everyone raves about, and looked into five day programs before choosing the one she did. Finally, she would have known that his unhappiness, weight loss and other physical symptoms while living in the community earlier this year were signs of physical abuse.
Nat has autism and is in his 20s. He returned home in the summer after it was discovered that he had been physically abused while living in an apartment, with support, and going to work and a day program. He had fractured ribs and bruises.
It was painful to read Susan's post because I could see myself, and almost every other mother of a child with a disability, in it. The questioning about choices made, long past and present, the self-doubt, the desire to work round-the-clock, in the interest of your child. And how that meets with the reality of our humanness, leading us to feel like we're not the parent we'd like to be.
It reminded me of some comments Samadhi Mora-Severino made in BLOOM 's new A Family Like Mine video: "As parents we internalize a lot of guilt and we internalize a lot of... [It's] almost like we failed as a parent because we have a child who's disabled. And I think we need to be a little critical on how society has situated what is the ideal child to have and what is not the ideal child to have."
At the end of Susan's piece, she sums up why she feels so conflicted: "If I were a good mother, I would know how to parent Nat and I would have the endless energy and wisdom to follow through."
For parents of kids with significant and multiple disabilities, there is no "right" or "known" way to parent our kids. Parenting children with multiple disabilities is not like parenting kids with no disabilities. Applying the identical parenting techniques will not produce the same results.
This reminded me of an interview I did with scientist Lucy Lach, an associate professor in the School of Social Work at McGill University and co-principal investigator on a research project called Parenting Matters. One of the Parenting Matters projects is a clinical study of 263 Canadian children with various disabilities. Parents completed measures about the complexity of their child's disability, their behaviour, quality of life, family environment and many other variables.
This finding stopped me in my tracks. "We learned that parents who have a child with a neuro-disability don't differ from parents who have a child without a neurodisability (or problematic behaviour) in how positive and consistent their interactions are with their child," Lucy told me. "The downside is that they experience themselves as more ineffective as a parent."
Bingo! Suddenly I saw my own feelings of inadequacy as part of a larger social picture. That the way disability is viewed in society sets special-needs parents up to never, ever feel good enough.
Lucy said we parents feel less effective because of expectations we have for ourselves and our child. "There are things you internalize from society about what a parent should be and look like and do, and how a child should respond. Then there's the actual transaction that happens on the ground. One informs the other."
When I first saw Susan's blog post, it was posted on her Facebook page, and there were more than two dozen comments. Many like this: "I always feel this way. Like I'm not doing enough or being enough...or if I had just read to him more, or if I had more patience before gymnastics tonight and didn't yell at him through clenched teeth to get in the car..."
And "Oh my. This is me in my head all the time. All. The. Time. I feel like I could write my own version of this."
And that made me so sad. So very sad.
We need to do some research on this topic so we can better educate parents about feelings of inadequacy. They are to be expected in a society that holds such rigid concepts of human value. And they are not, in general, a reflection of anything a parent has or hasn't done.