Parents pay out hundreds of euro for son’s support
“SOME days I can not boil the kettle in the house Patrick is that sensitive to sound and it can spark a meltdown that could last for hours.”
The heartbreaking words of Mum Nicola Scott whose 4- year old son has severe autism and Sensory Processing Disorder ( SPD). She noticed something was not right from an early age when Patrick was having difficulty interacting with her.
“When he was one he was referred to the HSE’s Early intervention Team for young Children who are experiencing developmental delays.”
Nicola from Coolaney explains that the first thing the team did was send her on a parenting course. She recalls: “All of the parents on the course had children with autism. This was the first time I realised Patrick could be autistic.” Nicola said the course was useful with the aim being to equip parents on how to do therapies at home, but that for her it was not an answer.
“I had a child at home who could not make eye contact whom I could not communicate with and I was told to go home and help him. Did they not realise when I tried to play with him he would scream, I could not bath him or touch him sometimes. They issued a standard set of guidelines with this parenting course but every child is different and Patrick was well beyond my reach.”
Through the early intervention team, after a seven month wait during a crucial developmental stage for a child with autism, Patrick did eventually get to see an occupational therapist and a speech therapist but the appointments were at best sporadic.
“When the OT went on maternity leave there was no one to cover her,” says Nicola, “My partner and I decided we better do something as Patrick was getting worse. So we hired a private speech therapist and an Applied Behaviour Analyst privately and spent a fortune on one- to- one therapies twice a week at home. We were paying hundreds a month and I’m by no means rich but we were just desperate.”
Nicola stresses that at no stage was she unhappy with the actual therapists in the early intervention team, but rather the system as a whole.
“The therapists were great but we didn’t get to see them often enough. There was no consistency of care. We had no peace of mind.”
After eight months of intensive therapy at home, Nicola says Patrick got a pre- school place in The Holy Family Special preschool in Ballytivnan through the Early Intervention Team.“This is three hours a day and we are lucky that he got this place but after that we are pretty much on our own. I’m still paying € 80 a week for a private speech therapist at home. I can’t find an OT to help him privately.”
Mother of two Nicola says it is hard to believe how difficult it is to access services for her son: “You take it for granted that a severely autistic child will get help. I was absolutely stunned and I’m exhausted trying to take care of Patrick on my own. I’ve had to give up work as a web designer to be a full time carer, but you do what you have to for your child.”
“There are no answers, no reassurances from the HSE for me. The situation is overwhelming. With Patrick things have to be the same. I have a picture schedule for him and home and if you divert from that course at all, you could have a meltdown that last for ages. He can hurt hurt himself and that is worrying as a parent.”