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26th March 2024
05:29pm GMT
In a country where access to essential services for children with disabilities can feel like a maze, the story of Amy Gallagher and her little boy, Henry, is shining a much needed light on the challenges faced by countless families every day in Ireland.
From navigating early intervention programmes to securing school placements and advocating for vital support services, their journey as a family epitomises the resilience and determination required to navigate a system filled with obstacles.
Henry, a vibrant and affectionate five-year-old, was identified as needing support at a young age. His journey began with a referral to the Children's Disability Network Team (CDNT) in July 2021, just before his second birthday.
Despite his evident need for services such as occupational therapy (OT) and speech therapy, Henry and his family found themselves caught in a web, waiting until July 2027 before any support would be available.
"He gets nothing. Absolutely nothing."
His mum, Amy Gallagher described him as “the most sensitive gorgeous little soul. He's so affectionate.
“He's just the best child ever, he's such a gentle a little boy and so loving and caring and deserves so much more, because he gets nothing, absolutely nothing.”
One of Henry's primary challenges is communication. Described as pre-verbal, he relies on a picture exchange programme to express his needs.
Amy explained to HerFamily: “Henry is pre-verbal - that's what they class it as - so he makes sounds but doesn't use words and he uses a picture exchange programme.
“We're trying to get him an AAC device now because his world is completely shut off. Even though I know when he wants something, if he came up to anyone else, they're not going to know what he is looking for.”
The prospect of an Augmentative and Alternative Communication (AAC) device offers hope for enhanced communication, but the road to obtaining one is once again laced with hurdles.
From navigating outdated assessments to advocating tirelessly for services, Henry's family has faced an uphill battle every step of the way.
The landscape of disability support services in Ireland paints a grim picture for families like the Gallagher’s. With lengthy waitlists, scarce resources, and fragmented systems, accessing essential services has become an exercise in endurance.
Henry receives little to no support outside of the dedicated efforts of his family and the resources provided by organisations like PALS Preschool.
Amy said: “Just like all his little friends in school, they get nothing. There's no services.
“He [Henry] is a massive sensory seeker, so he needs Occupational Therapy (OT), but he won't get that. He needs speech therapy because he's pre-verbal, he won't get that. We've no social worker. We've no physiotherapist.”
That’s where PALS has become a beacon of hope in an otherwise challenging area, offering a nurturing environment for autistic children like Henry.
With its low student-to-teacher ratio and multidisciplinary approach, PALS embodies the kind of support system that every child with disabilities deserves.
“PALS is the most incredible place you'll ever see,” Amy says, “ there's four classrooms for the kids with huge spaces, all zoned out.
“They have an indoor playroom which is like an OT room and they have an amazing playground with a big massive tractor slide outside. They have a PE teacher come in and work with them.
“They have music therapists coming to work with them. They've OT they have speech. They have a room called the community room and it's like a little doctors set up, a little shop. It's like a little coffee shop, everything so they can like play in those areas.
“They have a behaviour therapist, so when Henry was having issues with socialising with the smaller kids, they set up a social group for him so he can go to the other classroom to the children who want to play.”
Yet, even as vital as PALS is, it’s not immune to the systemic issues plaguing the provision of disability services, with funding uncertainties threatening its very existence. As the government continues to delay payments - which every child has already been approved for - PALS has faced closure on more than one occasion.
“He has one teacher take him out every day for one-to-one work on communication. He does attention autism and which is another programme they do,” Amy said.
“He does skills for when he gets into primary school so like teaching him to put up his hand, teaching them sit and wait for his teacher to come over or have his little desk and to sit down.”
Amy went on to highlight the incredible strides Henry has made thanks to PALS, and said: “There's things he does in school that I'm like 'what?' Like he eats his lunch on that couch every day.
“He pours all his food onto my couch, but in school he'll go to the fridge and he gets his lunch box, he sits at the table, opens it, eats all his lunch and when he's done he puts it in his school bag and goes and cleans his face.
“It's all these things he's learning in school and he's come on so much since he started there like his eye contact has gone amazing.”
"Autism isn't the hard part – it's the system. It's having no support, no services.”
The mum-of-two then said: “He's more capable to socialise, he wants to play with other children. He just doesn't know how but that's from school like from being around more kids.
“Like he'll go up to them and he will look them in the eye and then they might run off because they're all tiny and he's so big, so I think they're terrified of him.
“But he really really wants to play and that's another thing like when they say 'oh you can just homeschool them,' he wants socialise he wants to be around with the children.
“Just like every other child does he just doesn't know how so he needs support but he's no different to any other child and deserves the exact same as any other child does.”
Henry's story is not unique. It echoes the experience of countless families grappling with the complexities of navigating disability support services.
“I'm supposed to be a teacher an SNA, an OT, a speech therapist, a driver, a chef, a dietitian, everything,” Amy said with emotion.
“It's so hard to be mum. You just want to be his mom, but I have to fight for him and advocate for him and everything else and autism isn't the hard part, it's the system, it's having no support, no services.”
From the frustration of bureaucratic delays to the heartache of witnessing their child's struggles, parents like Henry's face an emotional battle every day.
Yet, even amid these vast challenges, Amy and her family show resilience, determination, and unwavering love.
As policymakers and stakeholders grapple with the shortcomings of the current system, Henry's story serves as a poignant reminder of the urgent need for change.
Amy says it should be a strict necessity for the government to ensure payments are on time to PALS to ensure more children like Henry have what they deserve. “They're has to be a structure in place. They have a timeline on when they're meant to pay.
“They have dates meant to be paid by this date, that has to be followed and there has to be a consequence if it's not.”
Every child deserves access to the support and resources they need to thrive, regardless of the complexities of their abilities.
It is only through collective advocacy and action that we can truly create a world where every child, including Henry, has the opportunity to reach their full potential.
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