Wednesday, March 10, 2010

Hand in Hand

Last Thursday I found myself in one of my favorite independent bookstores with some time to kill. It had been months since I was in this neighborhood and, even though I really didn't need any new books, I am brilliant at justifying book purchases to myself, so I walked out of there with two new books.

As is my method, I began reading them both the next day. The first one is a series of essays written by parents of children with disabilities that essentially serves to put a human face on these families for whom life is a constant series of struggles to find ways to accommodate their unique needs and help their children navigate the 'normal' world. Despite knowing many such families, I have found some new information in each and every story. Despite feeling as though I am fairly savvy about children with special needs, reading these essays has opened my eyes wide to the daily challenges one must overcome, often to simply walk out the door in the morning.

The other book is a bit tougher read. For a science-lover, I find the subject fascinating, but it is a book that I have to be fully present to absorb completely.

The biggest revelation I've made thus far is in realizing how congruent these two diverse books are. The author of "How We Decide" quickly explains that human beings, while long held as the most rational of creatures on the planet, would be nowhere without their emotions. He points out that emotions play a vital role in helping us make decisions and gave examples of people who have suffered damage or trauma to the limbic (emotional) system of the brain who went on to become paralyzed by decision-making. Simply put, we are completely unable to make a choice between different options without consulting our emotions to some degree.

As I finished yet another compelling essay about a family whose lives were turned upside-down by the appearance of a "special needs" child, I considered my own reactions to children whose difficult behaviors I've witnessed in public. I began lamenting the human condition that compels us to sort and group, stereotype people in order to more quickly assess where they fit in to our mental filing systems. I began to wonder what it is that causes us to have physical aversions or angry reactions to children who are clearly different and, often times, blame the parents for not controlling or fixing their children. It occurred to me that our emotions are at work here as well. I cannot speak for anyone else, but I know that I generally have one of two instant emotional reactions. The first is frustration that I have nothing to offer in the way of helping. The second is fear that 'there but for the grace of God go I.' Both of these lead to anger and an instant need to explain why I could never find myself in such a situation. I need to insulate myself from the possibility of ever experiencing the alienation or fear that this family is clearly dealing with, and so I need to find reasons why I won't ever be there. Both stem from my own inability to be comfortable simply being in that moment without needing to change it.

I believe that in that instant when we are witnessing a massive meltdown in the grocery store or an act of aggression on the part of a child who is clearly not in control of themselves, many of us make the decision to distance ourselves based on fear. I am sad to say that I know I have. When that fear grows from the simple fear of helplessness or "what if that was my kid" to the fear of potential harm to our own children, bias begins. We use that fear to support the logic of pigeonholing these 'types' of families in an effort to insulate our children from difficult situations. Now that I understand more fully my tendency to make decisions based on this flawed belief (autism is not contagious and I am not being asked to 'fix' the problem - only have compassion or, at the very least, keep my frigging mouth shut), I hope to interrupt the circuitry and replace fear with compassion. I can't wait to see how my decisions change with love and understanding as a base in place of fear.


Brenda said...

Thank you so much for writing about your reactions to special needs kids. We really need to have this kind of discussion with so many people. I'm the mom of a special needs kid. He has autism. He is also adorable and affectionate. He has lots of sensory problems, so fear drives him: fear of lights, noise, movement.

It would be so great if when people see a child acting differently, even in a way they interpret to be a temper tantrum, to know:
- the child has used all his energy doing things you and I take for granted (like eating, walking, etc).
- this is not a behavior problem. It is not willful. It is neurological.
- we parents are trying the best we can. Just like you. And this was probably the first time in ages we've tried to get our child out.

Thank you for your honesty and understanding. ((hugs))

Brenda said...

kario, can you email me?
mamabegood at yahoo dot com
I'd love to continue our discussion.

Brenda said...

Trying to get it right again:
mama_be.good at yahoo dot com

Carrie Wilson Link said...

Thank you, Kario!

BTW, the "There but for the grace of God," feeling is a good one, in my book.

Elise said...

When my oldest son was brought indistrict and placed in an inclusion program the parents in the school had a group meltdown. My husband had an intersting take on the situation...he refused to be angry at them because he knew that if we did not live with autism we would probably have had the same reaction. 15 years later inclusion is how this district is run and there are children with all sorts of issues and differences that go to school along with neurotypical children. It is the world for this school district's children and while some are still reluctant and refuse to accept the reality of the disabled amidst the world, most parents and children are very open and welcoming.
The truth is that what the world needs is merely a matter of education and compassion and understanding. This blog is a nice place to start.
I write Raising Asperger's kids and I welcome your incites as well

Deb Shucka said...

Love and understanding instead of fear. Wouldn't it be nice if we could apply that across the board?

This is a powerful reflection on an issue we'd all do well to sit with and examine. I'm so glad you did so I'm reminded to.

Anonymous said...

I think you are so right. We "group and stereotype" because we don't understand. I think if more people were introspective, as you are and took the time to think about what we see when we see these "different" kids, we'd be a lot more compassionate. Most parents are doing the best they can and some deal with very challenging situations. Thanks for making me think.

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