Swan Mothers

Discovering Ourselves through Parenting

Beyond Labels: Lessons from Autism and Parenting

on February 26, 2014

When I started blogging, I thought my topic would be autistic and neurodivergent children and their mothers.  The more I wrote, the more challenging it became to work the words autism and autistic into the text. Writing “autistic child” felt forced.  Why? I wondered.

I realized that I don’t relate to the term “autism mother” and everything I write applies to all of my children – not just to my autistic son. It is not because he is not special, but because they all are. We all are.

I could write about IEPs and the gluten free diet and innovative therapies for autistic children.  But there are already many blogs, newsletters, books and magazines on these topics.  They are being done well by other people.

I find myself sharing wisdom imbued in me by my children.  I write about what I’ve learned along the way that has made our lives healthier, easier and happier in the hope that you will benefit.

The word autism turned my world upside down and inside out.  I would not be who I am without it. I am also ready to move beyond the label. What do you think?  I’d really love to hear your thoughts on labels in the comment boxes below.

Beyond the Label:  Lessons from Autism

Only one of my children is diagnosable and sports a recognizable label:  autism. When I think about him, I do not think, “My autistic child.”  I think of him as Daniel. I think of my quirky daughter as Ellana and my intensely principled son as Jonathon. I see each as a uniquely magnificent individual.  All three are beyond labeling or categorizing.  There is no normal in my house.

What is normal?

Synonyms for normal include:

·         typical

·         average

·         unsurprising

·         ordinary

·         common

Would you like to eat a common chocolate, drink an unremarkable wine, drive an average car, or take an ordinary vacation? Might you prefer chocolate that is uncommonly delicious, a wine that is remarkably silky, a car that offers a surprisingly refined ride, and an extraordinary vacation?

Why then are typical, ordinary, normal children seen as ideal? We don’t hunger for mediocrity in other aspects of life, yet we yearn for uneventful meals, ordinary nights and unremarkable parent-teacher conferences.

We are burdened by the notion that children should be a certain way.  That life should be a certain way.

How They Should Be, How They Are

Most people, either consciously or unconsciously, expect their children will be like them.  Fathers place tiny, spongy footballs in the cribs of their infant sons in loving anticipation of lives of athletic stardom.  Mothers play classical music for babies and take toddlers to Kindermusik to develop well-rounded, cultured children.  Grandmothers study little faces to see who the which family members the babies look like.

All of this usually comes from a place of love for the child and delight at the prospect of another chance at life.
But then something happens.  The future athlete can’t learn to ride a bike or pay attention to directions.  He certainly can’t throw or catch the ball.  The upcoming Miss Charming throws spectacular tantrums and refuses to listen to music.
Teachers and doctors and specialists say its autism or some other dis-order and the parents’ world turns upside down.

What’s in a name?

. . . language is entirely symbolic.  Words aren’t real.  They’re simply scribbles, doodles and sounds to which we assign meanings stored in the brain as images, feelings, and sounds:  mental constructs only vaguely approximating the objects they represent.   We use words to manipulate the mental representations, rarely scrutinizing our constructs under the light of physical reality.

–From Mark Rostenko’s article The Unnamed in Obscurious Moo
At first, the label is a lifeline.  It explains why our children are the way they are.  The words give us something to research:  autism, PDD-NOS, ADHD, sensory integration disorder, reactive detachment disorder.  The words connect us to others like us and are a way to find information.

Eventually though, we realize that our child’s -ism or disorder is not exactly like that of other children.  His or her most triggering behaviors and traits AND most endearing ones are quite unique.

Some suggestions about his or her condition are right on.  Others don’t work at all.

None of us fits neatly into a box.
We are all alike.  We are also all different.

Play a Game

When looking at your child’s differences or noticing people who seem entirely unlike you, play a game.  Say,“Just like me, this person….”

Notice the ways we are all connected. Notice  the ways we are uniquely magnificent.

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