“Is that the best ice cream ever” I ask Jack and Fiona. I sign it too, I know these signs well. One of Fiona’s hearing aids broke this week, now she’s not wearing the one that still works either. I practice signing this sentence several times- I keep my hands near my face, practice the flow of the signs as I say them out loud. Jack and Fiona close their eyes as they eat the cone, it’s the kind with vanilla ice cream covered in chocolate with nuts. I sit on the couch while they eat their cones, play with toys, talk to me. I talk to them too, but Fiona can’t hear much of what I say. Jack and I must talk louder, get her attention, we work hard to include her in everything that’s said. Jack asks me some “why” questions, I answer him using many words, lots of vocabulary that Fiona misses. I start to feel bad but remind myself Fiona has a whole inner life as well. It’s not like she stops thinking when she stops hearing. But I do think of all the studies, as people age and lose hearing they start to get depressed and regress. Fiona was acting out all week. She complained about not being able to hear, that her hearing aid wasn’t working. I put new batteries, I listened to the aid, I got it working a few times but by Thursday it was dead. When her hearing aids aren’t working, or in situations when she can’t wear them she is not happy.
When Fiona was younger, before she turned four, she seemed fine without her hearing aids. I didn’t feel like she was missing that much, and she never complained about not hearing. She was never frustrated about not hearing as she is now. I always worked hard since she was a baby to get eye contact, make sure things were ideal for our communication. I think I did a good job, I knew there was vocabulary she wasn’t picking up, even with her hearing aids on, but I accepted that. Maybe it’s only because I have twins, one hearing, one not, that I can see how many words, how many situations that go over Fiona’s head. I use my sign constantly in these situations, but last night on the couch, while they ate their cones, I realized how much more sign I need to learn. For the past three years my sign vocabulary that I’m learning, and my abilities have roughly coincided with Jack and Fiona’s developmental language stages. Now, I feel I am way behind. They are talking and asking questions about complicated issues, their language skills and comprehension have exploded.
The past several months has been intensive. Jack and Fiona have entered a new developmental stage that requires everything I have as a parent. It’s life lessons, how to treat each other, how to share, how to cooperate, how to clean up after ourselves, things of course I’ve been teaching all along, but now it’s different. I’ve had to begin saying “because I said so” lately. I tell them something and they ask “Why”. I explain and explain, one, two, three times. If they ask one more time I say, “Because I said so!”. Sometimes I find myself getting frustrated and impatient, especially with Fiona. I remind myself that she probably didn’t hear me or understand what I said. I remind myself to be patient.
Jack and Fiona started swimming lessons. At the pool Fiona can’t wear her hearing aids. Can you imagine learning to swim at four years old and only hearing a portion of what the teacher is saying? At first, I didn’t understand. Fiona did great the first couple of weeks, but the pool was quiet. The day the summer camp kids arrived that changed. Fiona was with her swim teacher practicing and bunches of kids were doing their swim test in the same lane as Fiona. The teacher said “O.K. I’m going to let you go” to Fiona, but I don’t think Fiona heard or knew the teacher was going to let go of her, expecting her to swim by herself. Fiona called me. “I want to get out” she said. “O.K.” I said. I got her out and wrapped her with a towel. She said she never wanted to do swim lessons again. At first, I was annoyed. I thought she was just being difficult. “I’m freezing” she complained. “I want to get dressed” she said. I gave her peanut butter and jelly sandwich and we waited for Jack to finish his lesson. Fiona didn’t do her lesson two more times after that.
The next week, after I realized maybe she really was scared and maybe it totally has to do with not being able to hear, I talked to the swim teacher about it. The swim teacher adjusted her communication style with Fiona and it seemed to help. Fiona did overcome her fear and by the end of this week she can swim by herself! Fiona still complains often at the pool about not being able to hear and wanting to get dressed and put on her hearing aids.
A few weeks ago, I went to a family day for students in our county who have hearing loss. High school students talked on a panel answering parents questions. I found out that none of these students used sign language. They were asked, “Do you take off your cochlear implants at home?” The students would answer yes. “Can you hear what your parents are saying?” The students answered “No”. They said they try to read lips but don’t understand everything. The parents of these children did not use sign language either. They relied solely on oral communication, they depend on the amplification devices. The same is true for the student’s classroom experience, even though each deaf/hard of hearing student has an aid who uses sign language. I mentioned this to Fiona’s previous teacher and she said, “these children are being deprived of language”. I thought about this as I sat on the couch while Fiona and Jack ate their ice cream cones and I struggled to come up with enough signs to tell Fiona exactly what I told Jack.
I feel sign language is so important in raising a child with hearing loss. We can’t depend on amplification alone, and is it fair to expect a deaf/ hard of hearing child to lip read? Is it fair to just let the deaf/hard of hearing child miss learning as much language as her hearing peers?
I was struck by stories of immigrant children, the ones locked up and taken away from their parents recently who are deaf and do not know any sign language. It said they are mostly illiterate. Can you imagine being one of those children? I can’t think of anything scarier than that. There are many countries where there is no newborn screening for hearing. These kids slip through the cracks. There are many states in America where there is no newborn hearing test, and it takes almost three years to realize a child is deaf or hard of hearing.
I’ve learned a lot from my daughter. She has taught me so much about patience, compassion, and being present. I have learned how important communication and language are. People try to simplify things, I’ve heard so many parents talking about their deaf/hard of hearing children, saying they are fine, they have cochlear implants, or they can hear fine with their hearing aids on. Things are so much more complicated than that. It doesn’t make it easy with amplification. It makes it easier to learn how to speak and learn language, but it doesn’t make it easier to understand what people are saying to you in a loud environment or with a person who talks to you while their back is facing you instead of their face. Or any number of situations. I want more people to learn and use sign. I want to be fluent in sign and I hope Fiona will be too. Jack asked me the other night if I could teach him sign. It was so sweet.