Carers in Crisis: ‘The benefits of residential care have been immeasurable’
How service has improved life for family of 13-year-old boy with Down syndrome
Aisling and Kevin Davenport are the parents of three children – two sons and a daughter. Their eldest child, Tommy, is now 13. He was born with Down syndrome and, at four, was diagnosed with autism.
“We had been living in Meath,” Aisling says by phone, “and we decided to move to Dublin, so that services for Tommy would be co-ordinated. When we moved, our social worker at the time said that residential care would be needed for Tommy once he hit puberty so, from early on, that was what we were looking for.”
Tommy also has insomnia, which means that for roughly every second night, he would not fall asleep until midnight, and then be awake at 3am.
“As he got older, he became more of a danger to himself, and because he had no sense of danger, he couldn’t be left alone. One of us had to get up to be with him.” Aisling explains.
On November 19th, The Irish Times published an interview by this reporter with Johanne and Alan Powell, a couple in their 60s facing retirement, who are still caring for their profoundly disabled daughter, Siobhan.
Since the interview appeared, The Irish Times has been contacted by several other parents of disabled children, including the Davenports.
Crisis after crisis
On their move to Dublin, Tommy was connected into the St Michael’s House services.
“When we started with St Michael’s House, we hit crisis after crisis. He self-injured a lot. He’d pinch his face with his nails so hard he’d draw blood. He still has marks from doing that. Or he’d bang his head against hard surfaces. He has permanent scarring on his forehead from that.”
Kevin Davenport’s work regularly took him out of the country, so Aisling frequently was the sole carer for their young family.
“We all became further and further exhausted and stressed. Even making dinner was a chore. There was an impact on the younger children.
“Getting up so many nights was absolutely exhausting. I was always over-tired. Even going out in the car in the mornings, I’d be worried about safety, due to lack of sleep. And carers can’t ever be sick. That’s not an option.”
They did receive some respite for Tommy once they moved to Dublin, but it was never clear when respite would become available.
“Services are so patchy and inconsistent, that it makes it so hard to plan anything.”
Aisling recalls the efforts involved to attend a family wedding.
“It took four of my friends doing shifts between them to cover the day. Even organising the logistics of that alone meant by the time I actually left the house, I was already exhausted.”
As Tommy got older, as the social workers had predicted, his behaviour became more difficult to manage.
“He was bigger and stronger, and pushing us out of the way. He was less easy to look after in a physical way. He has a lot of sensory reactions and, when he’s exhausted from lack of sleep, he might hit out.”
In July of last year, the Davenports received a residential place for Tommy at St Catherine’s Association in Co Wicklow.
“The benefits for all of us have been immeasurable. With all the additional care Tommy is getting, there has been a huge improvement in him. It has been a revelation.
“His care is very inclusive of us; we have him home overnight twice a month, and we see him a minimum of twice a week. We can go and see him whenever we like.”
As regards family life now, she says: “It took a long time to get our sleep patterns back, but now we have so many more opportunities to do things as a family – to be spontaneous – and my husband and I are a lot less anxious.”
Aisling Davenport does not like to dwell on what their family life would be like now, had Tommy not received his residential placement.
“We know how lucky we are,” she says, “and we know how many other families are looking for placements. The conversation needs to be had about how carers in Ireland can be supported better.”