deaf

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When Kass was six months old, she was officially diagnosed with profound hearing loss in both ears. She has 90% hearing loss in one ear and 95% loss in the other. Further testing showed that the reason for Kass' hearing loss is due to a malformed middle ear. The reason behind this is unknown, but known not to be genetic, as Gracie, her identical twin, is not deaf.

Sandy and Bill suspected that Kass was deaf almost immediately, as she did not respond to noises around her. If both babies were sleeping, and there was a loud noise, invariably, Gracie would jerk and wake up, but Kass would not. They were at first told that this was simply a personality difference between the girls, but they persisted in testing.

Since being diagnosed, Sandy and Bill have taken Kass to speech therapist and have proceeded in learning sign language. Every week, both girls go to one session to learn sign language and Kass goes to an individual session. Every other week, Sandy and Bill attend yet another session to learn how to best educate, communicate with, and parent Kass. When I visit or when Sandy writes to me, she shares the latest signs that the girls have learned. However, I know as they grow older, their vocabulary will explode beyond what I can keep up with. But it is fun to watch the girls develop their language. Though Gracie hears as well as anyone else, she uses all the signs that Kass has learned. Being toddlers, they have their own variations of signs, and the girls share some signs that no one knows what they mean.

My thanks go out to Sandy and Bill for not only being able and willing to care for two premature babies, but to also joyfully parent one with special needs.

Some links to information about deaf children:

Deaf Children
Deaf World
Oral Education for Deaf Kids
Services for Deaf Kids
Stories for Deaf Kids

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WELCOME TO HOLLAND
By Emily Perl Kingsley

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 guide books and make your wonderful plans. The Coliseum. The Michaelangelo 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! I've dreamed all my life of going to Italy." But there's been a change in the flight plan. You've landed in Holland and there you must stay

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

So you must go out and buy new guide books. And you must learn a whole new language. And you meet a whole new group of people you never would 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 awhile and catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has the Rembrandts.

But everyone you know is busy coming and going from Italy...and the'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 go to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

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At the risk of sounding presumptuous, I dedicate this essay to Sandy and Bill.

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