'I cried... you grieve for the childhood you expected for them' - Cork mother of triplets with autism
Published 27/04/2016 | 14:38
A Cork mum has described how she's working towards a positive future for her identical triplets who were born with autism and intellectual disabilities.
Avlyn McKeown explained how they were longed-for babies, born by IVF, and how she was shocked by the diagnosis.
"I cried. I always tell parents who are starting out on this journey that you grieve for the childhood you expected your children to have," she told The Ryan Tubridy Show on RTE Radio 1.
Her marriage broke down with the strain of raising three boys with such complex needs and Avlyn now bringing them up as a single mother - and she's determined to carve out a positive future for her family.
Her sons, Alex, Kyle and Rian will be six on May 6 and were diagnosed with autism three years ago.
"They're identical triplets and they have all been diagnosed with autisim," she said.
"I struggled to conceive and underwent IVF. As a result, three beautiful little boys were born.
"I sailed through my pregnancy. They were born just under 30 weeks and were healthy boys.
"I thought life is going to start from here, a hectic life obviously but I thought 'this was it', we'll make our plans for the future," she said.
As the boys progressed, a family member noticed that they weren't hitting milestones and pulled Avlyn aside to air her concerns.
"I didn't notice it myself to be honest. Raising three boys, my first children, was a daunting task. Sleep deprivation played a huge part. Looking back, I don't even know how I managed at the time.
"I didn't want to know anything about it. They'd been born 10 weeks early and a typically developing triplet might take 18 months to catch up to a 'normal', full-term baby. I put everything down to prematurity."
However, the seeds of doubt had been planted in her mind and soon afterwards alarm bells started to ring. Avlyn raised her concerns with a public health nurse who placed the boys in early intervention.
Soon after the boys were diagnosed with autism and an intellectual disability.
"I had suspected the diagnosis of autism but it was the intellectual disability that came as a shock," she said.
"The staff were very emotional when they broke the news. It's hard. We're the first set of triplets in Cork, and possibly Ireland, that have been diagnosed with autism."
Avlyn explained that her life would be very different without the support of Scoil Aislinn, a school in Cork that caters for children with autism and complex needs.
"The boys come home covered in make-up and smelling of perfume. The dedication and love that the staff show is just amazing," she said.
"They started in September but I can already see a change in them. Rian is my wild child, he would literally climb the walls. Kyle is a mummy's boy, he's very affectionate and cuddly. Alex is an introvert but since he's started school, particularly since Christmas, the difference in that child is amazing. He's so inquisitive. He is full of mischief and up to all sorts of divilment that he would never have engaged in previously.
"Rian has magnetic letters and is starting to spell out words that he sees in his environment or on TV. He spelled out the National Sculpture Centre because we pass by that building every day on the way to school. I didn't even notice that building had letters," said his immensely proud mum.
Despite being non-verbal, the boys can still manage to communicate with Avlyn.
"None of the boys have ever said 'mum' and that, for me, is the [one ] word that I want to hear their little voices say... but I'm not caught up in the vocal side of things. The boys are well able to communicate to me without spoken word," she explained.
Avlyn has been taking care of her children as a single mother since her marriage broke down.
"I feel that multiple births put a strain on marriage and when you have extra needs thrown in on top of that... you're just so focused on your children that the relationship suffers," she said.
Daily life can be challenging as the boys struggle to sleep - she jokes that she can survive on "one or two hours' sleep a night". They need help taking care of themselves. They know how to finger feed (breakfast is dry Cheerios and toast) and two out of three are toilet trained (she is currently working on training Alex) but "melt-downs" are a struggle.
"Melt-downs are not pretty. They completely shut down and you can't talk to them or reason with them. If you try to reassure them, they don't want you near them.
"When it happens I lay them in a beanbag so they can't hurt themselves or me. That's not a happy state and it can be quite disturbing at times. In school they're being taught to self-regulate so I'm trying that at home - you really do need to walk away when they're in that heightened state."
Avlyn's parents have moved into her home to help ease some of the strain and together they're working on creating a happy environment for the three boys but the Cobh mother said there are external issues that she wishes she could change.
"Gaining access to occupational therapies and associated services is hard. It's so expensive. Some sessions can cost about €75 an hour and if you're multiplying that by three... I just couldn't afford it.
"I also wish that there was more awareness and understanding of autism [in Ireland]. For example, if I'm out in a supermarket and one of the children has a meltdown, people aren't aware he has autism. They're looking at him thinking, 'what a pup', you know, they're so quick to judge.
Despite the enormous challenges she faces, Avlyn is determined to keep a positive outlook on life.
"At the end of the day if I'm going around with a cloud over my head or if I'm low or depressed, what good am I to my children?
"I'm a very positive person. My attitude is that I have three beautiful, happy, healthy little boys. They're physically perfect."