“Mama”
I don’t often go back and re-read my work. Mostly because I find typos or sentence structures that make me cringe. Recently, I made an exception and visited Bachelor of Arts written five years ago. FIVE.
I was both devasted and reaffirmed at how much of my half-decade’s old observations, hopes and dreams around Elliott’s communication still exist. Her communication finish line is still a mystery; it was five years ago and it is today.
She began saying “mama”, when prompted, around age 3-4. We tacked on “uh-huh” for yes and a one syllable “oh” for no when she was 6. She can approximate additional words, when forced; “more” and “milk” as examples.
That’s it in the verbal department.
While it seems like so little (because in sum, it is) the tacking on of “uh huh” and “oh” has opened up a world of communication via yes/no questions. Elliott can share her preferences, distastes and desires when asked correctly:
Do you want pancakes for breakfast? “Uh-huh”
Would you like more broccoli? “Oh”
Should we go to the playground? “Uh-huh”
Beyond verbal efforts and ASL, we expanded her potential for optimal communication via an AAC (Augmentive and Alternative Communication Device). She received her AAC device about a year ago and has made significant strides in using it optimally. We’re talking going from “Chocolate Milk, Chocolate Milk, Chocolate Milk!!!!!!” to “I want to drink chocolate milk please”. This didn’t come naturally. It came via encouragement (pushing) and hard work from everyone who plays a role on team Elliott - believing in her abilities and then holding her accountable for that which she is capable of - and more.
Despite this progress, some days she regresses to pointing (with her middle finger, heh) in the general direction of whatever or whomever she desires. She does this with the confidence of a laser pointer attached to the end of her finger honing in on precisely the item she is seeking. She of course does not have laser pointer fingers and therefore, both parties become frustrated by this communication kerfuffle.
I tell her to go get her device. She complies and soon we all understand she wants more chocolate milk…should’ve known.
This summer, we completed a four-week, 16-session intensive voice treatment called LSVT LOUD. The LSVT therapy was originally designed for adults with Parkinson's disease and other neurological conditions yet has since been shown to help children with Down syndrome and apraxia (of which Elliott has both).
Given Elliott’s first few years of life consisted of a trach, she did not get to practice strengthening her diaphragm, lungs and vocal cords - she was hyper focused (obviously) on learning to breathe and eat. Since completing this series, her vocal strength has noticeably increased. It’s as if she realized her seemingly hidden voice is actually more powerful than it led her (anyone) to believe.
On Saturday, August 16, 2025, Brad took Calvin to Academy to buy cleats. It was Elliott, Benny and I at home left to amuse ourselves. Elliott was enjoying some iPad time while Benny and I played whatever invented game he concocted - he was a lion, I was an alligator. We “fought”. He won. I still don’t understand the rules.
Elliott has a tendency of turning up the volume on her iPad to level: Rock Concert. She blares The Laurie Berkner Band for all the neighbors to hear and for my perpetually overstimulated brain to shatter within my skull. We’ve recently made small progress with a compromise - she keeps the volume at 60% of rock concert and we leave her alone. This small progress has been the result of consistent reminders:
“Ellie, turn the volume down or I have to take the iPad away.”
“Elliott turn the volume down, it’s hurting your ears and everyone else’s.”
“EllieBelly... volume down!!!!”
We’re in the playroom and she is testing the decibel levels repeatedly. Therefore, I am reminding her (repeatedly) to turn.it.DOWN. She is annoyed. I am annoyed. Benny is a lion.
I turn back towards a book shelf and begin picking up rogue puzzle pieces when I hear “Mama”.
It wasn’t Benny. it was Ellie. <Author faints>
She said it with intention. With authority. With clarity. Unprompted from outside sources, rather because SHE wanted to get my attention to communicate with me. <Author faints again>
I turn around, shocked eyes full of excitement and say “Yes Elliott, I hear you! What do you need my love?!”
She casually points to the playroom door… middle finger, laser pointer style.
I ask “Do you want Mama to leave?”
She replies “Uh huh”.
So yes, the first time my child called my name intentionally was to tell me to GTFO so she can rock out with The Laurie Berkner Band at volumes likely to cause her ear tubes to voluntarily vacate her ear canals. But hey, a win is a win. Let’s not overcomplicate this. I’m tickled pink over here.
Later that day, during dinner, she did it again.
EJ: “Mama!”
Me: “Yes, baby!?”
EJ points to the TV.
Me: “You want to watch The Goldfish?”
EJ: “Uh huh”
I go hug her.
My daughter was 8 years old the first time she called my name intentionally. I wasn’t expecting it and I don’t know when or if she’ll ever do it again. But the idea that it was in her - all along - just needing the right motivation to come out is exhilarating.
On an ordinary Saturday in August, my daughter reminded me (yet again) to never lose faith in her or her abilities. To never stop helping her grow in all the ways.
And, she reminded me that she is just a regular kid. A regular kid who gets annoyed by their parents and wants to listen to music too loud.
Until the nexT21,
Aubrey
