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Marvin
Interviewer (I), Annika (A), Marvin (M)
I: When was Marvin’s hearing impairment diagnosed? A: When he was 2 years old. I: How was it detected? A: We had gone from one doctor to the next because he wasn’t learning how to speak. At one hospital, they said he was deaf; at another they told us not to worry because boys always needed longer to learn how to speak. Then a hearing test was performed at the AKH [hospital in Vienna, Austria], and his hearing impairment was diagnosed. He was immediately given hearing aids – which he used until last year. I: How did he do with the hearing aids? Did his speech develop normally? A: His speech started to develop, but he was very far behind. I: How did family and friends deal with the situation? A: Everyone spoke very clearly with him so that he could read their lips. I: How did you notice when he became completely deaf? A: We noticed that we had to repeat things often, and he didn’t respond when we spoke to him. Marvin thought that his hearing aids were not working – but they were working. So we went to an ENT specialist who said that Marvin had had an acute total hearing loss, and he told us to go to the hospital immediately. At the hospital, they weren’t able to do anything because the sudden deafness had been recognized too late – both because of his hearing loss and because Marvin was too young to recognize it himself. I: When was that? A: In March 2000 – in April he was implanted. I: How did you deal with the fact that your son had become totally deaf and was no longer “just” hearing impaired? A: At first it was a shock – but it just so happened that a boy sharing Marvin’s room in the hospital had just received his second cochlear implant. We immediately started doing research on cochlear implants and were able to get a date for the operation quickly – so there wasn’t even all that much time to think about it. I: So were you more optimistic than scared? A: Yes, actually. It all happened so fast. Four week after the diagnosis of the total hearing loss, we had a date for the operation. I: Who performed the operation? A: Dr. Baumgartner. I: How was the time between the operation and first-fitting? A: Marvin was able to read lips – we had never realized before how good he had become at reading lips. I: How did you approach the first-fitting? What kind of thoughts and expectations did you have? A: We had heard from others that it would take some time, but Marvin reacted so quickly, we were quite surprised. I: How did you feel when you realized that Marvin was hearing? A: The first time he heard his own name being called was really great! He ran out and said, “I can hear, I can hear!” He always told us what he could hear and what he couldn’t hear. We still test what kind of things he can hear – when I hear a bird chirping outside, I ask him what he hears, and usually he’s right. I: What other changes have there been? A: At the beginning, he wore the device only on the bad side, his left ear, which had been almost deaf since birth. We were told that it might not even work, but he did respond! He still uses that side only for one hour each day to train it. I: Can he tell the difference when he only uses one CI? A: He prefers both, he always puts both on. I: Some bilateral children refuse to be tested with only one CI. A: He will do the testing, but he definitely prefers both. I: Did he have any problems adjusting to the CIs? A: No, none at all. I: Was he given the behind-the-ear TEMPO+ right at the beginning? A: Yes I: Is he still making progress in his language development? A: Yes. I: And how is that for you? A: I’m so happy about it. He’s managed to catch up quite a bit at school. And he’s learned a lot with the speech therapist, he practices at home and you can really see the progress. I: How often does he go to speech therapy? A: Twice a week. I: Does he like it? A: Yes, he does. He now knows the days of the week - and he always tells me when it’s one of the days he has his therapy on. He enjoys it. I: Do you do exercises with him at home? A: Yes, we do his speech exercises and repeat what he learns at therapy. When he gets a sentence wrong, I correct him until it’s correct. I: Sounds like tough training. A: Yes, but it’s what seems to work best. I: When did you and others notice his progress following implantation? Did he make steady progress or did it come in spurts? A: Relatives and friends who don’t see him every day always say that they can clearly see improvements each time. But for me, I couldn’t really notice as easily. I had been told that it would take quite some time for him to learn to hear and speak, but with Marvin it all happened so quickly - with the second CI, too. I: Has Marvin changed in other ways since implantation? A: Yes, he used to get teased by others and would only go to the playground when no one else was around. Now, that’s no longer a problem. He speaks much more with others. He used to be very withdrawn and now he looks for contact with others. When no one else is around, he comes over to me and says, “Mama, talk to me.” I: How do other children act with him? He attends pre-school? A: Yes, it’s an integration school for hearing impaired and normal hearing children. I: And what about other children in the neighborhood, on the playground? A: He doesn’t go there, I don’t let him. He plays with kids from his school and with his little sister Marina. I: And before he got his CIs, he used to play alone at the playground? A: No, I would always go with him, I do that now, too. He is never alone outside, it’s just too risky, you never know what can happen when kids are playing around. I: How has Marvin’s quality of life changed? Has it improved? Does he listen to music? A: He loves listening to music. He has a cassette recorder and tries to sing along to the music. He also listens to the radio. Whenever he understands something he’s always very excited and tells me what he’s heard. I: Does he have a favorite song? A: No, not really. He likes the children’s songs his sister listens to. Marina is further along in her speech, and Marvin always tries to catch up with her. I: And what about conversations in groups? Does he participate and can he follow conversations? A: Just bits, but when someone talks to him directly he does understand. We speak more clearly with him, though. When we talk among ourselves in the family, he understands a good deal but not everything. But talking to him alone is no problem at all. I: How does he do outside with street noise and traffic? A: At the beginning, he was bothered when people would look at him, and he would only go outside wearing a cap. Now, he’s fine with it and just says that those are his hearing aids. He even has directional hearing now, and he turns his head in the direction of sounds. He used to just walk across the street without reacting. We live across from train tracks and he always tells me when he hears the train coming, he knows that sound very well. I: How have things changed for you since his implantation? How did you used to see Marvin’s future, in terms of working, school? A: Not so much has changed because he used to hear using hearing aids and now he hears with CIs. He didn’t hear very well with his hearing aids, he hears much more now. I: When his hearing impairment was diagnosed, were you worried about his future? A: We were concerned, but on the other hand we were glad that it was only his ears. Other children have much more serious problems. It is tough for Marvin, but I’m sure we’ll manage just fine. I: So you didn’t have fears regarding his future? A: No, not really. He’s in very good hands at his school. I didn’t want to send him to a public school. We’re happy that he got a place there – he can stay there until he finishes high school. I: He doesn’t have much contact with hearing children? A: Very little. I: Do you think that that will change? Or do you think that it’s just too early? A: No, that’s just the way things happen to work out. Of course it’ll change, but there aren’t all that many opportunities around here, we don’t know many other children. He does have several hearing friends, children of friends of ours. He sees them about once a month. And starting in elementary school, there will be both hearing and hearing impaired children in the class, 14 hearing and 4 hearing impaired children. That’ll be an incentive to learn how to hear and talk like they do. I: Is Marvin an ambitious child? A: Yes, very much so. Especially in regard to writing. He is very eager to learn and asks lots of questions. I: Does he know what he wants to be when he grows up? A: Yes, he’s wanted to be a crane operator for a long time. Whenever we pass a construction site, he’s always fascinated by the cranes. I: Do you still have contact with the doctors? A: Not since his second operation. We once went to an ENT conference, but other than that hardly, at least not with the surgeons. He does take a hearing test every three or four months with Mrs. Igelerla. And she’s so happy with his progress that we don’t have to go back very often. She’s also in contact with the school and with his speech therapist. So she says it’s enough for us to come every four months. If I have any other questions I go directly to MED-EL. I: How was it for you when Marina was born? Were you afraid that she might also be hearing impaired? A: Yes, we had her tested immediately. But her behavior was different than Marvin’s, right from the start. Marvin was our first child, and we had never been confronted with the problem before, but with Marina it was different and we knew what to look for. I went to the hospital with her to have a BERA [brainstem evoked response audiometry] test performed. We were very relieved that everything was ok. I: Were you concerned during your pregnancy that she might also be hearing impaired? A: I always tried not to think about it, and I thought that it was unlikely to happen a second time. There’s also no history of hearing impairment in the family, so I thought that that it was very unlikely. I: What are Marvin’s hobbies? A: Playstation, drawing, playing soccer. I: Is he in any clubs? A: No, not until next year. We’ll see what’s available at school, self-defense maybe. And we’d like to find a soccer club for him. We’ll have to talk to the trainer because Marvin shouldn’t hit the ball with his head. I: Does Marvin remove his processors when he plays sports? A: Only when he goes swimming. He keeps them on when he goes skiing. He’s just started to learn skiing, and it has gone very well, he loves it. I thought it would be more difficult. I: When does he put on his TEMPO+ processors? A: In the morning as soon as he wakes up. He turns them on and doesn’t take them off until it’s time to go to sleep. When he reads in bed, he leaves them on. He doesn’t take them off until the light is turned off. I: So he wears them all day. Does he notice when the batteries are empty? A: Yes, he always comes to me immediately. He doesn’t need to look at the status light on the processors to notice, he can just hear it. I: What does he do during summer vacation? A: He stays with his grandparents, they have a big yard, and he can do whatever he wants. I: Is Marvin good visually? A: Yes, he has an excellent sense of direction. If I move anything in his room around, he notices it immediately. He’s very good at remembering faces, too. I: How is his relationship with Marina? A: They are always together. At first, Marina also wanted a TEMPO+ and tried to pull his off. In the meantime, she’s gotten used to them and knows that they are his hearing aids. When Marvin is in the bathtub and not wearing his processors, she looks at him directly when she speaks so that he can read her lips. Marina is two and a half years old. She’s learned a lot from Marvin, even in terms of her speech because she is always with us when we do his exercises. The kindergarten teachers say that her speech development is advanced for her age. She enjoys doing his exercises and even sometimes corrects him or gets impatient if he takes too long. I: How much can Marvin speak? A: Sentences with four to five words. If a sentence is too long and he can’t follow, he reads lips or asks for the sentence to be repeated. I: Can he use the telephone? A: Yes, he always asks who it is and can also answer. Of course, people speak more clearly with him. It’s not always perfect, but everyone understands what he means. That will all improve, of course, it’s only been a year since his he got his implants. I: Was the situation with his hearing impairment very difficult for you? A: No, I was always confident and optimistic. I met a mother of another CI child in the hospital and she really helped me. It all happened so fast. After the conversation with the doctor, I felt calm and optimistic. I: Why was Marvin implanted on the second side? Was that your wish? A: No, we were at the hospital for a check-up and Dr. Baumgartner said that an appointment for the following day had opened up. We agreed immediately. Of course, there are always risks with surgery, but we knew that the ear couldn’t get any worse - and the sooner the better. I: When you learned that Marvin was hearing impaired, was there a feeling of desperation? A: No, because I had read that there were operations to help. I didn’t know any details, but I knew that there were possibilities. I: What advice would you give to new parents to prevent hearing loss from not being detected for a long time? A: To definitely have their newborns tested. And to observe their children. Maybe I’ve become overcautious from my experience, but I would be concerned when a child doesn’t answer after the third time or doesn’t speak well. It’s very important to observe. Newborn hearing tests should be obligatory. Identifying hearing impairment early is essential. Marvin didn’t learn to walk until he was 1½. That apparently had to do with his balance – ear problems and balance are related. I had read about that but still didn’t make the connection. And when he started to walk at 19 months, I thought everything was fine. The pediatrician I had at the time was not very good. Marvin often had middle ear infections and was always given antibiotics. When he was not even 2 years old, his ears were rinsed out because the doctors thought he had fluid in his ears. I changed doctors and also went to an ENT specialist and finally to the hospital where his hearing impairment was correctly identified. My advice to parents is observe, observe, observe – and be overcautious rather than wait too long. And make sounds and observe how the child reacts. In our case, Marvin was 2 years old when we realized that he was hearing impaired. People told us that boys just developed more slowly – that’s complete nonsense. That’s what people used to think. Our pediatrician, who was an older woman, told us that too. In Marvin’s records she had written that his behavior and speech were normal for a two-year-old – and yet he didn’t speak a word. I: Did you speak with the pediatrician later and tell her what the problem really was? A: She retired and told me to go to another pediatrician. I needed a letter of confirmation from her that Marvin was hearing impaired since birth, but she wouldn’t even give me one. I: Marvin, what are your friends’ names? M: Alexander and Elvis I: Did Marvin ever react to noise? A: Marvin was a quiet child, he slept a lot. Everyone said that he was so well-behaved, didn’t cry and slept so well. I started to get suspicious. He didn’t even wake up when I vacuumed. My husband once turned up the stereo very loud by accident, and not even then did he wake up. That seemed very strange to us, so we went to the doctor’s. |
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