Boy pens letter to reveal need for respite care

MY name is Stephen and I’m a 14-year-old boy living with a sister who suffers from autism and ADHD.

Life is very hard having a sister with special needs – it’s all about Lorna.

The mornings are always a struggle in our house, as it’s Lorna’s way or no way. She dictates when she gets up, how she gets washed, and even the way I eat my breakfast. If I go against Lorna in the slightest way, all hell will break loose.

I have often gone to school upset after Lorna has slapped me several times, and the constant screaming gets in on me. This is not a nice way to start the day. It all depends on Lorna how peaceful or disruptive the morning will be.

The only peace I have during the day is when I am in school as Lorna is home when I arrive home. We have to keep the kitchen door locked constantly as Lorna would eat all day if given the opportunity.

Lorna restricts where we go and what we do as a family. For example, if we go some- where and Lorna has a tantrum, this may result in us having to leave.

I have missed out on my childhood due to the fact that Lorna wants constant attention from me, as she has no friends.

When I have my friends in the house, she is constantly in on top of us, and wanting to do her thing by turning on a DVD and watching what she wants to.

We also have many good times with Lorna, eg, when we went to Limerick to see her participate in the Special Olympic National Games. I love Lorna very much, even though I find it extremely difficult to live my life through hers.

This is why respite is a great benefit to my parents and me. It means I am treated like a normal 14-year-old, and can do things a normal 14-year-old would do. Even though we only receive one night a month respite, which has now been cut, I looked forward to having it as it gave me time alone with my parents.

Lorna also benefits from respite, as it is the only place where she has a few friends. Lorna has progressed greatly with the services she has been receiving in her school, St Vincent’s.

In my own words, these are great and badly needed services for users and their families, which are being cut.

This is my story as I live it.