I want to jump up and down, but the “what if” of unpredictability is holding me back from doing so.
I want to say to him “hey, this may be your last year of wearing hearing aids!”, instead I bite my tongue…
This, our journey with hearing loss, a mystery of unpredictability and constantly adjusting. Never knowing if the 5-20dB shift is going to be a “good” or “bad” shift. Will we sit between the mild lines or are we shifting over the moderates lines and will the loss change across the frequencies?
The one day I’m thinking of ways to raise funds for wireless technology and the next I’m wondering if we should “wait and see”.
Since being amplified, his fluctuations has been stable, his auditory skills have improved significantly, and his vocabulary and understanding of language keeps growing.
He still says “uppose” and not suppose, still uses “path” when he means to say part, still wants “buggelgum” when he knows it’s bubblegum.
There are days when he hears okay without hearing aids. And then there are days when I can’t curb my frustrations, “please put on your hearing aids, I’m tired of having to repeat everything”.
I watched him at school standing in line on the first day. A teacher enthusiastically said to the kids “now Gr. 2s please do your work and show your teachers that we DID teach you in Gr.1”. The kids around him laughed and he just stood there. I asked him if he heard what she said. “No”
It is so frustrating, this “in-between” hearing world. There are days when I wish I could climb into his ears and hear the way he hears. Some days I question my own parenting, my response to professionals and wonder if I am being “over the top”. After all, you don’t know what you’ve missed or miss-heard if you’ve not heard it in the first place?
Professor, Jane Madell, says it best in her article, a mild hearing loss is not a mild problem. She explains, “A child with a 35 – 40dB hearing loss will miss about 50% of what happens in the classroom.” Yet, many children who presents with such a loss receive no intervention at government institutions.
Sometimes you go to the same government facility and receive contradictory information. The lack of understanding of the developmental implications such a hearing loss may have on a school going child is shocking!
I wonder how many children are “falling through the cracks” at government facilities, no interventions no support; sorry your child’s not “deaf” enough. It’s okay if they only hear about 25-50% of what’s happening in the world around them!!
I’m not jumping up and down because I honestly don’t know what to say when my son asks “mom will I always wear hearing aids”
Instead I focus on the now, I focus on supporting him in developing exceptional listening skills. I focus on growing his vocabulary and understanding of language. I don’t give in when he refuses to acknowledge that what he’s heard and what was actually said are two very different words; they said “you ready, NOT new enie”.
I trust our team and continue being the best mom that I can be! I reach out to other parents and families and raise awareness about hearing loss and find my own encouragement and support from the people I encounter.
I celebrate each moment, allow him to live the best possible life and be who he wants to be. I keep my fears in check, control my frustrations, hold my head up high and celebrate how far we’ve come.
I jump up and down for my son, he is awesome, he rocks my world. His young life has challenged me in many ways! His life a blessing to many!