Belfast Telegraph

A carer's story: 'I am five miles from town, but it feels like you are 500 miles from anyone'

 

Olive Donnan with her son Cameron (11), who has severe autism
Olive Donnan with her son Cameron (11), who has severe autism

By Christopher Leebody

Olive Donnan (54) from Kilkeel is just one of more than 270,000 unpaid adult carers throughout Northern Ireland.

She cares for her 11-year-old son Cameron, the youngest of five children, who was diagnosed with severe autism in April 2011 when he was three-years-old.

Olive recalled the devastation that hit her family when the news came, as her previously happy and healthy child suffered what doctors explained to her was an acute and rapid form of "infantile regression".

She said: "This was an absolute shock. Cameron was not born with autism. He developed perfectly, was in a private creche and had met all his milestones. He was a cheeky monkey. Out of the five boys he looked like the quickest to develop.

"Over a period of three weeks I watched him nearly die in front of my eyes. Every day a part of him seemed to be going. He started whispering instead of talking. He didn't play with his toys or answer to his name anymore".

Olive and her husband Brian found their world turned upside down with the news. Having spent 10 years building up their own family business, Olive had to leave her position as a company director in order to care for Cameron on a full-time basis.

Taking on a role she had never envisaged, she said: "It was devastating. When I was growing up and careers teachers were talking to me, I never wanted to enter the teaching or caring profession. I was suddenly dropped into this.

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"Where does the carer line begin and a mother end? You have to suddenly wear different caps on all these roles: teacher, carer, therapist, researcher.

"It is overwhelming, what you have to do when you have a child with special needs."

Olive told of several of the darkest periods, when the impact of what had been put upon her seemed too much. She talked openly about the mental health struggles she has had to overcome, including at times contemplating the thought of taking her own life.

"At the start it is like a grieving process. It is like you have lost the hopes and dreams you had and start accepting the child you had now was not the one you had last week. I rang the Samaritans two or three times, just to have someone to talk to."

Olive recognised that talking to her husband openly about her struggles to cope during this time helped and she knows that if she is ever struggling at home, husband Brian is willing to step in and help.

They also took a self-funded trip to the USA where an autism programme taught them to see their child's condition as a positive.

Cameron has no set routine and Olive tried to put into words the stress and sense of being overwhelmed day and night that she can experience as a carer.

She said: "Cameron could get up and immediately have sensory overload - the world is too bright or loud. Imagine it is Christmas Eve, you are in a shopping centre and have 10 presents left to get and only an hour to shop. Your head is banging, and it is overwhelming. This can be your day, every day, when your child has autism".

Carers UK carried out a survey to mark Carers Week 2019, showing that one in three unpaid carers in Northern Ireland are "always or often lonely".

Olive recognised this in her own experience in caring for Cameron in an isolated community.

She said: "I live in the countryside in Kilkeel. I am literally five miles from the town, but it feels like you are 500 miles from anyone when you can't take your child into the town. I just live in my house. That is my world.

"I do everything online. When my internet goes down, which happens often as it is a rural community, you have literally no contact with the outside world.

"I am a social person. I love people. It has an awful impact on your mental health".

With being a wage down and the financial outlay of caring for a child with special needs alongside a normal family, the practical costs of day-to-day life are a struggle. The current carer's allowance is just under £67 a week and Olive said this doesn't go far enough.

She said: "Not only do you go down a wage, but your outgoings go up. All these therapists cost £40 to £50 an hour.

"When you have a child with severe autism, and they go into a meltdown - TVs can get broken; doors can get) broken. Once you see the words special needs, the price goes up."

Olive felt that there were no services in Kilkeel where mothers could talk about their struggles openly and without "being judged", so she and a friend set up Autism Support Kilkeel in May 2011. It has gone from supporting five families, to 30, bringing services previously 40 or 50 miles away, into the local community.

Having just received a £10,000 grant from the Big Lottery Fund, the future of the group has received a huge boost.

Olive says this will allow them to introduce 12 weeks of horse riding, music therapy, sailing and sensory play, making a real difference to the lives of those families.

Despite the daily challenges, Olive admits that having worked with her son every day for eight years, the bond with Cameron is "beautiful".

She added: "Other parents say, 'I would love it if my child looked at me the way Cameron looks at you'."

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