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.
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 career counselor. Solo mom to 3 (one with Down syndrome, one gifted 2E). Deaf, with C-PTSD and TBI, she’s also a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.