It’s now well-established that early intervention is key for children with autism, yet one Dublin mum says she feels “abandoned” by the HSE after years of struggling to get her 3 young boys the help they need.
Louise Lawlor – a single mum – has turned to Go Fund Me in a desperate bid to provide her children with a sensory space which helps to calm and reassure children with autism when they are suffering from sensory overload and sometimes try to manage violent outbursts.
And she explained that her middle son is “really suffering” due to the delay in accessing care from the HSE, to the point where she is “very, very scared” for her little boy.
Sensory rooms are considered essential by parents and caregivers who say that children with autism are hyper-sensitive to lighting, smells and noises that most of us don’t notice – with new research showing that autistic children were found to have more pronounced changes in heart rate in response to loud sounds and scratchy surfaces.
A sensory room provides a calming space to help children with autism self-regulate and manage sensory overload, advocates say, and they can be therapeutic and soothing – and feel safe for children with a heightened sense of flight or fright.
As Louise waits desperately to get the help she needs, she explains that a sensory shed would mean the boys would have a place to manage their emotions, providing sensory tools, calming lights, noise-canceling features, and a safe environment to help them cope during overwhelming moments.
She explains that “simple things that many families take for granted—like going to the cinema, days out, or even enjoying day-to-day activities—are not always an option for us. These experiences can overwhelm my children, making them anxious, scared, or frustrated, which is why I’m seeking to create a sensory shed that will give them a place of peace, where they can retreat and regain control when needed”.
The shed would cost €5,500, and already Louise says she is hugely grateful to those who have given so generously to reach 40% of the goal, but the family are hoping that the kindness and generosity of those who hear their story would make the sensory place possible.
All three of Louise’s children have autism. Her three boys – Aidan is twelve, Charlie is eight, and Matthew is six – are “incredible”, she says, but are not getting the help they need. She adds that, like other children, they have been left languishing on waiting lists to the point where, in common with many already-stretched families, she has had to find the money for private assessment for a diagnosis so that they might be able to access care.
“Aidan was only diagnosed by HSE two years after we approached them for a diagnosis, and a year and a half after I had to pay for a private assessment,” Louise said, revealing that she is waiting for assessments for Charlie and Matthew, with Charlie’s paperwork with the HSE in October 2021.
Louise says that while all the children are waiting for support they need “urgently” from the HSE, her 8-year-old Charlie requires perhaps the most immediate assistance since his case is the most acute.
“REALLY SUFFERING”
“Right now Charlie is really suffering and his self-harming is extreme, and it is just so distressing as a mother to see him suffering like this,” she said.
“Charlie would bang his head off a concrete floor. Yesterday, he bashed his head against the bathroom window. Sometimes Charlie would sit in my shower playing with sensory toys for an hour or two a day because water soothes him.”
She said that the little boy’s school is “extremely supportive”, and that teachers are “fabulous people”, saying she “could not speak highly enough of them”.
Brothers Charlie and Matthew
Like many parents who feel they are left struggling as their children spend years on waiting lists for assessments or to access treatments, Louise feels “the HSE is basically neglecting children with special needs”.
“I will keep fighting for my kids. But I shouldn’t have to constantly fight. There should be help and support for autistic children,” the Ballyfermot mother recently told the Irish Sun.
“I’m doing what I can for him but I’m scared that the HSE are not going to intervene on time, that the HSE are not going to give the help that’s needed to get Charlie to where he needs to be.
“His paperwork was sent to them in 2021 and Charlie is still in a queue waiting to be seen. I paid for a private diagnosis for my three boys.
“It is my pleasure to do that, but I’m not getting adequate support from the HSE.
“There should be regular therapy sessions for them. They need those supports.
“I’m just getting on with it but I feel like I’m between a rock and a hard place.
The Go Fund Me page set up to help the 3 boys get a sensory room says:
“As a single mother of three incredible children with autism, I am reaching out for your help to create a sensory shed that will provide my kids with the safe, calming space they desperately need.
“He is also prone to violent tendencies during moments of frustration.
“My middle child, 8 years old, experiences violent outbursts and self-harms, he requires a safe, calm space to retreat to when these moments arise.
“My youngest, 6 years old, has trouble managing his emotions and is quite prone to frequent daily meltdowns.
“As their mother, I want nothing more than to give them the best possible childhood, but simple things that many families take for granted like going to the cinema, days out, or even enjoying day-to-day activities are not always an option for us.
“These experiences can overwhelm my children, making them anxious, scared or frustrated, which is why I’m seeking to create a sensory shed that will give them a place of peace, where they can retreat and regain control when needed.
“This sensory shed will be a specially designed space to help my children manage their emotions, providing sensory tools, calming lights, noise-cancelling features, and a safe environment to help them cope in overwhelming moments.
“It will be a place where they can feel calm, safe and understood.
“Your generous donations will make this dream a reality for my children, offering them the space they need to find comfort and stability in a world that often feels overwhelming to them.
“Thank you for supporting us in providing a better, more peaceful life for my three boys.”
The HSE does not comment on individual cases but said: “We acknowledge that regrettably the children’s disability network team (CDNT) service in many areas are managing significant waiting lists.
“The CDNT is actively recruiting through local, national and international channels and working hard to increase staffing levels to meet the service demands.
For further information on the Go Fund me page, see here.
Charlie and Matthew
Aidan
The loving mum is appealing for help