30 June 2023

Why learn to sign?

These parents had a trio of reasons, with three deaf children. But they’ve since discovered even more. In this interview, Emily and Dylan talk about their family’s journey and why they still use sign language (NZSL) following their children’s cochlear implants.

Tell us a little about yourself/family.

Emily: I knew my husband for a number of years before we got together nine years ago. Not long after we got engaged, married, and had our first child who is now seven. Then we had Brynn (6) Theo (4) and Hadley (3). So we had four under four!

My husband is a twin and he has a younger twin brother and sister as well. He came from a big family, so I guess it was just natural for him to want lots of children.

I only have one sister—who is eight years older than me—and I always wanted lots of siblings so I didn’t understand why my mum wasn’t going to have any more, now I do! But I wanted a big family and for them all to be close together, so we could get our sleepless nights over quickly 😊.

How did you find out that Brynn, Theo and Hadley were deaf?

Emily: From day one, with our second child, Dylan said, ‘I think this baby’s deaf.’ And I thought he was just not used to having a newborn, that he was used to talking to our toddler who responds.

Dylan: The main reason I noticed, was because Brynn wasn’t feeding well, not how Ricky did, who was bottle fed as well. She wasn’t sucking and I had to squeeze the bottle to force the milk in. So, I was paying more attention to her at feed time and when I talked to her, she wasn’t paying much attention to where the noise was coming from. I picked up on her lack of hearing, but it was Emily who noticed the roof of her mouth wasn’t there.

When Brynn was born, the midwives were paired up. Our normal midwife was there for the birth. For the next visit, it was the other midwife. Emily asked about the hole in her mouth—it was quite a substantial hole on both sides. The midwife said it was normal and that it would grow over. And we assumed she knew best, as we had no experience of cleft palates.

At about one month old we had the paediatrician visit. He saw the cleft palate and asked what we were doing about it. Shocked by what the midwife had told us, he instantly referred us to the specialists. We got the ball rolling from there, but because of the delay in getting the cleft bottles, for a month straight Emily and I were doing two-hour-long feeds.

Anyway, that was why I was more attentive to Brynn’s hearing than I might otherwise have been.

Emily: Brynn did three newborn screening tests and she failed all three. We were referred to audiologists to get an ABR (Auditory Brain Response) and at three months it was confirmed that she was deaf. By four months she had her first set of hearing aids.

We didn’t really know what was involved the first time around. It was quicker with the next two, as we knew more about the process.

ABRs are thorough tests of various sounds at different levels, which last two to three hours per session. They also have to be asleep during the process. That’s one reason why it’s done so young, because they sleep for longer. It took three or four ABRs for Brynn.

With the next two, we were already in the system and I knew the audiologist. Theo had his newborn screening at a week old and he failed. They said it could be fluid in the ears but I had a suspicion there was more to it. They did another a week later and he failed again. I asked to go straight to audiology and have an ABR, due to his sister’s history, even though they wanted to do another. His hearing loss assessment was moderate to severe—worse than Brynn’s, which was mild to moderate. He was 6-8 weeks when he got his first hearing aids because I had pushed things forward a bit.

Hadley, our youngest, was also about a week old when she failed her first newborn test. They wanted to do another one and I said no straight off. By that time I knew the audiology receptionist well, told her that my daughter’s referral would be coming through and she was able to book an ABR straight away. Hadley was about 6 weeks old when she got her hearing aids. I pushed, particularly with Hadley, because I knew the younger we could do it the better.

What was the initial advice from your healthcare providers about using NZSL?

Emily: When you get a hearing loss diagnosis, you get a support person who is an Advisor of the Deaf. When Brynn was almost a year old, our Advisor mentioned that there was an opportunity through First Signs New Zealand—a programme from 0-5 years old—to teach us sign language. It was a no-brainer for us, and six years later we’re still in the First Signs programme.

Although Brynn has graduated from it, the younger two are still in the system. Our First Signs teacher comes into our house once a month and on the alternating fortnight we have a zoom call.

When talking with someone who is completely deaf, you have no other option than to be visual. You get pushed in at the deep end. You can choose to have an interpreter but we chose not to—for full immersion and to learn the best that we could. If you’re fully immersed you have to swim.

Dylan: That’s what we needed. But I was still unsure. Then she invited us to the Christmas party, and that’s when things shifted for me.

It’s probably the best thing we ever did, throwing ourselves into an environment with a group of people who are in the same position: parents of deaf children who were hearing, and hearing family members who’d come to experience a Deaf community event.

Usually when you walk into a party, people just stand around with their drink, talking. But this party was so much more interactive—everything was on the ground because everyone has to use their hands. You are completely drawn in. That’s what started my real drive to learn sign language.

I found the best way to learn is through these face-to-face events because you’ve got no choice but to sign. Then you’ve got the people who can hear to help you on the spot. After a while, you do get a knack for it. Unfortunately, during COVID, a lot of those events stopped because they were close meet and greets. Before that, I’d get together with a group of fully deaf adults every second week or so. Now it’s maybe twice a year. Emily’s a lot better than me because she still goes to a deaf playgroup every week.

Have you learned any other languages? How does learning NZSL differ?

Emily: Yes, in college I learned French but I wasn’t very good at it, I think I’m doing better with NZSL!

I don’t use full NZSL as I don’t know full NZSL, so I do a bit of signed English, but just signing the keywords. We live in quite a visual world and I’m a visual learner anyway. I think kids often benefit from visual learning too. If you have ever seen deaf adults having a sign conversation, it’s really beautiful to watch because of everything that goes into it. It’s such an expressive language—total storytelling that draws you in.

Even our hearing daughter has picked up signing quickly. The younger two—because we had been learning sign language before they were born and were signing from the get-go—they picked it up really young. Our youngest daughter Hadley was signing from six months old. It just goes to show that their brains are sponges and if you feed them that information they do take it in.

What’s the best thing about learning NZSL?

Emily: For me, the best thing is bridging the gap in communication. Especially with babies. They can’t always tell you what they want, they can’t necessarily express themselves, but from a very young age babies can sign. Even just a simple sign that they want milk helps! We found it a lot easier with the younger two as we were able to bridge that communication gap from day one.

Dylan: The best thing about signing for me, is that I have the option of talking to my children verbally, or if they are far away, I can sign to them—as long as I have their attention! That’s such a positive. I love that if I’m frustrated with one of them in public, I can sign to them without raising my voice. Also if we’re say, in a restaurant, I can sign, ‘Do you want to go to the toilet?’ without shouting it across the table . But the most fulfilling thing—not with Hadley because she was too young—with Brynn and Theo, after their cochlear implant surgeries, when there was no sound for about 3 days, straightaway they transitioned into sign. Those days were hard, but we could still communicate and that was great.

Could you describe the process of getting cochlear implants and the differences you saw when they did?

Emily: Our youngest was only 9 months when she got her implants, so it’s really hard to say with her what the difference was post-implant. Theo got them at about 18 months and with him, I noticed that the sounds he was producing changed really quickly. Brynn was 3 when she got implanted, which is quite late. She probably struggled the most with the days without hearing after the operation. But as soon as she was switched on it was like, ‘I’m back!’.

She didn’t really explain the sounds. We thought that we would get a really big reaction, like you see in the videos of other kids getting hearing aids, but ours didn’t do that. Instead, it was just her saying, ‘Yes, I can hear you!’ that was exciting for us. Then, when we went outside, Theo saying, ‘I can hear a plane!’ All these little things he didn’t hear before that he was excited to discover. It was a gradual introduction to all these new sounds, and great that they had access to them.

Dylan: Yes, it’s not until you get home and relax in your own environment that you really notice it. When we walked outside after they were turned on, I remember Brynn said, ‘Is that a bird?’ The cochlear was picking up the backgrounds noises she hadn’t heard before.

I think the big one with Theo was talking to him when he wasn’t facing me: suddenly he knew where the sound was coming from and would turn around immediately. With the hearing aids they would hear a noise, but not really know whether it was directed at them. So they’d just keep doing what they were doing.

I think the eureka moment for us was when we said their names the first couple of times—when we weren’t looking at them and they weren’t looking at us—and they instantly responded to their names.

Emily: They have been implanted for about 3 years now, and in the first couple of months, it’s a real adjustment process. They can’t suddenly switch on to full noise. It’s a slow process of tuning up so they are eased into it and it isn’t too overwhelming. Then they have appointments every six months for fine adjustments.

Hearing through a cochlear implant is very different from natural hearing, in terms of the amount of tones they can hear. It would be hard to be an amazing musician, because they simply will not hear differences in certain sounds. Access to sound and the broadest stimuli was the most important thing to us.

What support do they get in everyday life?

Emily: We chose to put them into a local school. Luckily we live there is a lot of support in New Zealand. We have the Advisor of the Deaf and she applied for a Teacher of the Deaf for Brynn. With her cleft palate, she has had two-fold barriers to her speech.

Her speech was unintelligible when she started school because she had had a few mouth surgeries and needed speech-language therapy. Which is another reason why we went for the implants for her, because we knew she would have access to the best sound possible versus hearing aids. From there, it was whether she was able to produce sound.

We applied for ‘very high needs’ ORS (Ongoing Resource System) funding, and she gets the maximum amount of support from teacher aids and her Teacher of the Deaf, in school. She really needed that extra support and research shows that if they get it when they’re younger really helps when they are older. We’re very grateful for that.

My son has the same resource – a Teacher of the Deaf or RTD and she works with him at Kindy.

For our youngest daughter, we haven’t tried to apply yet as they are at the same Kindy and she tags into her brother’s sessions. But I don’t think she’ll qualify. She got implanted younger and you wouldn’t know that she is deaf. She talks and listens well.

How did you feel when Brynn started school?

Emily: When Ricky, my oldest child went off to school I was more excited than anything! Then when Brynn started, I was really nervous. I wasn’t sure how she was going to do in that environment. Would she get lost in the system? But she’s absolutely thrived and loves it there. She’s almost famous—we’ll be walking out of the gates and older are kids saying, ‘Hi Brynn’, or ‘Bye Brynn’. I think she is the only one at the school with cochlear implants and makes it known that she is special!

I don’t have too many worries about our younger two starting now. Especially because they’ve got their older sisters there to back them up. I guess I’m more excited, the fear has gone. I was worried about children teasing. It helped that her teacher explained at the start about the devices and what they did for her.

Dylan: One worry was swimming classes—that the cochlears wouldn’t work and she would get upset. We had a couple of times at Kindy where they came off and the teachers (no fault of theirs) put them back on the wrong way round. I went in, to make sure they were working, and Brynn was hiding under a table crying. That was a fear—that something like that would happen.

Luckily it didn’t. She’s thrived at school. But my biggest worry had nothing to do with the hearing, it was her speech and people bullying her about it. Turns out she’s actually the kid everyone wants to be friends with. She’s super confident anyway, perhaps because she had to go to so many hospitals, meet all these different doctors, be on wards with all these different kids and introduce herself all the time. And now she’s got a boyfriend!

What are your hopes for the future?

Emily: That the children are comfortable with who they are, and confident. We are involved with the deaf community—we go to a bilingual playgroup and try to go to every event that the Deaf community puts on—so they are around other children and adults who are deaf and signing. There was one point when Brynn said, ‘I don’t want to wear cochlears, I just want to be deaf,’ and I said, ‘That’s fine’. If they don’t want to wear their devices and they just want to sign, that’s okay. It’s why we learned to sign—to support them in whichever way they prefer to communicate.

I just want them to know they are capable of doing what anyone else can do. They might have to do things slightly differently but they can still achieve. They are already bilingual! Brynn has been teaching her class sign language so all those kids have benefitted as well.

Dylan: The main thing is that they can try whatever they want, and not feel limited by their cochlears, or completely reliant on them. If they want to ditch the devices and be fully deaf, then I hope they do and they don’t just hang onto them to make everyone else’s life easier. Emily and I are on the same page. No matter what they want to do, we’ll do everything we can to support them.

We just hope that they will stand up for themselves. If people are staring, we want them to be aware that it’s probably because they don’t understand what the devices are; when someone comes up and asks what it is, they want to learn, it’s not rude. Or if people are staring, for our children to say, ‘Do you want to know what it is?’ Confident in who they are, because they’re going be like this for the rest of their lives—and confident in helping others to accept them as they are.

In three words, what does NZSL mean to you?

Emily: Communication for everyone.
Dylan: It’s about connection.

If you are keen to learn NZSL, check out First Signs or NZSL4U

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