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 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.
You are so right! Maddison fell yesterday and hurt herself she just couldn’t say where the boo boo was. After 5 minutes when the knot appeared on her head I could see the boo boo, but I am sad she could not express to me what hurt. I know her language is coming, slowly, but I fear will she ever be able to express to me, everyone, what is a necessity. #knowing how you feel
Oh man… that’s the worst. When your child is hurt and you don’t know what’s going on exactly because of communication… 🙁 Hope Maddison is better now
This is one of my biggest fears-lack of communication. Twice last week I saw videos of adults with DS and English accents who spoke perfectly with no hint of a speech issue. I want to know their secret.
I think it’s just the way the wind blows… all kids have their areas of strength – Moxie was walking and running pretty quickly for a child with Ds and is incredibly strong and healthy – knock on wood, but she’s been sick ONE TIME in her life (with a cold).
I think about this so often, but you’ve put it into such beautiful words. It is hard not to worry. I know Cora is pretty young at 3 to know what to expect with regard to speech. Her speech has been in a bit of an explosion in the past few months, but even so, the number of words that an outside person can understand isn’t a lot. The rest need context, the help of her signs and are helped by the fact that even if she isn’t articulating very well, she is really learning to be a good communicator. Although she still does do a lot of jabbering conversation. I really am proud of how well she can get her points across, but I definitely worry. Especially now that she’ll be entering a typical co-op preschool in the fall, where she will be the only kid with a disability. I’m not sure how it will work out, but in the next few months we will probably be looking into some assistive devices too. I just want her to be safe. I want her to be included. I want her to be understood.
You always give me so much to think about Meriah…
Oh how I understand. We had very very few words, and last year when ME was 8, I nearly gave up. This year, ever since around January, she is my little conversationalist. Mind you, we know what she’s saying most if the time because we know her words, but honestly, she is finally talking up a storm! Again, with in reason, but we are having a blast with all her new words. ME’s time as usual. We waited almost 9 years for this day. Keep the faith.
wow, Diane!!! 🙂
I am currently pregnant with a girl and she too will have down’s. I feel blessed to have time to prepare as best I can learn sign language, meet therapists and drs ahead of time but even with all that there is so much unknown it can become overwhelming but I have adopted the philosophy that whatever will be is what is and we will work through it. Your little girl will find a way to be heard with a voice, her hands, or by paper when she is older. Many typical kids dont express themselves well to the outside world one of my sons didnt speak til he was 3 not a word and he has no issues now at 13 except he mumbles but Im thinking all 13 yr old boys do!! Your daughter is beautiful by the way as is your blog and family!
Hi, Meriah! Your posts always make me think, sometimes they make me laugh and others i feel my heart heavy, but they always give me hope and remind me that every day has it´s share of happiness by enjoying little details. Loved the pix! (may i share this post in fbk?)
This is a gorgeous post. Thanks for letting us all into your life so intimately – what a captivating little girl.
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
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.
You have reached one more person here. Thanks for making me more aware.
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.
Oh! And visiting from LoveThatMax LinkUp!
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….
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.