'He’s my son, I love him, but he has hurt me': Cork mum on caring full time for Liam, 15
Liam, Skye, and Julie Anne Cunneen.
Julie Ann Cunneen is woken at 5.30am many mornings by her 6ft-plus son jumping on her in her narrow hospital bed. The force often sends her crashing to the floor.
Ms Cunneen is deaf so she can’t hear him approach and the first warning is the physical collision or flailing arms hitting her in the face.
Her son Liam turns 15 this month. He is also deaf and has autism, ADHD, dyspraxia, dyslexia and arthritis.
Ms Cunneen is his sole carer at their Cork home but her own conditions, including arthritis and degenerative disc disease, are making once simple tasks increasingly difficult.
Yet, she has been denied respite for the last 15 years. She has been told the only home help she can have is someone to help her dress herself in the mornings but nothing more, and despite being recommended a wheelchair by her occupational therapist to aid her mobility and give her more independence and less pain, she said that she was denied that too.
Of all Liam’s complex medical conditions, ADHD is the hardest to deal with.
The condition can make him very impulsive, requiring constant stimulation. And it has also led to aggression.
After not being seen by Child and Adolescent Mental Health Services (CAMHS) for three years, his behaviour became dangerous, she said.
He hurt her to such a degree one night that she had to go to A&E and beg for an intervention. CAMHS did see her son after that, worked on his medication and his behaviour improved again.
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At more than 6ft tall, Liam is now much taller than his mother and authorities have said that he is a physical threat to her. But nothing has been done to help her.
“That made me think that I had no value as a human being. That no one would help me,” she said.
A recent medical report also shows medics warning that unless she is given respite, she is at risk of complete burnout at which point Liam would have to be taken into care.
“The Government knows that we’ll never give up on our families. We’ll care for them until it kills us. But if we get no support at all we’ll eventually be so worn out they’ll have to be taken into care and be a much bigger cost for the State then.”
Although Liam received cochlear implants ten years ago, a life-changing technology which can help him decipher sound, he has not had public access to therapies like speech and language therapy which would help him use them properly.
“I pay a lot for private care. I pay for him to see a paediatric rheumatologist in Dublin for his arthritis – there are none in Cork. There was a four-year wait list publicly and I couldn’t bear to leave him in pain for all that time.
“Liam’s had so many ‘urgent’ referrals but nothing much has happened. I’ve been screaming for help for years. There’s a lot of despair, a lot of hopelessness, a lot of depression that we’re still here fighting for the same basic things.
“You end up so bruised. And what happens to our children when we’re gone? They don’t have the ability to stand up and fight for themselves.
“Every family should be given a budget so they can source care themselves. It’s what we’re doing anyway. And it’s what happens in other countries. We pay high taxes here but don’t seem to get any services for them.
“I don’t think we’re disabled by disability. We’re disabled by the lack of services and support.”
The daily costs of life caring for a child with a disability is also a constant stress she said.
“For 10 years I’ve been driving Liam up and down the Dublin road to appointments. My health means I have to stop on the way so it takes two days to get there. Diesel is so expensive that when I come back, I wonder if I have enough money for food for the week. The drive takes a toll on my body and on the car and we have to stay overnight which costs more money.
“As a single parent, I don’t think a day goes by without budgeting and worrying about money.
“We live in upper Glanmire, there’s no public transport so we need the car but some weeks it’s hard to buy diesel.
“Hot water helps to regulate and calm him so he could have three baths a day. The cost of living now with the rising cost of electricity really worries me. What will happen if one day I say he can’t have a bath? How aggressive could he get then? Sometimes, you can be scared of him."
Every day, she helps her son wash, dress and shave. She makes him a hot breakfast and a hot lunch before he goes to Carrigaline Community Special School.
“He loves the school. It’s the first place he’s been that gives him a really good service. The principal is brilliant and so proactive. If there’s some technology he needs to help him she’s very proactive in applying for it. But they have no multi-disciplinary team and having an occupational therapist and speech and language therapist on site would make such a difference.
“OT would help him to regulate his emotions better and give him more self-control. It would also help him learn how to dress himself, wash and shave. Physio would help with his movement. Speech and language would help him learn how to listen, not to interrupt all the time.
As difficult as it has been getting help for Liam as a child, adult disability services seem even worse, she said.
“I’m literally terrified, terrified, about what will happen when he turns 18. But I just try not to think about it. What can I do?” Housing is another concern. The family bought a bungalow some years ago to avoid falling downstairs – something that happened frequently before.
“My OT recommended a wheelchair for me but the public health nurse said no, she didn’t have the funding for it. It’s about the budget and money not meeting people’s needs.
“I miss the old days – horse riding, gardening, being independent, being able to get up a ladder and change a light bulb. Now I struggle with the smallest tasks. Even changing a duvet cover is a struggle with arthritis."
Their autism assistance dog Skye, received from charity My Canine Companion, has been the biggest support the family has received, she said.
“When I’ve had a really bad day and when I’m in a lot of pain, Skye will come and sit with me. She connects with people. She’s such a great support. You don’t feel so alone.
“And she’s great with Liam. She comes everywhere with us, into hospital visits, to the dentist, anywhere Liam could get anxious. She calms him down.
“But it’s not fair that charities have to plug the gaps in the health service like this. The HSE should be funding that."
Although Ms Cunneen studied in University College Cork for a degree in Early Childhood Studies and a Masters in counselling and psychology, she has been unable to use her qualifications for work because she became Liam’s full-time carer.
On May 6, the group Families Unite for Services and Support, FUSS Ireland, will hold marches in Cork and Dublin from 10am highlighting the problems facing children with disabilities.
“Government relies on us being trapped in our carer role but we’re going to try to come out onto the streets with our children. Because currently, we’re not being heard,” she said.
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