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When there’s more

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. 

“I just had this funny feeling in my guts; I said this is not deaf behaviour.  Something’s not right; this is not typical.”

One of the many things no one tells you as the parent of a deaf child is the very real possibility that your child’s initial prognosis is not always fixed or stable; that there will be, more often than not, more things to deal with.

In the beginning, it is quite enough to cope with the fact of your child’s diagnosis, wherever they land on the hearing loss spectrum: mild, moderate, severe, profound; hearing aids in one ear or both; maybe it’s bilateral cochlear implants or one at a time. Or perhaps no device at all.

Adjusting to what it all means for you and your child takes time, and the learning curve is steep with a barrage of tests and appointments that comprise this new world you’ve been thrust into. You may not have been here before, but it is where you live now.

But the remarkable feat of strength it takes to adapt to that first hearing loss diagnosis does not always prepare us for the ongoing ups and downs of gradual or sudden changes to our children’s health.

Maybe it’s when your child doesn’t seem to be responding as well to your voice. Are their hearing aids working, or is it something else? Or are they suddenly acting out or becoming increasingly withdrawn in ways that their diagnosis cannot adequately explain?

It’s so important to listen to your instincts during these times. Heed that voice inside your head that shouts at you to do something. It’s ALWAYS okay to raise your fears with someone in a position to listen and help, whatever the outcome.

Because if that anxiety in your gut was a sign that you were reacting to that something more, like a permanent drop in hearing or an additional diagnosis like autism spectrum disorder (ASD) or global developmental delay, then you have done more than confirm that you were right to raise a red flag.

In fighting to understand the evolving picture of what your little person is dealing with, you have given them the best possible chance to access the vital help they need.

So never forget that you are your child’s best advocate, because nobody on earth knows them better than you.

Thank you to Melinda Hilderbrandt for her literary touch on this parent story.

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