Telling The Stories (of Ourselves and Our Children with Disabilities)

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Telling our disabled child’s story is a big question within the Down syndrome (parent) community. Should we? Are they our stories to share? What about our own stories? Are they something we should share?

Personally speaking, I think that us parents should tell our stories, that those stories are crucial to the relay that is parenting kids with disabilities.

But I don’t think it’s possible for us parents to tell our child’s story. Which should make sense, right? I mean, think about how your parents would tell your own story: would it really be your story?

No. It wouldn’t, and you know it wouldn’t.

I think we parents can – and should – tell our stories just as they are. From our own vantage point.

Rather than say, “Moxie’s saying you should eat tomatoes when you wear a wonder woman dress”, I would say, “Moxie looks like she is on cloud 9; total bliss, when she’s facing a bucket of tomatoes she can call her own. And the wonder woman dress is icing


telling your disabled child's story

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I can’t say what she’s saying if she’s not saying it.

I can’t put words in her mouth. I mean, I could, but if I did, then they wouldn’t be her words; they’d be mine.

They came from my head, not hers.

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Our kids might know ASL or another signed language.

Or they might be able to verbally express themselves. Or not. But regardless of their ability to talk or communicate via an expressed language, our children have their own stories to tell.

Their lives are theirs, they are not ours.

We are the parents and we do not walk in the path of our child; we walk alongside our child.

We can try and help our child express their own story, but we cannot tell their story for them.

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I feel like this post is just silly in a way, you know, though, because the people who write those types of memes or posts, the ones talking about how “Johnny just wants you to know that HE IS GREAT” or whatever, aren’t the type of people who read this blog anyway.

I feel like this is probably just church preaching to the choir.

Cows to the cud.

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I think there is a world of difference between trying to be an advocate for your child and actually trying to speak FOR your child.

The advocate asks the child; the advocate tries to empower their child.

The advocate tries to help the child express their own story.

Speaking FOR your child is about thrusting your opinions and ideas ON your child.

Telling your child what they think/feel; telling the world what your child thinks/feels, even if you don’t actually know.

Even if you never asked.

Assuming that because your child doesn’t talk, they don’t have an opinion or a feeling on a subject.

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My daughter doesn’t talk much.

She may or may not ever learn to talk much.

Her lack of verbal expression doesn’t mean that she doesn’t have her story to share though, does it?

God, I hope not.

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And I can’t believe that regardless of her verbal expressive ability she doesn’t have her story to share – because it just doesn’t make sense to me.

She’s a vital child with a life that is full.

Roads and choices lie before her and I know it’s going to be an interesting journey for her. I see my own role as a facilitator of sorts – I need to try and figure out how to help her tell her story, and how to help her learn to navigate her world and gets what she wants.

Reach her dreams.

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That’s what I meant about parents telling our children’s stories: NOT that we parents of kids with disabilities shouldn’t tell our own stories; I think we should.

We definitely should, and I think we yearn to, need to, and that others also benefit from our sharing.

But I also think we should try and help our child tell their own story, rather than put words in their mouth.

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Meriah Nichols is a career counselor, teacher and blogger. Single mom to 3 (one with Down syndrome, one gifted 2E), she is also a cat-loving Trekkie who likes her coffee hot and black.
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