Crystal Swing singer Dervla O’Connor has spoken out about her son Paul’s diagnosis of severe non-verbal autism for the first time.
She and her husband Tim have decided to go public with their story as they are appalled at the lack of services available for their five-year-old son.
Dervla, from Cork had to quit Crystal Swing and permanently give up her career in order to be Paul’s full-time carer, RSVP Live reports
The singer described the challenges that come with looking after Paul in hopes to raise awareness of the issue surrounding the lack of services in Cork.
She also wants to represent other families who are going through the same situation.
Dervla told Neil Prendeville on Red FM: “He is the light of our lives and we absolutely adore him, but life with Paul is very difficult.
“At the moment myself and my husband are fighting a huge battle as parents to ensure that our son is getting the proper services that he needs. There really are no services as such a huge lack of school spaces [in Cork].
“There are special schools called units, attached to mainstream primary schools, which cater for autistic children. But unfortunately Paul is gone past that so what he will need is a special school.
“At the moment Paul is attending a pre-school unit, I have to say they are fantastic and his teacher is so kind, gentle and patient but Paul will need more going forward. It’s essential for him to get a place in a special school.”
Dervla says she, Tim and their other daughter Hannah struggle daily with looking after Paul and that they get “no support whatsoever”.
Everything in their home has been damaged, from smashed TV screens to pulled down curtain rails.
Paul chews on everything, including his sister Hannah’s toys, which presents another issue of a fear that he will accidentally eat something that is a choking hazard.
Dervla said: “I’m finding it increasingly difficult to look after him because he is non-verbal and cannot communicate his needs to us and he has a lot of frustration so he lashes out a lot, but it’s through no fault of his own.
“He has no fear because he has no understanding, he sees through the world completely different eyes.
“I’m his mother and carer, I do everything I possibly can for him but sometimes it’s hard to watch him 24/7.
“For someone who was out on the social scene for years, I’m now imprisoned in my home. Paul has regressed drastically and we are getting no support.”
Dervla and Tim are desperate for their son to get a place in a special school, but the singer explains that there are very few options in Cork as a lot of schools are either full or not accepting any applications.
“I feel nobody is listening. I’m begging on my knees everyday for help, support and services for my child,” she tearfully explained.
“I’m appalled by the way that we as a family are treated and I know I’m speaking on behalf of many families going through the same thing. Our government should be ashamed of themselves.”
Because of Paul’s autism, Dervla and her family cannot enjoy usual family activities, such as going on holidays, trips to the cinema, a day out at the park or going out for dinner.
As a full-time carer, Dervla is exhausted and constantly concerned about what will happen in the future if Paul cannot get access to the services that he needs.
She told Neil: “I sleep with one eye open all the time. My exhaustion, stress and anxiety will be lifted if I can get guarantee that my child will get the services he needs going forward.
Despite their daily struggles, Dervla, Tim and Hannah love Paul deeply and just want what is best for him.
She continued: “We accept his diagnosis. I know Paul will always have needs going forward but he is our child and we love him so much.
“When I look at him I see a vulnerable human being who needs someone to do things for him. I’m so thankful to God that we are lucky enough to have him, we love him so much.
“I’m finding it very hard and I do think about the future a lot, how do I handle his strength? I’m told constantly to focus on the now and stop thinking about the future but that is easier said than done when there is no roadmap for him.
“Unless you’re living through it, you don’t understand what day to day life is like living with a severely special needs human being.
“I do believe that there is a lot of potential in our little Paul and he does have intelligence. We are not giving up on him. We will settle for no less than what he deserves.”
