ON WORLD autism awareness day one mum talks of her determination to get more support for her autistic son
Aileen McCallan (45) is mum to Christopher (15), Cian (13) and Laura (7), and does her best to divide her time equally between her children, yet her son Cian's autism means she can never take her eyes off him. Here's her story.
I walk around with a bunch of keys in my hand and lock every door behind me so Cian is shut in. I lock the front door, the back door, the door to the living room, the bedroom doors, and the door to the ensuite.
Last night Cian escaped when a friend called over and went running down the main road. I went running after him and that is what I do all day, I run after Cian.
He might have gotten it into his head that he wanted to go to the DVD shop, or to a house where he knows there are toys.
My son has a large vocabulary but he doesn't use it the way I would, or he chooses to be silent, so I have no way of knowing where it is he actually wants to go.
I would say that Cian has no sense of danger at all. As a young child he would climb over the counters and swing from the curtains. He will take a stranger's hand. I have to have my eye on him constantly, I am always waiting for him to bolt, and live in fear that he will do himself some harm.
He has no sense of a closed door which isn't locked either, and while his seven-year-old sister Laura loves him, she doesn't love his behaviour all the time, and he can torment her by going into her room and playing with her perfumes.
Autism is hugely complex, and each child is different. Cian craves sugar, and we have to keep the kitchen presses locked at all times. Child locks don't do the job, as Cian is now 13 and strong.
He is always fascinated with how things work and doesn't think twice about taking the remote control and breaking it in half to have a look inside. I think I have bought 20 remote controls in the past couple of years, as Cian's brother Christopher likes to watch the television.
Some experts say autistic children don't feel emotion, but they do. We were in a bike shop recently and bicycles were tied up and Cian got it into his head that they were broken. He was utterly desolate at the thought of a broken bike and lay on the ground and wouldn't move for more than an hour.
His sense of empathy came out when he was three years old and I was sitting at the kitchen table and crying because I was so exhausted from trying to calm him.
He started pulling at me and wouldn't give up until I started to move. He pushed me up the stairs and I thought he was telling me he wanted to go to bed. But instead he awkwardly pushed me down onto my bed and pulled the duvet over me.
He went and stood at the window staring out.
My life as Cian's mother is one of utter exhaustion but I do not believe my son needs medication or sedation, I believe he needs stimulation. His autism all but disappears when he is engaged in activities he loves, such as horse-riding or swimming or trampolining. Or travelling in a car.
He only has one mother though, and I do not have boundless energy or the money it takes to pay for all these activities. No one talks about the expense of autism, but it drains every penny.
I spent the first years of Cian's life on my knees teaching him how to engage with life. Small things could be traumatic for him, like getting into a car. His senses react differently to other people's; for example his sense of taste is different and he cannot have metal in his mouth, and so can't tolerate eating with a fork or spoon.
Cian's food is all finger food as a result. I would rename autism as a sensory processing disorder as Cian processes all his senses differently to other people.
He has to touch everything he sees, for example. He doesn't have to smell everything but some autistic children do, and they smell everyone they meet and everything they touch.
Cian processes how he sees differently, and blinks all the time. Bright light is not his friend and he likes to sit in darkened rooms during the summer, or to put on my sunglasses.
I have seen students in his class get terribly upset by noise, even by Cian's light humming. Sometimes Cian will put his hands over his ears but he can tolerate more noise than other children in his class.
I have faith in myself as Cian's mother and I also have faith in the community which surrounds us in Buncrana. I have no faith in the Government. I have had one weekend respite so far this year. I had three days respite last year.
Next year there will be no place for Cian at the school he attends and which supports autistic children. He will have to leave school when he is 14 years old and after only starting school when he was eight. If I woke up in the morning thinking about this, I would be in a state of constant despair. I am constantly shattered as it is, tears are never far away, and I'm not talking about an occasional upset, it's every day.
I know my son is a darling, and I know he shines light on people all the time and shows them up and shows that he isn't the one who has the problem.
People in shops can get impatient but he shows them up to be lacking in understanding and kindness for others. He shines the light on me, his mother and at times I end up laughing and thinking, and I'm the one who thinks she knows what she is doing.
He shines the light on our Government which lets him down each and every day. Their cutbacks and taking money and support away from the most vulnerable in society is beyond shameful. On World Autism Awareness Day I would like to take the opportunity to ask for what I have been asking for years, for the services and support my son Cian deserves.
A World of Our Own, by Aileen McCallan, published by Poolbeg, price €14.99