One of Beginnings SC’s Board members, Missy, has been Deaf since birth. She and her husband, who is also Deaf, use American Sign Language as their primary mode of communication, as do their two children. In November 2016, their oldest child begins to request an evaluation of his hearing because he was pretty sure he had a hearing loss, but wasn’t sure how much. Watch Missy as she gives an account of the past few months and where everyone is now.
Captions are available, but below is also the transcript that Missy wrote herself.
I hate being videoed but this is pretty important. I feel I need to share with you all than to text or email to each one of you individually.
We both want to tell you about Patrick, our 15-year-old son. He himself is fine; don’t worry–he’s fine.
Last early Fall, Patrick mentioned that he was missing sounds and words. Jeff and I brushed it off because we all had just had a fun dialogue about deaf schools, mischief going-ons, etc., then Patrick brought up his remark. So we didn’t take it seriously.
Later on, Patrick and I went shopping (rare!) for clothes. In between, he admitted again, “Remember I mentioned about not hearing some words, background noises?” Me: “Yes; what about it?” He: “Remember in 7th grade,” (he’s now in 10th grade) “close to summertime, the teacher had a tuning fork that vibrates?” Me: “Yes.” P: “I failed it. Myself and one other student.” Me: “Ooohhh…okay…That’s okay…?” P: “I think my hearing has downgraded.” Me: “Ooohh…” Then we got back to shopping, looking around, etc. But that comment stuck in the back of my mind.
This recent November, Patrick firmly told us that “My hearing has deteriorated. I have a hearing loss. I want a hearing test.” I was a bit taken aback and looked back to his previous remarks about the tuning fork, and other incidents. Jeff and I looked at each other and agreed. We both apologized to Patrick, saying, “We are sorry for initially not taking you seriously last Fall but we now see that you mean it. Can you give us other examples?” He rattled off some other examples.
I exclaimed, “You mean, it’s been happening since 7th grade!?!?” P: “No–It initially started towards the end of 7th grade, around Springtime. Very mild, nothing big. Same in 8th grade, minimal. Last year in 9th grade, it became more noticeable. This recent Fall (of 2016), definitely noticeable enough.” Patrick mentioned that when he went to the movie theater with his girlfriend, he did not really enjoy the movies much because he kept on missing words, background noises. He preferred to go to a home to watch movies with captions/subtitles so that he could get the full movie plot experience. I asked, “You mean, you depend on the captions all along? But you have always read the captions while listening since you were 4 years old.” P: “Yes, but I thought it was normal to have a little hearing loss because I have deaf parents.”
After that comment, I felt kinda lousy. 🙁 We never noticed it…because he was heavily involved in Band, attending practice each day during the Summertime. When he arrived home, he was always excitedly telling us what he learned. He would say, “Oh, it was so hot outside!! Rough practice!! But I loved it!” Then would proceed to tell us about new notes, such as B flat, treble, etc. Jeff and I have difficulty understanding Band terms but because he was enthusiastic, we enjoyed listening to him. So it was “obvious” to us that he had no challenges with hearing things.
P: “But I noticed that since Fall of 2016, it has gotten worse. I want to know how much of a loss I have.” Me: “Gee, you already diagnosed yourself?? But…Okay, I will call.” I called and after straightening it out a little bit with the insurance situation, the appointment was set.
Last Wednesday was his first audiology appointment. It was just the two of us. On the way, of course I got a little lost (which is nothing new). Found the place, parked. I still felt, “Psshhh…Hearing loss? Nah…” We went in then both of us explained to the audiologist about his suspicions. Then it was time for his hearing test in the triangular-shaped booth. Remember back in the old days, we had to wear those heavy and thick earphones?? And press the hand-held button?? Nowadays, the equipment is different. The earphone band is thin, earphone smaller and lighter, and the button–Not sure about the button. Whatever.
I moved my chair so that I could see the computer monitor as to where those “O”s and “X”s would go on the dB scale. “0 dB” is excellent–means you are a hearing person. “10 dB” is a very minimal loss. “20 dB” is when hearing loss is considered a definite mild. Then the other numbers go all the way down on the scale. As for myself, I’m “quadruply” deaf–deaf four times over. (I exaggerated this sign.) I’m on the very last line. You know the EKG with the heartbeat indicators going up and down? Straight line means it’s flatlined. My degree of deafness is the same as that flatline. In Jeff’s case, his mother had German measles while she was pregnant with him. As a result, Jeff does not count. (smile) He has NO deaf or hard of hearing family members on either side of his family. Same with my families–NO deaf nor hard of hearing family members on either side. Just me as the only one and born deaf as well due to unknown reasons. Since I’m the only one, I guess I’m “special.”
When the test began, I saw the audiologist turn some knobs for variations in frequency such as loud, low, soft, high, etc. Luckily, I was able to keep a poker face because that’s when I got my first shock. I remained cool and would not look at Patrick. I peered around the post to quickly check on him and he was fine. Then I went back to looking at the developing audiogram. “WTH!” The “O”s started popping up lower and lower on the audiogram…then went back up a little. It seemed like his dB was in the 30s. When the test was completed, the three of us sat near together.
The audiologist wrote down some info. She said, “Yes, Patrick does have a hearing loss. His range is 25 to 35 dB. He needs a hearing aid.” Then she proceeded to talk about the four different hearing aids. “This one is too weak for you. You need either this one or that one. I suggest you pick either one of those. The other one is extra fancy with all the bells and whistles. You do not need that one. Again, you can’t have the weaker one.”
I was STUNNED
When Patrick was born, he had a hearing test, which is standard nationwide for newborns to be tested within 24 hours of birth. He did fail it…because he had too much fluid in his ears. The doctor said, “Just bring him home and when he recuperates from his cold-like symptoms, bring him back here for a re-test.” So after a week or two, I brought him back. They did struggle with his hearing for a few minutes…but then he was able to pass it. He was not deaf.
You know how most deaf people, when they find out their baby is deaf, they’re thrilled? They feel happy, know how to raise their deaf kid, go to a deaf school, feel a commonality, being involved in the deaf community, etc.? After giving birth to two hearing kids, it’s still easy though. It’s fine they’re hearing and of course, I love them! Since both kids were diagnosed “hearing,” I did not have to think of planning changes in their future.
The audiologist resumed talking then I stopped her, saying, “Whoa, I’m stunned…I need time to process this info.” I looked at Patrick and he was just smiling. He said, “I knew. I didn’t know the dB loss, though. But I just knew. Boy, I’m ready for hearing aids!!” I looked at him and exclaimed, “You’re fine?? You don’t feel grief, bothered, think “shit…” nothing?” P: “No. I have known for a while so I’ve been preparing myself. I actually have a plan written up so that when I find out that I do have a hearing loss, I will change around some areas. An example is Band–I do need to talk with the director on how to accommodate this new change.” I just looked at him, surprised. He is fine; he’s prepared. I kept asking him at different times, “You seriously okay?” P: “Yes.” “MOM!! I’m FINE!!!! Don’t worry! Everything will be fine!!” HE was the one reassuring ME; not the other way around! Interesting!
The audiologist left the room to give us time to discuss a bit more. We were her last patients for the day anyway. After some more discussion, I started to feel okay. We called the audiologist back and thanked her. She resumed discussion and wrote down “I suggest that he get 2 BTEs (Behind-The-Ear) hearing aids.” I interrupted her, “Two?? Not one??” She advised that 1 would not work as well, he’d need 2. I was thinking maybe she was trying to con me for more commission $$, so I asked her, “Why?” She: “For balanced hearing and both ears show the same degree of 25 – 35 dB loss.”
I recall that 40 dB…or 45 dB…I think 45 dB, yes, 45 dB is considered “moderate” hearing loss. “Moderate” at 45 dB is kinda the point where hearing loss starts becoming pretty significant. Patrick is already at 35…so I felt shocked once again. But okay. So we all resumed discussion and provided feedback. It was very good and we learned quite a bit. I asked a LOT of questions and finally showed that I’m involved–to “make up” for our lack of attending to his earlier comments. I asked Patrick if he had any further questions, then presented “What if” examples, which resulted in more worthy feedback. After all was discussed, Patrick and I left the office to my SUV. I was still thinking about what all was diagnosed, learned, said.
I turned to Patrick and said, “So, going forward, I’ll be introducing you as my ‘hard of hearing son’.” Smiled. “I know you are the same person; just need to tweak some stuff.” P: “Yea. I’m really excited about getting new aids!!” (Tomorrow, Wednesday 2/15.) I’m doing this vlog on Monday night, after midnight now. We got in the SUV and he gets out his phone and is excitedly texting. I keep looking at him while driving. Told him, “Let’s go out to eat. You pick the restaurant.” We sat at the restaurant and had a LONNNGGGG talk about everything relating to his hearing loss such as swimming, and a whole list of other stuff.
I did caution Patrick to expect that some of his friends might find excuses to avoid talking to him. I do think his friends will be fine, though, as they’re good friends but gave him a heads up because “You never know.” If that does happen, “Don’t take it personally. That means they were not good friends in the first place. There are millions of potential friends out there. Don’t worry.” We continued our discussion. He is fine.
I did, however, ask Jeff to take Patrick to his hearing aids appointment to be fitted, etc. Since first finding out that he does have a hearing loss that is significant enough to warrant hearing aids, I have been feeling stunned and thinking, thinking, thinking about this. I am okay, okay. However…I believe that reality will hit me when I see him actually wearing two REAL hearing aids. I think I–ironically–will be sad. Because I knew he’d be hearing “forever.” Same with my daughter, Alex, hearing “forever.” But now…it is possible that Alex could be next. Who knows.
Oh, I also asked the audiologist that I noticed you took pictures inside both of his ears as well other inspections; did the insides look normal, does he need surgery, other? She responded, “No; both of the insides of his ears are normal. There are no malformations, improperly developments. Everything’s normal.” She looked at me and asked, “What about you; do you know why you are…?” I responded, “No; don’t know why I’m deaf.”
Growing up, I never cared to know the reason as to why I’m deaf. My deafness has always been with me since birth; it’s a part of me. I did not need to know nor investigate “Why am I deaf?” A couple of years ago, I did think, “Hmm…Wonder why…” Now after seeing that Patrick is bona fide hard of hearing, that puzzles me. Maybe Alex would be next. Then I thought, “Wait a minute…I wanna know why now!!” So I told the audiologist, “I’d like to know why I’m deaf/Patrick’s hard of hearing.” The audiologist mentioned that their office has a geneticist in the same building downstairs. “Perfect!!” I thought. She asked me if I was interested? I gave her a definite “Yes.” They will test Patrick first then me. Patrick and I have an appointment to discuss with the geneticist next Monday on February 20 on expectations, what will be involved in the testing, blood drawn, CT scan, whatever, I don’t know. After this consultation, the actual testing will occur about 3 months later since there is a long waiting list. I told her, “Yes, please put us down for that.” She went downstairs to set up the appointment so Patrick and I talked about that. I am now very curious if they can find out the reason for my deafness and Patrick’s hearing loss. If it is really from me, that would be interesting. I’m still surprised at all this.
I just wanted to let you all know that Patrick is hard of hearing. If you call him and are puzzled as to why he’s ignoring you, he’s not–he just can’t hear you.
I explained to Patrick that once he gets his hearing aids, he will be almost like a hearing person again. If I wear hearing aids, however, I will not be almost like a hearing person since my situation is completely different. I’m too deaf like…a dead dinosaur. You, however, have the opportunity to be near-like hearing status. You might need an interpreter for a speech in a large audience, other situations similar to that. We will help you as we know what to do. smile. That’s your advantage.
Patrick kept saying, “I’m fine. I’m cool with this. It’s cool to be hard of hearing. BAM!” I just looked at him and chuckled. “Okay.” Then smiled.