If you were to see me out and about with Mia, you’d think we were having a normal conversation between mother and daughter, as I point out the ducks bobbing along the shore, or the ferry making its way across the lake.
Except if you were to listen in closely, you’d notice that I’m the only one talking.
You see, like many children with developmental delays, Mia has trouble with speech.
More specifically, we were told that along with her diagnosis, she would more than likely be non-verbal for life, a typical feature of her rare syndrome.
We received Mia’s diagnosis shortly after she was born.
Any first time parent knows the trials of having a baby that can’t express themselves.
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 that something is wrong?
Will communication devices be useful for Mia’s situation?
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 that we hope she understands.
Even if she doesn’t understand each individual word, I hope that she feels the love that is uttered with each tone.
Even now at four 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 that 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 that she has been there, we’ve already noticed that Mia is learning alternative ways to express herself.
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 were even able to catch 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 look for signs that she understands.
Not always sure if the comprehension is there, I try to make decisions and give Mia answers that 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.
During a doctor appointment where we need to talk about Mia, I set the tone by talking about Mia as if she understands every word.
The truth is, we don’t know her level of comprehension, but I know that 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.
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