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Sunday, November 4, 2012

A Brief Guide to Teenagers and Usher Syndrome

by Mark Dunning, Idiot

My daughter turned 14 last month, so she has been officially a teenager for a little over a year.  During that time, I have gotten an education on teenagers, an experience cast by the prism of Usher syndrome.  Bella has Usher syndrome type 1b.  I know that the combination of Usher syndrome and teenagers gives most parents hives, so I thought I’d take a few moments today to talk about my experiences with an Usher teen.



My beautiful loving daughter who thinks I'm a moron
First, the usual caveat:  I have no idea what I’m talking about.  I’m not an expert in anyway.  If you take my advice on anything, you do so at your own risk.  I’m an idiot.  Just ask my daughter.  Hey, that’s a good place to start!  Here’s some of the things I’ve learned:

The fact that your child has Usher syndrome does not make you any less of a dummy in his/her eyes.

I don’t dance Gangnam Style.  I don’t OMG or LOL.  I argued that “pwned” wasn’t an English word and the Urban Dictionary isn’t really a dictionary.  I still use the phone on the wall, for goodness sakes.  Mark Twain once wrote “When I was a boy of fourteen, my father was so ignorant I could hardly stand to have the old man around.”  Well, that’s me.

But I have also learned that, believe it or not, this is a good thing!  Teenagers are supposed to think you’re stupid.  They NEED to think you’re stupid.  To grow up, they need to do things on their own and they need to have the confidence to do so.  I hate to say it, mom and dad, but they need to believe they no longer need you.  They need to believe they know better than you.  And they need to fail.

This is especially true for kids with Usher.  All parents want to protect their kids but as parents of children with Usher, we spend a lot of time talking to the school on their behalf, talking to other parents on their behalf, prepping the kid about safety before an activity.  Out of necessity, we have been deeply involved in a lot of circumstances other parents don’t have to go near, This has been the right thing to do, of course.  These kids have needed our protection.  They can’t hear.  They can’t see well in certain situations.  They have balance issues.
 
Yet for these kids to become adults, they need to learn how to advocate for themselves and navigate the world as an adult with Usher.  The first step is for them to believe they can do it and that they don’t need your help.  Unfortunately, that often translates to “I don’t need your help because you’re an idiot.”
 
Just remember the rest of that Mark Twain quote: “But when I got to be twenty-one, I was astonished by how much he'd learned in seven years.”
 
So I guess the good news is I won’t be dumb forever.
 
Your teenager will be moody about Usher syndrome

…and your teenager will be moody about the amount of milk in a cereal bowl, about the way you looked at him/her, about the smell of a little brother.  So, yeah, of course they’ll be moody about Usher syndrome.  Teenagers grow like kudzu, they sprout hair in adult places, boys’ voices change, girls get, uh, girl parts.  They are raging factories of hormones.  They are, quite literally, chemically imbalanced.  They are going to be moody and Usher syndrome is going to be a target.  That’s not a problem.  Just don’t let moody become brooding.

You know your child.  You know if they are acting more reserved than normal, more removed than is healthy.  My daughter is like a porcupine most days.  I stay a safe distance.  But there is a difference between giving me disdainful glances and avoiding me all together.  One is normal, the other indicates a problem.  So watch for the problems.  And, unfortunately, telling you they hate you and slamming a door shut or tearfully telling you they love you because you bought the kind of peanut butter they like doesn’t indicate a problem.  That, regrettably, is normal.

The key is to keep the door open to talk about Usher at any time.  Bring it up every once in a while.  If you get dismissed as an idiot, well, rejoice.  They are just being moody and all is well!  If the child reacts out of character, whether overly emotional or hiding from the subject, that’s different.  We experienced this last yearwith Bella.

The rule of thumb we use with Bella is to talk about it a little a lot.  In other words, it’s a frequent but brief topic.  We hold two to three sentence conversations about Usher with Bella just about every day.  It’s usually things like “Are you sure you want to wear stiletto heels?  Remember, you have balance problems” or “I don’t like fish.  You don’t like fish.  But we are all eating fish because it might help your vision” or “You can go to the Halloween party, but remember it’s probably going to be dark.  So make sure you let your friends know if you need help.”

If she replies with a look of utter disdain or flips out about how much she hates us for butting in to her life, then she’s doing OK.  But we never let it go long without checking in.  I liken our means of discerning moodiness from a real problem to being a beekeeper.  You gotta check on the bees even though you know you’ll probably get stung.  It’s when they don’t sting that you worry.

If you think your teenager might just be moody about Usher and would talk, but just does not want to talk to you, the Coalition for Usher Syndrome Research can put them in touch with other teens with Usher.  There is also a Facebook site maintained by a teen with Usher.  And, of course, most schools offer resources for counseling that might be appropriate.  Just don’t avoid the topic.  Find a way to get him/her to talk about it, if only a little.  Moody is OK.  Brooding is not.

Teenagers are self-centered narcissists, but in a good way. 

Teenagers have absolutely no perspective on life.   They think the world revolves around the school and their friends.  They think middle age is something that happened to you, but won’t happen to them.  They will always be thin.  They will always have hair.  They will never have a job like you.  They may get older but they will never be old.

This is a good thing to remember when you talk to your teenager about Usher syndrome.  I’ve written about what to tell your child about Usher syndrome here and here but I thought I’d elaborate for teenagers.  I’ve recently talked to a couple of parents of children diagnosed as teenagers and they are particularly concerned about how to discuss the diagnosis with their child, as they should be.  An Usher syndrome diagnosis is difficult at any age but the thought of introducing it to a teenager lost in the purple haze of puberty is exceptionally frightening.  

I’ve learned to remember that narcissistic perspective when I talk to Bella about Usher syndrome.  When we discuss vision loss, we talk about it happening when she is older.  We do this for two reasons.  First, it’s the truth.  Almost all people with Usher retain usable vision in to their 30s and beyond.  But secondly, by putting it in a future context, she doesn’t worry about it as much.  Why?  Because she doesn’t ever plan on being older!  It’s impossible to imagine.

Here’s a verbatim discussion I recently had with my daughter.  For context, I had just asked her if she would be willing to talk to another teen about Usher and over the course of the conversation, this happened:

Me:  “Are you worried that you might go blind?”
Her:  “I’m going blind?!”
“Well, no, I hope not.”
“Then why are we talking about this?”
“Look, you know what I mean.  You’ve met adults with Usher.  Often people with Usher have vision problems when they are older.”
“Like how old?”
“I don’t know.  Thirty, forty.”
“Forty?!  I thought you meant when I was in high school,” she waved her hand dismissively, “Pfft.  I don’t worry about being forty.  No.  I don’t worry about going blind.” 

End of discussion.  Actually, that wasn’t the end.  She then went on to tell me how much she thought her new haircut made her look like Emma Stone.  See?  Narcissist. 

Note how I never said she was destined to go blind in our conversation.  I never say that to Bella because I simply don’t believe it to be true.  But even if I were certain that someday she would be blind, she’s not blind today and won’t be for years and years.  As long as it’s out there somewhere in the future of oldness, she’s OK with it.  
 
HOWEVER, if you tell a teenager that they are going to go blind and don’t define the timeline, well, holy hand grenades, look out.  You’ve just stepped right on the third rail of teenage angst.  Everything in the present is a big deal to a teenager, especially those things that might make them different than their peers.  If blindness is in the present, even in suggestion only (and it very rarely is there in reality for kids with Usher), then they will struggle with it emotionally.
 
So my advice is talk about Usher a lot but keep the discussions focused advocating in the present.  All discussions about what the future might hold should be abstract since none of us really knows what the future holds anyway.  You’ll still be an idiot, but they’ll be more willing to talk about Usher and the emotional impact will be minimized.  Oh, and since they assume everyone is looking at them, remember to complement them on their haircut.
 
So there it is.  There, in less than three pages, is all I think understand about teenagers.  But I wouldn’t trust any of it.  I don’t know anything.
 
Just ask my daughter.
 
Editors note: Prior to posting I read this to Bella.  Here's what she had to say about it:  "I think it's good and will help many kids.  But you're still a moron."  At least she has a good sense of humor.

3 comments:

Louise Giordano said...

Love this, Mark! I think a book is in the offing! Gop for it!

Anonymous said...

I encourage you to have Bella meet other Ushers that are closer to her age. I had a friend that was informed by her father she wouldn't be blind until "later, later". Well, it turned out she lost her vision completely in college!! Yikes.

Had she met other Ushers, she might have a better sense of what may be in her future. By letting your daughter "put some things off", it is a disservice.

Anonymous said...

Hi, it´s so nice to hear from people in our same situation. My daughter is 8years old, we know she has Usher´s since last year, well, the genetic confirmation because I suspect it. We have told no one, so you can imagine how lonely I feel about this, I even avoid to talk about it with my husband because I don´t want to make him feel sad. We always have taken her to the best speciallist we know about deafness and eyes, but until know she hasn´t present any symptom for the RP. I am scare to tell people, and have her feel that "poor girl" treatment, it´s already enough with the cochlear implants, even that she´s doing fantastic. We have decided to just live one day at the time and do as possible for her to be as happy as she has been until know. She´s a sunshine. Thank you and don´t worry about your teenager phase, she will grow up and love you more than ever! Hugs from Spain