Thursday 22 March 2018

'You still have good days and bad. But with a dog, there's a calmness'

Ahead of World Autism Awareness Day, Joe O'Shea meets the families whose lives have changed after receiving an assistant dog
Canine companions: Maedbh Mc Carthy with guide dog Wyn and Instructor Eoin Slattery
Canine companions: Maedbh Mc Carthy with guide dog Wyn and Instructor Eoin Slattery
Aileen Foy, Client Liason Officer and Assistant Instructor with guide dog Ellis
Protection and security: Kim Burke with her son's assistance dog, Wilson

Joe O'Shea

If Karyn McCarthy had any doubts about the dog trained to protect her daughter Meadbh, they disappeared in the moment the family were involved in a car crash.

Wyn, a Labrador-cross trained to be an assistance dog, had already begun to make a huge difference for Meadbh, who is autistic, when he came into their lives.

But it was while Karyn was on a day-trip to Dublin, with her daughter and another child with autism, that Wyn instantly went into what the family now call "Superdog mode".

"It all happened very suddenly. But I remember that day thinking, thank God for Wyn," says Karyn.

Aileen Foy, Client Liason Officer and Assistant Instructor with guide dog Ellis
Aileen Foy, Client Liason Officer and Assistant Instructor with guide dog Ellis

"We were in a crash with another car. We were shocked, the other child was hysterical, but Wyn just went straight into action. She took over. She leapt across the seats to put her body across Meadbh to protect her. When we got out of the car, I was trying to work out what to do but Wyn just used her whole body to pin Meadbh to the wall. She was very clearly saying 'It's okay, you stay here. I am protecting you. This is my job'."

Meadbh, who is now 15, remembers the moment: "When the car hit us, Wyn jumped in the back to save me."

One of the big dangers, and constant fears, for families with autistic children is the sudden urge for them to "bolt" or take off without warning on a busy street or road. And a prime duty of an assistance dog is to act as an "anchor". Children can be tethered to a special harness fitted to the dog. Their canine companion is trained to be on constant guard, always looking to anchor, shepherd and protect.

April 2 is World Autism Awareness Day. And it will be celebrated at the HQ and training centre of Irish Guide Dogs in Cork, which has become, through over a decade of research and training, a world leading centre for assistance dogs for children with autism.

Many hundreds of dogs have been trained and placed with families nationwide caring for autistic children. Each dog can cost in the region of €40,000 to care for and train over a year-long programme. But working with no state funding and depending fully on donations and a strong fund-raising team, the Guide Dogs charity can only do so much.

"When we opened our online applications for assistance dogs in November, such was the rush from families, we had to close the list in under a half an hour," says David McCarthy, who is in charge of the programme.

Protection and security: Kim Burke with her son's assistance dog, Wilson
Protection and security: Kim Burke with her son's assistance dog, Wilson

"We believe we are only managing to place dogs with less than half of the families who need them. We have an incredible team and programme here and would love to do so much more. State funding would greatly help us to reach our goal of helping all these children and their families."

Before Wyn arrived into their lives, Meadbh's parents would be in constant worry about her suddenly disappearing and, because of the form of sensory autism that she has, becoming profoundly disorientated or panicked.

"If she ever let go of one of our hands, she would get distracted or lost very quickly. She would get very distressed and could have a panic attack," says Karyn.

"Getting Wyn changed all of that. She always has Wyn to stay with her, to calm her. If she went to walk away from us, or step out into traffic, Wyn would stop that.

"(There were) less meltdowns. There's something very calming about Wyn as a dog for Meadbh - but also for all of us a family.

"One of us would go out for a walk alone with the dog and we'd just have that lovely half hour break, being on our own, a bit of headspace. And when we would go out together, we would have the security of having Wyn there with us, always looking out for Meadbh, always providing that sense of security.

"It's hard to describe what it is like to have that, after years of having to be so vigilant, so worried that Meadbh would take off, run out into the road," she says.

Karyn adds: "Before Wyn, we had about six years where we didn't really have a good night's sleep. We had to have a weighted blanket for Meadbh to try and stop her getting up and just wandering while we slept.

"Wyn very quickly became that blanket. One of the first nights, she went to check on Meadbh, saw she was restless and she just hopped up on the bed, placed her body across her and Meadbh cuddled her. And that's how it works most nights now."

Kim and Billy Burke have had a very similar experience with their son Aaron (10), who is now on his second assistance dog, Wilson. The first, Gus, died of cancer after several years with the family, and they say they feel blessed that the team at Guide Dogs were able to provide a replacement.

Before the Burkes' first assistance dog arrived, they could never go out as a family together. One parent would always have to stay with Aaron while the other went out with his older brother, Shane.

"When Gus came along, it was amazing, we were able to go for walks together, go to the shops, take Aaron to matches with his older brother," says Kim.

"It's hard for people who don't know what living with autism is like, to understand what this means.

"The four of us could never do anything together. And when you have another child, it's very hard on them, to ask them to understand that you will have to spend so much of your time caring for their brother."

She adds: "That's the difference a dog like Wilson can make for the entire family. You will still have good days and bad. But with a dog, there's a calmness, a security. We had such faith in Gus and now in Wilson, we know Aaron will be safe and protected. And he loved Gus.

"After he died, Aaron would go down to lie on his bed every night, thinking he would come back. Now there's that bond with Wilson. It's protection and companionship, security."

Aileen Foy is one of the instructors at the training centre near Cork City. She had been working in banking over a decade ago, when she decided she needed a change in her life and started volunteering at the centre. Now she works mostly with families who are new to the programme, taking them through the training and experience they must gain to know how to live with and depend on an assistance dog.

"It's amazing the difference that the dogs can make and the work is so rewarding for all of us here," says Alieen.

"But it can be hard work for the families. And we are here to help them through those first months. Autism is so complex, every child is different, every family is different and every dog is different."

Labradors are considered the best dogs for the job, often crossed with other working breeds.

The puppies usually stay for a period with volunteer families to help with socialising, and they are trained, evaluated and tested before they are matched with a family. One parent is asked to spend a week living in the centre towards the end of the process, to undergo their own training and familiarisation.

The end result should be a long-term companion and carer who will never tire, never lose focus and always put their child above all else. And a family who can look forward to a calmer, safer, happier future.

Irish Independent

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