This story represents the stories of parents whose children are deaf or hard of hearing with additional needs.
We interviewed some parents and their thoughts and perspectives are combined into this story – written for Aussie Deaf Kids by a writer and academic.
“And I ended up having to say ‘no more! I can’t do this much therapy!’”
Therapy. Therapy. Therapy. Endless appointments and tests and doctors prodding and probing your baby or young child.
You might have a central diagnosis and a way forward with hearing aids or cochlear implants, but that’s when the real work begins.
Whatever their age or level of deafness, early intervention for our children focuses upon an urgent race to make up for lost time – any time spent without hearing speech sounds is linked to a delay in learning how to speak.
So, we commit to the intensity of regular speech therapy appointments for our children, who are often too young to understand what is happening. The lessons are for the parent/s to absorb and put into practice at home.
The responsibility to keep the thread of therapy running through every experience is important, but some days, it is a heavy duty leaving no room for spontaneous, non-teachable moments with our little ones, let alone their hearing siblings.
I remember so well the feeling of trying to get my very complex daughter to and from yet another stressful session where her escalating behavioural issues threatened to pull the waiting room walls down and bury us within.
Or the sense of judgement that I was somehow to blame for my child’s inability to attend to a task that no part of her was able to understand. “It would be a shame if she was seen to be a naughty child…”
And the guilt I felt wondering if the cost – to our family life, to the emotional health of my daughter, to my sanity – of all of that therapy, therapy, therapy, was worth it if my child’s hearing loss was deteriorating and the delay to her speech was growing more severe still.
But inside all of that chaos and stress remains space to make decisions that are just for you and your family.
For me, it was a six-month pause in all therapy appointments. No more screaming meltdowns and sweat running down my too-tired face trying to drag my girl out of school where she felt safe and was gaining valuable skills to endure her third appointment for the week.
No more. There is always space to say “enough”, just for now or longer if you need to.
Let my child just BE. Let them go to school and come home and watch television and laugh at silly things.
Thank you to Melinda Hilderbrandt for her literary touch on this parent story.
