I understand the need – necessity even – of campaigns like ‘More Alike Than Different‘. We want others to see our kids as we do; bright and beautiful, a truth perhaps for all mothers. In the case of mothers of kids with Down syndrome, the urge is perhaps stronger as we know our kid is likely to get passed over, ignored, opportunities hidden because of preconceived notions of what having those almond eyes mean. So there are campaigns like ‘More Alike Than Different’ and I get it, I really do.
And yet.
Knowing how alike our kids are with us (flesh of our flesh), I find myself more drawn to the differences that our kids bring with them. I am interested in them because this is a group of people we talk about in such stories – a group. What happens in that gift of the extra chromosome? What is it, exactly, that seems to add with it an extra dollop of care to the recipient? Or does it really? Do people with Down syndrome really care a lot about other people?
***
The others in Moxie’s small tribe, a group of children with Down syndrome born within a month of each other, are on par with one another. Some are far and away more communicative than Moxie, some have less defined gross motor skills, some have more. It’s all as normal as can be with small children that are developing in their unique ways, and yet, they share some gestures, some ways of interacting with the world that I don’t see in kids without Down syndrome. Hand movements, upward smiles, a stupendous affinity with music.
I am new at this. Both new as a parent and new with the world of Down syndrome. But this difference that I see enchants me. It makes me want to learn more about exactly why the extra chromosome affects our kids in the ways it does. And how does it affect the non-tangible bits, like the bits related to care and affection? The soul-juice stuff?
I know how important it is to emphasize the ‘same-ness’ of our kids, to drive it home that our children are children and that having Down syndrome is no more a definition of who they are than my being deaf is a definition of me, Meriah. It will affect how you communicate with me, yes it will and to deny that would be foolish, but the silence and sounds of my world do not define me as a person. They simply define the way in which we interact and they are but a lens that I place over my (already thick) glasses and see things. Because of these glasses however, I do see things that are more difficult for others. I am highly visual. I do very well in cultures that rely on nonverbal cues.
My being deaf is something and yet it’s not. My Moxie having Down syndrome is something and yet it’s not. In my case, I know the answer to both pieces – I know why my deafness is something and I know how it’s not. With my daughter, however, I only know how it is not something – I do not yet know how it is. I don’t know her differences – I know they exist, but I do not know how they will flavour her world in delicious ways, much like my deafness flavours mine.
This, I look forward to discovering.
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.
Meriah,
I have been reading your blog for a couple of months now and really enjoy it. This latest post has prompted me to share this link to a Project I am running for an organization, Aspire, that delivers services to children and adults with developmental disabilities. What I love about Aspire is they strive to embrace the different with the possibilities that can come from inclusion. If you are interested, this is the link to the Project: http://ow.ly/hs6sw
Thank you for the kind words, Shaun!
I’d be honored if you shared any of my posts. The project sounds really fantastic and I”m looking forward to spending time on the site.
Thanks again.
Thanks for the note, Meriah…I will be sharing 🙂
I love how Cate is different in the way she is so thankful and aware of other peoples feelings. How many 7 year olds do you know that remind everyone at the dinner table to “thank mommy for the delicious feast” (she likes to think every family dinner is a celebration!)pretty much every night? How many 7 year old without hesitation answer the question “what are you thankful for” with “my family” instead of their toys or ipad? She even told us she loved us during her kindergarten graduation when she was suppose go to the mike and say what she’d learned that year. She is just an awesome person and I can’t take very much credit for it because it comes so naturally to her.
Meriah, you ROCK. Thank you! Love your unique perspective, as always. And you are SO right about the stories of how people come together as a group that are far more fascinating than the ones of success as, say, a bagger. While that’s not a *bad* thing, it’s just, well, nice. Not awe-inspiring or mysterious or something that defines an amazing part of that extra chromosome. 🙂
Wonderful post. I’m new at this, my 5 month old son has Down syndrome, but you’ve put into words some of the things I’m just beginning to figure out how to think about. I want to do everything I can to let my son live and function happily in the world, of course. But I also want to celebrate who he is and how his extra chromosome is a part of him.