What Now?

So your child has been diagnosed with a hearing disability and your mind is racing with questions: Why? How’s my child going to cope? Do I have it in me to be a parent to this child?

A child with a hearing disability is first and foremost a child. Communicating with and caring for a hearing disabled child may require a little more effort than the average child, but a family that loves a child just as he or she is, is the most important thing in the child’s life.

Very few people are ever fully prepared for a child whose hearing isn’t normal, so coming to terms with the fact may take a lot of processing, alone and with your family.

Sesame Street writer Emily Perl Kingsley wrote a beautiful, widely translated piece about finding out her son has Down Syndrome.



by Emily Perl Kingsley, copyright 1987. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away, because the loss of that dream is a very very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.


Parents of hearing-impaired children often say that the diagnosis opened up a whole new world for them – new contacts, new friends, new peer groups and a whole new way of looking at things. Whether or not this is Holland or some other place depends on your and your family’s personal experience. The important thing is that you have landed somewhere, arrived at a destination. How you go from there is up to you.

You, as a parent, are a child’s most important guide to the wonders of this world. When you need help, you’ll have access to advice from experts in the field, a variety of social services that society offers and peer support from other families going through the same things you are.

Our aim is to help you find all the help you need.