Cork mum: Life as a carer for my three autistic boys is exhausting

This week marks Carers Week, from June 10 to 16. CHRIS DUNNE spoke to one of Ireland’s 370,000 family carers — Cobh mum of triplets, Avlyn McKeown, whose boys were diagnosed with autism and intellectual disability
Cork mum: Life as a carer for my three autistic boys is exhausting
Autistic triplets Alex, Kyle and Rian McKeown with their mother AvlynPicture: Eddie O'Hare

WHEN school’s out, the alarm clock is off, and the sun shines, most mums everywhere say ‘bring it on!’

But for Avlyn McKeown, a Cobh mother of triplets with autism and intellectual disability, the daily grind of rigid routines, terrible melt-downs, irrational fears and restricted diets never changes — not even on a beautiful summer bank holiday weekend. It just continues.

“For me, school holidays are like an incarceration. Trying to get back into routine after school holidays is a nightmare,” says Avlyn, 49, who was not expecting to have triplets nine years ago when her third attempt to have a baby by IVF was successful.

The identical boys, Alex, Kyle, and Rian, are the apple of their mother’s eye.

At six months old, the three boys were diagnosed with autism and with intellectual disability.

“You do your grieving and you carry on,” says Avlyn, who is a single mother and the boys’ full-time carer.

The golden-haired lads are like three peas in a pod.

Rian is Avlyn’s ‘wild child’, Kyle, blowing me a kiss on meeting him, is a mummy’s boy, cuddly and affectionate. Alex is more of an introvert who is coming into his own, settling into his class at school.

“They are my whole world,” says Avlyn. “And I am their world.”

Sometimes, for a single mum who is a full-time carer, the world can be a lonely place.

“Being on my own and full-time carer to the boys, can be very isolating,” says Avlyn.

“It is very lonely. The loneliness is the hardest thing. You have no-one to bounce things off.”

The family are always a foursome.

“We don’t go anywhere, we don’t go visiting other people. It is too difficult for me to bring them out on my own,” says Avlyn.

“The boys have no concept of danger, no awareness of road safety. Sometimes I feel huge responsibility, being their mother and their full-time carer as well,” says Avlyn.

“It can be physically and mentally exhausting. I feel I’ve no identity of my own.”

She takes her important roles very seriously.

“All the cupboards and doors in the house are locked for safety,” says Avlyn.

She can never be too careful.

“One time Rian ran away from home,” add Avlyn.

“He was missing for 20 minutes. He ran across the main road. I still get the shivers when I think about that.”

No day is ever the same.

“Last Sunday week, I was faced with a bag of bird-seed scattered on the kitchen floor mixed with a bucket of water. Baking-soda and hand-cream was smeared on the windows of the playroom.”

Avlyn seldom relaxes.

“The boys rely on me to do everything for them; dressing them, showering them, brushing their hair, feeding them; it all takes forever,” says Avlyn.

“The boys’ food is blended and I have to spoon-feed each of them. Their diet is limited. Eating meals can be hit or miss.”

Avlyn has her daily routine down to a fine art.

“On a school day, three lunch-boxes, three school bags, all have to be got ready,” she says.

“Then there’s the grocery shopping, the housework, meal times. Then bedtime is a whole other routine! One of them can be up at all hours during the night.

“Two out of three of the lads are trained during the day. They all wear pull-ups at night-time.”

The daily grind seems never-ending?

“It’s like a conveyor belt!” says Avlyn.

She doesn’t ever get off that conveyor belt.

Already, she has dispensed snacks from the snack cupboard three times and dressed Rian twice, who has discarded his clothes in the garden.

“I don’t ever get to sit down for five minutes,” says Avlyn.

“I’m always being dragged about the place!

“Pals never call to me. I can never sit and chat with them — as you can see!”

She never knows what she might face.

“Rian has gone to the toilet on his bedroom floor. So you never know.”

Does she dread the mornings?

“You can gauge the general mood when you open the bedroom doors,” says Avlyn.

“You can pretty much tell how the day will pan out.

“I have to deal with pretty challenging behaviours like head-banging.”

Silence brings its own challenges.

“Silence is no good either!” says Avlyn, laughing.

The lads, who are non-verbal, love going to school, Scoil Aislinn, and they love Sinead, their support worker.

“The three of them love Sinead. It makes things easier.

“And at Scoil Aislinn, they are children first, it’s autism second.

“They skip out to the bus to school,” says Avlyn.

“I used to drive them to school, getting up at 6am every morning, if somebody wasn’t up and about earlier already!”

Reflecting back at the early days, it wasn’t easy when, with the triplets six months old, Avlyn’s aunt, who had six grandchildren, suspected the children, born 10 weeks premature, weren’t meeting their milestones.

Avlyn kept a close eye on her babies and raised her concerns with her public health nurse. The diagnosis of autism and intellectual disability was a double-whammy to the first-time mother who was adjusting to motherhood. “I did cry,” says Avlyn. “I did get a shock. I did ask, ‘why me? Why my babies? Then it was, why not me? I was heart-broken.

“You grieve for the childhood your child should have had. I ran away with myself worrying about the future.”

She was on her own.

“The strain of three kids on a marriage is not helpful!” says Avlyn.

“Now there were three kids with autism and intellectual disability.”

And they were hers.

“Of course I would change it,” says Avlyn. “I would prefer it if they didn’t have autism or intellectual disability; but it’s the road I have to travel. I brush myself off and I get on with it.”

Avlyn’s positive, ‘can do’ attitude takes her a long way in her role as full-time carer for her three beloved boys.

“I am a very strong, positive person,” she says.

“I am very capable. I have three gorgeous healthy, happy mischievous boys.

“They have their issues but we have great fun and I love them unconditionally.”

They all loved grandad unconditionally.

“My father died suddenly last September,” says Avlyn. “It’s like a huge void in our lives. The boys idolised him.”

Does Avlyn ever think what her life might have been like if she wasn’t a full-time carer to her three boys?

“I’d be working part-time with my dad,” she says.

“He had his own business and we worked together.”

Avlyn has home support for a couple of hours every day and the boys go to Le Cheile in the Cope Foundation for respite. “Then I have some ‘me’ time,” she says.

Does she have a social life?

“My social life is shopping in Aldi!” she says, laughing.

And she’s only human.

“I do take anti-depressants and I sneak the odd cigarette. I am a strong person, yes; but I am only human. I often think that the general public has no concept of what a full-time carer has to do every day.”

Being only human and being a caring, supportive mother whose whole life is looking after her three boys, Avlyn often ponders the future.

“I know my lads will never live independent lives. My goal is to keep them together. My aim and ambition is to get them to reach their full potential.”

The family can look forward to celebrating mum’s ‘special’ birthday together later this month.

“I love to bake,” says Avlyn. “It’s my therapy.”

Being surrounded by love is also therapy.

“My boys are everything to me,” says Avlyn.

“I idolise them.”

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