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Wednesday, March 28, 2012

The Bella Chronicles Part VI: The Conclusion

by Mark Dunning

For the past several posts, I’ve been writing about my daughter Bella and her difficulties in school. To summarize, Bella has always been a good student who loved school. This year she entered seventh grade and something changed. Suddenly she was very reluctant to go to school and was extremely stressed. Ultimately the problem was that she wasn’t advocating for herself. You can get caught up on the whole story with these links (Part I, Part II, Part III, Part IV, Part V). In this last post in the series, I’ll tell you what we ultimately did to help Bella resolve her problems at school.

Gather the Facts

I wrote about fact gathering in Part II of this series, but it was an important step to helping Bella. We had emergency meetings with the school that included teachers, the guidance counselor, the speech therapist, the special education director, the assistant principal, and the hearing and vision consultants that worked with the school. We got everyone’s opinion as to the cause of the problem and listened to everything they had to say.

Then, even though we felt we could trust the school, we still had an independent observer follow Bella to all her classes to see what her day was like. That helped to confirm that what we had heard in the meetings was true.

But the most important step in gathering the facts was talking to Bella. We took all that we had learned from the school and from the independent observer and discussed it with Bella. We know our daughter better than anyone. When we went through the list of possible concerns raised by the teachers, we could tell from Bella which were really problems and which were not. In most cases, she just told us her thoughts. Sometimes we had to discern what was a concern based on her reaction. If she exploded in anger or tears, it was a problem. If she gave us the ‘I can’t believe I’m related to you’ face, it was not. Anyone with a teenager knows what I mean.

Establish ‘Relationships’ At the School

As I wrote in an earlier post, Bella’s problems at school boiled down to her no longer being comfortable advocating for herself. In large part this was because she did not have a relationship with any of her teachers. She was comfortable with her speech therapist and with the guidance counselor. In fact, they were the ones she turned to during the crisis. But they were not teachers. They could advise her on what to say to the teachers and they could talk to the teachers, but they were not in a position to help Bella establish a relationship with the teachers. So unless they spoke for her, their relationship didn’t help her.

The school had a classroom for kids having a difficult time handling school. They suggested it become Bella’s homeroom. We were skeptical. We were worried about her being in a room full of kids with behavior issues. That’s not Bella. But since this was just to be her homeroom, we figured it was worth a shot. She was to go there for 15 minutes at the beginning of the day. She was still to attend her other classes with her other teachers.

It was intended to be a new home base for her which offered three key things:

1) It is a small number of kids so the teacher can establish a relationship with all of them.

2) The teacher is there specifically to help them get through the day. He speaks to the other teachers and knows what homework is coming, what tests might be coming, and any other stressful things on the horizon. So Bella no longer gets surprised by what is coming up in her classes.

3) She can go there at any point during the day and check in.

And it has been great. Yes, the class is a collection of characters. There are bullies and kids who have been bullied. There are kids who are overly shy and kids that struggle to keep quiet. But Bella has a strong sense of self and a stronger sense of humor, so she really enjoys her new classmates and talks about their, um, antics, positively, though usually with a bemused look on her face.

Having one teacher to go to when she gets stressed out has been a godsend. He knows the things that frighten her and he knows when she might struggle. He warns her when such things are coming far in advance and helps her prepare for them. And when she gets stuck, he assists her. That class has been a big, big help.

Set Small Goals and Big Goals

Yesterday my wife and my daughter were arguing before school. Julia was ready to go to work and wanted to drop Bella off at school. Bella was complaining, in the classic teenage tone, that her mother ALWAYS drops her off so EARLY and she has to SIT AROUND the hall with her friends WAITING for school to start (for effect, whine and stomp your feet for every italicized word).

I couldn’t have been happier to hear it.

Back in November when Bella was struggling the most, I had to drive her to school every day and walk with her to the guidance counselor’s office. She would cry and it would take 15 minutes for the guidance counselor and I to calm her down to the point that I could leave. Every morning we walked right past a group of her friends who were sitting in the lobby chatting while waiting for school to start, looking generally bored and grumpy. That’s what I wanted for Bella. I wanted her to be like the other kids. I wanted her to stomp her way into school and slump down with the other kids to complain about teachers and parents and look bored and grumpy. In short, I wanted her to be a normal teenager.

So I told her that. I said that should be our goal: for her to come in to school by herself and sit with friends and gossip. I also told her that I wasn’t going to just dump her at the front door tomorrow and expect her to tough it out. I told her we would take small steps to get there, but that we were going to get there.

We set small goals to achieve this big one. First, I walked her to the guidance counselor’s office, said good-bye, turned and left. Then I started dropping her at the front door and she went to the office by herself. Then the counselor cut short his time with her a couple of days a week and sent her out in the hall with her friends for a few minutes. Sometimes she didn’t go to the counselor’s office at all. And finally, she just sat down in the lobby with her friends and wondered at the stupidity of all adults.

In short, she was just like all the other kids. But if we had just dumped her at the door that first day and said ‘figure it out’ she probably would have turned to jelly. Sometimes difficult issues are just too difficult to jump in to all at once. The kids can’t see past the panic to a time when things will be better. That’s a pretty good description of life with Usher in general, really. There is always some terrifying prospect that seems insurmountable but which, in reality, can be overcome. You just need to take baby steps to reach the goal.

Begin Advocating From a Safe Distance

At the low point in all of this, Bella was scared of her teachers. She was certain they didn’t understand her needs and that they were mad at her for asking for the few things she had requested of them. She needed to take small, safe steps in advocating for herself. Her guidance counselor had a good idea. He suggested she write them a letter about her concerns. She could get her point across to them but she didn’t have to face them.

Below is her letter to her teachers explaining why she needed breaks in class and why she wanted to leave class a couple of minutes early at the end of the day. In Bella’s school, the classes rotate so each teacher gets her at the end of the day at some point during the week. It was this letter, actually, that spurned this whole series of posts. It captures her frustration, explains her needs, and is a good example of how to advocate. You’ll have to excuse the grammar mistakes. She dictated it to her guidance counselor who types with 10 thumbs.

At the end of the day I feel like I should leave at 2:00 [school officially ends at 2:05] to get ahead of the crowds. When I stay beyond 2:00 it puts more stress on me. If I have to stay in class, could you please let me know during lunch that I will miss the 2:00 time? At the end of the day I’m tired because I have to do extra work because of my hearing and my eyesight. Also at the end of the day I have to put the FM in [another teacher’s] room. I am really tired and can’t focus that well but I try and do the best I can. At the end of the day my work feels a little blurry, it’s just harder, but I can still do it. Sometimes when it reaches 2:00 and you’re still talking, it’s hard for me to interrupt you, but I need to plug in my FM and I don’t know if what you are saying is important. At the end of the day, I might need a little break, to get a drink of water, so I can be refreshed. This helps with my tiredness and sometimes this little break helps my hearing and eyesight, so please don’t feel like I’m trying to get out of your class. It just makes me feel better so I can make it until the end of the day.

Of course, you know the story by now. Bella’s teachers were never mad at her. They just didn’t understand how fragile she was. They didn’t blow up at the letter. They understood and told her they would try to accommodate her as best they could, even though they might not always be able to meet her needs fully. The letter allowed Bella to advocate from a safe distance and once she was convinced the coast was clear, she was able to continue the dialog in person.

A safe distance will be different for different kids and different situations. Sometimes it’s just being alone with the teacher and not speaking to them in front of the class. Sometimes it’s having a parent or another adult or even a friend present when the child advocates for him or herself. Maybe they need a parent to have the initial conversation and he or she will be able to carry it from there. Advocating can feel like you are exposing yourself to ridicule. Kids often need to stand a good distance away and await a signal that it’s safe to come closer before they are comfortable.

Tough Love

In the end, even when the path is clear and all the padding is in place, kids like Bella sometimes need a push. It can come from teachers and guidance counselors. It can come from friends. But ultimately, with Bella, it needed to come from her parents. She was so fragile for a while that when her teachers pushed her, she thought it meant they were disappointed in her. Or that they didn’t like her. Or that she was a burden to them. The more they pushed, the more she closed up.

That wasn’t the case with Julia and me. We had been talking and talking and talking with her and meeting and meeting and meeting with the school. I was going in to work late every day. She knew we cared about her and were fully informed of her situation. So when we dropped the hammer, she knew we were fully considering what was best for her. It didn’t make her like it any better, but at least she understood.

We really only had to do the tough love thing in a major way once. Oh, we were firm with her a bunch of times, but there was really only once when we really laid down the law. We had just finished one of our emergency meetings with the school and had worked out a plan that we were fairly confident would resolve Bella’s issues. In the meeting we learned that Bella had been to the nurse’s office fifty times that year already. Fifty times! Needless to say, she wasn’t really sick.

So we walked out of this meeting and one of the administrators told us that Bella, not surprisingly, was in the nurse’s office. Yeah. That was bad timing on her part. We walked down the hall and the nurse told us that Bella was not feeling well and probably needed to go home for the day. Oh really, we said? May we see her?

We walked in and there was Bella curled up forlornly on a couch in the office.

“How are you feeling, Bella?” Julia asked as she stroked her hair.

“Not good.”

“You know we were just in a meeting with your teachers,” I said gently.


“Yeah. They told us you’ve been to the nurse’s office fifty times this year,” I said, “I don’t remember you being sick fifty times this year. Whenever I get home from work, you’re galloping around the house looking healthy as a horse.”

Uh-oh. Bella’s eyes widened. The cat was out of the bag.

“So how about you get up,” I continued, “Mommy and I will walk you back to class. You’re not sick and I don’t want you coming down here again.”

We stopped at the nurse’s desk on the way out.

“Bella is feeling better,” I told the nurse, “and she would like to go back to class. She also promises not to come back here again unless she has a fever, is throwing up, or has a bone protruding from her skin.”

We then walked her back to her class. She hasn’t been back to the nurse’s office since.


I’m happy to say that Bella is doing quite well in school now. She had a bit of a setback in January due to a bout with migraines (they run in my wife’s family). Those caused her to miss more school and getting finally acclimated took a little longer than we hoped. She’s doing great now, though, and came home with all B’s on her last report card. She took the MCAS (a standardized test here in Massachusetts) and completed it with plenty of time to spare and without complaint. Socially she spends her mornings sitting in the lobby with her friends and speaks frequently about things she does with them during the day. She's even made some good friends in that homeroom full of characters.  She finally seems like a typical 13 year old in school.

This is all thanks to our flawless parenting skills.


The wonder of parenting is that we parents are entrusted to address any and every issue with our children with absolutely no experience or knowledge on how to do so. Throwing in Usher, a disorder no one really knows much about, just makes it worse. I find myself flat on my face more often than not. The trick is to keep picking yourself up. Hopefully these posts can help you avoid a stumble or two.

Either way, if you have a teenager, good luck. You’ll need it.

Wednesday, March 14, 2012

Coalition for Usher Syndrome Research now on Facebook!

Some of you have already noticed the little Facebook widget on the right-hand side of this page, but for those of you who haven’t, please join us in the colossal time vacuum that is social media! We’re planning to use this page to link to blog posts and other articles of interest to our community, but we’d love to host any and all community interaction there as well. Anyone is welcome to post notifications, comments, pictures, or whatever you can think of to this page. Thanks for ‘liking’ us, and for spreading the word!

Friday, March 9, 2012

The Bella Chronicles, Part V: Reasons to Advocate

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 I, Part II, Part III, Part 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.