Thursday, April 10, 2014

A parent's search for acceptance

By Louise Kinross

Perhaps it’s the nature of Twitter’s brevity, but I see a disturbing trend in people tweeting simplistic, declarative statements about how parents of children with disabilities ‘should’ feel and think.

An example is this tweet on Autism Awareness Day:

I do not long for a non-Autistic version of my child. I have the child I want. I LOVE the EXACT child I have.

My thinking was, great for you, but what does this have to do with where other parents may be on their own journey to accepting their child’s differences?

Acceptance isn’t a finish line, an endpoint, that you cross. It’s a chaotic process without a clear path, one that despite your best intentions, often sees you circling back. You walk through a forest of shock, denial, grief, guilt and outrage before you get to that small clearing. And just as you think you’ve arrived, you find yourself back in thick brush.
Are parents of disabled children not allowed to have the messy, ambivalent feelings that all parents—I would argue, all people, regardless of whether they have a disability or not—have?
Does it help parents who are struggling with their child’s disability to mandate the kind of feelings they should have? To have them recite simplistic, black and white statements about their relationship with their child—and attempt to snuff out any feelings or thoughts that diverge?
The tweet above is a response to a quote from Andrew Solomon’s Far From The Tree in which an adult with autism recounts how painful it is to recognize that his parents can’t accept a fundamental part of who he is.

“When parents say, ‘I wish my child did not have autism,’ what they’re really saying is that they wish the autistic child they had did not exist, that I had a different, non-autistic child instead. This is what we hear when you mourn over our existence.”
I think the truth of that autistic adult’s experience can exist with the truth of what it’s like to parent a child that one's culture largely views as undesirable, and in many respects expects parents to “fix.”

I’ve found parenting a child with disabilities (not autism), a humbling experience. Having a child that others desperately seek to prevent, as is evidenced in the dizzying race to refine prenatal testing, forces you to reexamine all of the values you grew up with, the comfortable little set of ‘This is the way the world works’ rules you deluded yourself into thinking were real.
One of the platitudes I especially found to ring hollow was: “If you work hard enough, anything is possible.” It still surprises me that I actually believed that growing up, that I was that gullible.

Now I know that it’s not true for any of us, whether we have disability or not. We are all mortal, we all have our limits, and we all fear that in some essential way we don’t belong, that there’s something ‘wrong’ with us, that we’re not good enough. As Jean Vanier says: “We were born in weakness and we will die in weakness.”
Having a child who was different forced me to strip away my own desire to fit in, to not rock the boat, to pretend that I had things “all together.”
It forced me to recognize all of the ways in which I feel inadequate, the ways I wish I was a better person, a better parent, more perfect, less human—but am painfully aware that I am not.

In an op-ed piece in The New York Times, David Brooks talks about how experiences that upend our world view change us.

“First, suffering drags you deeper into yourself. The theologian Paul Tillich wrote that people who endure suffering are taken beneath the routines of life and find they are not who they believed themselves to be. The agony involved in, say, composing a great piece of music or the grief of having lost a loved one smashes through what they thought was the bottom floor of their personality, revealing an area below, and then it smashes through that floor revealing another area.
Then, suffering gives people a more accurate sense of their own limitations, what they can control and cannot control. When people are thrust down into these deeper zones, they are forced to confront the fact they can’t determine what goes on there. Try as they might, they just can’t tell themselves to stop feeling pain, or to stop missing the one who has died or gone. And even when tranquillity begins to come back, or in those moments when grief eases, it is not clear where the relief comes from. The healing process, too, feels as though it’s part of some natural or divine process beyond individual control.”

In a recent talk in Toronto, Andrew Solomon spoke about acceptance as a spiritual practice and quoted from the gnostic Gospel of St. Thomas. “Jesus says, ‘If you bring forth what is within you, then what is within you will save you; if you do not bring forth what is within you, then what is within you will destroy you.’”
I wasn’t at that talk, but those words seem to get at the heart of digging deeply and honestly within ourselves to see what is there—the good and bad, the enlightened stuff and the petty, fearful stuff we wish we were past. To let it all rise to the surface where we can see it clearly and compassionately.

In my mind, the process of raising a child with disability forces us to look at all of the ways in which we, as parents, don’t accept ourselves.
I think when a parent wishes that their child were different, they are often, in fact, wishing that they could make themselves less imperfect, less fragile, less helpless in a world over which they exert such little control. They are silently screaming at the injustice that they are unable to complete a parent's most basic task: Protect your child.

To me, the process of acceptance in parents raising children with disabilities is twofold: it’s parents cultivating love and understanding for their children and it's parents developing love and compassion for themselves. Those two experiences are intertwined and can’t be pulled apart.
This weekend there’s a festival for artists with disabilities called Tangled in Toronto. Its promotional material includes this lovely quote by Eliza Chandler:

"Tangles are messy and imperfect, but they are also complex, intricate, organic, even deliberate."
That, to me, is a fitting description of the rich emotional experience of raising a child with disabilities. We need to stop insisting that it’s not.


Beautifully expressed, Louise. I feel exactly the same way - most of the time, we go along together being happy (or at least not bothered about) who we are. But then, pain rears its ugly head, or someone stares, or something will cause the prism to move just a bit and suddenly I see the disability. I feel sad and often surprised. Something made me wonder the other day whether someone would ever start a business drawing portraits of our children as themselves beside a 'non-disabled' (what if) version of themselves. It was like contemplating porn and I quickly banished the thought. Oh, I don't know - it's just difficult achieving acceptance of reality in general. Acceptance is elusive and transitory. And I mean acceptance of myself too, especially my age.

This might be my favorite post that you've ever written, Louise, and you've written so many beautiful posts! I wrestle with what I call "acceptance" and "resignation" over and over and over (much like Jacob and the Angel in the Old Testament, I think), and I often say to myself that I live best with the questions, not the answers.

As an adult with cerebral palsy, I think it's fair to say, "There are some things that we learn to love about disability and other things that we will always hate."

I can live with this.

Great post. Oh, and Louise, "You still rock the boat --it's just who you are!"

Matt Kamaratakis

As the parent of a kid with a disability, the type of disability and (for lack of a better word) the severity of the disability have a big impact on how long it takes a parent to come to a place of acceptance of their beloved child.

In hindsight, I got off easy -- my girl was born with only one hand. At the time, it seemed like the end of the world... but really wasn't, as she healthy in every other way. Accepting her disability was pretty quick and easy, because well, it's not a big deal. She's 10, she's awesome and the main way it impacts her is that she takes dance (rather than gymnastics, like her big brother).

My whip-smart, easy-going nephew was diagnosed with schizoaffective disorder at 20. My sister, my whole family, really had a helluva time accepting it.

This is a great post! So much of parenting a child with special needs really forces us as parents to look at all the baggage and beliefs that we have about the world. Stanley Greenspan talks about parents "observing yourself”.

Dr. Greenspan suggests that as individuals we all have ways of feeling and behaving that are automatic to us and that influence the way we relate to our children. We've learned these ways of being from our own families, as a result of circumstances in our lives, and from the culture in which we live.

Most of these feelings and beliefs are so ingrained in our everyday thinking that they are invisible to us. But as we look for the best ways of raising our children, it makes sense to try to make the invisible visible, to examine these automatic ways of thinking, feeling, and responding so that we can move forwards in raising our children.

Its hard so much beauty I see in my son & also the pain the grief I feel with special needs .... I love your writing Louise ♥ Special Needs parenting is full time all day everyday yet we shouldnt judge others that is what me must remember

I think I was one of the parents who tweeted that acceptance and love quote. I like it. I also like your blog. I don't think the two are incompatible. Suspect that everyone who posted that has mixed feelings. Part of being human. I tweeted that quote and glued it onto my Facebook wall as a reminder and an aspiration, and particularly as a message to all those critical onlookers, intervening medical authorities, educational "experts" and groups pushing parents to "fix" our kids.