Mother of four children with special needs describes her day
‘It is unbearably frustrating as everyone keeps fobbing us off,’ says Linda Comerford
Linda and Frank Comerford with their four children - Michael (16), Darragh (11), Shauna (4) and Frankie (2).
From the moment they are born, we all vow to do the best for our children – loving and caring for them and looking after their every need until they are capable of fending for themselves.
And, even then, cutting the apron strings can be hard.
But some parents spend their entire lives looking after every aspect of their child’s life as they will never be fully able to take care of themselves.
Linda and Frank Comerford from Kilkenny have four children: Michael (16), Darragh (11), Shauna (4) and Frankie (2). All four have extra needs which require their parent’s attention, 24/7.
Linda is their full-time carer and says the stress and strain of her daily life is a burden which is often too heavy to bear.
“Michael has cerebral palsy, a moderate intellectual disability, is profoundly deaf and also has other issues,” she says. “He requires constant care and attention from the moment he gets up: I have to wash him, do his teeth, organise his clothes and help him to eat as otherwise he will make a terrible mess. The same goes for the toilet as he doesn’t clean up after himself.
“Darragh has been waiting for an assessment of needs for over two years, which is appalling
“Meanwhile, I have to watch the other three. Shauna can’t be left alone as she has huge behavioural issues and is a flight risk which means she will run off in an instant. She also has terrible tantrums and has broken practically everything in the house, from microwaves to phones and laptops. Everything has to be kept out of sight or she will break it.
“Darragh has been waiting for an assessment of needs [from the Health Service Executive] for over two years, which is appalling. And while he doesn’t require as much watching as the other two, he has very precise sensory needs.
“Frankie has a fascination with water and is always turning on taps so I also have to keep an eye on him at all times. He has been referred for early intervention as he has delayed speech and language problems as well as some behavioural issues – but we are also still waiting for him to be assessed.”
Once Michael has gone to school, Darragh is then dropped off and Shauna does to playschool for a few hours. During this time, Linda takes her youngest child with her while she goes shopping, picks up medication, arranges appointments and tries to get some housework done. She feels she is always one step behind.
“There is always so much to do while they are at school,” she says. “I have to pick up Shauna at 12.30pm and sometimes I haven’t even managed to wash the dishes from breakfast let alone get upstairs to make the beds before I collect her. Then it’s full-on again as she races around the house, jumping up on furniture before I have to go and collect Darragh.
“I try to get his homework and the dinner preparation out of the way before Michael comes back because, by that time, I don’t have a second. He either returns in a bad mood and can be very upset, or is in a good mood and will want my total attention while he lists the members of a soccer team for the 80th time that day. If I am not listening properly, he will start to cry and that could be that for the evening – it’s exhausting.
“There are some days I don’t even get the chance to have a shower until Frank gets home from work and then, between us, we take Michael and Darragh to various activities [Frank is a basketball coach for Michael’s team which is training for the Special Olympics].”
Lack of support
Linda is at her wits end and says the lack of support she has received is unacceptable.
“Sometimes I don’t think I can cope with everything as I can’t spread myself any thinner,” she says. “Unless they have experienced it, no one can imagine what it is like for us. We never get a day off or a night out together and we can’t take the kids anywhere as Shauna would cause too much trouble.
“But, aside from that, the worst thing is that we are constantly being pushed from one person to the next and being told that whatever service we have been referred to [for Michael] isn’t the right one. We waited for two years to get an appointment, then sat through it only to be told that it wasn’t the right service for him.
“It is unbearably frustrating as everyone keeps fobbing us off – with Michael and also the other children, whose appointments we have been waiting years for. The HSE and the Government are saving millions each year because people like us are looking after family members who need round-the-clock care – but still they don’t recognise how much we do.
“I would never, ever put my children into care but if I did it would cost the Government 10-times more than it does now, so why won’t someone help us to do the best we can for our children?”
The Kilkenny woman says the only real help she gets is from Family Carers Ireland (FCI) which, together with its members, understands how hard life is for the family and offers practical support.
“In the summer of 2015, I was going through a really hard time, on the brink of burning out entirely; [I] was suffering from terrible anxiety and was on medication,” she says. “I contacted FCI and told them I was unable to continue. I was living on autopilot and was utterly overwhelmed with everything I had to do each and every day without a break.
“They set me up with some counselling and although things are still really tough, it has helped – but it’s not enough and the Government needs to do something. The Taoiseach said in the last budget that he wanted to help people who ‘got up early in the morning’, well not only do I get up early but I am also up several times during the night as well.
“There is a perception out there that carers are living the high life and getting loads of benefits, well I can assure you we are so far from the high life it’s unbelievable and our allowance barely covers the basics, plus we have to keep being reviewed for everything we get over and over again.
I feel like I am a hurdle jumper, just jumping one after the other with no end in sight. I, and others like me, can’t go on like this for much longer. I may be smiling on the outside, but there are days that I am dying inside and I am pleading for the Government to do something to make things better for the carers of Ireland. ”