The following seven voices have each experienced the struggles and triumphs resulting from human handicaps. Some have undergone these experiences firsthand, and others have the unique perspective of watching objectively from a close distance while a loved one encounters both the successes, and struggles, of living with a disability. A common theme in these interviews is the profound sense of peace that comes from the acceptance of life’s persisting obstacles; and an unfailing resolve never to give up on a seemingly misfitted love of music.
Cast of Characters:
|Benton||Child with Hearing Loss||Attributes improved school performance to the diagnosis|
|Jen||Mother (birth mother)||Was told by Benton’s third grade teacher that he had ADHD|
|Sarah||Mother (wife of Jen)||Came into Ben’s life later|
|Pam||Grandmother||Shares a love of music|
|Paul||Grandfather||Enjoys fishing with Ben|
|Liz||School Guidance Counselor||Advocates for Ben to have accommodations in the classroom|
|Tuck||Owner of Tuck’s Rock Dojo||Was born with dyslexia and found a unique way to use it to his advantage.|
In sixth grade at Richmond Middle School, Benton was set free from the spirit of academic inadequacy that he had been harboring since attending a public school in northwest Colorado. Held back in third grade and bullied by his peers for having a family unit different from their own, Benton struggled with the pervasive feeling that he was missing what it takes to be successful in the world. A teacher in Colorado had recommended that Benton begin taking medication for what she falsely diagnosed as ADHD, but this only worsened Benton’s symptoms. He responded to the medication by becoming sluggish “like a zombie,” as his mother Jen lovingly puts it. A school hearing test uncovered that Benton was actually missing an octave of pitch that prevented his ability to hear parts of words. This caused a tremendous handicap when trying to pay attention during school.
When Jen met Sarah, and the two moved to Hanover, New Hampshire to obtain their masters from Dartmouth, things began to change positively for Benton. Richmond Middle school provided a welcoming environment for Benton; and for the first time in his life, Benton felt accepted by his peers. Richmond Middle School addresses the hearing loss by providing an Individualized Education Plan (IEP) for Benton that includes an FM system to magnify sounds, and preferential seating in the classroom. As a result of individualized attention, and a consistently diligent effort on the part of the student, Benton has brought his grades up. It was also here that Benton began taking music lessons at Tuck’s Rock Dojo, which has helped him to hone a love of music that was instilled in him by his grandmother. He currently has his eyes set on a prestigious boarding school after successfully completing eighth grade next year.
Hear their Voices for yourself…
How has the hearing loss impacted the school setting?
Benton: Nobody really notices at my school. The only people that really know are my parents, and some relatives, and the teachers. I know that people need actual hearing aids that are in my school, and are more disabled than most people. Personally, I never really noticed until a while ago that they had hearing loss… probably at the end of last year. It seems to have helped them, because teachers actually help them more than the other kids who aren’t academically handicapped. I used to see only the negative about it, but now I can see that it gets me extra help. I have to focus more than most kids, but that is a good thing. I was also relieved to realize that I wasn’t more stupid than the other kids in my class. I just couldn’t hear everything that they could, and that made it harder for me to take notes and study for the tests.
Jen: Liz is the person. She works in the office there as a guidance counselor, I think, and she sets everything up. We met with her, and several other people including the nurse. They are really amazing. We went to an open parent night, and we got to see some of the teachers. Richmond Middle School in particular has been really great. Pretty much anything that we put on the table for them, they are working with. They have FM system for him right now. They also place him strategically in the classroom so that he is sitting close to the teacher. It helps to break up the background noise so that Ben does not have to be distracted by chatty students. It is really difficult for him to focus in on what the teacher is saying if there is a lot of other noise going on at the same time. So they have made that accommodation. We are looking into note taking at this point, just in case there are things that are missed. That is a more difficult one to get.
Liz: I am a 6th, 7th, and 8th grade school counselor, and there are about 400 students here. I am still getting to know Benton. His moms did a really nice job sharing the information that they had last year, which I shared with our school nurse, our speech pathologist, and our supervise study coordinator. I shared it with his teachers as well. Female voices are very difficult for him to hear because of the very specific loss. The pitch doesn’t register. His parents obviously care very much about his schoolwork. As a student who was new last year, I think our focus was to get him socially integrated, used to a new school, new teachers and a new community. I think that he has mostly done that pretty well, and this year we are focusing stronger on the academics. One of the things that is different this year too, is that he is driven to go to a boarding school. We all want the same thing for him, which is for Benton to be successful.
It can be challenging with kids like Benton, because we aren’t always sure what is at the root of why the child struggles in school. If hearing loss goes untreated, then the child suffers—even though it isn’t his fault. His teacher in Colorado had assumed that he had ADHD based on his symptoms, and the way that he acted in the classroom. Unfortunately, ADHD and hearing loss are commonly confused; because the student didn’t hear what the teacher said, and this comes across as an inability to pay attention to hear what the teacher said.
Sarah: Before I met Benton, his third grade elementary teacher put him on Ritalin, because she thought that he had ADHD. She firmly requested that he be on medication if he was going to be in her classroom, and that was before we knew that he had a hearing problem. We did some research after discovering that he had hearing loss, and realized that a lot of children are misdiagnosed with ADD and ADHD when they actually have a hearing issue… They are a little bit distracted in the classroom due to the inability to hear instruction, or understand the material, and so they get off topic more easily than the other kids.
Jen: In retrospect, he had been learning his whole life how to deal with these missing sounds and pieces of words. He had been trying to plug that in, and figure out what was going on without having that full knowledge or breadth that other students had to engage the teacher. So I can see how that formed problems with him. It has become so much better with the accurate diagnosis. I am seeing his grades improve, but he also just seems more motivated to do his schoolwork. Now that he knows that he is capable, it has really brought up his self-esteem. I can see that he puts more effort into his work now, because he knows that he is able to succeed at it.
Liz: There are certain gateways that you have to meet in order to be eligible for a special education IEP, or a 504 plan. You have to have a diagnosis. It also has to have some effect on the six functions of life; and for school, the function is usually learning, right?! So, that is where you could be a really bright kid who is doing well, but you might have a peanut allergy. We step in and provide the individualized support that the child needs so that we can level the playing field, if that makes sense. With special ed., it’s a kid who has an aptitude that is strong, but his achievement is low. They have a disability of some sort, and then there is an adverse effect on their education. So in other words, they are not scoring well on standardized tests, or they are not performing well in school. Sometimes it can be more simple clues that tell us what is going on, like their writing really stinks. It is our job to piece it all together, and to figure out how we can best help that individual student.
We just want to do what is in the best interest of the student. Sometimes we learn that it is entirely different than what we originally thought. I work with another student who, up until this point, presented with just anxiety. It was specifically a phobia centered around vomiting. She would come up to me and ask, “Am I going to throw up today?” I would reassure her that this was extremely unlikely. We would do some breathing exercises, and then she would get to class. This year, it has become more involved, because what we see now is actual defiance. Up until this point, we never thought that we needed a 504 plan or an IEP for her. But right now, she has missed thirty-five days of school due to school refusal. Basically, it is not anxiety. When she is here, she is really riled up. It is a tricky case. Where we are right now is that she has asked to go to a therapeutic school. We have set up a visit, and we are in the process of testing her to see if she would be eligible for special education services. It is tricky, because when we send someone to a different school, we have to pay for that, you know? So if we can get it out of special services instead, then that is better because of the way that the funding works.
A challenge for Benton, that is actually really common with students who have hearing loss, is that he doesn’t want to speak up. If he didn’t catch everything, he won’t raise his hand and ask the teacher to repeat what was said, because he doesn’t want to look different. As a result of this, I don’t think that the teacher always recognizes that he doesn’t understand something. Therefore, the teacher will keep going with the instruction and kids like Benton get left behind. It is unfortunate. It is a hole in the education system. But the IEPs and 504 plans help to alleviate that, because we can give them more individualized attention to make sure that they aren’t getting left behind. We step in and try to bridge that gap.
Benton: I was a little bit nervous sitting down with Liz and my parents at the beginning of the year. Just because… I really don’t like talking to people about it. For a long time, I didn’t even know that I had it, so I have had to adjust my thinking to being someone with hearing loss. I don’t necessarily want a lot of people to see me that way when they talk to me, so I mostly keep it to myself. I don’t know if it is that I associate negativity with having a handicap, but I just don’t want it to be obvious if it doesn’t have to be. Liz is someone that I do want to know, so even though it was uncomfortable, I am glad that we met with her. I think that her ideas have helped, just because I didn’t used to get the best grades, and now it is easier for me to keep up with everything. In Colorado, I don’t think that they really knew what was going on. After we met with Liz, she told my teachers what they had to do as far as the accommodations. I’m really grateful for what she is doing. I am trying to enroll in a boarding school after I graduate from Richmond, so I am really focused on my grades right now. Everything that she has suggested has really helped.
Liz: His teachers have been told that they are legally required to use the FM system for Benton’s classes. There are actually panels in the ceiling that resonate the sound. There has been a lot of research that shows that it benefits all of the students in the classroom, not just the ones who need it. Another benefit to the FM system is that it saves teacher’s voices, so everybody wins.
Jen: He has had it since birth, and I didn’t know about it. There weren’t any clear signs. We only discovered it because they did the testing at school. That is when they recommended that we go to a professional audiologist and get his hearing checked. And I guess the way that it is, he misses certain sounds like a loud of “s” and “th” sounds. The soft noises, so… sounds that are at a certain pitch, he can’t pick up. I do wish that we could have caught this sooner. It seems simple, but if he didn’t know that those sounds were missing, or he didn’t have anything to compare it with, then no wonder he just assumed that he was a bad student. It makes you really feel for kids who go through their whole lives this way, and never realize what is actually going on.
Liz: One of the things that is helpful with special education is that there is a group called People Services that meets on Fridays. All of the learning specialists come together with the special education teachers at Richmond middle school. Also, all of the services providers, the writing specialist, the reading specialist, are included. They really do a lot of thinking, and case bouncing off of one another. It is like a think tank, so that we can say “Hey, this is happening with so and so. Does anyone have any advice for me?” There is a professional learning community with the people service group, so that is a really helpful session to go to. The other thing that I would say about special education here is that our learning specialists are really talented education assistants. They are paired professionals, and they work with kids that have disabilities. We have a lot of certified teachers that are education assistants. We have someone who used to be the principal of Marion Cross elementary school who is an education assistant. A lot of the time, schools will hire people with only a high school education, and that makes a big difference for the kids. Students really get the best here, because we take the time to hire only highly qualified teachers that love what they do. They want to make a difference in the lives of their students. It is what makes Richmond Middle School such a special place.
Benton excelled at music in spite of the hearing loss!
Pam: Music has always played an important role in my life, and I think for him as well. I don’t think that I noticed any problems. I find it quite astounding that he is quite capable musically with the hearing loss. He always seemed just very normal, a fabulous child. I feel very blessed to be around him. He’s a great kid, and I never really noticed the hearing loss. And now, looking at his musical capabilities, it astounds me that he does have a problem with sound.
Sarah: Music has always come naturally to him. He has mostly just had difficulty in school, especially when it gets really loud in the classroom. Hearing instruction from the teacher is hard for him. Personally, I have a really nice low-pitched voice, so he can pick up the sounds and that kind of stuff; but sometimes, if he is facing away from me, then he has a hard time hearing me. He asks me, you know, to repeat what I said. It was a little difficult until we realized that he did have a hearing problem. We had always wanted to give him the benefit of the doubt. We also feel responsible for making him the best that he can be, so we wanted to address misbehavior if that was what was going on. The diagnosis made it extremely clear that he wasn’t just ignoring us.
Tuck: I think that this place is definitely an escape for some of these kids. I think that music is a creative way to apply the energy created by frustrations. Whatever your situation is, you can put that into the music. I think that is also behind why some people like punk, and then other people like pop. They want to create the happiness. Kids come in here, and they definitely feel like we are in the safe space of music. We are pretty centrally located as far as the way that the tri-town works, but we also have the rural roots. It is a nice blend.
We are a music school that is really geared around taking the interest of the individual and making that happen. We teach the traditional things like chords and scales, but rather than having it be the same repeated exercises, I ask the kids what songs that they like, and then I show them the chords that are in that song. I will also show them a set of notes that they can use to riff their guitar over those chords. I sort of ease them into the terminology as it seems cool to them. If they are interested in making their own songs, then we talk about songwriting. If they are interested in playing with others, then I make that happen for them. They pick the songs that they would like to play together, and I kind of teach everybody their parts after listening to it on YouTube. I try to get them playing within the first fifteen minutes. It is a quick turn around.
The hearing loss has never gotten in the way of his music. We haven’t done anything as far as checking his listening to test out if he is hearing everything correctly. I am actually just finding out about it right now. I didn’t realize that Benton had hearing loss. I think that he, where a lot of kids are in a hurry to get stuff done, he shows that he can slow it down. Get it right. If it’s not right, we address it. So, I think that he is taking the longer but more methodical approach. Right now, he is getting his reading altogether, and he is working on his finger dexterity. We have done a little bit of work on how you can improvise and really make it your own; but right at the moment, he is just focused on trying to learn the songs.
We all reach a point where we kind of figure out that people help you, but ultimately it is up to you. If you want to get ahead in the world, then you have to figure out what is best for yourself. This is especially true when you have any kind of handicap, whether it is mental, emotional, or physical. You develop strategies to make it work. It is a sink or swim situation, but it is effective.
Our Differences are What Make Us Unique.
Benton: In Colorado, I was teased all of the time just because I had two moms. That was hard and it always made me upset; but here, almost every single person knows and nobody teases me. I haven’t had one person tease me here. I have noticed that some kids actually help the other kids with learning disabilities. Nobody did that in Colorado, so I was really surprised that you could be in a school where other students actually want to help each other to succeed. It was hard to get used to at first, but I like it.
Paul: He confided in me about the bullying. I told him to report it to the teachers. The public school he went to in Colorado was very hands off. He went to a couple of schools in southwest Colorado, but that particular public school was the worst. I told him that the best thing to do is report it to the teachers, rather than getting in fights and stuff like that. In the end it didn’t really make a difference. The teachers didn’t do anything—nothing. Jen had to move him to a different school district.
Jen: I think that it was a little bit worse in Colorado. Some of what the kids said was attacking Benton and our family. That can be hard on any parent. He is my child, my only child. He and Sarah are the two most important people in my life. I just wish that I could protect him from some of these kids. They can be so cruel. That’s why we did move a few times when we lived in Colorado, and ultimately the move to Dartmouth was a positive thing. Sarah and I could get our master degrees here, but honestly, Benton was our first concern. We would have moved for him either way. This has really been a blessing.
Sarah: We are fortunate that we were able to combine the continuation of our education here at Dartmouth while also providing Ben with a safer, more welcoming, environment. The Dartmouth area is really wonderful. Sometimes I wonder if the atmosphere here has played an equal role in his academic improvement as the hearing loss diagnosis. It’s hard for any child to focus on school while he, or she, is hurting. Imagine that you are scared to go to school for fear that you will be picked on again. That is no environment for any student to learn. I think that a hostile environment can be even more devastating on a child’s education than a special education diagnosis. It’s more challenging to fix. Even if the teacher sits down with the student that is doing the bullying, there is only so much that the school can control. Bullying also hurts the child’s self-esteem in a deeper way, so it is a deeper cut than getting a bad grade on a test because you didn’t hear something. Getting teased can also infiltrate the child’s grades as well, because it’s more difficult to focus. That is why we are so thrilled with the change in schools. Richmond Middle School has been a great environment for Benton to learn, and it has to do with more than just the accommodations for his hearing loss.
Liz: The kids here at Richmond Middle School are just great. They are so engaged. No day is exactly like another day, you know? You never really know what is going to come next. Yesterday was my birthday, so the kids made me a crown and a little cake, and left me messages all day. I have never worked with a better group to be quite honest. They are just really sweet kids, and they love learning, so it’s a good place to be.
Sarah: His scout leader, Dan, is hard of hearing as well; so, I am glad that Ben has people that he can look up to. Benton was just elected as the den leader of his Boy Scouts group. It means that he will teach classes to the younger cub scouts. He has a lot of patience, and I think that he will be really great with the kids. His scout leader wears a hearing aid, so it is a little bit more obvious. With Benton, using a hearing aid would actually worsen his condition. It would make him more sensitive to certain sounds. I am not sure if his inability to use the hearing aid works as a positive or a negative thing in terms of his psyche. He is able to blend in a little bit better with his peers due to the fact that he doesn’t have a hearing aid. Most times, people don’t realize that he even has hearing loss. But then again, it would be nice if the hearing aid was an option, only because hearing loss accommodations aren’t as easily accessible outside of the school environment. I mean, sure, if you talk to your employer then you are able to receive accommodations; but in everyday places like the supermarket, you have to make do. And in those situations, I think, the inability to have a hearing aid can itself be something of a handicap.
Benton: I do see my Boy scouts leader as a role model, but not with that. I kind of see that he has it. I haven’t really noticed. He has gotten so used to it that I don’t think that he even notices it, and the other scouts and I never mention it. It’s never been something that we really talk about, or are even aware of to be honest. It’s helpful to realize that other kids in my class have IEPs or 504 plans as well, because it is actually more normal than I used to think. I can see now that lots of people around me have something—whether its hearing loss, Autism, or ADHD—and we all manage just fine.
Jen: Frustration, I would say. Not really pity, but frustration. And sometimes it kind of infiltrates his academic potential. I think that he worries that he is not smart enough, because he doesn’t pick up on everything that he should. That is hard on him, because he starts comparing himself to his peers. I haven’t really noticed it as much since moving here. He has the support of the school here. That really gives him a different mentality than I saw in Colorado.