“You don’t have to be scared.”
That’s what Ivanova Smith wishes her mother had known when she was growing up.
Ivanova is an autistic woman and now a mother herself. She was one of five panelists, all parents with disabilities, who spoke at a recent Town Hall Seattle event entitled, “Parenting Without Pity,” presented by Disability Rights Washington.
The purpose of the event was to glean insights from parents with disabilities about how to create inclusive communities and foster positive, holistic identities for kids with disabilities.
For me, it was a chance to better understand my son who is on the autism spectrum. In actuality, I came away with a better understanding of myself.
“When I was a kid there was a lot of fear because of me being visibly disabled,” Ivanova said.
As she spoke, she rocked forward and back in her seat. Sometimes she stopped, swung her feet for a while, then went back to rocking. Her body never stopped moving.
She described how her mother told her to hide her disability. Her mother feared that Ivanova’s odd habits, like her constant rocking, would keep her from finding love and leading a full life.
“I wish [my mother] would have known my rocking and being visibly disabled should not and would not stop me from getting married and having a little one of my own. She did not need to tell me to hide my disability.”
I teared up when she said this. Later, in the car, I sobbed.
Like Ivanova’s mother, I am terrified that my son’s obvious differences will cause others to reject him. I lie awake at night picturing him as an adult alone, wondering who will love him when his father and I are gone.
Ironically, it’s my fear that he won’t be accepted that keeps me from fully accepting him myself.
Ivanova’s words reminded me of all the times I’ve wished my son would act differently in order to fit in.
He’s 8, but he still sucks his thumb in public. Like Ivanova’s rocking, thumb-sucking is a way for him to soothe and regulate himself.
Yet it bothers me.
I see the way other kids look at him. I worry they won’t want to play with him or be his friend.
Even around adults, I am self-conscious of my son’s thumb-sucking. I wonder what they think about him, and about me.
Like most people, I am uncomfortable with difference. I am especially uncomfortable with anything that could be characterized as strange, even when – or especially when – it appears in my own child.
There are times I want to yank my son’s thumb out of his mouth and yell, “Stop that! ACT NORMAL!”
Those tears back in the car? They were tears of shame, not of my son’s behavior but my own discomfort with it.
No wonder I anticipate my son being rejected when there is a part of me that rejects him, too, or seeks to change him.
Ivanova is not alone. She’s married with a child and a community of friends, some of whom are disabled and all of whom she describes as “epic.”
She says if her daughter is ever diagnosed with a disability, she is going to celebrate and take her out for ice cream.
It’s time I let go of fear and celebrate my son for exactly who he is.
Parenting Without Pity is a storytelling project and podcast series where disabled parents draw from their experience of disability to help non-disabled parents be better allies for their disabled children. Find more stories online here.
Lynn Dixon lives in Ballard with her husband and two engaging boys. Her family’s favorite place is anywhere they can spread out, make noise and whack things. She believes there’s no such thing as typical, that every child is gifted and our vulnerabilities are our biggest asset because they connect us to one another. Read more of Lynn Dixon's work on her Somewhere Over the Spectrum blog and her Facebook page.
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