Harry Cullen is 11 years old and attends Teach Saoirse, Enable Ireland’s Respite centre for children in Nenagh, Co. Tipperary. Harry’s mum Mairead talks to us about the importance of Respite Services for children like Harry and their families.
“Harry is a very social person and loves being with people. When he was born he was diagnosed with epilepsy and Cerebral Palsy. He is a wheelchair user, is peg fed and requires 24 hour care and a lot of different medication on a daily basis. He is also non-verbal but he understands everything and is very clued in to everything going on around him. Harry can always tell us what he wants! He’s a bit of a messer and a very happy kid.
Initially when the offer of respite from Enable Ireland came I was nervous of him going. But I knew I had to trust and let him go. Giving your child, especially a child with such complex medical needs as Harry, to someone else to look after is really hard. It took a lot for me to let go and to know that he would be fine. That he would be well looked after there. That can be very difficult for parents initially.
When Harry goes to respite it allows us as a family to have a break. Harry has a younger brother, Leo, and we get to take him to the cinema or go out for a meal. With a two day respite stay, my husband and I might get a night out as well for ourselves. I can relax because I know that Harry is being taken good care of at Teach Saoirse. The staff there have a vocation, it’s more than just a job. For me, it’s a break. I don’t have to get up and prepare the food, the meds. Don’t get me wrong, I love being mum to Harry, that’s my job and my life as a mother but it is so important when you have a child with additional needs to be able to get a break for yourself and to be able to meet up with family or friends and have time for yourself.
Respite is also a break for Harry. He gets to be with other people and go off to the cinema and other activities. It’s a fun time for him. He loves the banter and the chats. There are other girls and boys there who are like him and some he knows already from his school. It’s so important that he gets to be with children who are like him. They are all mad about Harry! It a break for him from the usual day to day routine of school, physio exercise etc. He gets to chill out and he knows it so well that he is very happy there. The staff are really good with him.. He’s just come back from spending the weekend in Teach Saoirse with Enable Ireland. He’s wrecked, it’s like he was partying all weekend there!
We’ve been with Enable Ireland from the start with Harry and they have been fantastic. We are so lucky to have the respite support. During lockdown last year, we didn’t send Harry to respite and it was tough on everyone. It was too much of a risk and we had to be so careful with him. If you have a child with a disability, it is a hard road that you are on and we know there are lots of families in difficult situations, some maybe worse than ours. So many other families don’t have access to respite and it is so important to be able to give families a break. To take care of themselves and other children in the family. These are all the things you have to think about when you have a child with additional needs in your family.
When Harry was younger he spent a lot of time in hospital and I would have had to go with him sometimes for weeks at a time. That was very tough on the whole family, especially Harry’s younger brother. Thankfully the last few years for Harry have been really good. He’s gotten taller and stronger and hasn’t had a seizure since 2018. Harry has a fantastic personality. Anyone who meets him is besotted with him. For a child with some many additional needs, he never complains about anything. He’s still smiling even when he is not feeling well.
It is hard to put into words what respite means to families of children with disabilities. Just to give us a break. Especially after Covid, it is needed now more than ever. We feel so lucky to have this service from Enable Ireland and there are so many other families and children out there who need respite services.”