If Grayson Adams goes another 12 months without specialist therapy, he may never speak or walk.
rayon, a very happy almost three year old with a wealth of dark curly hair, has been on a child disability service waiting list for almost as many years as in this world.
When he was just four months old, his doting mother Dawn felt her world implode when doctors told her Grayson had tuberous sclerosis, an extremely rare condition that means he has tumors in all his major organs. He also suffers from epilepsy.
Two and a half years later, Grayson and Dawn are still waiting for the state to grant him access to the life-changing services to which he is entitled — speech and language therapy, occupational therapy, and physical therapy.
Time goes by and the chances that he will learn to talk and walk decrease.
Dawn, who says she is exhausted from her efforts to get her son off the waiting list, also faces a David vs. Goliath battle to defend her little boy’s right to an education.
More than sixty preschools have turned Grayson down, putting him at risk of spending at least two reclusive years at home and possibly forcing his mother to take a leave of absence from her job.
“I’m just a normal, normal person who had a very special Baba. How am I supposed to fight the system alone?” Dawn said.
“I’m not asking for anything special. Anything else I can do as long as Grayson gets what every other kid gets.”
While Grayson can’t hold a bottle or put a spoon to his mouth, the potential he needs to learn is one of Dawn’s biggest motivations for getting him off the waitlist.
“Grayson can’t crawl, stand or walk yet, but he has the ability and ability to do those things within him.
“But he needs professional help, for which he is still on a waiting list.
“If he doesn’t get that support before he’s four years old, his chance of ever standing or walking drops to 2 percent. And really, that’s just the percentage they leave you as hope. He will be three next month.”
While Grayson can’t find the words right now, he’s babbling. If he had access to speech and language therapy, Dawn believes he could learn to speak.
“He has the potential to speak, to tell me what he wants, which would change our days so much,” she said. “If he ever goes anywhere, he won’t be able to tell me if people were nice to him or if he was fine. This is heartbreaking.”
It could be months before Grayson learns to walk or talk, even after finally gaining access to a physical or speech therapist. There are no two options for Dawn – he needs an appointment now.
It’s hard for them to know what’s already lost.
“If they had started Grayson on physical, speech and occupational therapy two and a half years ago, if he had a word now, if he had been able to stand, we will never know what the effect would have been.
“We’ll never know because he was never given that chance,” Dawn said. “It’s like they read his record and think he’s not worth it. Grayson doesn’t fall through the cracks, he gets pushed in.”
Grayson is on a waiting list for the HSE-funded Central Remedial Clinic (CRC) in Clontarf, Dublin. The CRC has received several letters from medical experts at Temple Street Children’s Hospital stressing the urgency of its case.
Experts include his neurologist, nephrologist, cardiologist, ophthalmologist, dermatologist, nutritionist and social worker.
Speech and language, occupational therapy and physical therapy staff at Temple Street have also agreed that there is an urgent need for Grayson to be removed from the waiting list and assigned to a team to care for him.
The correspondence has not been confirmed.
Nobody told Dawn how long Grayson will wait. An HSE spokesman said 137 children are on the CRC waiting list.
He said the Children’s Disability Network teams are reviewing their lists and will soon “be able to give a clearer indication of the expected wait time for services in individual teams and will be contacting all parents to update it as soon as possible.” “.
Meanwhile, Dawn fights an uphill battle to get Grayson into preschool.
Grayson doesn’t fall through the cracks, he gets pushed in
So far they have been rejected by more than five dozen nurseries in three Dublin postcodes. Some never bother to answer, and some claim they don’t have a spot, despite the places being publicly advertised. One told Dawn she’d be better off “taking him somewhere else.”
There was a glimmer of hope this summer. A daycare center said it would be happy to host Grayson next month and would seek any funding he would need to attend preschool. In June, however, Dawn was devastated to learn that the daycare’s insurer said she could only take him on if she secured a full-time nurse.
This would require support from AIMS – the Access and Inclusion Model.
After a stark warning that “no nurses are available,” a deeply frustrating search for the right application form, a two-hour appointment with two healthcare workers to fill it out, followed by the devastating news that the grant decision will take time After an inexplicable four months, Dawn now doesn’t know if Grayson will ever go to crib.
This also jeopardizes their ability to work. “It has forced me to a place where I have to say goodbye,” she said. “It brings a lot of things together, like how I could pay my rent. Our home – what would happen to it then?”
He doesn’t have a voice, but I do. And he may never have a voice, but I always will
She braces herself for the struggle she famously faces to get her son into elementary school in two years time. Grayson has global developmental delay. “Because of that, it feels like nobody wants him,” she said.
Dawn is keen to mention those who have helped her and Grayson. It’s a short list: the Jack and Jill Foundation, Temple Street Children’s Hospital and Eoin Ó Broin and Cian O’Callaghan – the only two politicians who ever got in touch with her after contacting as many of them as possible .
One day a government politician came to Dawn’s door. Desperate for help, she tried to seize the opportunity, only to plead Grayson’s case before the retiring TD.
In addition to being her son’s full-time caregiver and having her own full-time job, at least for now, Dawn is also Grayson’s voice and advocacy to ensure he receives the benefits to which he is entitled.
There have been hours of phone calls, emails, navigating secretaries and answering machines, trying and very often failing to speak to someone who can help.
There was so much she had to learn on her own – she was only told this summer she could have been entitled to a pediatric home care package all along.
Dawn said that the fight can be exhausting and things can get very dark, but she will never give up. “What I have is will and love, and I will not give it up. He doesn’t have a voice, but I do. And he may never have a voice, but I always will.
I said to the counselor, ‘Won’t he ever tell me he loves me?’ And he said, ‘He’ll tell you his way’
“This journey for parents and guardians like me with these beautiful little superheroes is so soul crushing and so heartbreaking. I can’t tell you the dark
“I’m sure people just get tired and give up. They retreat to their homes and just move on. Some days I want to, but I refuse.
“Look at him, he’s so beautiful. He is great. I love him and I know he loves me.
“When he was diagnosed, they told me he might never walk or speak. And I said to the counselor, ‘Won’t he ever tell me he loves me?’ And he said, “He’ll tell you in his own way.”
“And I almost died that day. But now I know what the consultant meant. He loves me, he just can’t tell. And that’s hard to accept. But he’ll never say it – ever – if he doesn’t get the services he needs.”
https://www.independent.ie/irish-news/hell-never-be-able-to-say-he-loves-me-unless-he-gets-help-mums-fight-as-time-runs-out-for-her-little-boy-41906699.html ‘He will never be able to say he loves me unless he gets help’ – the mother’s struggle when time is running out for her little boy