Paul J. Boldin Jr., a recipient of bilateral cochlear implants, shares his experience in a podcast interview. He was diagnosed with bilateral sensorineural hearing loss at a young age and received his first implant at around 26 months old. He later received a second implant at age four. Paul’s parents initially tried hearing aids, but they were not effective, leading to the decision to proceed with cochlear implantation. Paul discusses his journey from elementary school to high school, where he faced no bullying and had accommodations such as reduced distraction environments and preferential seating. He also talks about his experience playing high school football with a specially modified helmet to protect his implants. In college, Paul attended Alfred University, where he received accommodations and support from the Center of Accessibility Support Services. He emphasizes the importance of class sizes and accommodations when choosing a college for individuals with cochlear implants. Paul encourages candidates and their families to keep trying, seek support, and explore resources available to them.

Transcript

Voiceover:

Cochlear Implant Basics is a site for candidates and their families and friends. If you have been told you qualify for a cochlear implant, these podcast interviews tell how receiving a cochlear implant can be a life-changing experience.

You’ll meet recipients who face a hearing loss and that hearing aids could no longer provide comprehension of speech or music. They face growing isolation, inability to socialize, or compete in the world of business, the joy of music disappeared. They explain how receiving a cochlear implant changed their lives.

Welcome to Cochlear Implant Basics. A reminder, Cochlear Implant Basics is not sponsored by anyone, nor is it offering medical advice. Please consult your own healthcare provider.

Richard:

We’re speaking to Paul. Why don’t we start off by stating your name, the date, and where you are?

Paul J. Boldin Jr.:

All right. Well, hello, everybody. My name is Paul J. Boldin Jr. Today’s date is Friday, June 28th, and I’m just about one minute after seven. I am calling in from Alfred, New York, Alfred University specifically.

Richard:

That’s true because I met you several weeks ago. I went up to Alfred University for my 50th college reunion, and I walk into registration, who do I find? A gentleman with bilateral cochlear implants. So of course I started a conversation. Tell me a little bit about your hearing loss. Do they know what caused it?

Paul J. Boldin Jr.:

As far as I know, I was diagnosed with bilateral sensorineural hearing loss, not really sure what the true cause of it was. I do have a couple of ideas myself, but nothing definitive. However, I’ve essentially had this since birth.

From what my parents have told me, I, during the initial tests had X amount of hearing in my right ear, but it was at a very low level and had been told that it was just going to decrease as time got on and as I got older. So the choice to move ahead with implantation was not made until about 2002, 2003. This was done on my right side at first. So around 26 months I was implanted on the right side, and then this would be followed up with a surgery on my left side, around age four for me.

Richard:

Okay. So at age four. So what we call the critical point is age three because that’s when the plasticity of the brain tends to change a lot because your voice is [inaudible 00:02:48]. So being caught very early probably made a big difference. Do you know how your parents felt when they found out that you had a hearing loss? Did they ever talk to you about it?

Paul J. Boldin Jr.:

After birth some of the early tests were conducted and the doctors had come back and said, “Well, your child didn’t do so great on the hearing test, but we’re going to reevaluate this down the road.” The story, as I’ve been told, was on Easter Sunday, 2002. My mother who was making preparations for my family dinner, came into my room just to check in on me and called out my name. Well, I didn’t respond. I was either looking at something on a wall or towards a window looking outside, not sure. Called my name again and again and again.

So finally she went back into the kitchen and grabbed a pot and a pan and started banging them together, trying to get my attention and I would not turn. So she then spoke to my father and said, “Well, we got to get an answer.” So what followed were a series of doctor’s visits, audiology appointments. I don’t know if this was a nationwide standard at the time or if this was a state by state case, but I was not eligible for implants right away.

The audiologist that my parents took me to said that, “Well, in order to try and see if he would be eligible and to prove it to medical insurance, we have to enroll him in hearing aid trials.” I was told that this was about six months long trial, not covered by insurance. At least that’s what the policy was back then. So that was a battle, from what my parents told me. I was very, very much not receptive to the hearing aids. I didn’t like keeping them on, and it was a struggle, a lot of back and forth.

Six months came and went only for the audiologist to say, “Well, no real progress there.” Then, “Okay, he’s cleared for an implant.” So then that’s when my right side surgery was approved. So that’s the lead up to the first implantation, which again, yeah, around 26 months. So just after I turned two, my parents really wanted to try and keep me on the ball and make sure that I was able to start speaking orally as early as possible.

Richard:

So they kept you mainstream from the time you got your cochlear implants. You went through school, mainstream school, or did you go to a school for the deaf?

Paul J. Boldin Jr.:

A lot of options were considered. For reference, I am originally from Columbus, Ohio. So we did at least most of my audiology related stuff in Cincinnati, specifically at Cincinnati Children’s Hospital. Columbus Nationwide did not have an audiology department ready at the time, so Cincinnati was the most readily available option. My parents were looking at options in the Cincinnati area. They were potentially looking at Ohio School of the Deaf, but really wanted to try and keep me mainstreamed within the public school system.

After a couple of years, I spent about, I want to say a year within Columbus City Schools. That really did not pan out. There were standards were not really up to what my parents were looking for. So they withdrew me from CCS. Then we moved over to Upper Arlington, Ohio, which is a separate suburb within the Columbus area. I enrolled in the Upper Arlington school system, which they are contracted with the Franklin County Special Education Services. They have a name for it. It’s blanking out on me.

So county provided services that the school was essentially obligated to provide. So I started preschool there, had an audiologist speech therapist and a teacher of the deaf on hand. Worked with a lot of those folks, absolutely amazing people. The sign language interpreters were all amazing. That’s where I ended up going for pre-K all the way up until my senior year.

Richard:

Actually, you brought up something very interesting. Did you learn sign language at the same time you already had your hearing?

Paul J. Boldin Jr.:

I believe either right after I was implanted with the first one, my right side one, or maybe just in the run-up to the surgery, my mom and dad had started just a very rudimentary basics of sign. I had retained some of it, but after my first implantation and then just the post-op meetings and everything, the surgeon actually, I think the surgeon and my audiologist at the time said, “If you want your child to speak orally, if you want that to be the modality of communication, drop sign. Immediately, drop sign, or you could try and do both.”

So we switched gears and I’ve been speaking orally ever since. With that being said, I have taken sign language courses. I took two years of it in high school. It was offered. One of the sign language interpreters who initially worked for the county, became a teacher for the school district. We knew who she was, she knew who we were. So I was like, I’ll give it a try. This meant me dropping almost three or four years of German and then going to sign language. Then when I went to Alfred University, I switched back over to German because sign language wasn’t offered at the time. So a lot of back and forth.

Richard:

I understand now. This is one of the questions that parent to pediatric candidates often say or often ask or are concerned about whether they should be teaching sign at the same time. I frankly don’t have an answer for them.

I never learned sign language, even though I was deaf for 35 years because I didn’t know anybody else who was deaf. I said, what am I learning this for? To speak in the mirror? It didn’t make any sense. So your perspective is very, very interesting to me.

Tell me about elementary school. Obviously you and I stuck out, had hearing aids out of both ears. You had a cochlear implant. Was there any sense of being bullied or being different or accepted?

Paul J. Boldin Jr.:

Not necessarily. I mean, I had a pretty enjoyable time going through K through five. I always knew that my peers, my classmates, my friends always kind of knew that I was not exactly like them because oh, well, he goes to the hearing room from this time to this time for speech therapy or to do homework or something. Or if I had a meeting with the teacher of the deaf or speech therapist, etc. etc.

There was nothing that really I got bullied for. I found that people were sometimes envious. As part of my IEP, I could take quizzes in there, I could take the state tests in there in a distraction free environment as stated on my IEP or 504, depends on what they call the form and whatnot. So I think people were definitely jealous that I would remove myself from a room full of 18, 25 people and I just have a desk in front of me and I’ll just do my test in here.

Elementary school was definitely a lot of the trial and error stages. The model of implants I had at the time… For reference, I’m with the Cochlear America’s nucleus product. So I think the ones that I had at the time were the Freedom, real bulky, behind the ear pieces, which those were heavy to wear. At the time, I could use the FM transmitter. So I would have the FM receivers on my implants and I would give the microphone to the teacher so that way it could amplify what they were saying for some instructions so that way I could just hear it better.

It was a lot of trial and error because sometimes it wouldn’t work. Well then we would have to change the battery and then, oh, no, it was an effective product, send that back to the county. County would have to send a new one out. Thankfully that’s why we had an audiologist on hand who strictly dealt with the inner workings of that technology. So that really was just the stage of just trial and error. Then in middle school it was just the same thing over and over again. About halfway through high school where I ended up not using the FM transmitter anymore.

Richard:

By the time you got to high school, you were probably using Nucleus 6 or Nucleus 7 by then, which improved drastically.

Paul J. Boldin Jr.:

My upgrade cycles actually were pretty interesting because my seventh grade year I upgraded to the Nucleus 6. I had been on the N-5 towards the end of grade school, went to the N-6, and then halfway through high school I went to the N-7. That was a whole game changer with the new programs, with one-on-one, forward focus and just absolutely just different playing field.

Richard:

Let me take you from middle school to high school because I know that high schools tend to be a little less sympathetic and they tend to let you sink or swim on your own a little bit more. When I went to school all the way elementary school until high school, I never knew anybody who even had a hearing aid. I was the only one there with a hearing aid.

In high school I believe there was one other person with a hearing aid. Later when I got to Alfred, there was one other person with a hearing aid at Alfred. So it’s kind of always like being a fish out of the water there.

Tell me a little bit about high school, then why you chose to go to Alfred. How were you doing with your… By now you’re saying you weren’t using your FM system, you were able to participate with that. So tell me a little bit about high school and why you chose Alfred University.

Paul J. Boldin Jr.:

In high school, it was the stage of where I had to be more present in the IEP meetings, basically kind of self-advocate and state why I needed to have the particular points on the IEP, like why I needed reduced distraction environments, preferential seating, whatnot. Then when it came to the FM transmitter, we primarily used Phonak devices. Then Phonak came out with the Roger, which I believe was the all digital version of the FM transmitter. I really didn’t need it because the forward focus feature really replaced that.

I told my teacher of the deaf, I was like, “I kind of feel bad having this because it is just sitting in a box. Could we maybe just send this back to the county to see if there’s somebody at a different school that needs it?” She was like, “Okay, I’ll pass that along to the supervisor.” I think they ended up cycling it for a lower classmen who came into the program a few years behind me. So it was ready for them for when they transitioned from middle to high school.

Once it got towards my junior and senior year, I was not using that. I was about midway through playing high school football with a specially modified helmet to protect the implant. I was doing that in the fall. So I was taking part in sports and then getting ready to apply to college.

Alfred is a funny story. I was looking at a couple of options back home in Ohio and one or two options over in PA. The university president, President Mark Zupan of Alfred is actually an alum of Bishop Watterson High School back home in Columbus. He and my mother were in the same graduating class. So she found out through an alumni magazine of the high school and was like, “Oh my God, that’s the class valedictorian and he’s off running a university. Let’s just go up one weekend and we’ll check it out.”

So we did. I talked to retired professor of history, Dr. Gary Ostrower, and talked to Dr. Jeff Sluyter-Beltrao of the Poli Sci department, and I fell in love with it. They were very dedicated faculty and I’m a history nerd. I like to read. So I was like, if these people have a passion for teaching what I like, I think this is going to be my home. Alfred was the only place that I applied to and I applied on early decision.

Richard:

That’s just amazing. I love that story. Gary Ostrower sat with us on the last night of the alumni weekend because the four guys I was with, they all knew him very well. So it was fun. I have to now ask you more about the sports and the helmet because that’s another question that comes up constantly. Did you modify your own helmet or was somebody able to do it for you?

Paul J. Boldin Jr.:

So the coaching staff at the time were very, very, very accommodating. They knew I wanted to play and were like, “Okay, well you got those things on your head, so we got to try and figure out how we can at least protect them.” We took one afternoon and they took out a dummy helmet and said, “All right, well try and shove it on and kind of just point to where your implant is and we’ll try and mark it.”

So we did, and they marked the inside and outside and said, “Okay, we’re going to contact a representative of Riddell.” We were fortunate to have a representative come out and do custom fittings for each and every player. So the next time he came out, we put in a special request and he was like, “Okay, well only stipulation is this will be yours.” My parents had to pay out of pocket for it, but it was mine.

I still have it. Way past its expiration date. The foam is all practically rock hard. So that helped tremendously. We just had to cut the foam down a little bit to allow more room. What I essentially did, I was still using… Well no, I was using the Nucleus 7 for school, but I had the Nucleus 6 as backups and I had the Aqua accessory.

I’m a hot sweaty mess in the summer, so I was like, you know what? I’ll just put the Aqua accessory on. Worked like a charm. You have to really get that magnet to really stick in and then it works. It was a wonderful combination that I didn’t think was going to work at the time.

Richard:

That’s a fabulous story because I did one segment on my website or before that about modifying helmets for sports. I contacted, I don’t remember which manufacturer it was, and the president got back to me. He said, just use a Dremel tool, cut out some of the foam, which I did. My motorcycle helmet, I cut out the foam. When I posted it online, I got a lot of flack like, “Never do that, never do that.” I said, “If the president of this helmet company said do it, what the hell am I going to tell you?”

Paul J. Boldin Jr.:

It might come down to, it might just be better to let the manufacturer do it, but I mean, hey, if they’re saying take a hacksaw. I’ll try anything once.

Richard:

I’m sure parents are going to want to know a lot more about this. Your point of view was absolutely incredible. All right, now you got to Alfred. When I was there, there were no accommodations. Obviously back in the ’70s we were still smoking in the classroom kind of thing. It didn’t… Every classroom has disposable ashtrays, so we’re really back there a long time. The classes were small. I assume the classes are still relatively small, which made your job a lot easier.

Paul J. Boldin Jr.:

Yeah. College was a rollercoaster. For reference, I graduated high school in 2020, so the world caught on fire at the time, but I was all squared away, was ready to go. We had the social distancing policy, we had a mask policy. The classes were small.

I mean the student population at the time, I want to say was like 16, maybe 1700 people total. So a naturally small student to faculty ratio, maybe 10 to one. These were class sizes that I was familiar with from high school, but maybe even smaller depending on what the course was.

Actually before I even got there, I had a meeting with the Center of Accessibility Support Services on campus and I applied for both housing and academic accommodations. So I had my teacher of deaf who signed her endorsement. I had my audiologist who signed his endorsement. I had everything lined up and a copy of my IEP.

I was thinking, well, it’s not like high school where I was fortunate enough to go somewhere where they had county provided services. I got to see if the school is going to be willing to provide, and I was mentally preparing myself to have to fight with them.

Got on a Zoom call like we are now. The director at the time, I’m fortunately blanking out on her name, she basically said, “Okay, so what do you want? We have your IEP right here.” She had a copy of it and was like, “What do you want from us?” I was like, oh.

Richard:

What a change. What a change. My gosh. I have to ask you, if you were recommending colleges to somebody in your same situation who gotten their cochlear implant fairly young, they’ve gone through high school, they’re going to college. Would you make your college choice based on class sizes?

Paul J. Boldin Jr.:

Class size would definitely be a big factor. Where I was going, a lot of my high school classmates, we were basically in the heart of Columbus or at least close to it. A lot of my peers were pipelined either to OSU, Ohio University, University of Michigan up north, or UC down in Cincinnati.

All big schools with a five digit number student populations. I really couldn’t fathom. I mean, once I started looking at numbers and it was like student to faculty ratio, 50 to one, a hundred to one, 200 to one, I was just like, I don’t think I’m going to succeed as well.

Now, I mean that’s not to say that these universities are horrible or anything, it’s just I think in terms of the accommodations provided and being amongst however many thousands of other undergrads would’ve been a lot more difficult to get a very personal and one-on-one connection like I do with the Alfred faculty. So yes, class size is definitely a big factor.

Then in terms of the accommodations, do they have offices that can you basically get in touch with, but are they willing to at least hear you out? Are they willing to look at your IEP or 504 and your medical history with a disability and whatnot and say, “Okay, we are willing to give you X, Y, and Z. We can’t provide everything but X, Y, and Z.” If they’re not able to do that, I would say keep looking elsewhere.

Richard:

That’s excellent information. I’m sure parents are going to want to know about. You obviously had a lot of support along the way, which is great. You weren’t like a fish out of water for most of your life. You had great support. Do you have anything you’d like to add to parents or recipients about your experience?

Paul J. Boldin Jr.:

I would like to say just keep trying. I know it’s not the easiest thing to deal with. Believe me, I curse the technology sometimes. I mean, we’re like a little toy. We just have to get wind up every now and then. Hopefully as technology progresses, the battery technology might last longer and et cetera, et cetera. The Bluetooth functionality was definitely a big, not necessarily like a cyber leap, but it was like, oh, well this is cool. We’re able to use this with a laptop or a phone or an iPad or something like that.

So keep trying it. Don’t be afraid to explore it. Definitely not only document, but ask questions. Go to your audiologist, please see an audiologist. Talk to people like yourself. Talk to people who are recipients like myself. Try and find local chapters or support groups. There is stuff online, there’s books and journals, et cetera, et cetera.

So there are resources out there compared to when my mom started, it was like, well, got to try and hopefully find something. She was lucky to come across some very good resources on the Oberkotter Foundation and who provided resources of, okay, what to do with your child’s diagnosis. So yeah, just keep looking. There’s resources out there.

Richard:

Well, you’re an inspiration. I really thank you for your time. I think my meeting you by going to Alfred, you were the reason I had to be there at the time.

Paul J. Boldin Jr.:

[inaudible 00:24:14].

Richard:

Okay.