What You Should Tell Your Child About Usher Syndrome

March 15, 2011

by Mark Dunning

In the last post we discussed when to tell your child that he or she has Usher syndrome. The conclusion of that post, in short, was when you are emotionally ready to discuss it, discuss it. I don't care if your child is 15 months or 15 years. Talk about it as soon as you, the parent, can handle it because your child is already able to handle it. You just learned your child has Usher syndrome but your child has had Usher syndrome their entire life. It's new to you. It's not new to them. They just don't have a name for it yet. I can't tell you how many Usher adults I have spoken to who either a) wished they had talked with their parents earlier and/or b) felt some level of resentment that their parents kept the diagnosis from them for a period. Remember, the most important thing in a parent-child relationship is trust and honesty.

Of course, when you do speak to your child about Usher syndrome, you don't want to freak them out. I can give you some guidelines on what to say, but I can't tell you the specific words or tone to take. That's because every child and every situation is different. How and what you would say to a teenager is different than what you would say to a young child. Kids have different personalities and families have different ways of speaking to each other. I've known perfectly functional emotionally stable families that love each other who were most comfortable when they were yelling at each other. I can't tell you what works best. It's your family.

But I can give you advice on the message you should deliver. So here goes:

Be positive and don't put limits on them.

Usher syndrome will not prevent your child from living a happy life. Don't give them the impression it will. There is no reason that they can't accomplish anything they want to do. When my daughter was born deaf I assumed she would never appreciate music. Now she sings in the chorus. She's probably not going to win American Idol any time soon, but if I had told her she'd never be able to sing she might never have tried and I would have been wrong.

What to say? "You can accomplish anything you want to accomplish. You just might have to work harder than most to achieve it. But if you really want to accomplish something, if you really are committed to it, no matter what it is, you can do it."

Now somewhere out there a reader is saying, um, my kid is NOT going to be able to be an airline pilot. I strongly disagree. It might not turn out exactly as they expect, but who's to say the technology doesn't change enough to allow them to do it. Heck, if your child is committed enough to doing it, they might be the one that invents the technology that allows them to do it. Don't limit what they can do.

Tell them the truth and don't try to predict the future.

The truth does NOT include telling them they will go blind. That is the future and the future is not the truth. The future is a possibility. And don't even get me started on what, exactly, constitutes blindness. The truth is today and only today. Here's the truth I told my daughter:

"You have Usher syndrome. You were born with it. It's not catchy so your brother and Mommy and Daddy won't ever get it. It's the reason you are deaf. It's the reason you have trouble with your balance. It's the reason you have trouble seeing at night. It also means that your eyesight might get worse over time so we need to see the doctor regularly to check your eyes."

That's it. That's the truth of Usher syndrome as it pertains to my daughter. My daughter might have severe vision issues later in life. We might also find a cure and she never loses her vision. I can't predict the future. When you tell your child they have Usher syndrome is not the time to turn in to Nostradamus.

Talk about it a lot and talk about it a little

I told my daughter she had Usher syndrome when she was 9 years old (because she was diagnosed when she was 8). She didn't have any questions about it at the time because, as I said, she was 9 years old. She just went back to playing with her model horses. But that wasn't the end of the conversation.

When she wanted to go trick or treating with her friends, we said "sure, but remember, you have Usher syndrome and you don't see well at night so be careful." When her class held a roll-a-thon to benefit the Decibels Foundation (and raised $20K, by the way), we talked about Usher. we said, "It will be noisy and dark and you'll be on roller skates. You have Usher syndrome so that will be hard. Do you want to do it?" She did and was better than half the other kids.

The point is we talk about Usher syndrome all the time. We make it part of our lives but we don't dwell on it. It's easier to discuss in short snippets. Someday, maybe, she'll want to have a long conversation about it. If she does, fine. We'll talk about it for as long as she wants, but that will be her call.

It's OK to say 'I don't know'.

We're all dummies when it comes to Usher syndrome. No one knows everything about the disease. When your child asks a question and you don't know the answer, don't make one up. Tell them you don't know. Then tell them that you know how to find the answer, because you do know how to find the answer. You know how to get in touch with the leading experts in the world and if they don't know, well, no one knows. Then contact the Coalition for Usher Syndrome Research. They know all the experts.

Use language to which your child can relate

This part is for Jennifer. If you are a molecular biologist and your child is comfortable discussing the Myosin 7a protein at the age of 3, well, have at it. Most kids won't get it. Use metaphors they understand. My son Jack asked if Bella was going to go blind. He likes sports. I told him that was a possibility, but Bella had a long time before that would happen and a lot could change. I used the analogy that we were only in the second inning when it came to Bella and you can't tell how a game will end in the second inning. I'd like to think he understood that language, but by the time I finished my sentence, he'd changed the subject to Pokemon. Which brings us to...

Why are you crying?

You are most likely taking this harder than your child will. I fretted over telling my daughter for months. When I told her, it was over in 30 seconds, she shrugged, and that was it. You just learned that your child has Usher syndrome. You think something has changed. They've lived with it their whole lives. Nothing is different from their perspective. Keep it that way. By the way....

Don't limit them!!!!

Did I mention this already? I did. You know why I'm repeating it. BECAUSE IT'S IMPORTANT! A young woman I know said it best. Again, I'm paraphrasing. She said yesterday you didn't know I had Usher syndrome. I was allowed to ride my bike at night and I was fine. Today you know I have Usher syndrome and suddenly it's too dangerous. What changed from yesterday to today besides what a doctor told you?

Exactly. Remember the diagnosis of Usher syndrome is just a diagnosis. It's not a fortune. It's not a sentence. To your child Usher syndrome is the only thing they have ever known. Just because you're putting a name to it and calling it a diagnosis doesn't mean that anything has really changed for your child. Remember that when you talk to them. Their star hasn't faded. They can still be anything they want to be.

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