He knows he shouldn’t, but John McDonald can’t help feeling guilty about his 11-year-old boy’s ability to communicate.
If he’d been able to afford to pay for private speech therapy when Seán was younger, he feels his son, who has autism, might well be able to be understood much better by those around him.
“It kills you,” he says. “There were missed opportunities over the space of five years to maximise his potential. We’ve missed that window. It hurts to say it, but financially I wasn’t in a position to offer him speech and language therapy. I feel like I’ll live with it forever.”
Parents such as McDonald shouldn’t have to worry about their financial resources dictating whether their children reach their potential.
Under disability legislation, all children born after 2002 are entitled to have their needs assessed within a six-month window. Once these needs are identified, the services, at least in theory, should follow.
But in many parts of the country, these services appear to be in crisis. Many wait years for basic intervention such as speech and language therapy.
Experts agree early intervention is crucial. For children with autism especially, the right kind of support at the right time can help unlock some of the most restricting aspects of the condition.
McDonald struggled to access these services through the public system when his son was diagnosed.
His luck changed when they secured a place for Seán at Saplings, a highly-regarded school for children with special needs in Kill, Co Kildare, set up by parents and professionals more than a decade ago.
He was able to access speech therapy two or three times a week, while the therapist was able to link with his school tutor. After intensive therapy, his speech began to flow.
“The staff were brilliant,” McDonald says. “He began making big strides. He was able to move on from saying ‘mammy’ and ‘daddy’ to being able to ask for food or things he wanted.”
Funding shortages
But when the downturn hit, funding shortages meant the service could no longer afford the speech and language therapist.
Forced to rely on HSE services, he says he hit a brick-wall of bureaucracy and excuses.
“We were made to jump through all sorts of hoops and were told things like he wasn’t eligible for a service,” he says.
After threatening legal action, he did eventually access therapy, but McDonald says it was sporadic and nowhere near enough.
By then, Seán was five. His progress plateaued. It stayed that way for much of the next five years.
Recently, McDonald has managed to group together with other parents to buy speech and language services privately. Seán is now 10. He’s back making progress communicating again. He loves singing and dancing. His speech is still limited, but he’s on the right road.
“He’d sing all day and all night; he’ll watch adverts on Youtube and sing them back to you for the rest of the day,” says McDonald.
“We just want the best for him . . . I know there are people in worse situations out there. But our focus is on providing for him. It’s just frustrating when you try to get a service, all you get is a bureaucracy saying ‘no’.”
