'Someone always has to be with Kayla': Cork mum pleads for extra supports

12-year-old Kayla Henebry has autism and a moderate intellectual disability and her behavioural issues are getting increasingly hard to manage

Aisling Hennebry and her daughter Kayla at their home in Ballyvolane, Cork City.

Aisling Henebry’s hands are covered in bruises from when her daughter Kayla, in a distraught state, launched a pinching attack.

The 12-year-old, often a “sweet and placid girl”, has autism and a moderate intellectual disability and her behavioural issues are getting increasingly hard to manage.

“We’re in a dire situation at the moment,” Aisling says. “We’re really struggling. Kayla has behavioural issues. She’s lashing out a lot, hitting and pinching.

“When Kayla pinches and lashes out she cries a lot, continuously verbally stimming. She can get really upset and then self-harm too.

Aisling Henebry says of her daughter, Kayla: 'She loves to bake. She’s a really sweet girl. She loves hair at the moment, she loves her style and dressing up.'

“In 12 years, we’ve had virtually no support at all. Nothing. When she was six she had one lot of occupational therapy. Nothing else." 

Aisling says the Progressing Disability Services for Children and Young People (PDS) programme, a HSE system designed to provide equitable access to children’s disability services throughout the country and implemented in recent years, has just created a lot of paperwork. And that paperwork is now blocking the delivery of services, she believes.

“Physios and OTs [occupational therapists] who could be helping our children are doing paperwork instead.

“I’m calling every day asking for help. I’ve even left voicemails where she’s screaming and pinching so they can hear what’s happening.

“You only get help if you’re critical. But to me, this is critical. She’s lashing out and hitting me and my husband.

“I have a three-year-old and a one-year-old as well. I feel like they’re missing out on their childhood too because we can’t go out and do things together as a family.”

Kayla is attending Carrigaline Community Special School, which her mother and other parents campaigned hard to bring into existence last year because there were no other appropriate schools that could take their children.

The school has therapy rooms but no in-house therapists because this function was removed from schools under PDS. That programme regrouped therapists into regional teams which are then sent to schools and clinics when required. The idea was to give more equitable access to disability services for children throughout the country. But many schools now say that it has largely left them without the therapists they desperately need.

Aisling says supports are almost non-existent anywhere in the public system.

Kayla Henebry. Her mother, Aisling, says: 'I feel let down by the system and I feel I’m letting Kayla down as her mother.' 

“With the right supports, Kayla can thrive and be the best that she can be and aim to do things as independently as possible. She will be able to adapt to coping strategies to deal with stressful situations and learn how to control her behaviours, whether it be through self-regulation or calming techniques.”

Having multidisciplinary teams in schools to provide crucial services such as OT and speech and language therapy and behavioural supports would improve the learning environment for everyone, equipping children with the tools to better manage their emotions, calm themselves and therefore be in a state in which they can learn, she said.

“If the HSE won’t supply therapists in schools, then there should be a grant so the school can hire them privately,” says Aisling. “It’s not fair on teachers not to have those supports.

“It’s not fair on the kids and it’s not fair on parents either. We’re expected to be OTs, psychologists, teachers, everything, and we just cannot be all those things.

“We had to fight for this school because the other one did not have enough places. There seems to be a constant battle and fight.

“It’s the most vulnerable kids who suffer. There’s all this talk of early intervention, that getting therapies early makes a huge difference to these child’s lives — but they’re not getting them unless you can pay privately.

“I feel let down by the system and I feel I’m letting Kayla down as her mother.

“She has so much potential. There are certain things that she’s brilliant at. She loves to bake. She’s a really sweet girl. She loves hair at the moment, she loves her style and dressing up.

“If she got the support I think she could understand her own mind more. When she has challenging behaviour it’s sad and upsetting. I don’t have the training to know how to deal with it.

“Kids with disabilities are not seen as an asset. They’re seen as a burden. Government doesn’t expect them to be taxpayers so they’re forgotten about. But they have the potential to do so much with help.

'I feel let down by the system and I feel I’m letting Kayla down as her mother,' says Kayla’s mother, Aisling Henebry. Picture: Dan Linehan

“All the therapies she’s had, apart from a few OT sessions when she was six, we’ve paid for privately.

“She needs psychology and behavioural supports. She also needs a lot of OT to help her regulate.

"She’s not fully verbal — she has enough language for everyday life, but speech and language would also help a lot.

“If she got the supports she needs now it would help her in everyday life so much, it would give her the coping skills she needs.

“I just want her to have a normal life, to be happy in herself.

"But it feels like you’re just stuck in this vicious circle. You take one step forward and two steps back.She doesn’t even have a social worker and, without a social worker, you can’t get the supports and the help she needs.”

Aisling says the family is in desperate need of respite and home support.

“This is the main thing we need now. I can’t go out in public with Kayla because she may lash out at someone. And she’s very quick. She can run off so quickly and if I have the three-year-old and one-year-old with me I can’t run. I’d be afraid that she may attack other children.

“I feel like a prisoner in my own home. Someone always has to be with Kayla.

“We’re so nervous to go out in case she acts out. Although there’s more autism awareness now, people do still stare when your child is shouting and screaming.

“It’s upsetting as a parent to constantly have to fight for things that your child should be entitled to. Even minister [for disabilities] Anne Rabbitte has admitted that our children’s human rights are not being protected.

“And, at 18, she’ll grow out of these services. We had to fight to have Kayla’s school opened in the first place. Will we have another fight on our hands then for access to adult services? We need help, home support, respite. It’s getting too hard.”

The family, who live in Ballyvolane in Cork City, have to make sure every window and door is locked at night to make sure Kayla does not run outside.

The house is like Fort Knox. She climbs out the windows and can run really fast, she’s like a rocket, so we have to keep all the windows and doors locked and we have to keep the keys hidden. 

"If there was a fire in the morning we’d all burn to death. There’s also an alarm system in the house at night so if she opens any door it will go off.

“Kayla will always need 24-hour care. What happens when we die? She’s a child in a 12-year-old’s body. She needs help washing, toileting.

“You’re in fear of other kids making fun of her. She doesn’t have many friends.

“Life is constantly stressful and tiring. Me and my husband both work, we have no time for each other as a couple, we can’t go on holidays. 

Kayla needs 24 hour care. She needs to be constantly watched.  We take each day as it comes. We want to do the best for our children every day but there’s only so much time and energy you have before you reach breaking point. 

"It’s cruel to put families through this." 

Ms Henebry attended a meeting with Ms Rabbitte and some 150 other parents of children with disabilities in Cork recently.

During the emotionally-charged meeting, parents explained the hardships their families endure every day struggling and failing to access disability services their children desperately need.

Ms Rabbitte conceded that the current system is not working for families.

She said that although her department’s annual budget of €2.1bn was sizeable, it did not seem to be translating into services on the ground.

She said she would try to help struggling families and committed to meetings with local Cork schools to look at service provision there.

Aisling says: “At least Anne Rabbitte turned up to hear us. I hope now she’ll do something.

'Kayla will always need 24-hour care,' her mother says: 'What happens when we die?'

“The HSE was invited but no one came to the meeting. They’re supposed to be the service provider but they can’t even turn up.

“Anne Rabbitte said that money is going into the system but it doesn’t seem to be reaching us on the ground. I think there should be a full audit of the HSE to see where the money is going. In 12 years I have nothing to show for it.

“As a parent, you can feel very alone. Having a child with autism and an intellectual disability not only affects them, it affects the whole family. Simple things like going to the supermarket or the park you can’t really do anymore.

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“It’s horrible that we have to put our personal stories out there to try to make change. But the only way you get help is through public pressure.

“I’m so fed up of fighting with a broken system.”

The HSE has been contacted for comment. 

• Tomorrow, Liz Dunphy speaks with another family struggling to access disability services for their children