Edwina McElhinney’s son has been hospitalised twice after putting “something inappropriate” into his mouth. “He would put stones into his mouth. We have to watch him at meal times because he overfills his mouth. That is part of our lives,” said the Co Tipperary woman.
Five-year-old JJ is also a flight risk and his parents have raised the garden fence, “put locks on everything” and padlocked the utility room door so he cannot turn on water “and flood the place”.
They have also had to tie the kitchen chairs to the table to stop him climbing.
JJ’s mother recalled coming home after a parent-teacher meeting and crying because she was told that his peers in the autism class and in the mainstream class could not understand him.
“He is battling away. He is doing so, so well but it is heartbreaking to know we cannot afford the help he needs. He is very bright. All the information is locked in.
“Obviously my family and my friends can understand him but the general public finds it difficult.”
Edwina said her “bright, beautiful, kind boy” did get speech and language therapy (SLT) when he was young, including online sessions during the pandemic, “and for that we are very, very grateful”.
But she said hers is just one of “tens of thousands” of Irish families being failed by the State because, with more than 700 vacancies in the country’s Children’s Disability Network Teams (CDNT), waiting times for occupational therapy (OT), SLT and psychology services are often years rather than months. OT, she said, is crucial given the choking and flight risks.
When JJ had an Assessment of Need (AON) through his local CDNT in September 2022, his mother was armed with an autism diagnosis she had got privately for €1,000 and two reports from an occupational therapist which cost her €500. Edwina was told following that assessment that her son would get a SLT appointment in January 2024 and an appointment with an occupational therapist in January 2023.
When she appealed, the OT session was pushed back by another eight months. Edwina was told it was due to staffing shortages, although she does not believe the recent Health Service Executive workforce census dated December 2022 supports that argument.
“We are 2½ years now waiting for a [public] OT appointment,” said the qualified holistic therapist, who said it’s heartbreaking for her and her husband to know they can never afford the amount of private therapy that would change their son’s life.
“We have the same financial worries as everyone, what with the cost of living from the Ukraine war,” said Edwina. Her husband works 50 hours a week, to pay the bills, she said. “He gets up at 3.30am every morning to put food on our plates and a roof over our heads.”
They paid €1,000 for the autism diagnosis as “we would have waited two to three years to get that diagnosis publicly” and they needed it to access services and a place in an autism class.
More SLT and OT is desperately needed if JJ is to develop to his full potential, but the family cannot pay for what is required.
“It is heartbreaking for a parent to know you are failing your child,” she said. “It is bad enough that the Government is failing your child without you failing your child as well. There are tens of thousands of us in the same boat.”
Rebecca O’Riordan’s daughter Emmeline (3), who has been diagnosed with an intellectual disability and with autism, has also spent time in hospital. In her case, her mother found her choking on vomit in bed, a trauma that resulted in the child being afraid to eat or drink fluids.
That was in May 2022 and “nobody in her CDNT has laid eyes on her since then”, said Rebecca. Her daughter survived for a long time on ice lollies and while she can now stomach some food, liquids are still a problem.
“This is a little girl who was sitting up at a table drinking out of a glass,” she said, who now gets fluid into Emmeline using a syringe or a baby’s bottle.
“Even the tiniest shred of support” from the disability services could make a difference to her daughter, she said. “I totally understand the system is in crisis and they are lacking in staff but I just don’t accept that this is acceptable,” said the Cork woman who is now studying law at night, partly, she says, to prepare for the battles ahead on behalf of her daughter.
Having left her old job when Emmeline started having seizures at seven months, Rebecca said: “I realised the system was so broken that I was going to spend the rest of my days fighting for her.”
Emmeline’s next CDNT appointment is in six months, according to Rebecca. Meanwhile, as the fear of drinking fluids continues, the child’s parents are setting alarms on their phones so they know when another syringe of fluid (“10-20ml at a time”) is due.
“We give her adult laxatives. It is utterly inhumane. I do not understand why nobody can put the tiniest effort into helping her come around from it,” she said. “I feel we have been left to rot.”
