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Maia takes control

Photo: Navigating life as a teenager isn’t always easy, but, with the support of her family, Maia (15) is taking it all in her stride.

Navigating life as a teenager isn’t always easy, but, with the support of her family, Maia (15) is taking it all in her stride.

Born with Treacher Collins Syndrome and Microtia, a condition which results in the under-development of the outer ear, Maia (15) has always taken her moderate to severe hearing loss in her stride.

“Everyone says to me, ‘It must be so hard being deaf,’ and it does have its challenges, but I think, because it’s part of my routine and part of my life, sometimes I even forget I’m deaf! I’m so used to changing the batteries in the bone anchored hearing aids I wear, taking them off when I have a shower – it’s just part of me and I don’t feel any different,” Maia explains.

Wearing her hearing technology has allowed Maia to feel confident enough to begin to increase her independence. She often travels by herself now and makes her own plans.

“As a teenager you get more independent, travelling by yourself, which I’ve done a couple of times, and also arranging to meet up with friends.”

But it’s not just her social life that’s changed; Maia takes more control of her medical appointments now too. “At a certain age, Mum started saying to me, ‘OK you can do the talking now.’ So when I go up to Great Ormond Street Hospital, I do it all myself now. Sometimes Mum helps, but I answer most of the questions.”

Maia’s mum Josie explains how impressed she’s been with Maia’s growing confidence and her willingness to take control. “It’s really shifted in recent years. At the hospital, they’re very mindful that the child is involved in consent issues. Like with everything new, it’s slow. When they first started doing things through Maia, the appointments were almost double the length, but it was lovely because she’d have her time to ask questions.

“Now we all get a chance to ask and be listened to, but the focus is on Maia, even the administrative stuff. They focus on the child first and you’re secondary, which is great – my husband and I really appreciate that!”

While Maia is confident in her own independence, she’s been limited in what she’s been able to do for the past year with restrictions related to the pandemic. One major change has been the introduction of face masks into daily life. “When the laws on face masks first came into place, it was really hard,” says Maia. “When we were in the shops, I’d just drift off. I wasn’t really concentrating because I couldn’t hear what others were saying.

“It’s made me realise how much I rely on lip-reading and facial expressions. They help me understand the context of what someone is saying.”

Luckily for Maia this is something her younger sister Annabel (12), who is hearing, can help her with when they’re out and about together. “Annabel is always happy to step in and help Maia with any communication or mask issues,” Josie explains. “The girls are great at supporting each other when they do things without us. Together, they’re good company for each other and more confident in their growing independence.”

Maia is more than happy to share her own feelings on being a big sister too – both the good and the bad! “You get to offer a lot of advice which is quite a lot of fun,” Maia says. “We gossip a lot! It’s nice because you can always talk to each other. You understand each other.

“The bad thing is that you’re the first one to do stuff, you’re the first one to go to secondary school and then you have to tell them about it when they go. So it’s a bit scary, but it’s alright!”

Josie adds: “They’re very different to each other but also really similar in their interests and outlook and what they enjoy doing. That makes a lot of things quite easy but their experiences are so different.”

With a lot of learning now being done online or on laptops, Josie and Maia have spoken about how to take more precautions to make sure Maia stays safe online. “I do the basics,” says Maia. “I don’t talk to anyone I don’t know on social media. I block people who ask to follow me or send me weird messages and I make sure I’m surrounded by my friends.”

“Maia is experienced and grown-up enough that we let her manage it herself,” Josie adds. “But we talk about it a lot. When she first started using social media, I didn’t know about Instagram, it was totally unfamiliar. So to get myself aware because it was all so new, I got my own account to see how it worked.”

As an independent deaf teenager, Maia has plenty of advice for other young deaf people growing up in these challenging times. “Keep going,” she says. “You’re doing really well as a deaf person. I understand it can be challenging but you’ll get through it.”

Josie has some thoughts to offer other parents of deaf children too. “Sometimes it can be overwhelming and sometimes when you see your child with lots of kids who don’t have similar challenges, it can catch you,” Josie explains.

“Try taking a bite-size chunk approach and not worrying too much about the future. Just take it one step at a time and enjoy it all, because every stage has wonderful gifts. Surround yourself with the right support, ask for help and try to enjoy life!”