‘I sleep with one eye open:’ Crystal Swing’s Dervla Burke on inadequate autism services
Dervla and her son Paul Picture: @dervla_b / Instagram
Crystal Swing’s Dervla Burke O'Connor has said she is willing to sit down with an Taoiseach Micheál Martin to discuss autism services, as she continues her fight for adequate services and help for her son Paul.
The Cork mother, who called for more support for children with autism and their families on last night’s , has previously spoken out about the “huge battle” she and her husband Tim are facing in getting their 5-year-old son Paul the services he needs.
Paul, who is non-verbal, suffers from “very severe autism.”
"He has a lot of behaviour issues. Socially he doesn't mix with others, he doesn't mix with other children,” Dervla explained.
“He has a little sister Hannah, and he just looks right through her like she isn't there."
But the greatest issue they face is the “appalling” lack of services, she said.
"If we died in the morning where would Paul go? You cannot just hand him to anybody... families like us, we need peace of mind. We need a roadmap going forward.”
Dervla, who received an influx of support following an interview on RedFM’s Neil Prendeville Show in January, said she feels all she has done is "talk, talk, talk” about the issue.
“The whole system has to be changed... I am more than willing to meet with any government minister, our Taoiseach, any HSE officials.
"I am more than qualified to speak about this," she said, "you have to live through it to understand it".
“Until it comes to your own door... you don’t really realise what it’s like.
“It’s like I am a prisoner in my own home, as is my husband and my daughter.”
“It has affected every aspect of our lives, we can’t go on a holiday, we can’t go for a meal, we can’t go to a party, we can’t do the simple things other families do.”
Heartbreakingly, Dervla revealed Paul struggles to form “emotional bonds” and says he doesn’t know that she and Tim are his mam and dad.
"I would long for the day to hear him say mam or dad.”
The Midleton mother, who had to give up on her dream of a singing career because she is Paul’s full-time carer, also spoke about the challenges her daughter Hannah faces.
"It's very frightening for her," she said, "he hits her a lot."
"And a child like Hannah can be very forgotten about because everything revolves around Paul."
Dervla said the lack of services available to families like her own is an "absolute shambles."
"The stress and the trauma we are put through in order to get things like an education, essential services like occupational therapy and speech therapy...
"And he's just not getting it."
Dervla said parents like her are expected to act as therapists for their own children.
"I am not a qualified therapist.. by right, Paul should be receiving regular occupational therapy and speech therapy in order to progress in life.
"We want Paul to gain basic life skills and if he doesn't get these now it will be detrimental to his progress".
The mother-of-two said caring for her son is a 24hr-a-day- job and she always sleeps with "one eye open."
Speaking on the same program, Adam Harris of the national autism charity AsIAm said all autistic people and their families want is "the same chance."
"But again and again autistic people are faced with barriers that don't need to be there.
"From the moment families start on this journey they have to fight."
The CEO of AsIAm also said they know to raise a child on the autism spectrum in Ireland costs an additional €28,000 per year, over and above what it would cost to raise a neurotypical child.
"Every penny of disposable income in the household has to go towards private services the state is failing to provide."
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