‘Having a child with learning disabilities means you can be quite alone... and it’s hard’
ORLA Watt (47) is a mum-of-three and full-time carer for her teenage son, who has learning disabilities. Here, the nurse from Downpatrick, Co Down tells how working with social enterprise group Parent Action helps alleviate the social isolation that can come with being a full-time carer. She says:
Iused to be out and about all the time. I had a career I loved as a nurse, had loads of friends and a good social life. Christmas to me meant fun and enjoyment, nights out with friends and visits with family.
But things can change when you have a child with learning disabilities. My son — our second child — was diagnosed with autism at twoand-a-half.
It has often felt like we’re on our own, left to figure out by ourselves how best to communicate with him and make things easier.
At seven, he was diagnosed with chronic anxiety. He had big behavioural issues, and for a time he didn’t have the place he needed at a special school.
It was around this time I stopped work.
There is a complete absence of affordable, accessible childcare for kids with disabilities in Northern Ireland.
I’ve always been a social person, but it gets hard. People have to get on with their own lives and when you say no enough times, then you stop getting invited to stuff.
Christmas is actually okay for us. It’s a day where we barely get out of our pyjamas and we can relax and sit around together without feeling left out because it’s what everyone else is doing, anyway. I have two other children as well and it is time I can give to them because for the most part he demands more or less all of my time.
Christmas can be a time for everyone to take the foot off the gas for a little while because so much of the time things are quite hectic.
Making contact with other people in similar situations through our social enterprise group Parent Action is a real lifeline. Everyone understands what the others are going through. We know why we’re stressed and tired — everyone gets it.
Parents like us don’t have that lovely opportunity to meet at the school gates like other people have. We’re more isolated than that, and our kids can turn up to school in a bus or a taxi. There’s nowhere to congregate so if you don’t go out to find people like you, then the chances are, you won’t.
You’ll be left on your own. And that isolation really is awful, and when you realise your freedom is very much gone, and you really can be quite alone — especially at times when your child is not well — then it’s tough.
The State is really failing a lot of us here. There are times you honestly don’t know where to turn for help with your child and the services simply don’t exist.
The best thing for parent carers to do — in fact all carers — is to seek out people in the same situation, and as well as Parent Action I’ve had great support from Carers NI.
Through these organisations you’ll find other people who will understand your situation, they’ll know why you’re tired or why you turn up for something late, and you’ll find that network you’ve been missing out on.
It really is a lifeline and eases that sense of being on your own. It’s so vitally important.”