There was a great post out last week by Carly about moms who blog about their kids with disabilities, or “special needs” as it’s popular to say here in the U.S.
Her post was excellent – it’s here – I think you should take a minute to read it, if you haven’t already. I’ll wait.
Okay? Read it?
I’m a person with a disability and I’m the mother of a person with a disability that is different from my own. It’s also a disability that has enormous discrimination leveled against it, it’s a disability that has few self advocates. And it is a disability that faces prejudice even from within the disability community. My daughter has an intellectual disability; Down syndrome.
Choosing to keep my daughter, making the conscious and informed decision to bring into the world and raise an individual with Down syndrome was one of the hardest decisions I’ve ever made in my life, if not the hardest. And by doing so, it literally changed my life. It gave me balls to do everything else – quit my job, take huge risks and flying leaps into unknown`yurts off the grid.
I want to write about that.
I want to write about how it feels to grow that kind of courage, about what a choice like keeping your baby that has been diagnosed with Down syndrome can result in. I want to write about how deeply it has affected me. And I understand that other parents of people with Down syndrome do, too.
It’s our own version of the Motorcycle Diaries, being Che Guevara and having the world change us, so that we can change it. It’s big, it’s profound, it is our story.
I think that so long as we keep to that, it’s staying true to our selves. We have our story – all of us do – and it’s no less by the fact that it’s a parental one.
But we cross the line, I think, when we start to tell the story of our child.
When parents of kids with Down syndrome, Autism, Deafness, etc, say things like, “THIS is Autism” or, “the challenge of being Deaf.” The parents are absolutely unqualified to tell those stories or make those statements because they really don’t know. They can’t speak in the voice of their child and tell the world what their child is thinking or saying, because they are not their child. Full stop.
They might think they are qualified to do so, or they might think that they know what disability is all about because they are raising someone with that disability, but they are not walking in the shoes; they are walking alongside the shoes.
There is a world of difference in that perspective.
Parents of people with disabilities need support and need to connect with one another.
Their own rich, deeply powerful and beautiful stories are a way to do that. I started Down syndrome Blogs and hosted about a hundred blog hops on this blog as a way to help facilitate those stories. But when I realized how few stories were being told by people with Down syndrome themselves, I switched it to a new blog called A Day in the Life With Down syndrome (– 2023 note: now defunct) with the emphasis being on stories told by people with Down syndrome.
We parents need to find a way to share our own stories as parents, and connect with one another while still giving our children the space and wherewithal to tell their own stories the way that they will.
We need to let them shape their stories. We need to provide that foundation for them – a stable support – and step away. Their story is not ours, it never was.
Like Gibran says,
They come through you but not from you,
And though they are with you yet they belong not to you.
You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
It doesn’t matter what disability a child has – if she is nonverbal or communicates in a way that few understand.
Their story is theirs, and theirs alone to tell.
I hope many of these “special needs” parent bloggers will take a page from Carly’s post and respect their children enough to quit telling their story.
Through that respect, they will also be teaching their child that they are worthy of respect and actually giving their child the surge of the self-confidence that they will need as they navigate their future.
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.