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Life as the mother of a child with autism

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Siobhan and Sean in 2007

Siobhan and Sean in 2007

Siobhan with her 10-year -old son Sean today

Siobhan with her 10-year -old son Sean today

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Siobhan and Sean in 2007

I have memories -- and the photograph -- of Sean dancing in a pair of blue shorts on a summer's day in the toddlers' pool we had set up in the back garden of our thatched house. He had reddish hair curling around his ears, brown eyes like my mother and handsome features, and he was absolutely delighted with life.

To look at him, no one would ever know the horror that was to come.

To lose a child like I did is horrific because with it go all your hopes and dreams for that child. With the greatest respect to parents who have buried a child, it is the nearest thing to bereavement in the world.

It's been a long, hard road since that day.

Sean, who turned 10 last November, needs routine, has limited speech, overeats, can be aggressive, is sensitive to noise and light, has problems concentrating, and has had toilet-training difficulties.

He's only been out of nappies at night since Christmas, but will wet the bed if he isn't woken up to use the toilet.

When I heard Tony Humphreys suggest that autism could be linked to a lack of parental love, my reaction was primeval. I felt anger, frustration and pain.

His comments caused mothers untold guilt, self-doubt and misery.

Sean is the youngest of my three children -- Anna Kate is 11, just one year and two days older than Sean, and David, our eldest, is 18.

When Sean was nine months old he said his first word, "ta ta". It couldn't have been more run-of-the-mill, but I'll never forget it, and particularly not now.

He didn't take his first steps until he was a year and a half, but I was fairly laid back about it as, in every other way, he was a happy, alert, normal baby. With one exception: I noticed that when I weaned him off his bottle, he never cried for it and didn't even seem to notice it was gone.

At 18 months he was finally walking, but his speech was slow. I was concerned and booked him in for a check-up with the public health nurse, who said he was 'fine'.

By that September, Sean's lack of progress in his speech began to give us serious concern. And in October, Sean's behaviour changed noticeably. He began getting frustrated and head-banging in his high chair. My husband Enda had just started a Master's in product design in an English university, so we speculated that he was missing his dad.

It was at this stage that I forced myself to drag into the realm of the conscious something I'd known deep down for a while, something truly frightening.

Sean had regressed. He was no longer using the words he had when he was younger. He had lost them.

With my self-imposed deadline of his second birthday looming, I had to bite the bullet. I made the appointment at Dunshaughlin Health Centre with a heavy heart. D-Day was November 19, 10 days before Sean turned two.

If we had wanted to be reassured -- and we did, desperately -- we had come to the wrong place. The nurse was obviously alarmed. Sean didn't look at her once.

At this stage, Sean was not responding to his own name and acted as if he was deaf, so we were referred for a hearing test. We knew then that Sean could have autism and were in a state of shock. We had come to the health centre that morning with a child we viewed as normal. Now we weren't so sure.

It was strange, too, looking at Sean through the nurse's eyes. At home he had seemed fine, but in the cold light of the clinic, he didn't seem fine any more. My normal, gorgeous, strawberry-blonde baby was no more.

We duly went for the hearing test to be told within less than a minute that he didn't comprehend language. He was autistic; all we needed now was a professional diagnosis.

We got an appointment with a consultant neurologist. D-Day was January 22. We spent Christmas 2003 oscillating between despair and wild hope.

Around this time Sean began to shut out everyone except for myself and Enda, his father. My sister Clara had built a close relationship with Sean and it broke her heart that he now wouldn't look at her.

Getting the diagnosis on January 22 was devastating on many levels. I have always been a bit of a perfectionist and 'a fixer', and, for the first time in my life, I had a problem on my hands that I could never fix.

I threw myself into the job I loved with the 'Sunday Independent'. I would leave work some days in such emotional pain that it was almost physical.

I fell into a 'reactive depression', something that is quite common when people suffer 'adverse life events'. It was tough, because we had to fight with the State for everything.

We were awarded five hours' home tuition; we fought and eventually got 20.

During these years, Sean would attend a mainstream playschool in the morning and get home tuition in the afternoons.

In January 2006, Sean finally started in Stepping Stones ABA School in Kilcloon, Co Meath, and he'll be there until he is 18.

It is an amazing school. He has an Individual Education Plan. Speech therapy and occupational therapy are incorporated seamlessly into his day.

He loves it there, which is a great reflection on the staff, who are not only specialists in the field but also patient and kind.

In the same month, Ger came to us as a home help. She is a lady who has an extraordinary natural understanding of special-needs children. She has stuck with Sean through thick and thin and is still with us to this day.

Looking back, the early years were the hardest. I'm ashamed to admit it, but when I was feeling particularly awful, I would not want to do for Sean any of the normal things mothers do every day for their children.

I didn't want to dress him. I didn't want to feed him. I didn't want to see him. I just wanted to go to bed and forget. Or go to work and forget. Or go anywhere on this earth and forget.

In my eyes, Friday, September 1, 2006 -- the day he would have joined his sister in the gaelscoil -- was the day that Sean's path in life diverged forever from that of his peers.

I imagined the power-that-be putting a pencil through his name on the class list. Or, I wondered, did they use Tippex? How do you erase a life never lived?

That morning, I was particularly upset and angry. I realised then I needed counselling, and subsequently attended sessions with the senior psychologist with the Meath autism team. It was effective quickly and helped enormously.

Since he started at Stepping Stones six years ago, Sean has progressed, but painfully slowly.

He has moderate autism. Some would argue moderate-to-severe, but I prefer just 'moderate' myself -- everyone needs a little denial in their life. We know that he'll never live a normal life, or live independently.

Throughout, Enda coped better than I did, but, ultimately, the huge additional stress didn't help our marriage and we separated in early 2008.

The separation came just six months after I made the tough decision to take redundancy. The needs at home at that time were just too great to sustain me working full-time.

In the meantime, Sean was difficult every day. His aggression -- both towards himself and others -- increased steadily during 2009, and, finally, with no sign of it settling down, we reluctantly allowed him to be prescribed medication in March 2011.

We had no choice in this matter, as Sean was hitting random strangers.

I'll never forget the time he got frustrated in the Navan Shopping Centre and hit a baby girl, around 10 months old, down hard on top of her head out of the blue when she was sitting in her buggy.

The mother -- bless her -- took one look at Sean, realised that he had special needs, checked that her baby was fine and just let it go.

It is at moments like this that the seriousness of what you're dealing with hits home.

Sean, at his worst, has kicked holes in walls and broken windows.

He has certainly kept my good neighbour Peader, a builder and handiman, busy up to fairly recently.

He's even promised Sean a hammer for Christmas just to keep the destruction going -- he says he just needs to find one 'big enough'. Sometimes, humour alone is what will see you through.

I myself have had to receive medical attention twice because of Sean's aggression. There was a period before he went on medication that I was being hit every day.

Of all the difficulties, I found the aggression sapped my spirit like no other. There were days, believe me, when faking my own death and disappearing forever seem like a very attractive option.

Anna Kate has also taken belts from Sean, something I also found extremely difficult. One of the things you do instinctively as a mother is keep your child safe and, in my eyes, I was failing her.

I had visions of her as an adult coming back to me and demanding to know why I didn't protect her. And she would have been well within her rights to do so.

Thankfully, this has stopped now. Even through he annoys her sometimes, there is a real closeness in their relationship that's lovely to see. For Christmas 2009, she asked Santa for an 'autism dog for Sean'.

Even though it can be obvious when Sean's out in public, by the way he runs and skips, that he has special needs, I never feel one ounce of shame or embarrassment about him being my son.

I am proud of him, and he has taught me more than I've ever taught him. I just feel that autism is in my genes, and I passed it on.

There's high-functioning autism, Asperger's syndrome, in my family. Enda also has a first cousin with severe autism.

Occasionally, you wonder did you did something wrong during the pregnancy. You question yourself. And so you don't need Tony Humpheys to do it too.

The bottom line is, I know I'm a good mother, and Sean -- like David and Anna Kate -- has more love and affection than he could ever wish for.

In the main, Sean is a happy camper now with a really wicked sense of humour. He loves tickles, his bath, his DVDs, his scooter, swimming, the playground, his iPad, Niall Connolly his best friend, and school. He also loves his family and shows it.

He can be difficult, but 90pc of the time now he's in fantastic form, singing to himself and laughing and playing.

I will also never need to invest in a Sat Nav as long as I have Sean -- he really has the most amazing sense of direction. We were all thankful for that last summer when we got lost on the African Plains in Dublin Zoo. He had no difficulty guiding us to the exit.

The biggest problem facing us at the moment is his weight. Despite all our best efforts to keep his nose out of the trough, he is clinically obese.

He will raid the presses the second your back is turned, and even went though a phase of getting up in the middle of the night to see what was edible in the kitchen.

We had him on the 'trampoline and locked kitchen presses' diet for a long time, even speculating that it could become a best- seller.

His weight is being monitored carefully by doctors now.

To have a child with autism is a huge loss, but you learn to recognise that there is a lot worse in life. You survive, you don't allow it to define you, but the sadness becomes part of who you are.

I would cut off my right arm for Sean not to have autism and, come to think about it, I would cut off my left arm too.

Mr Humphreys is certainly not an object of affection for parents of children who have autism. We've saving it for our special children, whom we love very dearly.

Irish Autism Action (IAA)can be contacted on www.autismireland.ie, 044 933 1609

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