Stop forcing our vulnerable parents to beg for the most basic services
WHEN a child is born with, or develops, special needs, there’s a whole spectrum of different kinds of unfairness involved. And for their parents, it has to be hard at times to ignore and not dwell on the hand they have been dealt – no matter how magnanimous and accepting you might be.
Because regardless of how cherished, loved and unique they are, there is one indisputable fact – life will be harder for them than those children who do not have a disability. It will also be harder for their family, who will have to adapt their lives – often quite dramatically – in order to provide the supports and basic needs their child will require.
On a day-to-day level, it can be exhausting just to get them up and dressed, as Triona Ní Eigeartaigh described to me in such vivid detail this week. Her seven-year-old son Ruadhán has Pitts-Hopkins syndrome and has profound intellectual and physical disabilities; he’s also on the autistic spectrum.
‘We’re so far removed from normal,’ she told me. ‘You forget how far because it becomes your normal. He can’t do anything for himself. He sleeps in a cot in our bedroom, he’s seven-and-ahalf and he’s getting heavy, but we have to lift him out of the cot each morning.
‘His nappy has to be changed, you need to dress him, place his limbs into the correct parts of his clothes, he doesn’t help, he doesn’t cooperate.
‘Then you carry him down the stairs, strap him into a highchair, spoon feed him his breakfast, bring a cup up to his mouth so he can drink, give him his medicines, lift him into the sitting room, put on his leg braces and his coat, and then walk, holding his hands, out to the school bus. That’s our normal morning.’
Triona and her husband Ross have two other children – two daughters. They also both work. She cried as she described how exceptional her company has been to her since Ruadhán was found to have special needs.
Once the initial shock of his diagnosis had sunk in, Triona and Ross were determined their son would have the best life possible and set about getting supports that would help him develop to his full potential.
It soon became clear to them, Triona told me, that what was offered to them here in Ireland would be of little benefit to him. They went abroad, and money was given to them by various family members to fund their trips. They’ve also spent countless hours on home therapy programmes, which they say have given Ruadhán a quality of life he could never have hoped to have if they had just relied on what was available to them here.
And now they are fighting, along with the other families at Carmona School in south Dublin, to retain the first significant bit of respite and therapy Ruadhán has ever had in Ireland.
Andrew Geary is also fighting for basic services for his son, Calum, who was born profoundly deaf. I met the family at their home in Co. Cork back in June 2012 when Calum and his twin brother Donnacha were just toddlers.
‘Donnacha doesn’t realise that Calum can’t hear – he speaks away to him as you can see,’ their mum Helen said at the time. ‘And we’re delighted about that because it will help Calum develop his own language skills.
‘We were told from the start by doctors that we were lucky Donnacha is there because he drives him on. For instance, it really got to Calum that Donnacha was walking around first. The frustration was building up but then he started walking and it was such a highlight.’
So imagine this family’s anger and desperation that now, after years of them doing their best to make sure their boys have equal chances in life, Calum is falling behind through no fault of theirs.
Donnacha, who has full hearing, has just started secondary school, while Calum is repeating sixth class. And when he does start secondary school, it looks unlikely that he will have an inclassroom Irish Sign Language (ISL) teacher and interpreter, which would be imperative to his continuing his education.
Calum’s first language is ISL, which, thanks to the 2017 Irish Sign Language Act, is one of Ireland’s official languages. ‘We are not talking a huge outlay for the State to fulfil its constitutional duties here, and it would mean that Irish children like Calum would not be left behind,’ Andrew said yesterday.
He also told how they will go to the High Court to ensure Calum gets the education he is entitled to, even if it means they have to sell their family home to fund their legal challenge.
Both these stories were brought up in the Dáil this week. It was quite unbelievable to hear the details being read out by TDs in the chamber, detailing how some of our most vulnerable citizens, who have already dealt with bitter blows, are now having to literally beg for the most basic of services for their children.
And these are the parents who have the energy, education, connections or know-how about where to go or who to tap for help to get their situations addressed. How many others have fallen through the cracks?
Our services for children with special needs have never been adequate – just ask any traumatised and desperate parent who has gone seeking help. Often the only viable route left to them is expensive private therapy. Or, as one of my friends has done in the past on the advice of a social worker, exaggerating a child’s developmental issues in the vague hope they might get a session or two with an oversubscribed therapist.
In a week where the row rumbles on about who or what should be included in any possible ‘thank you’ package for those who did their jobs during the worst times of the pandemic, you have to wonder if there is an appreciation of what true hardship or exhaustion is.
The kind experienced on a daily basis by the parents of the children of Carmona School.
‘You’re talking about a cohort of people who are already under the most extreme strain,’ Triona explained. ‘Some children in the school have life-and-death issues, some are on oxygen because they can’t breathe properly, some suffer severe seizures.’
Give them what they need, stop making them beg. Life has already been unfair enough.