‘Without him my life wouldn’t be the same’

Niamh Cadogan died on Monday, having dedicated her life to helping others.In an article written last year, she talked about how her brother Stephen inspired her to help families with autistic children

My name is Niamh and I have a brother called Stephen.

He is one of the most loveable people you will ever meet, and will always either give you a huge hug or a big high five.

However, Stephen is not like any other little 10-year-old boy and you don’t realise this until you try to talk to him, or vice versa.

Stephen likes to have things his own way, and God help you if he doesn’t.

There is a reason why you think my brother acts like a spoilt brat. It is because he has a disorder called autistic spectrum disorder (ASD).

Autism is a disorder of neural development characterised by impaired social interaction and communication, and by restricted and repetitive behaviour.

It means that his brain does not function in the same way as yours or mine. Our brains function mainly in words, and someone with autism has a brain that functions primarily in pictures.

They do not say very much, and therefore need picture prompts to communicate with other people.

At present my brother uses a large blue book called PECS. This stands for Picture Exchange Communication System.

It is a book of tatty laminated pictures with Velcro strips attached, which can be arranged together to form a sentence. It is awkward and bulky and no one likes it.

The idea for a project came about was when I was watching RTÉ news last April. When our family hears about autism on the news, we automatically sit up and listen and just presume it’s another family fighting a court case for their autistic child.

But to our amazement, it was actually good news. Here was a mother of two autistic children who has developed an application for people with autism for the iPod. It was called the Grace Application, which she named after her daughter Grace. This marvellous woman is called Lisa Domican.

After seeing her news piece I contacted her and communicated with her regularly on the internet and by phone.

She has shown us that there is a way of improving the lives of people with autism, and she is now one of my role models in life as she is so inspirational.

Family life can be extremely hard when you live with someone who has autism. Our life is very structured. Every morning, regardless of school days, weekends, holidays or any sort of occasion, a sleep-in in the mornings goes completely out the window in our house.

My brother is like an alarm clock. Every morning without fail he wakes up at 7am and might wake in the middle of the night and proceeds to give us all a rousing rendition of Jingle Bells in the middle of July.

He might not have great speech but he is a great singer.

An early start for some, but not for us. It starts by shouting “Mommy”,

repeatedly, until our mom is forced to get up.

So this behaviour forces us all to get up and do what the day brings.

He spends countless hours on the laptop, watching videos online. He has an obsession with collecting DVDs. We could open a shop, and hire them out at this stage. But he doesn’t like sharing them, especially when they’re my own.

If you hadn’t already noticed, the things he likes to do are things that you do on your own. My brother likes to be by himself a lot of the time. Sometimes this is because he finds it a lot easier. What people say and the games we play can be very confusing and frustrating for him. There are lots of things that make being around people hard for him.

My brother doesn’t see the importance of being polite, like saying “please” for example.

A lot of people think he is being rude but he doesn’t understand that people find this very important.

Families with autistic children in the Skibbereen area (this covers an area from Kilbrittain, Glengarriff, Goleen to Castlehaven which covers a radius of over 65km) are all very united. When we began our project, the whole community wanted to help in some way or other.

Stephen and I are both very different, and we both like doing things on our own. However we do like to spend some time doing things together:

* We both share a love of horse-riding which we both learned together last summer. (He’s better at it than I am).

* We both share a love of kayaking, however I always seem to be the one paddling the oar, while Stephen gives directions where to go (usually out to sea).

* We both love to cook together. Our favourite is double chocolate fudge cake. No need to clean the mixing bowl after he’s finished with it.

* We both love swimming. Once again he’s better than I am.

* We both love to use the computer. Thankfully Santa brought him his own one for Christmas, because it would be next Christmas before I’d get the opportunity to finish this report.

He made me what I am:

* I am a non- judgemental person.

* I see people in a different light.

* I tend to be more caring and gentle towards everyone.

* I have a more solid knowledge of autism and other disabilities compared to other people my age.

I wouldn’t swap my autistic brother for the world, and I am so proud of his achievements, without him my life wouldn’t be the same, this project would have never come about and I would have never met some of the most inspirational people that help him and his classmates.

And most importantly, I love him to bits!


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