‘Having a son who is severely autistic meant we couldn’t go on a normal trip ... until now that is’
Her son’s diagnosis of a severe form of autism was life changing for Londonderry mum Fiona Burns-Kirby and her family. But now the unveiling of a bespoke autism-friendly room at the Roe Park Resort in Limavady has been a revelation, as she tells Leona O’N
ALondonderry mother says dealing with her eldest child’s autism diagnosis “felt like grief that crushed her heart”, and that she still, five years later, takes it just one day at a time. IT workers Fiona Burns-Kirby (40), from the city’s Waterside, and her husband Kevin have three boys: Joe (7), Tony (5) and little Eoghan (10 months). Joe was diagnosed with severe autism at two years old. Fiona says she knew early on that her toddler had certain traits that would lend themselves to an autism diagnosis, but that it was still a shock that led to a particularly dark period in the family’s life. She says she still finds it hard to realise that her son might never call her “Mum”.
“It was whenever Joe was around 13 months old that I started noticing l ittle things that he should have been doing that he wasn’t doing; like saying ‘mama’ or ‘dada’ or clapping his hands, waving or responding to his name,” she explains.
“By the time he was one-anda-half years old, I knew for defi- nite. Others were saying that he’d come on and would start talking. But I knew. I have a cousin who is severely autistic and I was familiar with the condition and was able to spot Joe early.
“He was diagnosed when he was two years old. That is early, but I think it was because he is severely autistic, he has classic autism. He is non-verbal.”
Fiona says the diagnosis hit the family hard.
“It was almost like grieving when we found out Joe was autistic. It was a really dark period in our lives and it took a few years to come back from that,” she says.
“It was realising that our little child, who we were so excited about because he was our first, was different, that I’m probably never going to have a conversation with him. I’m never going to see him driving a car. It is like grieving.
“I know that I am going to be caring for him for the rest of my life. He will never be able to live independently. He is never going to have a friend, just things like that, that you take for granted that your children are going to do. Obviously that wouldn’t apply to all autistic children, because some of them are capable of having jobs, friends and living independently, but, with Joe having classic autism, that is his situation. It was a massive shock. It was a very tough thing.”
But Fiona says she copes by not putting too many expectations on herself, her family or situations, and not thinking too far ahead into the future.
“It’s just stuff that I don’ t think about now on a day-to-day basis,” she explains. “That is how I am coping with it. I just concentrate on the now and I don’t think about the bigger picture or the future any more. That is how I cope with it mentally.
“Every milestone is celebrated in an epic way. Joe says single words. He would just say ‘drink’, or ‘iPad’ or ‘sweets’ to tell you what he wants. He has never actually called me Mammy. Joe has only recently started to follow instructions in the past year. If I ask him to come out to put his shoes on he would come out and sit on the stairs. It’s those little milestones that are celebrated massively. You just feel over the moon that he is able to do that. Because we had to accept that he wasn’t going to be able to do any of those things. We had to accept that it could possibly be zero. Then everything that he does do, we are so excited about it.
“Joe is at Ardnashee Special School here in the city. Every morning I wave him off on the school bus and he has never once waved back at me. But I know that some day he will wave back and I’m excited about that already. That will be a brilliant day.
“Our second boy, Tony, is at school now. Every morning he skips in and says ‘ bye, bye Mammy, I love you’ and he runs off to play with his friends. I could cry with happiness every morning when I see him running in.
“I know that most parents take that almost for granted, they nearly look at the school run as a pain. But to me I think that is fantastic. And it’s because of Joe that I appreciate all those things with Tony. That I know how lucky we are that he is doing those things.”
Fiona says having an autistic child has completely altered her life, but that striving to be “normal” is not something they aspire to these days, rather to “just be happy”.
“I did a lot of travelling in my 20s,” she recalls. “I had a very adventurous and exciting life. Now our life is severely restricted. There are very few places that we can take Joe to. We can’t take him to the cinema, or soft play places, we can’t take him to parks when they are busy. We would take Joe to popular parks on dull or grey days. On really sunny, lovely days or school holidays we go to places that we know will be quiet. We have a completely alternative family life to what most people have.
“But the way my husband and I look at it is that just because it is not a normal life it doesn’t mean it can’t be a happy life. I think that we had to go through the stage that we were mourning the fact that we can’t do all those things as a family, and your heart completely breaks.
“But then you have to rebuild your heart again and see what we can do. You have to give up wishing for a normal life and just accept it. We don’t have a normal life, we are not a normal family, but let’s see what we can do that can also be good.”
And one of these “good things” was a recent trip to the Roe Park
❝ Every milestone is celebrated in an epic way ... you just feel over the moon he is able to do it
Resort in Limavady, which has been unveiled as Northern Ireland’s first ‘Autism Friendly Hotel’ following an endorsement from Assistance Dogs NI.
The hotel has opened a special autism-friendly room and staff have undergone training to help them interact with autistic guests and those with other additional needs.
Fiona says it was refreshing to spend a special family break away in an establishment that “understood” her family.
“We hadn’t been away in a few years,” she says. “The last time we went away we stayed for a couple of nights in Bundoran with just Joe and Tony. We are always afraid to go too far in case Joe can’t handle it and we have to come home.
“The four of us were staying in the same room. Joe, like most autistic children, has sleeping patterns that would be extremely erratic. Joe woke up at 2am and that was him up for the day. He turned on the lights, moved around, the rest of us couldn’t sleep and he was getting frustrated that he was stuck in the room. My husband and I had to take turns walking him around the hotel in the middle of the night. It was really hard.
“There are so many specifications we’d need before we went away. For example, we couldn’t have a room where the windows could open. He would be out the window and away. We would have to have all the surfaces cleared, because he throws things and swipes things off in a playful way.
“When we looked at the Roe Park Hotel and they emailed us the specification list of things they did to make the room autism- friendly we were blown away. If they had asked us in advance about what we needed in a room, we wouldn’t have thought of half the stuff on their list, be- cause we might have thought it was expecting too much.
“The amount of effort they have gone to was amazing. They have obviously received brilliant advice. A thing about autism is that the symptoms, issues and challenges you face are different for everyone. No two autistic people face the same issues.
“They have covered every possible issue an autistic person could have. We couldn’t believe the options, even to the extent of having a choice of what material the bed clothes can come in. Because of the sensory issues, a lot of autistic people would have a problem with materials being too scratchy. They really have thought of everything.”
Fiona says the trip was great, with Joe especially enjoying the pool and walks in the forest. She adds: “We also had the option of eating in the room because Joe wouldn’t be able to handle a busy restaurant. But one morning we went down to the restaurant and they seated us in a little quiet area by ourselves. The staff were really aware and were so supportive. When we go places we often have to explain and apologise almost that Joe is autistic, but at the Roe Park we didn’t even need to say it because all the staff were aware and made allowances for us without us even having to ask.
“As an autism family, we found somewhere that understands us, where we don’t feel we have to keep apologising and explaining. They have thought of everything. I would definitely recommend the hotel to other families.”
For more information on the Roe Park Resort log on to www. roeparkresort.com