Telling Your Disabled Child’s Story

It seems like I dropped a bomb with my last post about The Mighty. That’s cool, getting a conversation started is something I believe in doing. The only part of it that I feel the need to talk more about is the one point that a lot of people seem to have misunderstood.

And that is, the points about parents telling their stories.

I never said that parents should not tell their stories. In fact, I said the opposite; that parents should tell their stories, that those stories are crucial to the relay that is parenting kids with disabilities.

What I was trying to say is that parents can’t tell their 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

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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.

Meriah Nichols -3-3 Meriah Nichols -2-3 Meriah Nichols -1-3Our 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, they 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.

Meriah Nichols -1-5 Meriah Nichols -2-4I 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.

Meriah Nichols -1 Meriah Nichols -6(cute cows!)

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.

Meriah Nichols -9 Meriah Nichols -11 Meriah Nichols -10My 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.

Meriah Nichols -2 Meriah Nichols -8 Meriah Nichols -7And 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.

Meriah Nichols -20 Meriah Nichols -17 Meriah Nichols -16Reach her dreams.

Meriah Nichols -15That’s what I meant about that piece in that post.

Not that we parents shouldn’t tell our own stories; I think we should. And I think we should try and help our child tell their own story, rather than put words in their mouth.

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Meriah
Meriah Nichols is teacher and artist who lives in a yurt off the grid. She is deaf, has 3 kids (one with Down syndrome) and a lot of chickens. She writes about travel, disability, and getting dishes done. She likes her tea Earl Grey and hot.
Meriah

@meriahnichols

#deaf mom, teacher & #disability activist, living in a yurt #offthegrid. 3 kids (1 with #downsyndrome), a camera and a lot of chickens. Never a dull moment
A comprehensive collection of resources for new parents of children with Down syndrome - https://t.co/WfzGfpmWm6 - 2 days ago
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10 Comments

  • Love this. And I love when Ellie tells her story… as she does, at 4. (Mostly it involves talking about poop and farts. Because she’s 4.) You are such a valuable voice in our parent community by having a foot in both worlds – as a parent AND as a person with a disability. (Oh, and I so want to call you inspirational right now just for an eye roll!!!)

    Hope your trip is awesome!

  • Just out of curiosity, do your kids (including Moxie) use ASL?

    I totally agree btw. I think it’s the height of arrogance to look through our own abled eyes and talk for our disabled children. We can’t possibly know what it’s like to walk in their shoes. Phoenix’s life is her own, and from what I can see, she’s pretty darn happy living it (except when her sisters mess with her stuff, then it is pitifully sad).

  • Thank you for sharing this. It was beautifully said, and you hit a key point that kept being missed(on both sides of the battle). It’s not about silencing parents, it’s about writing from our own perspectives. Your blog is one of the first I found after Everly’s diagnosis and I value your insight.

  • Hi, Meriah. This is so well stated and I couldn’t agree more. But, I’d like to share my thoughts with you. I’m mom to a 14 year old boy who is severely disabled (he suffered a birth injury & has 24/hr nursing care). He can’t and never will be able to take care of himself, he’s non-verbal and is in a wheelchair. Your story resonated with me because I think about this very thing every single day. Consequently, your story made me quite sad. Every child (every person) certainly should express their own personal story. But there are children, like mine, who never will be able to. And NOT because he doesn’t communicate with us in his very own special way (different sounds, his glance, and- with blinking).

    We spent hours and hours, days and weeks (about two years) teaching him how to blink!! Is he a superhero for blinking? ABSO-EFFING-LUTELY!!! But that’s not what this is about.

    When I talk about him, which I do a lot (hey, he’s a cool kid!), I use phrases like: He let us know that he…, or He sure was upset with me because he… I wish, I pray, I yearn for him to be able to express himself. But he can’t, so I do tell his story. It’s a story that needs to be told. Because, you see, he does inspire me. He is my greatest teacher and I do refer to him specifically as- My Superhero. He has had so many surgeries that I’ve lost count. He has almost died countless times. He takes a different medication almost every single hour of the day and night. He has seizures all the time. I won’t go on with this because I know you get it.

    My last thought is– If I’m not sharing him with the world through my telling of his story, how does it get told? (And, damn it, I’m crying as I write this!)

    Thanks for letting me share MY story. (Your daughter is adorable!)

    • Angela!

      First of all, my maiden name is Hudson. I wonder if we are related?!

      Your comment hit me in my heart too. I just finished reading “Ghost Boy” by Martin Pistorius – wow. I think that book, along with movies like “Diving Ball and Butterfly” (was that the title? I hope I got it right) help me to understand communication a little more, and what communication means. Of course as a deaf woman, I also think a lot about it as I am unable to capture a great deal of sound around me – I value communication in a way that many might take for granted.

      I don’t have any answers to your questions of course, because I don’t have a right to answer that or judge. It doesn’t, however, sound to me at all like you are telling your son’s story FOR him; it sounds like you are trying to facilitate his telling of his own story and help his expression be understood. It sounds like you are helping to translate.

      My personal view on this – which is different from mainstream disability activist thought of course – is that we are all choosing our experience, however radical and mind-bending that might be. I’m getting something from my experience here in this world in the same way your son is. Your son is more of a maverick than most as he’s experiencing something few people do; he’s living on the edge. He’s got a particular experience unfolding right now, and he is also getting a lot from it.

      Thank you so much for writing – you’ve given me a tremendous amount to think about and mull over. I’m still thinking about it.

      Love to you and yours.

      • Thank you Meriah, I appreciate your thoughtful response. Funny, I have seen Diving Bell and Butterfly, and I was thinking about my son the entire time. I will definitely look into reading Ghost boy!

        These things are so complex and individual, and I’m learning something new every single day. Please keep sharing your revelations with us. We all learn from one another and it’s really quite fascinating– getting a glimpse into other people’s stories! Keep sharing yours.

        All the best to you and your family!

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