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She May Never Have Many Words

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She May Never Have Many Words

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.

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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.

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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.

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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.

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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!

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But I don’t honestly really know.

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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.

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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.

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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.

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:// the end.

 

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Meriah
Meriah Nichols is a career counselor, teacher and blogger. Single mom to 3 (one with Down syndrome, one gifted 2E), she is also a cat-loving Trekkie who likes her coffee hot and black.
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Myria

Monday 19th of May 2014

I understand the fear. My communication is atypical and my daughter's even more so - I am trying to give her the things I didn't have, like being actively not-passive and the information about people that I didn't know. But she will likely always be an atypical communicator and it doesn't take much atypicality for a person's words to be dismissed.

Kerith Stull

Wednesday 7th of May 2014

I feel the pain in your words here. I am the mother of an 18yo daughter with moderate cerebral palsy. Please be encouraged. My daughter is completely non-verbal. Yes, she makes sounds. But, none of them are discernible words other than a few only a mother could recognize. Yet she is a fairly fluent signer (though a big messy due to her CP). She also uses alternative communication devices, mostly an app called "SpeakIt" (cheap and useful now that she can spell so well). So, again, be encouraged. There are alternatives to verbal speech. Nothing can fully replace it, but they can help let your daughter communicate and bring her out from behind her silence.

Meriah

Wednesday 7th of May 2014

thank you - it's not her lack of words that discourages me - I'm deaf so I am well aware of other alternatives (and yes! I used to help people who were completely non verbal and who communicated solely through eyes and movement and speech devices get jobs).

What I am concerned about is the world around us. As I said in the post, this is a world that will kill a man and give a rapist a re-trial because of the person with Down syndrome didn't communicate in the way that was accepted by the law officers/judge.

Her being understood by us and by her community and those that love her is one thing; being an integral part of her society that will honor non-mainstream ways of communication is another....

Kerith Stull

Wednesday 7th of May 2014

Oh! And visiting from LoveThatMax LinkUp!

Karie

Saturday 3rd of May 2014

You have reached one more person here. Thanks for making me more aware.

Anna Theurer

Friday 2nd of May 2014

I could have written this post. Bear is almost 5yo. Yes, she communicates but not everyone understands her. She has barely a handful of words and her signs are not very fine-tuned due to poor fine motor control (that and she makes up signs!). They are improving but even someone fluent in ASL would not be able to understand her. I worry because of what happened with Ethan, and with the young woman who was raped and didn't "act like a victim". I worry that something could happen at school or therapy and I would not know because she cannot tell me.

Louise at BLOOM

Thursday 1st of May 2014

This was such a lovely piece Meriah and one that I can really relate to. I think what's most important is that you've given Moxie a rich way to communicate through sign. Ben is 20 now, and I still find myself wishing that we had the answer to unlocking more rich communication for him (his receptive sign abilities are moderate, but his expressive is small and he has trouble due to fine motor problems making signs). I hope that in time we will find some kind of electronic way that will be easy for him to use to speak, but he doesn't like using Proloquo and all of the voice devices I've seen are cumbersome and not intuitive. Has Moxie tried Proloquo on an iPad? Sometimes I also think I have to stop pushing him to do things the way I would wish he did them, and accept that he is making choices based on what he's comfortable with. xo

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