Meet Ava Bullis as She Transitions to a New School
Ava, who is in fifth grade and loves reading, playing sports, and spending time with friends, has combined vision and hearing loss due to Usher syndrome type 1. In the summer of 2016, her family moved from Old Bridge, New Jersey to Manchester, about an hour away. Their new house was larger and more accessible, but Ava's parents were nervous about the transition to a new school.
Carly, Ava's mom, is the Family Engagement Coordinator for the New Jersey Consortium on Deafblindness. She contacted the new district, met with administrators, and provided training to the school staff on Usher syndrome. Everyone at Manchester Township Elementary School was excited to have Ava as a student and worked hard to make sure her needs were met. Watch the videos to learn about everything that was done to make the transition successful—you'll hear from Ava's family, administrators and teachers, peers, and Ava herself. Check out the box below each video for additional resources (including several from Ava's family).
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AVA: Hi, my name is Ava Bullis. I have Usher syndrome. That means I was born profoundly deaf and I’m slowly losing my vision over time. At night I use a cane to help me see, and during the day my vision is limited. Just because I’m losing my vision doesn’t mean I’m losing my ability!
JAMES BULLIS (Ava’s Dad): She has a heart of gold; she takes care of everybody; she puts others before herself.
EMILY (Ava’s Friend): She’s smart, popular, and she has both a tomboy and a girly-girl side.
JACOB (Ava’s Friend): We were like, we were the meal. And she was the little spice that made that meal awesome and delicious.
MASON (Ava’s Brother): She’s very special, and I help her a lot in the nighttime when she can’t see.
MILEY (Ava’s Sister): She has cochlear implants. She’s got devices on her ears. She can’t hear when she takes her devices off, but she can hear if she puts her devices on.
CARLY FREDERICKS (Ava’s Mom): Essentially she’s living two different lives. I mean, by day she does receive benefit from her cochlear implants, so she has access to spoken language. However, some people don’t understand that that doesn’t give her full hearing; it’s not her natural hearing. Without those devices on, she is profoundly deaf. So there are some other ways of accessing communication that she needs. Sometimes she does need that prompting with sign language, or she needs to read your lips, or she needs the access of an FM system.
With her compromised vision, it changes day to day. She could have a really, really good day and then she could have a really, really bad day. And it’s hard, because people don’t see the Ava at night. Once the sun sets, she turns into a different person. She’s tired from hearing through her devices all day, so she takes her devices off, so she has no access to hearing at that point. And once the sun goes down, her vision is completely gone, so she really has to adapt to her environment.
Even though it’s our day to day, we don’t live our lives feeling this is Ava with Usher syndrome and we have a deaf-blind child. It’s just Ava; it’s who she is; we’ve embraced it; I couldn’t imagine her any other way.
A Family Decision
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PAUL FREDERICKS (Ava’s Stepdad): Since day one, I came into our family, Ava’s life, when she was about two years old, and she was always our main priority. The respect for Ava and the love for her kind of showed through everybody.
CARLY FREDERICKS (Ava’s Mom): Co-parenting is difficult enough in any situation; however, having a child that has special needs, we really had to learn how to make sure that we were addressing those issues, but also doing it in a way where everyone felt involved.
AMBER HICKSON (Ava’s Stepmom): It’s always been open communication between the Fredericks and the Bullises because Ava is so important to all of us. We all have a really great relationship, and I tell everyone it’s a really unique situation. Carly will call me and talk to me about what we want to do for plans for Ava, and it’s nice because I can go to her and ask her really anything about what I should do for Ava.
CARLY: It’s been a true team effort, and I think this is what shaped Ava’s overall confidence. Knowing that she can transition between both homes, knowing that everyone gets along, everyone knows what’s going along so she can’t get over on either one of us. I feel that she definitely feels supported.
Initially when Paul approached me about the idea of moving out of town, I was really nervous.
AMBER: I think that we were really nervous about how she would adapt to a new school.
JAMES BULLIS (Ava’s Dad): The school system, the teachers, the services that she might receive. And adapting with new children, especially being in fifth grade, children obviously sometimes can be harsh. Those were some of the nerves that I had.
CARLY: So when he had proposed the idea, I said our quality of life was most important. We can’t provide the perfect world for Ava to live in or the perfect academic space, but our home can at least be perfect. So that was much more important to both of us.
PAUL: The reason we chose Manchester was because we could afford a much larger house with a bigger floor plan, which made things easier for Ava to navigate through the house and also for our other kids to be able to get around much easier.
CARLY: We actually took the kids with us—we showed them the house—and it was truly a family decision. We asked them what they felt about it; we wanted them to feel a part of that decision as well. It was a hard decision, but I think now in the end, we’re really happy with it.
MASON (Ava’s Brother): It’s really good, and we got a nice house, and we got some friends on our street. We ride our scooters together.
MILEY (Ava’s Sister): I have lots of friends, and my school is so nice. I feel very happy—very, very happy.
PAUL: The schools have been phenomenal and the kids are comfortable where they are.
CARLY: And the community really has been so accepting, I mean all of the kids. Ava…one thing that we’ve always taught her is that she needs to be comfortable in her own skin, and if she’s comfortable with herself, it doesn’t matter what’s going on around her, people will be comfortable with her. She went in with confidence, and we were so proud of her—it’s not an easy thing to do. And it’s been great.
To learn more...
- Behind a Closed Door
A poem written and illustrated by Ava.
- Ten-Year-Old With Usher Syndrome Connects With Friends and Family Through iCanConnect
An article about Ava.
AVA: Well, when my family told me that I was going to be moving, I remember the day that my grandparents had us down the shore, and my parents called us and said that, “Guys, I think we found the house.” And then my grandparents drove us up here and we looked at the house. And then I remember we were in the backyard swinging on the swing set, and my brother and sister and me said “yes” at the same time, and that was our final decision. At first, yes, I was a little nervous about moving because I was leaving so many friends behind, and sometimes I get a little shy around people when I’m trying to make friends, you know?
The first day was awesome. I mean, I sat in the bus—everyone’s like, “Hey, you’re the new girl.” And then they told me their names, and we just suddenly clicked. We just clicked. I did tell my class about what I have. Well actually my teacher started it; she’s really nice. She said that, “Class, Ava needs a cane to go down the stairs because she can’t really see.” So I remember that first time we lined up, I grabbed my cane and I just opened it up, and everyone’s like…they didn’t stare at all; it was just amazing. And everyone’s like, “Can I try, can I try,” and they would just start rolling around; it was really fun.
LINDA WALDRON (Principal, Manchester Township Elementary School): She became a leader, without a doubt, in a very short period of time. I think she was a leader before she came.
JILL MOORE (Vice Principal, Manchester Township Elementary School): And in speaking about leadership or joining the community, I know that Ava’s already joined a Girl Scout troop, and she’s already become very active with the other students. So in her short time here, she really seems to have assimilated not just into our MTES community but also the Manchester community as a whole.
AVA: At my new school there’s a web show called Dragon News, and there’s opening announcers, kind of like a TV show. The teacher will turn on the TV every morning and you watch it, kind of like on Saved by the Bell. And I got to be Valued Representative, so I’m kind of one of the reporters. I also joined Girl Scouts for the first time ever, and it’s actually really, really fun. We meet in the art room after school and we have two teachers to help us. We do all sorts of crafts; we sell cookies; it’s really, really fun.
CARLY FREDERICKS (Ava’s Mom): I don’t want her to feel that she has to be perfect. Just because we have all these supports in place doesn’t mean that she doesn’t get to be a child either. There’s going to be times she has a lot of responsibilities, more than the typical 11-year-old, and I don’t want her to feel overwhelmed by that. So I do let her fail time to time; however, I do make sure that we have a conversation addressing those concerns that I have in that moment. But also letting her know that it’s okay to be a kid.
AVA: You kind of have a little more responsibilities added to your life, like you have to worry about making sure you have your devices, making sure you have your cane, making sure you have everything you need to be prepared and safe for the day. I remember one time I lost my boots; I’m like, “Oh my gosh, where am I going to find them, this is the only way I can hear my teacher throughout the lessons during the day.” And luckily my brother was there to help me.
MASON (Ava’s Brother): Ava calls me Magnificent Mason because one time she lost one of her boot devices. It’s not like the real boot. It’s a little thing that goes in her devices, and one time she lost them. And I found one and then I found the other one. And I saved her Christmas.
AVA: It’s…it’s not all that bad, but it’s just that you have to be prepared. I always use my cane whenever I just go from class to class. It feels good because it helps prepare me for middle school where I’m really going to need to use it a lot.
Well, if families are nervous moving, I’d give them this one piece of advice: Don’t be afraid—just do it. It’s a wonderful thing; it’s a wonderful experience; it’s like a whole different world. It’s just a lot of work, but it’s well worth it.
Making It Work: Supportive Administrators
To learn more...
- Carly's Presentation
Carly used this when training the MTES staff on Usher syndrome.
- New to Deafblindness? Five Tips for Administrators
From the Texas School for the Blind and Visually Impaired.
DAVID TRETHAWAY (Superintendent of Schools, Manchester Township School District): We’ve had students before who’ve had some limitations—some who did not hear very well, some sight impaired. But I think Ava’s the first one that we’ve had in a long time that has both of those things.
OLIVER LOKERSON (Director of Special Services, Manchester Township School District): The mother was able to give a great deal of in-depth information about the child and about the disability in general. Many times parents become the experts, even more so than educators at times when you have a specific disability. But you could see immediately, number one, how proud she was of her daughter and that she was going to advocate for her to make sure that she had the most appropriate program.
CARLY FREDERICKS (Ava’s Mom): So I really kind of sat down and one of the steps that I took was to develop, I guess you would say it’s like a resume for Ava. I broke down all the supports that she was receiving and provided them the contact information of her direct service providers.
OLIVER: The mom put us in contact with everybody and told us, even gave us individual names that we should contact, which really was a good thing because sometimes even the supervisors aren’t real sure of the specifics regarding all of the cases because they have so many cases. But because the mom gave us specific names, and whether it be a school or whether it be supportive services or whatever, we could contact them directly, and they were really helpful in helping us understand what needed to be done to make sure she received the appropriate program.
DAVID: Her parents have been super. They’ve done a great job of kind of guiding us in some of the areas that we weren’t too sure of. They’ve been very supportive, very positive, and it’s really been a tremendous experience.
LINDA WALDRON (Principal, Manchester Township Elementary School): Her mom came in right away, explained that she wanted to do professional development for our staff; we welcomed that and encouraged that. So on our first day, our opening day, I invited all of our teachers, all of our lunch aids, and all of our paraprofessionals. Now normally they’re not all here for that; they wanted to be here. So everybody was part of that training. And I have to tell you, it ran late…not one person complained. Everybody was so mesmerized by what she had to say and so excited to get to meet her.
JILL MOORE (Vice Principal, Manchester Township Elementary School): It’s funny because when you see Ava, you wouldn’t know necessarily that there was anything going on. So it was important to us that all our staff, across the board, know the challenges that she had and how to best help her.
LINDA: We also then had her mobility specialist come in and do another in-service training during what we call PD meetings, early in the morning, like at 8:00. And so she came in and she did a special training on the cane and how to walk up and down the stairs, how everybody had to stay one side going up and the other side going down. And then we spread the message to the rest of the students in the school to make sure that everybody was following that.
DAVID: We’ve made the accommodation of having yellow reflective strips on the steps for Ava. And we’ve had a number of students come up to us and say, “That’s a great idea; this is great for us.” So things like that that happen—maybe it’s good for Ava but it’s maybe good for the entire school district. We have a diverse population just like most schools. Whatever that diversity is, I think it’s important for students to learn at an early age to be able to accept people who have different qualities, and I think to a degree, we’re all kind of unique. So to look through whatever the disability is or whatever the characteristic. We go through a lot of peer mediation, we go through a lot of HIB prevention (bullying and so forth) to be able to be aware of some of the differences that the students have. And I think the parents have been very supportive in that regard to teach the children at an early age that we have a diverse population and everybody has a right to express their uniqueness and be able to be individuals.
LINDA: Here at MTES we’re a family. So Ava fit in right away. She’s an amazing young lady. What I really love about her is that she doesn’t want to be treated any differently; she just wants to be one of the kids, which is a great thing.
JILL: And I have to say, the students really don’t treat her any differently.
OLIVER: The one unusual thing is that she happens to be a fifth grader, which means she’s going to be transitioning over to our middle school. So by the time we really get to know her, she’ll be leaving us. Now once she gets into the middle school, that’s a three-year experience.
LINDA: She already made a transition this year; we want to make it as seamless as we possibly can for next year.
JILL: One thing we’ve done is that her future case manager at the middle school has been attending all her IEP meetings at the elementary level, so that’s one way we’re including them in the transition. Ava and Mrs. Fredericks will have the opportunity to do a sensitivity training with those other fifth grade classes…
LINDA: Which will be great.
JILL: Yeah, so by the time they come in with her in sixth grade, they will already have met her, they will already know about her. And that should take care of all those questions for Ava right off the bat, so those will be a few things. And then the other will just be to allow her access to the middle school over the summer, and just as we brought the mobility expert in here to look around, they’ll have those same opportunities. But just as excited as our teachers were here, we expect the middle school teachers to be equally as excited to include her as part of our middle school family.
One of the things that Mrs. Fredericks did early on that sort of helped all this was she…one of the things she put out to us right away was, I don’t expect you to know everything, that this is a learning process and there’s no way you could know everything, and I don’t expect everything in place today—immediately, but I just hope that you’re open. And I think that that was really a nice way to put it because it eased our mind a little bit that we weren’t afraid—what were we doing wrong. She took that fear right off the table.
LINDA: This experience has been wonderful. We’ve both learned so much; our entire school has learned so much.
JILL: Parents are very much their child’s strongest and first advocates, so it really was helpful to have the Fredericks come in and advocate for their child. But that would be what we would do for anybody and what we would hope that any parent would do when they brought a child in. So listening really is so important because nobody knows that child better than their parents do. So if you can take that information in as a school district and use it to help you to better provide services for the child, that’s only beneficial.
Making It Work: Teachers Get Ready
To learn more...
- When You Have a Visually Impaired Student in Your Classroom—Basic Tips
From the FamilyConnect website, American Foundation for the Blind.
- The Cochlear Implant School Toolkit
Information for teachers, parents, and children on welcoming a child with a CI into a mainstream classroom.
AVA: If I had to give advice to a teacher who was having a student like me in their classroom, I’d just say that always—don’t bug them, but always so often, ask them what they need; see if they’re having difficulties in the classroom. Always keep a lookout, but just try not to be, you know, a pest. [laughs]
NICOLE RAIA (Ava’s Classroom Teacher): As the classroom teacher, my role in supporting Ava is the same as the rest of the children in my classroom, and that is to make sure that I’m addressing her needs individually as well as part of the whole group. I found out in the middle of the summer that she was going to be a part of our classroom. The district pretty much made it very easy, paved the way, set up conferences with each of her other support teachers that come from outside. They made it very easy for us to meet and work together.
KRISTEN CHERRY (Basic Skills Teacher in Ava’s Classroom): We touched base with Ava and her family; we found out what her needs were; we educated ourselves about Ava and what her condition was.
NICOLE: Mrs. Fredericks contacted us and asked to present to us on Ava’s syndrome that she has.
KRISTEN: We had an in-service before the school year began and she gave us the A’s of Ava, and we were so prepared for her coming in.
CARLY FREDERICKS (Ava’s Mom): If I had to make a recommendation to families about training or how to train the staff working with their children in their areas, I really think it’s important for them to have a sense of network and community. I would encourage them to reach out to their deaf-blind projects in their state to make that connection with their family specialist. I think their family specialist would be a wonderful resource to them; if they don’t have that skill set to physically provide that training, that person does. And it’s different when it comes from a humbled place of experience. And I think that professionals really value that; it makes it more real.
ALISON SIMONE (School Social Worker, Ava’s Case Manager): Ava is the first student that I have serviced in the district with a classification of deaf-blindness. I know before I came here that there was another student who was classified, but that was over ten years ago. She has an FM system that hooks right into her cochlear implants besides the regular FM system that is available throughout the classroom. She also has an iPad that is available to her that has the books—different contrasts on how they are, the wording is different—it’s bigger. Ava’s prior sending school gave us an IEP that listed all of her modifications and accommodations that she needed in the classroom as well as the services she was provided before she came here from the Commission and from the teacher of the deaf. Ava’s mom also gave us a very detailed outline about all the things that Ava would need to be successful in school.
MICHELE MURRAY (Teacher of the Deaf): I work with Ava twice a week for an hour each session. I bring the hearing aspect to the team. I help the team in understanding Ava’s hearing loss, the use of her cochlear implants, and using the FM appropriately. I also help them in reducing classroom acoustics so it’s better for Ava. Usually when a child has a hearing loss, I let the teachers know that as long as they’re using the FM, the child can be placed anywhere in the classroom because everything that is being said goes right to the student’s receivers. However, with Ava, because of her vision and because of her peripheral issues, she needs to be seated where she’s not going to be tripping over objects or other students’ chairs.
NICOLE: I met Mrs. Fredericks and Ava at the beginning of the year, before the kids came into the classroom, in order to assess what we could do to make her feel safest inside the classroom, in the hallways, in the stairwells. So when we met, I wanted to discuss with her, how do you want to introduce yourself to the class? How are we going to let them know a little bit about her unique needs in the classroom? And we devised a plan that sort of went awry. She was going to…first of all, she wanted to wear her hair down so that her cochlear implants were somewhat hidden. And she wanted to introduce herself when the rest of the children introduced themselves on the first day of class, and then she was going to talk a little bit about her needs. It turned out that she didn’t do that, and I don’t blame her, because she wants people to know Ava, not Ava with Usher syndrome. So she kept it on the down low, and when I talked about safety for everyone in the classroom and in the hallways, we sort of alluded to the fact that Ava especially needed the classroom to be clear on the floor, that the desk chairs were always to be pushed in. We also discussed behavior in the hallway, staying on the right-hand side, which I joked around saying that when they’re older, it’ll come in handy for driving. And that seemed to work fine for the beginning of the year. The class was extremely accepting of everyone, and they really didn’t bat an eye when they noticed some things were a little bit different for Ava. It’s just part of our community here at MTES—we’re very close-knit and very accepting of all different children.
KRISTEN: Ava has a buddy in our classroom that will be helpful in reminding her to take her cane if we need to leave the classroom for any reason and just walks with her as a walking buddy in the event that we’re out and about in the hallway or if there’s a drill. So we have some team members in the classroom also looking out for her in addition.
KRISTEN: Mrs. Fredericks and her family have just been so instrumental in this entire process. We contact her regularly; she comes in and visits us. We work with her other team members from outside, so there’s always regular contact with her family.
CARLY: Sometimes I think we live in this technology world where everything is communicated via email or text—rarely you’re getting phone calls. I think it’s always important to every once in a while reach out by phone and make that personal connection with your child’s classroom teacher. Thank them for all the hard work that they’re doing.
KRISTEN: We are so lucky to have someone who’s so educated on this teaching us and teaching the others how to prepare and accommodate for a child with Ava’s condition. It’s just been a wonderful experience here.
Old Friends, New Friends
To learn more...
- Telling Classmates About Your Child’s Disability May Foster Acceptance
An information sheet from the PACER Center.
- Helping Your Child Who Is Blind or Visually Impaired Learn How to Make Friends
From the FamilyConnect website, American Foundation for the Blind.
EMILY (Friend from Ava’s Former School): I just have one question. Why did you move? Why? Why did you put us through the torture?
AVA: You’ve seen my house, right? You’ve seen my tiny house? You’ve seen my tiny house? See how tiny the thing is? Wait till you see my new house. It’s ginormo.
JACOB (Friend from Ava’s Former School): I went to your sister’s birthday, and it was…her house is pretty cool.
EMILY: Class without Ava is extremely boring. When she was around, we were always having so much fun, but now she’s not here, it’s like [pretends to sleep]. And my teacher’s really funny.
JACOB: She was our true friend. When we always found out classes, I was like, please let it be Ava in my class, please let it be Ava in my class. It’s so different with her not in my classes. I don’t like that it’s different; I want it the same.
AVA: They’re like always there for me; they’re kind; they’re supportive. I do make friends, but they’re not like them [pointing at Emily and Jacob]. They’re true friends, I mean, true friends.
JACOB: Ava has taught me…like when I need help with math, she teaches me; she helps me out. She teaches me not to give up, to do anything that you put your mind into. Like swimming, I was not a swimmer until last year, and she encouraged me all the way. When I’m over at her house and we’re playing outside and it’s getting dark, I, like…when we have to go inside, and I guide her inside so that she doesn’t stumble over anything. We always helped her when she needed help, and she always helped us when we needed help. So it was like a trade, we traded—we helped her; she helped us.
EMILY: Last year we were in the same CCD class, and sometimes when it got dark, I helped her out of the school. She does use her cane, but at the same time, I like guide her, and if I see one of her parents, I lead her to them. And usually it’s near my mom, so it’s kind of easy.
AVA: I opened up to them because I knew they were friendly because they always had a smile on their face. They always followed directions; they always listened to the teacher; they were very responsible. And I knew…I felt like—a gut feeling that I could trust them. So I’m going to try to find a few kids at my new school who I could trust.
So every single year, I do a presentation about Usher syndrome. And it explains my difficulties and my possibilities.
LINDA WALDRON (Principal, Manchester Township Elementary School): She provided the sensitivity training to all the fifth grade students with her mom. And she did a fantastic job with that. And I think they look to her now as that and being the expert in this.
AVA: We do like a hands-on activity, like we have this “feel the box,” and we put masks with wax paper that’s covering the eye holes, and they have to try to guess the items using their other four senses.
SHELBY (Ava’s Classmate): It was pretty fun, but then when you found something and you had no idea, it was a little weird. One of them I think was like a cotton ball, and somebody next to me, I forget who it was, was like, “What is that?” I tried to get it, and I’m like, “It’s a cotton ball, what do you think?” And he’s like, “I don’t know…I don’t know what it was.” [laughs] The one I had trouble with was the fake pacifier; that one was weird. I couldn’t figure that one out.
AVA: Everyone’s been really nice; they’ve all been really receptive. The principal is really nice, all the teachers are really nice, and all the kids are really nice, too.
NICOLE RAIA (Ava’s Classroom Teacher): Ava is very open and has a lot of confidence in herself as a person, and so when kids of course naturally inquisitive started asking her questions about her cochlear implants and about the fact that she uses a cane to go up and down the steps, she answered them.
AVA: I don’t like sharing about Usher syndrome, but it’s a really important thing; you should always share so people kind of have a clue. And so like if they’re walking down the library or they’re walking into a restaurant and they see someone with a cane or cochlear implants and say like, “Hi, I have a friend with cochlear implants,” or “Hi, my brother has cochlear implants,” or something like that. You can connect with other people.
If someone asked me if they can say I can take my Usher syndrome away, I would not want that because it’s a gift I got from God. It’s a part of who I am. Because I wouldn’t have all these amazing opportunities; I wouldn’t have these amazing friends like Emily and Jacob; I wouldn’t be who I am.