The One-Sided Conversations We Have With Our Nonverbal Daughter
Except if you were to listen in closely, you’d notice I’m the only one talking.
You see, like many children with developmental delays, Mia has trouble with speech.
More specifically, we were told she would more than likely be nonverbal for life, a typical feature of her rare syndrome.
The absence of speech is a hard one to grasp.
We received Mia’s diagnosis shortly after she was born. Any first-time parent knows the trials of having a baby who can’t express herself.
But what does that mean as a child ages?
Will my child be able to use sign language, sounds or approximations to express herself?
Will my child remain like a baby, only able to cry to let me know something is wrong?
Will communication devices be useful for Mia’s situation?
The unknowns can be stifling.
We’ve chosen to roll with it and take things as they come. In the meantime, my husband and I talk with Mia. The commentary fills our days. On mornings when I get to sleep in and Patrik has duty, I hear his booming voice in our living room as he jokes with Mia and fills her morning with words we hope she understands. Even if she doesn’t understand each individual word, I hope she feels the love uttered with each tone.
Even now at 4 years of age, we have no idea what the future will hold. Mia communicates with her smile and her mood. If she’s hungry, she’ll bang her hand on the table and smack her lips. If she’s bored, she grunts. Want to go faster in the adaptive stroller? Mia will rock back and forth and make a rowing motion with her arms to show us she has a need for speed.
This past August, Mia started kindergarten at a school specialized in the education of children and adults with visual and hearing disabilities. In the short amount of time she’s been there, we’ve already noticed she’s learning alternative ways to express herself. The school is amazing in finding a child’s individual way to communicate and supporting him or her in growing this ability.
Recently she started saying “mom mom.” She says it with happiness and a smile. She knows what she is talking about! It melts my heart. We even caught it on her voice recorder.
She plays her own voice at school by hitting the big red button, unleashing a recorded stream of “mom mom” for everyone to hear over and over again, and she smiles a smile, worth 1,000 words.
I imagine that her proud smile means, “That’s my voice. Don’t underestimate me.”
Until Mia adds more words to her repertoire or gains more exact skills in communication, I’m going to keep on doing what I’m doing.
And that is talking.
I talk to her as if we are having a two-way conversation.
I look for signs that she understands.
Not always sure if the comprehension is there, I try to make decisions and give Mia answers she would want to hear.
I ask Mia’s doctors, therapists, caregivers and teachers to talk to her as they would with any child her age.
That means talking with her, not about her, and giving her respect.
During a doctor appointment where we need to talk about Mia, I set the tone by talking as if she understands every word. The truth is, we don’t know her level of comprehension, but I know I don’t like people to talk about me without acknowledging my presence.
We talk positively.
We are Mia’s voice.
We are Mia’s cheerleaders.
The commentary that rolls off my lips begins from the moment I help Mia out of bed in the morning until Patrik carries her up to bed each night.
Good night, Mia.
Can’t wait to talk with you again tomorrow.
This post originally appeared on Firefly Special Needs Blog.