I’m coming to the point of thinking that Moxie may never be a person who has many words. That she may never be a chatterbox who goes off on verbal tangets, may never talk anyone’s head off. She might never put a string of words together on the lace of a sentence.
Moxie is almost 4 years old and her spoken, recognizable vocabulary has not increased much – if any – this past year. It’s the same charming-to-us mix of verbal and kinestically expressive: “ohhhh-RA!” (- “Dora!”), “ooosh” (- juice), “nnnnnKKKK” (- milk) and so forth. Her signing, however, has noticeably grown in leaps and bounds, both in her ability to manipulate her fingers into the more complicated signs and also in her vocabulary.
Can we communicate with Moxie? Yes, we can communicate. Not usually an issue.
Can the rest of the world communicate with Moxie? I’m not sure.
This piece is uncomfortable for me.
I’m trying to sit still and just BE in the uncomfortable-ness, just let it unfold and be as complex or simple as it needs to.
It’s not easy. I want answers and clear solutions. I want to think that this is going to be okay, that we will strive to only live in places that have communities receptive to Moxie and open to her ways of communication.
I want to think that this is a simply a facet in this prism of experience and life; it’s going to be multi-coloured, just like a rainbow, and it’s okay, a-okay, it’s okaaaaaaaay!
But I don’t honestly really know.
Down syndrome and communication
My mind wanders to the world out there, this great big wide world that will shove men like Ethan Saylor down and kill him rather than take a moment to listen to him, I think of the woman who was raped and because she didn’t express herself “like a victim”, her rapist was given a re-trial.
These are truths: the world can be less receptive to the communication of people with Down syndrome.
People with Down syndrome can be terribly, horrifically hurt because of this.
And so the fact that our daughter may grow to be a person of few words is uncomfortable for me. Worry has sewn itself into the edges of my heart.
Discomfort is heavy but I’m living with this because I don’t want to make up answers to a situation I don’t actually have answers for. I have not lived this – the only person truly living this is Moxie and her tribe with Down syndrome. I can’t make answers one way or the other for them, all I can do in this moment is try and provide a safe space for my child, try and create an environment that listens and supports all types of communication.
And write posts like these – so hopefully maybe we can each-one-teach-one… we can try and open our hearts and listen a little differently, listen to people who have fewer words but – as all humans do – still communicate.
:// the end.
Meriah is the deaf, single mom of 3 kids (one gifted 2E, one with Down syndrome). A longtime career counselor, teacher and disability advocate, she loves helping to create community and empower parents, people with disabilities (and of course, parents with disabilities).