Driving and Usher Syndrome: A Parent Begs for Advice

February 27, 2014

by Mark Dunning

Bella wants to drive. I knew this was coming. I’ve seen it on the horizon for the last eight years. I’ve put off addressing it as long as possible in hopes that some epiphany would strike me on how to handle the situation. It hasn’t happened. Bella turns sixteen in October and Bella wants to drive.

I have never stopped Bella from doing anything. She wanted to sing in the chorus, she sang in the chorus. She wanted to horseback ride, she rode horses. She wanted to do gymnastics, she did gymnastics. She did these things with varying degrees of success and with some (like horseback riding) she has thrived. Others she either lost interest or eventually figured out on her own that Usher syndrome made it more difficult to succeed and she wasn’t really interested in working that much harder. It just wasn’t that important to her.

Driving is different. This isn’t a hobby. This is a potentially deadly activity. Ultimately I want this to be her decision but, man, I have a lot of concerns. Here are just a few:

Bella doesn’t know what she doesn’t see

I know Bella has holes in her vision, places where she doesn’t see well. She knows it, too, and she thinks she fully compensates for it. She doesn’t. She thinks she can double and triple check in both directions before she pulls out on the road and she will be fine. What she doesn’t understand is that her brain is fooling her. 

When the brain is missing visual information, it doesn’t just leave it blank. It fills it in with information it ‘thinks’ should be there. So when Bella pulls up to an intersection and the stop sign is in a blind spot, she’s not going to see a big black spot and know to turn her head to figure out what she is missing. Her brain is going to fill in the place where the stop sign should be with visual information that looks an awful lot like the surrounding scenery. In other words, Bella won’t see a black spot. She’ll see trees or fields or colors that look like the nearby flowers. She won’t know that she missed the stop sign. Her brain won’t tell her. Screeching breaks, horns, and obscene gestures will.

Accident Risk

Bella will always drive the speed limit. She will always be cautious at intersections. She will not drive at night. She’s already told me all of these things and I believe her. She’s a cautious kid. But as I just wrote, Bella might not see a stop sign. She might not see a car coming down the road. She might not see the car pulling out or the deer that just hopped the rail. And if she doesn’t see it, she might get in a serious accident. Bella or a passenger or someone in the other vehicle might be seriously injured or killed.

Guilt

My worst fear is that Bella might hit a pedestrian and spend the rest of her life living with the guilt. I don’t want to lose Bella to an accident. I don’t want to lose her to a serious injury. But those are physical losses. I worry more about her being damaged emotionally. I really don’t want her to be burdened with the guilt of having killed or injured a person. Bella is too kind a soul to have to live with that for the rest of her life. My great fear is not that she misses a stop sign, but that she misses a little kid at a crosswalk. Bella would survive a dented car, broken bones, and lawsuits. I don’t think she’d survive the guilt of accidentally killing someone.

Of course, there are good things about letting Bella drive as well, including:

Empowerment

Most people with Usher eventually decide they don’t feel comfortable driving. I would prefer that this be Bella’s decision. She is intelligent and logical. She can rationalize for herself if this is the right thing to do or not. At some point it is going to be unsafe for her to drive. It would be better, though, if the decision was hers. It is always better to feel you made the choice and that it wasn’t something that was taken from you.

Pride

Kids want to drive. They can’t wait to show off that license in school. It’s a graduation to adulthood in many ways. Bella has always had strong self-esteem. She is comfortable with who she is and has never let Usher stop her from doing things she really wanted to do. Getting that license may be just one more thing that she wants to prove she can do, one more time when Usher won’t stop her.

Access to Social Activities

We live in the suburbs. There is no public transportation. Driving will give Bella access to social events without having to arrange for transportation from a friend or, gasp, from her parents. Given how socially isolating the hearing loss and vision loss can be for people with Usher, it would be great if she at least had easy access to social events. 

This is the point where I usually try to offer some advice on how to proceed in a situation like this. But this time, I got nothing. I am totally drifting along, hoping that the situation will simply resolve itself. Maybe she won’t pass her vision test. Maybe she’ll try driving and won’t like it. Maybe she won’t pass the driving test. Or maybe she’ll be such a good driver and so aware of her limitations that my fears will completely dissolve. 

I’d love to hear your stories about driving and any advice you could offer. I know other readers would love to read what you have to say in the comments. Like I said, I am not much help on this subject.

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