Kyra Mania is no ordinary teenager. Sister to four siblings, three of them severely autistic, the 18-year-old has been a huge support to her parents since she was just seven years of age.
“Every morning I’d get up and help Mam dress the kids for school, and get them on the bus. I’d help out at home, fetching wipes, getting clothes, getting them dressed. All that type of stuff, you know?” she says of her daily routine.
Kyra’s younger siblings Luca (12) and twins Max and Emmy (6) all have severe autism, with intellectual disability. They are also non-verbal.
Ten-year old brother Ryli also helps parents Mandie and Guido with the daily struggles they face caring for three children with special needs. “There are huge challenges,” says Mandie. “The three of them can’t stand the noise of each other. They make a lot of loud vocalisms, so they have to be separated at all times.”
“We’re trying to get the twins to be together for even just an hour in the evening. But Max can hurt Emmy, so you have to be very careful. Because he has ADHD as well, and he is just so hyperactive.”
The 42-year-old says learning the twins were autistic like Luca came as a huge shock, and altered the family dynamic dramatically.
Living in Castlerea, Co Roscommon, it is rare that she and husband Guido get to spend one-on-one time with Kyra and Ryli nowadays, something that causes them a great deal of parental guilt, she says. Two years ago, her husband was also forced to give up his job as an IT engineer to help care for the children. "I don't think we'd actually survive without Kyra and Ryli's help," she says. "Which is unfortunate, because they're so young and it's very unfair on them. But they're so good, and very rarely give out.
"When Kyra was doing her Junior Cert, it was a nightmare. Because she couldn't study. We have two kids that don't sleep well, Luca and Emmy. They can wake at 3 o'clock in the morning and they'd be quite loud and screaming, because they're both hypersensitive to each other."
Although Kyra managed to get through the exams, she left school before sitting her Leaving Certificate due to problems with anxiety.
She’s now doing a National Learning Network course to access college. “The people there know my situation and they’re very understanding about it,” she says. “They’re very nice to me and supportive.”
Is it hard for her to relate to other teenagers because of her experiences? “That’s one of the reasons school didn’t work well for me,” she says. “Because I was older than my years.”
“When you’re at secondary school, it’s very difficult,” says Mandie. “It’s only now really that Kyra’s found her own personality, her own friends. She had to deal with so much other stuff when she was younger that she just didn’t find her place.”
‘One in a million’
Both parents are proud of their daughter’s kind and compassionate nature. “Kyra is one in a million, to be honest,” says her mother. “Her whole outlook on life and personality is so loving and giving. She’s a very caring person outside of our house as well. She volunteers with the Special Olympics, and as a youth club leader. She’s very obviously gifted with special needs children, and kids love her in general.”
The 18-year-old says she’d like to work with kids or adults with special needs in the future. She says that her family unit share a close bond because of what they face together: “We laugh about everything. If we didn’t laugh, we’d be screwed.”
A former Young Carer of the Year, Sean Collins (15) lives in Smithboro, Co Monaghan, with his family.
His sister Kathryn (17) has a rare chromosomal condition called SAT B2. She has severe intellectual disabilities, is non-verbal and needs help with every aspect of day-to-day life.
Sean has helped his mother Annette to care for his sister for as long as he can remember, while dad Donal worked full-time as a local GP. “When Kathryn was at home, I was the back-up,” he says. “Mum was her primary carer, but if she ever needed a break or there was something to be done in the background, I’d always take over.”
“From an early age, he would’ve been helping out very naturally,” explains Annette. “Kathryn loves people and interacting, and she loves to be on the move. So I’d ask him to take her for a wee walk around the house, or he’d go out on his bike with her. As he has grown, that role has grown too. He’s like her big brother now.”
In 2016, the family was dealt a serious blow when Annette was diagnosed with cancer for a second time. Since then, they’ve had to make the difficult decision to opt for residential care for Kathryn four days a week.
However, Sean still helps out as much as he can to make life easier for his mother, who now has very limited mobility, and to care for his sister.
He was recently surprised when a teacher suggested pupils start learning to cook: “The teacher was going, ‘Right now lads, you should be starting to learn how to cook and all that’. And I’m sitting there going, ‘I already do’,” he says.
‘A few tough times’
“The school is great. They are very supportive of me, because I’ve gone through a few tough times with my family. You just kind of grow up doing jobs around the house and stuff like that. That’s one of the things about young carers; you don’t really think of it as caring until someone outside the house comes and tells you.”
Recently, Sean has started to take Kathryn to weekly Special Olympics training. He also volunteers at larger Special Olympics tournaments around the province each month, something he really enjoys. “With the tournaments, I go along and manage the teams, set them up, make sure none of the kits get lost, stuff like that . . . Plus things can get a bit heated in the moment, so you have to make sure everyone stays calm,” he laughs.
Although he might have a lot to contend with, Sean is upbeat and says his experiences as a carer have made him a more confident and empathetic person. "I've done quite a lot of public speaking with Family Carers Ireland, " he says. "When I have to give talks or presentations in class, I'm not a bit worried, whereas other lads might be. I am a lot more confident for it, definitely."
“We are very proud of him,” says Annette. “It’s great he’s so mature, but in some ways you’d like him to feel less responsible.”
She says his bond with his sister is extremely strong, and that he has always accepted her the way she is. “He doesn’t realise what a help it is that he knows her needs, her likes, her wants. He’ll be able to fight for her now and in the future. I know he’ll always look out for her best interests, I’ve no hesitation about that.”
