As part of World Autism Awareness Day, Praxis Care is shining a light on the challenges faced by families and the importance of accessible, compassionate care for children with autism.
Declan’s Story – A Journey of Support for Alex
“Praxis Care for me, and I’m not just saying this, has been life changing. It’s been life saving, because I didn’t realise how much damage I was doing to my mental health.”
The Challenges of Caring for a Child with Complex Needs
Declan’s journey as a father of a child with autism and complex care needs has been filled with trials and tribulations. His 15-year-old son, Alex, has a range of needs that make everyday life a delicate balancing act. Non-verbal and often unable to communicate his physical or emotional needs, Alex’s care requires constant vigilance. Declan and his wife, Jo-Anne, found themselves in a constant state of worry, unsure when Alex might be in pain, hungry, or anxious. “The biggest challenge for us has been his inability to communicate. When Alex is in pain or upset, he can’t tell us what’s wrong, and that uncertainty creates so much stress,” Declan says.
Life with Alex has meant adapting to an unpredictable world. One day, Alex might be calm and content; the next, he could be overwhelmed by something as simple as a change in routine or a sound that seems insignificant to others. The complexities of his needs often left Declan and his wife feeling isolated, unable to access the support they desperately needed. The constant worry and lack of time for themselves put a strain on their mental health. “I’d be on edge constantly, overthinking every situation, second-guessing myself, and wondering if I was doing enough for Alex. It was emotionally draining,” Declan explains.
A New Lease on Life for the Family
It was then that Declan and Jo-Anne decided to give respite care a try. Their first experience was a trial visit for just two hours. They were nervous, unsure how Alex would respond, but when they returned, they were met with a pleasant surprise. “When we first came back to pick him up, we were shocked. He was in good form, and it felt like he was comfortable and at ease. It gave us a huge sense of relief,” Declan says. Over time, they began to trust the staff at Praxis Care, and saw how their support enabled Alex to flourish in a structured and understanding environment.
“He started skipping into the building like it was his favourite place in the world! I’d never seen him so excited to be somewhere outside of home. He genuinely looked forward to his time there,” Declan recalls. “Our family calls the respite service Alex’s ‘happy house’”.
A Life-Changing Decision
With regular visits for Alex to respite care now in place, Declan and Jo-Anne now find themselves with much-needed time to relax and recharge. “We never realised how much damage was being done to our mental health until we started using respite care,” Declan reflects. “It’s given us a chance to breathe, to take care of ourselves, and to reconnect as a couple. We never thought we could take a proper break from caregiving, but now we can.”
“Praxis Care for me, and I’m not just saying this, has been life changing. It’s been life saving, because I didn’t realise how much damage I was doing to my mental health.”
Declan’s experience underscores the immense value of respite care for parents of children with complex needs. “It’s been a game-changer for us. The fact that Alex feels as comfortable there as he does at home is a huge testament to the compassionate care provided by Praxis Care,” he says.
Advice for Other Parents
“Don’t hesitate to ask for help,” Declan advises. “I know it can be hard to admit that you can’t do it all, but reaching out for support is crucial. It’s not a sign of failure—it’s a sign of strength. Taking care of your own well-being is just as important as taking care of your child. And when you find a service that works, don’t be afraid to trust them. It’s been life-changing for us, and I think it could be for others too.”
Fiona’s Story – Breaking Barriers for Isaac
“Our social life was non-existent before Praxis Care. We couldn’t go to restaurants, we were able to get a couple of nights here and there but they were very sporadic.”
The Challenges of Caring for a Child with Complex Needs
Fiona’s life as the mother of 13-year-old Isaac, who has a dual diagnosis of intellectual disability and autism, has often felt like a journey through uncharted waters. Isaac has always had difficulty with communication, and his condition means he can’t express his needs or discomforts in a way Fiona and her husband can easily understand. “When Isaac’s sick, we can’t tell until it’s too late. Unfortunately, this means he’s spent a lot of time in hospitals,” Fiona shares.
But Fiona and her husband remained committed to Isaac’s well-being, despite the personal and financial toll it took on their family. The cost of private specialists, additional treatments, and special accommodations only added to the burden. “We’ve spent years managing his care—hiring specialists, seeking private consultations, and paying for things that the public healthcare system doesn’t cover. It has been exhausting, both emotionally and financially,” Fiona says.
A New Beginning with Praxis Care
Everything began to change when Fiona’s social worker suggested they explore respite care through Praxis Care.The service has provided Fiona with the opportunity to take a step back and focus on her family’s needs without sacrificing Isaac’s care.
“Our social life was non-existent before Praxis Care. We couldn’t go to restaurants, we were able to get a couple of nights here and there but they were very sporadic. So really our lives have opened up since Isaac started going to Praxis Care. Our younger son definitely now has a better quality of life too because he gets to go to restaurants and hotels and do lots of nice little things that he was missing out on” she explains.
Isaac has also seen benefits from attending the service. One of the most remarkable improvements has been Isaac’s increasing ability to communicate his needs. “He’s now able to ask for things, which is something we didn’t think would happen. Before, he’d just point and get frustrated if we didn’t understand. Now he is asking for things like going back for another visit to Praxis Care!’” Fiona says with pride.
Advice for Other Parents
“It’s a marathon, not a sprint,” Fiona advises. “Be on the ball. When you get the diagnosis, get them down for a preschool placement as soon as possible, get them the best spot. Be ahead with the school placements. Find good services and work on their social skills as well. It’s never easy to bring Isaac to places, but we now bring him everywhere, and that is sheer determination. He’s out in the community all the time.”
Keavy’s Story – Empowering Cillian’s Independence
“The staff at Praxis Care have never had any issues with Cillian, says a lot. It means that they are incredibly well-trained and skilled at managing children like him who have sensory and communication challenges.”
The Challenges of Caring for a Child with Complex Needs
Keavy’s 14-year-old son, Cillian, has autism and a learning disability. From a young age, Cillian exhibited delayed speech and struggled with sensory processing, often becoming overwhelmed by the world around him.
Keavy and her family are committed to giving Cillian every opportunity to reach his full potential. But the world can be a challenging place for children with complex needs — and that impact is felt not just by the child, but by the entire family.
The Impact of Praxis Care
Keavy recalls how the family carefully approached Cillian’s transition into using the services of Praxis Care.
“We did it in a really gradual fashion. To be honest, we never in our lives thought that Cillian would stay away from us overnight. So we took it step by step: a half-day first, then a full day, and eventually one overnight. Now, he can manage two overnights in a row and actually looks forward to them — he loves finding out which staff are on duty, what room he’ll be in (they’re all themed — his favourite is the Jungle Room!), and what activities he might do.”
Since Cillian began attending Praxis Care’s respite service, Keavy has seen remarkable improvements in his behaviour and overall well-being. One of the most significant changes has been his growing independence.
“He’s now able to do things for himself that would have required a lot of prompting and support at home,” Keavy explains. “It’s the small things that have made the biggest difference — daily living skills, trying new foods (which used to be a huge hurdle for us). These are things most parents take for granted, and they’ve been transformational.”
“The staff at Praxis Care have never had any issues with Cillian, which says a lot,” Keavy adds. “It means they’re incredibly well-trained and skilled at supporting children like him, who have sensory and communication challenges. They adapt to his needs in ways that encourage his development.”
A Bright Future Ahead
Keavy feels hopeful about what lies ahead for her son.
“I know there will always be challenges, but I truly believe he can live as independently as possible. With the right support, there’s no limit to what he can achieve.”
But she’s also clear that more needs to be done.
“We need greater government investment in services for children like Cillian. There’s a massive shortage of skilled professionals — in care, psychology, and beyond. Once you’re in the system, the services can be brilliant, but for so many families, access simply isn’t there.”
Advice for Other Parents
“Just take it step by step,” Keavy says. “Your child is full of potential. Getting a diagnosis is very difficult, and there will be stages where things feel overwhelming — but there will also be times when your child makes massive progress.”
She also highlights the importance of seeking support from professionals and networks of other parents. “Take all the help you can get — from professionals, family, and networks of other parents. Every child is different, but sometimes the smallest piece of advice can make a world of difference.”