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The Bella Chronicles, Part I: The Symptoms

January 5, 2012

by Mark Dunning

I haven't been very active in writing for this blog recently. There are a lot of reasons involved, but the biggest has been my daughter, Bella. She's been having a tough time. I have spent a good amount of time trying to help her, which is part of the reason I have not written lately. But her problems have also shaken my confidence considerably. It's hard to feel worthy of sharing your knowledge about Usher syndrome and parenting when you feel like you are doing a lousy job.

Bella's life is a frequent topic in this blog, in large part because without her, there is not blog. But she also provides very relevant subject matter. She is, in a lot of ways, a success story. Her vision hasn't changed noticeably in several years. Her grades are on par with her hearing peers. She has lots of friends. She is a model Usher kid. It seems that everything is going great.

Except, it isn't.

Until recently, Bella cried every day before she went to school this year. Every day. When she was in school, she had trouble staying in class. She has been to the nurse's office 50+ times this year. This is completely out of character for her and extremely puzzling to all that know her. Clearly, something has gone wrong.

Over the next several posts I want to take you through the whole story because I think it will be valuable for other parents to hear it. You can learn from what we did right and what we did wrong. But let me set your mind at ease up front. The source of Bella's problems at school are nothing sinister. There is no abuse or bullying or anything untoward. She's just a 13 year old girl going in to middle school who happens to have Usher syndrome. That's enough of a reason for her to have a hard time in school and that's the point.

Bella attends a mainstream public middle school. She is profoundly deaf, but she has two cochlear implants. She understands sign language, but has chosen to use spoken English primarily for communication. She speaks nearly flawlessly, with no deaf accent, though she does still struggle with some words (which her little brother takes great joy in pointing out).

Bella has always loved school. She has been popular with the other kids, active socially, and a solid 'B' student. She rarely complains about homework and has always been quick to advocate for herself. Her situation has required some accommodations, of course. She still attends speech therapy sessions in school, though it is mostly for vocabulary preview at this point. Given her vision and balance issues, she does not attend gym. She rides horses regularly so we are not worried about her fitness. She uses the period when she would have had gym for either speech therapy or as a study. Often she gets help in the study with material she may not have understood in class.

Socially, Usher syndrome can be isolating at times, but Bella has never had a problem making friends. She has always been comfortable explaining to people that she is deaf and asking them to repeat something she missed. She has friends who are happy to guide her in situations where she has difficulty seeing. The cafeteria can be loud and difficult for a kid with hearing loss, so the school has made an effort to accommodate her socially by offering up a conference room in the nurse's office for lunch. They expected Bella to invite a friend or two to join her there. Nine kids showed up. Bella is not short of friends.

She has some of the best professionals in the world involved in her education. Honore Weiner and Tracy Evans Luiselli have (sorry ladies) several decades of experience educating kids. Honore is currently the Education Director of the Decibels Foundation and spends her days consulting with multiple school systems on how best to accommodate kids with hearing loss. There's no one better at what she does. Tracy is the Director of the New England Center Deafblind Project. She has spent her career helping families deal with Usher syndrome, particularly kids in school. Again, there is no one better at what she does.

Honore and Tracy have followed Bella for years and have spent hours working with her teachers to address Bella's needs. For the most part, the teachers have been very receptive of the advice. Her school seems to be genuinely interested in accommodating her needs. Occasionally the bureaucracy is slow in delivering, but there has been little pushback about giving her what she needs to do well, both in terms of scheduling and technology.

At home, my wife, Julia, and I are actively involved in Bella's life. Julia works at the Minuteman Arc Early Intervention Program for Children with Hearing Loss so she spends her day working with kids with hearing loss. I'm the Executive Director of the Coalition for Usher Syndrome Research [LINK TO OLD WEB]. We have access to most of the world's experts on the disease. We have many friends with Usher and we work closely with professionals who help kids with Usher in school. So we as parents are well versed in the issues facing a kid with Usher and hearing loss.

Bella herself is well versed in her condition. She has worked with mobility specialists and has been trained on how to advocate for herself, which historically she has done quite well. (Too well at times. She's a big advocate for herself around the house when it suits her.) Finally, she has attended several Usher Syndrome Family Conferences where she has made many friends and has learned a lot about the condition.

Bella has been actively involved with the Decibels Foundation for many years. Julia and I founded the organization so her involvement was not voluntary, but she seems to have enjoyed it. She is always asking about upcoming events and genuinely likes working with the young kids in the program. As I have written before, her sixth grade class ran an event for the Decibels Foundation last winter for which they received national recognition. Bella was very proud of her class and her friends, but looking back, it was also the first sign of trouble.

The Classy Awards were held in San Diego in early September. We live outside of Boston so we had a long flight. We left on a Thursday so Bella missed two days of school. It was early enough in the year that there was not much content being discussed. It was mostly orientation. She got the homework and was able to finish it on the plane. The missed time seemed unlikely to put her far behind.

The event in San Diego was attended by several hundred people and they all stayed in the same few hotels. So when we walked through the lobby or along the streets in the area, Bella was often recognized by people she had never met. This isn't all that new to her. As I said, she is actively involved with events for Decibels and is well known in the Usher community. She is used to being greeted by people she has never met before. Still, she was a minor celebrity and I needled her about being famous.

Her reaction was not what I expected. Bella has always been buoyant and even tempered. She doesn't get rattled and always maintains her sense of humor (well, unless her little brother is involved). But that wasn't Bella in San Diego. She was not excited about her celebrity or embarrassed by it, the two most logical reactions. She wasn't overwhelmed, either, though that would be understandable, too. Instead, she just seemed weary, as if she were carrying a great burden.

"I don't want to be famous," she said one evening with such sad conviction that I promised her she would never have to attend another event unless she chose to. She's thirteen, I told her, and old enough to make those decisions.

When we got home, Bella came down with a heavy cold. She missed another couple of days of school. She was probably fighting it in San Diego, so that seemed to explain her weariness. When she was healthy enough to go to school, things figured to go back to normal.

But they didn't. The school nurse called. Bella was complaining of stomach pains. She was sent home. This is worth noting because Bella gets stepped on by horses and doesn't cry. Bella didn't blink (literally didn't blink) when she got her ears pierced earlier this year. She once spent the day gallivanting at her grandmother's house then collapsed in the car when we took her home. We went straight to the doctor and found out she had pneumonia. In other words, when Bella says she's sick, it's usually serious. So the next day when she didn't want to go to school, we kept her home.

But the following day brought more of the same. We forced her to go to school, but that brought another call from the nurse. You see the pattern. Headaches, stomach aches, earaches, sneezes, sniffles. Anything and everything was a reason to go to the nurse. Or, rather, to leave class.

And every morning she had a reason she couldn't go to school. Tears flowed. We coaxed her encouraged her, yelled at her, and ordered her. She dropped Spanish because it was too hard (which it probably was). She wanted my wife to drive her to school instead of taking the bus. She wanted to change her schedule. Math was too hard. Social studies was too hard. She said the teachers didn't like her. She spent hours with the guidance counsellor, missing class time.

Bella, this little girl who had always been a success story, a model for what a child with Usher syndrome could accomplish, was falling apart. Worse still, we couldn't figure out why. In the next post, I'll take you through our search for a reason.

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