The Bella Chronicles, Part V: Reasons to Advocate

March 9, 2012

by Mark Dunning 

My daughter Bella is thirteen years old. She is in the first year of middle school and has had a very hard time. With her permission, I have been writing about her experiences and what we did as a family to address the issues. You can read the previous posts here (Part IPart IIPart IIIPart IV)

Ultimately the biggest factor in Bella's difficulties was that she stopped advocating for herself. This year's ordeal has brought home to us the breadth of situations in which mainstreamed Usher kids need advocacy to succeed. Identifying these issues is the first step to solving them, of course, so we've compiled a list of specific circumstances that have contributed to Bella's difficulties this year with the hope that other Usher families will find this helpful when navigating through the education system.

A couple of things you'll notice about the list that follows. First, a lot of this sounds like stuff covered in an individual education plan (IEP). So it should be taken care of by the school, right? Well, not necessarily. See even the best intentioned schools and the best teachers forget sometimes. Even if the school and teachers and the family are all in violent agreement on the needs of the child, even if everyone does everything they have committed to doing, even if everyone always acts in the best interest of the child, there are still going to be times when the kid has to stand up and say something.

For example, I went for a walk with Bella in the woods the other day. It was a narrow trail and she was walking in front of me. She asked me to stop talking to her until the trail widened and she could walk beside me because she couldn't read my lips when I was behind her. Now, I'm her Dad. I always look out for her. And yet, here's an example where even I fail to meet her needs. So don't count on the IEP to ensure the needs of your kid are met. Writing it on paper and implementing it in the real world are two different things. Your child is going to have to stand up for himself/herself pretty frequently.

That's the other point I wanted to make. Think of advocating as teaching. People generally want to do the right thing, they just either don't know what that is or they forget. Bella rides horses. She wouldn't think twice about reminding someone not to walk behind a horse or to flatten their hand and tuck their thumb when feeding a horse an apple. Advocating is no different. No one in the world is more expert on Usher syndrome than a kid with Usher. Bella is just spreading that knowledge when she advocates. So she's not slowing down the class or annoying the teacher or offending her peers. She's teaching them. And I don't say that to make her feel better. It's the truth.

It also means that while kids with Usher need to stand up for themselves pretty much every day, they most likely won't have to address the same issues all the time with the same people. Once a teacher learns that he needs to face the class while he speaks, for instance, he will probably do it every time. Oh sure, he'll need a reminder now and then (like me on the hike), but advocating for yourself early on often solves the problem permanently. You're training someone on the right way to do something.

One final note: This is by no means a complete list. It's a sampling. But I think you'll see pretty quickly why advocating becomes an everyday occurrence for these kids. I'll give you details on some of the issues and let you imagine the honorable mentions.

Visual Issues
Can't read the homework or the test

Sometimes the font is too small. Sometimes the copy is too light and doesn't have enough contrast. Sometimes the quality of the paper makes it hard to read. It seems easy to resolve this problem, right? "Um, Mrs. So-and-so, I can't read this." But imagine the situation. The test is about to start. Everyone else is writing away. The Usher kid is already worried about having enough time to complete it (more on that in a second). The teacher needs to be there to answer questions from the other kids. The kid is worried the teacher will be mad if she has to run back to the copy room and make a larger, darker copy. So they make due, misread problems or run out of time, then feel like they are not as smart as the other kids when they get the grade. 

Honorable mentions
Can't read the number of the bus
Can't read the label on the mystery meat in the cafeteria

Need a break or more time during tests
Even if a test is legible, it can still be hard on a kid with Usher to keep up. This is especially true later in the day. It is exhausting to have Usher syndrome. These kids need frequent breaks. But it's taboo to ask for a break during a test. This is where the IEP is helpful. If a kid knows that the teacher understands, they are more likely to ask.

Honorable mention
Permission to do every other problem on a long homework assignment because it takes you longer to do than your peers and you are already exhausted when you get home.

Can't see the chalkboard/smartboard/whiteboard
Sometimes it's the glare. Sometimes it's the lighting. It might just be that the teacher writes too small or illegibly. Whatever the reason, kids with Usher, because of their hearing issues, rely very heavily on the board for context. When they can't see it, it's a problem. This is one of the easier one's for the Usher kid to advocate for, though, because usually there are other kids in class that feel the same way, even if they don't have vision issues. Kids are more likely to say something when they get positive reinforcement from their peers.

Honorable mention
Need the notes for the days lesson from the teacher because you can't read lips and write notes at the same time (and you can't, so don't even consider asking your kid to do it)
Can't see with the shades closed or, conversely, the lights turned off 

Can't navigate a situation easily without a guide
"OK everybody, we're going to gym to watch a special movie with the rest of the school." Uh-oh, thinks the kid with Usher, it's going to be crowded and dark and I'm not going to be able to see. This is more of a problem early in the school year when the kid might not know the other kids in class all that well. As time goes on, they feel more comfortable latching on to a friend. I suspect this problem will diminish in time with Bella. She's tall and blond. The boys in class are going to be knocking each other over to offer her an elbow. Asking someone you don't know all that well for help is hard, though, especially for self-conscious teenage girls.

Honorable mentions
Can't find a seat in a dark bus without the interior lights turned on (and this changes as the seasons change)
Can't find the right book in a dark locker

Hearing Issues
Can't hear an oral quiz

Bella took Spanish this year. Every day they would have an oral quiz on the words from the day before. The teacher would walk around the room saying words while the kids shuffled their papers, tapped their desks, and groaned. Bella couldn't read the teacher's lips and struggled to hear the unfamiliar words. She had the same problem in music. The teacher would sing lyrics and the kids were supposed to write down the song. Yikes. By the time we figured out what was going on, she was too stressed out and too far behind to catch up.

Two points about this. First, um, hello? Teachers? The kid is deaf. You saw the IEP. You're going to have to adapt your approach for the kid. But this is more about Bella advocating for herself. Realistically she wasn't going to stand up and ask the teacher to change her ways. However, she should have come home after that first Spanish test and told us what was going on. We would have been in the principal's office the next day. But she didn't do that. Instead she boiled until she couldn't take it anymore and we had to pull her from the classes.

What should have happened, and has since with oral tests, is that Bella gets to take them separate from the noise of the class in another room one on one with a teacher. The teacher sits across from her where Bella can read lips, enunciates the words, and repeats them as many times as Bella needs.

Honorable Mentions
Can't understand a video without close captioning (and the other kids groan when the words fill the screen)
Can't hear announcements done over the loud speaker (ask the teacher to repeat)
Can't hear what the bus driver just said (ask the kid in the next seat to repeat)

Can't understand the other kids unless they face you when they speak
Imagine being a self-conscious 13 year-old girl with zits asking the cute boy two rows over to face you when he answers the teacher's question. Yikes. That's the advocating Mount Everest right there. There is a better way to do it. Talk to the teacher after class and remind her to ask all the students to face the kid with Usher when they speak. Better yet, reconfigure the desk arrangement in a square to that everyone can see everyone. Then no one has to remember. Again, this might not be something the kid with Usher says to the teacher, but if your kid tells you, then you can work with the teacher for her. Advocating isn't always student to teacher. It's often student to parent to administration to teacher. But it always starts with the student speaking up.

Honorable Mentions
Can't understand the teacher unless he faces the class when he speaks
Need one kid to speak at a time. No shouting out answers.
Clarifying what was heard. Did you say corporation or cooperation?

Vestibular, Vision, and Hearing Issue
Need extra time to bring equipment from class to class

How about one final example that takes in all three of the traits of Usher syndrome? Bella uses an FM, which is basically a microphone that the teacher wears. She also has a pass around microphone that is used by other kids in the class during discussion. These things work great and really help her. However, there is only one FM and one microphone, so Bella has to bring them with her to each class. It takes time to get the teacher hooked up and time to get the teacher to shut down and hand over the device. It's not long, but it's a minute or two. So Bella holds up the class when she gets there and is the last one out of the room when class ends. 

This is a problem when you have low vision and negotiating the hallways is difficult. Hallways in middle school look like a scene out of Braveheart. There are swarms of kids shouting and jostling as they race from one class to the next. And remember, for kids with Usher type I like Bella, balance is a real problem. The kid gets bounced all over the place, she can't hear what anybody is saying over the din, the lighting isn't great and even when it is, there are shadows and bodies all over the place. 

We've talked a lot about the mental exhaustion of having Usher, but there is physical exhaustion, too. Bella simply works harder physically to get from place to place. And when she has to do so faster than the other kids, it's nearly impossible. Bella's teachers didn't realize this. They were very considerate of her for the most part in class, but the between class chaos was invisible to them. Asking to leave a minute or two early so you can walk an empty hallway and have some extra time to set up in the next class can really help.

Honorable Mention
Need the teacher to wait until you are seated before starting a lesson. The bottom line is that a child with

Usher needs to advocate for themselves almost every day. Sometimes that means telling mom and dad about a problem, sometimes it's reminding a teacher, and sometimes it's asking a peer for a favor. Whatever the route they have to take, they have to advocate for themselves. When they don't, they get very frustrated and their school work can suffer. 

OK, so this gave you an idea of the amount of advocating a kid has to do. In the next post I'll wrote about how we helped Bella to address her issues with advocating.

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