IF YOU’RE a carer, do something that makes you happy and give yourself a break. That’s the simple and succinct advice from someone who has been at the coalface of caring for most of her adult life and now helps families of special needs children in her voluntary role as a psychotherapist.
Charlene McAleer (36), from Co Tyrone, is mum to Declan (10) and Ronan (8). Her eldest son has profound learning difficulties and autism, which he developed after becoming ill as a toddler.
Before that, he was a normal two-and-a-half-year-old, captured on video talking about his excitement at the imminent arrival of his new brother. He is now non-verbal, has severe behavioural issues, including self-harming, and requires constant care.
He also barely sleeps, which means that a ‘night’s sleep’ for his mum can mean just two or three hours, or sometimes even less.
However, Charlene “loves” her life and part of the key to her contentment, she believes, is acceptance and self-care. She has also pursued her passion of learning everything she can about autism in order to help families like her own.
The upshot is that the girl who “hated school” has completed a degree in counselling and psychotherapy and plans to do a master’s in September.
However, the journey to where she is now has not been easy, requiring her to cope not just with the complex needs of her son but her own health difficulties – chronic fatigue and fibromyalgia brought on by carer burnout, a well-documented result of round-the-clock work and responsibility.
“There was a time when Declan was around five, when his behaviour was getting worse, and I was sick and completely exhausted,” she says. “I was so consumed with looking after him that I'd forget there was a world outside my door.”
It was at this point that Charlene, who lives near Coagh, decided she needed to do something.
“I was reaching out to find what support was available for our family, and to give Declan as many opportunities as possible,” she explains. “I found there was very little and anything there was, was run by other parents. I sat down with Hugh, their daddy, one night and said, ‘I want to do something. We cannot be forgotten’.”
Hugh concentrated on what he knew best and began running quizzes, raising thousands of pounds for Sperrinview Special School in Dungannon which Declan attends. Charlene, meanwhile, threw herself into reading everything she could find on psychology and behaviouralism, speaking to experts, professionals, schools and anyone involved with the condition.
Before having her children, Charlene was a full-time carer for her dad, who has since passed away, and her mum.
“When I saw there was a gap, that there was no help for us, I thought, well I have these skills, I can help other carers,” she explains.
In 2015, after her second son was also diagnosed with autism – albeit a much less severe type than his brother – Charlene decided to embark on her degree course, joking that she had plenty of time for assignments as “nobody in our house sleeps”.
“As I was learning more and more, I began to see people and things differently. I recognised there were people who needed to reach out and couldn’t,” she says.
That, in turn, inspired her to join a local support group, Sunflower Support, for families of children and adults with additional needs.
As well as providing free counselling services, Charlene is also one of the key volunteers, organising outings and treats for the children and their parents.
“Carers are often so exhausted that they don’t realise the potential to go and do things that make them happy,” she says.
“Working with other families, I see it all the time. It is only when people hit crisis point, that they ask for support.
“I want carers to realise that they can do whatever they want. Whatever makes you happy, that is the key to finding hope and hope is what keeps us all going.”
For Charlene, it’s the simple things like being outside in her garden, pottering in the greenhouse, books and learning, and helping other parents.
“If you do things for yourself, whether it’s running or yoga or just meeting a friend for a coffee, then when you come back to being a carer, you are recharged,” she adds.
“You are happier and that makes the whole house happier. There is no amount of money that will ever take away the heartache that is within our home. Nothing will change it, so if you can’t change something, you have to change the way you think about it. As I see it, this is us, warts and all.
“The best thing we can do is enjoy this great adventure together. I wish things were easier for Declan, He does struggle an awful lot. I will always have a broken heart. Declan is my absolute world. But he has given me an introduction to medicine and science, which I would probably never had had more than a fleeting interest in.
“I feel very fortunate to have the opportunities I have had and to get to the mindset I have today.”
Although Declan’s condition is too severe to allow him to accompany his mum to the support group, he does attend a specialist centre in Whitehead one night twice a month which he loves and which provides much-needed respite for his parents.
Charlene, whose own health problems are mainly under control thanks to medication but who is still prone to suffer sudden flare-ups, is passionate about campaigning for such a facility in the Mid Ulster area.
“For someone like Declan, the only two specialist centres are Rainbow Lodge in Ballymena or Whitehaven near Carrickfergus,” she says. “I have a huge garden down the back and I have said to so many MLAs ‘You can have my garden for free. Build a respite centre’ but I have had no takers so far.
“There so many families crying out for it. If I had any money, that’s what I would do. We want something close to home, for our children, because it makes them so happy.”
The respite also allows Charlene and Hugh to spend some individual time with Ronan – simple things that other families take for granted, like a trip to the cinema or McDonald’s or just having a chat.
Charlene plans to go to Queen’s University in September to do a master’s degree in Psychological Sciences, and says she “can’t wait” for this next “new adventure”.
A modest, down-to-earth person, who feels uncomfortable in the limelight, Charlene believes it is important to tell her story, to highlight the realities facing carers and the importance for them to look after themselves and avail of support.
“Please give yourself a break. Come and find us at our support group or find one close to where you live,” she adds.
