My Health Experience: Caring for my daughter: ‘I have coping strategies, but I crawl under the duvet too’

Feelings of isolation and ongoing anxiety about the future affect Sarah Fitzgibbon, a mother-of-two whose younger child, eight-year-old Poppy, was diagnosed with ataxic cerebral palsy when she was 13 months. Between 5 and 10 per cent of all cases of cerebral palsy are of the ataxic variety, making it the least frequent form of the condition. It is caused by damage to the part of the brain known as the cerebellum, which is essential for co-ordinating muscle movements and balance.

Sarah and her husband, Jonathan Shankey, knew there was something seriously wrong with Poppy but it was difficult to get a diagnosis.

“We ended up using every excuse to get Poppy into the emergency department. Eventually, a doctor in the emergency room measured Poppy’s head and found that the circumference was much smaller than it should have been. We were then able to get a neurological consultation at Our Lady’s Children’s Hospital in Crumlin, where Poppy had a series of MRI scans. Her cerebellum didn’t develop the way it should have when she was in the womb.”

Poppy is unable to talk. “She finds it difficult to coordinate her mouth and throat. She has a learning disability and is also termed as ‘globally developmentally delayed’, which means that she presents as a much younger child. She has sensory issues, which mean she’s unable to deal with very loud noises and busy environments. She’s able to walk with support, but is a wheelchair-user most of the time. She can’t self-feed or self-toilet.”

Through the Jack and Jill Foundation, Sarah was able to access a nurse when Poppy was small. “She still helps us out occasionally. I have another lady who helps when I need it, but we have to pay for that.”

Sarah sings the praises of the Jack and Jill Foundation, which helped her to find out her entitlements, including the domiciliary care allowance. But Sarah feels hugely let down and ignored by the State, pointing out that there is no State respite care.

She and her husband, as well as their wider family, have to pay €3,000 a year for therapies for Poppy, as well as paying for a stairlift and a ramp to make their Dublin home wheelchair-accessible. The family has a 12-year-old car but they need a van.

Poppy initially attended the Central Remedial Clinic playschool services. She now attends Scoil Mochua in Clondalkin, which is a special school that follows an adapted curriculum.

“We have to constantly fight a battle to retain a good ratio of special-needs assistants. We’re blessed with the school because the teachers are very dedicated.”

Sarah works part-time at the Abbey Theatre developing drama for Junior Cert pupils. Jonathan is a theatre agent.

“Working helps my brain,” says Sarah. “But the downside is that we lose out. We’re the archetypal squeezed middle with a household income of about €65,000. That means Poppy doesn’t have a medical card and I don’t qualify for a carer’s allowance. We can’t get a building adaptation grant for our house. We’re in the firing line the whole time, using our savings and pensions just to put necessities into the house.”

For Sarah, there is no prospect of working full-time. “Once Poppy gets to 17, I become her full-time carer and that’s the end of that. I have a finite period on my career and I’ll be very sad about that. You make sacrifices. We do our best to normalise the situation. Poppy’s sister, Rosemary, is a great kid but she misses out sometimes.”

Sarah worries about becoming ill and unable to care for Poppy. She says it’s very difficult to plan for the future. “At the moment, we’re trying to future-proof our home to make it a space that Poppy can be cared for [in the] long term. For the cost of that, we’ve tapped our families and our inheritances.”

When people tell Sarah that she’s great, “I say, ‘What the hell else would I do?’ I can’t turn my back on Poppy. But it’s very stressful. Scope [a UK disability charity] did a survey of 1,500 parents of kids with disabilities. Of the group, 47 per cent had gone to their GP about anxiety and 57 per cent of those surveyed were on antidepressants.

“At a recent coffee morning held by the support group I attend, I realised that I was the only one of the nine people there not on antidepressants. I have coping strategies, but I have my moments where I crawl under the duvet.”

Poppy’s Wheels is a fund set up to meet Poppy’s ongoing transport and mobility needs. See idonate.ie/poppyswheels