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Griffin’s twin needs

Photo: Griffin's parents have had to navigate his different medical needs.

When life feels like a blur of medical appointments for Griffin, mum Clarissa makes sure his deafness is taken as seriously as his Down’s syndrome.

Already a mum of five, Clarissa had a difficult pregnancy with her now three-year-old twin boys, Griffin and Phoenix. “I had quite a traumatic pregnancy and birth because we knew there were lots of problems and they were twins as well,” explains Clarissa. “The whole pregnancy we had to have lots of scans because there were new problems being flagged up at every appointment. But all they could really say was that there was an abnormality with one baby. We could have had invasive tests done and had a definitive answer, but we decided it didn’t matter either way. He was going to be who he is."

During the first month and a half of Griffin’s life, which was spent in hospital, his Down’s syndrome was confirmed and he was referred on after his newborn hearing screening. “There wasn’t really much support for his deafness in hospital. We weren’t given any leaflets or anything,” remembers Clarissa. “All we were told was that, as he didn’t pass his newborn screening and once he was released from the hospital, he’d be passed over to Audiology to confirm the deafness. We were also put in touch with a Portage Worker [a professional who visits children at home to help them develop skills] and Teacher of the Deaf. That was lovely. They came round and got to know Griffin really well.”

Griffin was confirmed to be severely deaf by his audiologist when he was three months old. “His audiologist was absolutely fantastic from the word go. They explained everything really clearly but it was still a big shock. On top of everything else, this was something we hadn’t thought about in any way, shape or form,” explains Clarissa. “We think he’s got severe hearing loss in both ears but they can’t do all the audiological tests properly at the moment. It’s caused by his Down’s syndrome, because his different genetic make-up causes smaller ear canals.

“Navigating his different medical needs has been a massive part of our life since he was born. He’s had a lot of respiratory problems and we’ve been in and out of hospital over the winters. There’s loads of different medical appointments for everything, so it does feel like a juggling act at the best of times. But it’s just part of life now. As crazy as it is, you get used to it.”

Clarissa finds that when it comes to interacting with the various medical professionals Griffin comes into contact with, it can be a double-edged sword. “We’ve found there’s a lot of doctors who are really quite interested in Griffin because they haven’t seen children with Down’s syndrome and deafness, even though it’s quite common,” says Clarissa. “There’s been quite a few that want to get my take on things. It’s nice to know that even I can sometimes have more information than the doctors! As a general rule, most people understand that his Down’s syndrome makes him who he is, but his deafness does get pushed to the side. I don’t think people quite realise how much it impacts him. There’s so much involved in it, it’s a whole third of his condition I’d say.”

With lots of appointments, it can be a challenge to keep a toddler entertained. “He’s absolutely fascinated by books so having a couple under the buggy that you can pull out is a good thing,” says Clarissa. “It’s about finding those things he really enjoys so you can bring a little bit of fun to that appointment.”

Another big part of Griffin’s life so far has been his hearing aids. “He’s been wearing hearing aids since he was four months old. When he has them on, you can tell how much the world opens up to him,” explains Clarissa. “In the morning he’ll be quite quiet and reserved, then the second you put his hearing aids in, he usually smiles. It’s amazing.”

When deciding how the family were going to communicate with Griffin, Clarissa’s background as a teaching assistant and experience using Makaton with her daughter, Aurora (4), led them to use a combination of spoken language and signs. “A lot of his communication is speaking and listening but I do use a lot of signs with him and have been to lots of baby sign classes,” says Clarissa. “He absolutely loves trying to sign songs, but he’s only just starting to sign and make basic baby sounds.

“We attended the National Deaf Children’s Society’s baby sign events and they’re brilliant. There, I also got to speak to other parents who are at different stages of their journey. Now the whole family is learning some signs, including Griffin’s hearing twin Phoenix and even my teenagers! It means so much to Griffin if someone goes up to him and signs, you can see him staring intently at their hands. You’ve made such a special connection with him.

“My advice to other parents is to do what feels good and what will work for you. But if you give your child the option, you might find that the communication route you want them to take, might not be the route that’s best for them. Give them all the options, they’re sponges at that age. Even if they’re not talking or signing back to you yet, one day they might and it’ll feel amazing.”