Friday 19 October 2018

What it feels like to... have four kids with special needs

Parenting is always a full-time job, but when all of your children have a disability or learning difficulties, few people realise just how tough that job is, explains mum Linda Comerford (36) from Kilkenny

Struggle: Linda Comerford pictured with her kids (from left) Darragh, Shauna, Frankie and Michael in Kilkenny. Photo: Dylan Vaughan
Struggle: Linda Comerford pictured with her kids (from left) Darragh, Shauna, Frankie and Michael in Kilkenny. Photo: Dylan Vaughan

I would love to see our eldest son Michael (16) go to college or do an apprenticeship. I'd love for him to come home with a girlfriend or tell me I'm going to be a granny. I'd give up every penny and live in a cardboard box for him to have those opportunities, but those are things that will just never happen for Michael.

I love my kids to death but sometimes it can be a hard pill to swallow, knowing that Michael is never going to have those experiences or opportunities. He's missing out and, as his mam, I'm missing out on them as well.

Michael wasn't formally diagnosed with cerebral palsy until he was around two-and-a-half, but we all knew he had a disability, there was no sense of 'oh, he'll be fine in a few weeks'. I had a very, very difficult birth with him and from the beginning he had seizures. As well as cerebral palsy, he has affected mobility, a moderate learning disability, a profound speech and language disability, he's profoundly deaf and partially sighted.

In some ways I feel it was a blessing he was our first child because I left work and had time to focus solely on him. The downside was being in completely unknown territory. I didn't know anyone else with a child who had a disability. You really just have to find out as you go along. You find out about different support groups - like the Disability Federation of Ireland - different interventions and different entitlements, but the best source of information is other parents, the ones you meet online and at hospital appointments. They're all travelling the same road as you are.

At the moment, Michael is in a special school but it's not long until he'll be 18 and that's a scary prospect. It's well-known among parents that services disappear rapidly when a child turns 18 and we're very uncertain about what lies ahead for him.

I do know he'll be with me for life. All his daily needs have to be prompted - you've to tell him to wash, brush his teeth, check if he's wearing clean underwear, has he his lunch in his bag, batteries in his cochlear implant, has he washed his hands after going to the toilet? This is my normal. Michael has been the way he is from the day he was born, but what's hard is when I step out of my bubble and meet other children the same age as Michael.

Linda Comerford pictured with her kids from left Darragh (11), Frankie (2), Shauna (4) and Michael (16) in Graiguenamanagh Co Kilkenny. Photo: Dylan Vaughan
Linda Comerford pictured with her kids from left Darragh (11), Frankie (2), Shauna (4) and Michael (16) in Graiguenamanagh Co Kilkenny. Photo: Dylan Vaughan

There's a five-year gap between Michael and Darragh and that's not there by accident. It was a big decision to have more children, a lot to consider and a lot of fear in each of my pregnancies. With Darragh (11), everything was fine for a long time and I had no concerns. But when he was older he presented with a lot of sensory issues. He would only eat certain foods, wear certain fabrics and going into big crowds would annoy him. Recently, he was assessed and diagnosed with SPD: sensory processing disorder.

Shauna, who's four-and-a-half, was diagnosed with autism last October. She has no emotional regulation and has a lot of meltdowns. She doesn't have an intellectual disability but because of her sensory issues, she wouldn't be able to cope in a mainstream classroom so she'll be starting in an ASC Unit.

Frankie (two-and-a-half) has been assessed and diagnosed with delayed speech and language, and delayed play skills. He's still so young that at the moment I'd be hopeful maybe these are just delays, but I don't want to be naive either.

One of the toughest things is fighting to get prompt assessment and support. I'm part of the Enough is Enough campaign and the waiting lists for assessment of children's needs are atrocious. Then, even once you've been assessed and they've told you what your child needs, there's no legal requirement for them to provide that therapy. Everything in the HSE is always 'subject to resources'. It can feel like a constant battle.

Every morning I drop the kids to school and Michael goes on his bus. I'll collect Shauna at 12.30pm, Darragh at 2.30pm and home for 4pm for Michael. I'm constantly juggling appointments for all of the children. Going anywhere as a family is really hard. We tried a summer holiday around Ireland a few years ago and it was very stressful, but we're going to try and go somewhere again this year because, to be honest, I have to go somewhere. I feel I'm going to go crazy looking at the same four walls.

Sometimes I struggle with the monotony of every day. My life is the four walls of my house and therapy appointments. I find all I tend to talk about all the time is disability or the kids. Your circle of friends tends to get a lot smaller. There are a lot of times when we have to refuse invitations out and then sometimes the invitations just stop coming. At the moment, we're going through a lot with the kids and I feel like I'm constantly in fight or flight mode which is draining.

After a day of dealing with meltdowns, my husband comes home and wants to talk, but sometimes I just don't feel like I've the headspace. It's like I know he's talking to me and I'm trying to listen but I can't hear him. We don't have the same opportunities to go out just the two of us and it's hard work to maintain a relationship.

We get five hours of home support a week and they are only for Michael. You can only get them for one child and you're not allowed to leave the house unless there's another adult there. That's something I can't understand. Our home support worker is garda vetted, trained and professional. I would trust her with my life - I certainly trust her with my kids. It would mean so much to me just to be able to go out and sit on a park bench for a little while, but I can't leave her alone with Michael and she can't take Michael out of the house.

I know people will say that parenting is a 24/7 job for everyone and 'sure it's your child, you'd be minding them anyway' but there is a difference. You will not be washing your child when they are an adult, you will not be changing their incontinence wear, you will not be going to disability appointments and fighting for their rights. Your day will come: your child will get potty trained, meet milestones, go to school. The worries and stresses between being a 24/7 parent and a 24/7 carer are very, very different. I will never retire.

In conversation with Chrissie Russell

Irish Independent

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