'MY SON BEATS ME BUT I STILL LOVE HIM'

Like all mums, Tina Armstrong, 37, just wanted her son Drew to be healthy and happy. But when he was diagnosed with severe autism, family life as she knew it ended.
In this painfully honest interview, mum-of-two Tina, from Dunfermline, Scotland, describes life with her autistic child. And admits perhaps it would be kinder if her son had never been born at all…

By Cheryl Stonehouse

The walls of Tina Armstrong’s neat house are covered with framed family photographs.

My eyes stop on a picture of a young boy with a mop of brown hair and an easy smile.

The boy in the frame is Tina’s son, Drew. “I sometimes think the way Drew looks is as much of a curse as his autism,” she says softly.

I look again at the photo, taken four years ago, and I can see nothing to suggest Drew is anything but a normal little boy.
But last week, this angelic boy kicked his older sister, Antonia, in the face after a sudden noise in the street outside upset him. Antonia, 10, tried her best to calm her little brother – despite his aggression.

The reason for Drew’s violence and disturbed behaviour is that he is severely autistic – his brain has been ‘wired’ differently – so that he finds it almost impossible to make sense of people and events around him.

The slightest change, such as a chair out of place if Tina has been cleaning, leaves him fearful, screeching at the top of his voice, and lashing out at anyone or anything near to him.

If he can, he will also try to hurt himself, banging his face on a wall or the floor. If Tina gets in the way as she tries to stop him, she takes the brunt of the violence. She is usually covered in bruises.

Initially, Tina tried to convince herself her son was going through the usual phases of childhood, even though he didn’t crawl or talk baby babble and his tantrums were ear-splitting. He was two by the time she went to her GP for help.
“I just couldn’t bring myself to believe there was anything wrong with my baby boy,” she says sadly.

But tests showed Drew was severely autistic. At that moment, life for Tina and her family changed forever.

“I’d never heard of autism. I didn’t know life would become harder for Drew as he got older, never easier. Or that it meant my life, my work, my social life, even my relationship with his father, would all go,” she says quietly.

“After the diagnosis I was just told: ‘Off you go, there’s nothing we can do, he’ll be like this for the rest of his life. Get in touch with social services when things start getting really difficult.’ And that was it.”

Tina hoped if she acted normally, life would be just that, normal. So her mum continued to look after her two children so that she and Drew’s dad could keep working.

But with each passing month it seemed that Drew’s behaviour became more challenging. Tina realised that she had no choice but to give up her job as a skilled joiner to care for Drew full-time.

The few times Tina tried to integrate Drew with other children at pre-school nurseries, he couldn’t cope. He’d scream until he collapsed, or more frighteningly, try to run away – oblivious of cars, people or any kind of danger that he encountered.

To keep him safe, Tina retreated to the safety of the family home. But caring for her son 24/7 took its toll on her relationship. She and Drew’s father split up two years ago. He still lives nearby with his children from a previous relationship.

And Tina is concerned that, as she struggles to mother her disabled son, Antonia gets left out. Her daughter’s only escape is school – there she can relax, see her friends and shrug off the enormous responsibilities she has to bear at home.

It’s an escape that Tina doesn’t have. Before Drew’s diagnosis, she loved being a volunteer with the Territorial Army and had a wide circle of friends. But in the past five years, she’s barely left home except when Drew is safely at school, and then much of her time is taken up with endless meetings with Drew’s social workers and care team.

Recently, Drew’s behaviour has taken a terrifying twist – triggered when his baby teeth started to fall out. Unable to understand why this was happening, Drew has started pulling all his teeth out.

And just last month, he tried to poke his left eye out. Tina stopped him causing any real damage, but it means she can’t leave him alone for even a second. “I hope it’s just a phase he’s going through,” she says.

Now nine, Drew is almost as tall as Tina.

“When he lashes out, it’s not with any intention of hurting anyone, it’s how he copes. But I’m scared of what he might do to himself one day,” she explains.

Their days have a strict routine – a school bus comes each morning at 8.30am to take Drew to his special school. Antonia goes to her school, then Tina spends the day preparing food and cleaning up from the night before. Drew only eats with his fingers, often smears the walls with food and still wears nappies – the contents of which more often than not end up on the floor.

Tina disinfects the house then prepares food for the rest of the day, before Drew arrives home at 4pm. From that point,

Tina has to stay in the same room as him, otherwise he will scream and fly into rages.

She rarely ventures out with Drew unless he’s in his special disabled buggy as the slightest noise can disturb him.

“His buggy looks like a baby buggy only much larger, but I don’t like using it. He looks so normal to strangers that it attracts more attention if he’s in it,” she explains.

“I’ve actually had people come up to him and clap their hands in front of his face and say: ‘You’re a big boy, why don’t you get out and walk and give your mother a rest?’ And, of course, he starts screaming his head off.”

Drew can talk a little now. He also has a book with laminated pictures that he uses to communicate with his family. A picture of food, a drink… even a cuddle.

Tina talks to him constantly, and every now and then he echoes what she says. “Let’s get you ready for school,” she’ll say as she helps him into his shirt. He’ll reply: “School”. It’s little enough, but it delights Tina because she feels she’s being let into his world – just a little bit.

Tina and Drew spend so much time together, however, that the communication book is not always necessary.
“I can almost read Drew’s mind. I know when he’s about to do something he shouldn’t, he looks at me, catches my eye and then stops,” she says.

Much of Antonia’s childhood has been eclipsed by her brother’s condition. If she resents him, she doesn’t show it.
“They play tickle-catch for hours, or Drew gets his building bricks out, naming the animals on each one,” Tina says.
Antonia claps every one that he gets right, and Drew’s smiles light up the room.

 

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She is, says Tina, his second mummy.

“I tried hard to stop that happening, but with every minute of every day focused on keeping Drew safe and calm, it’s been inevitable,” she says.

Recently, Drew’s social worker has taken Antonia to a social group for other children who are carers. She can talk openly there to people who understand.

Less than a year ago, Tina finally accepted the respite care on offer. It had been available for years, but she couldn’t bring herself to trust anyone else to look after him. Exhaustion has forced her to let him attend a special residential care home for a weekend every six weeks. This allows Tina and Antonia to spend quality time together. Antonia can invite friends round – something that can’t happen when Drew’s in the house, because he won’t tolerate strangers.

Tina says she and her daughter are close, but she admits she still feels anxious about her.

“I worry Antonia isn’t getting enough of my attention and will resent Drew, or go off the rails because she’s missed out on so much.”

Tina faces a life of caring for her son, until she is no longer able to. She is exhausted and often has dark moments.

“When I read about parents who have killed themselves and their disabled child, I have no trouble at all imagining how someone could get into that state of mind,” she confesses. “I wouldn’t do that – I couldn’t – my daughter needs me, too. But there’s so little real relief offered to families like ours that I understand how people feel they just can’t carry on.”

Tina explains how parts of her immaculate living room are not quite what they seem – there are pretty statuettes on the mantelpiece. Only a close look shows that they have been glued together countless times. The furniture is cheap and easily replaceable, because when Drew lashes out, devastation reigns.

At night, if Drew decides he’s not going to sleep, even dosed up with sleeping pills and sedative syrup, there is little Tina can do but sit with him and do what he wants. His screeches when he doesn’t get his own way are blood-curdling.

“You find out who your friends are if you have a child like Drew,” she smiles. “Half a dozen friends and neighbours have stuck by us – I couldn’t get by without them.”

Does she ever think about long-term residential care for her son? Tina shrugs. “The nearest place is 300 miles away in Wales. I can’t send him that far away, and I just don’t believe anyone is going to treat him as well as I do,” she says.

When she heard that scientists may have found a way of screening unborn babies for autism, she asked herself what she would have done if the test had been available when she was carrying Drew. “I can’t imagine a life without him. I love him, his sister loves him and, although he is autistic, we know he loves us. I can’t wish him away,” she says firmly.

“But, knowing what I know now, I can easily see why anyone might decide an abortion might be better. I wouldn’t give Drew up for anything, but I wish I could spare him all the suffering that he has to go through every day of his life. I hope he is happy, but in truth I don’t really know what it is like in his world. I worry he is often scared, frightened and confused. And that makes my heart heavy.”

Tina says social services do their best.

“I wouldn’t want to go back to the old days when people like Drew were locked up, but there’s nothing in between one extreme and the other, and families like ours are left to struggle on virtually alone.”

There are bright moments, however. Drew is unusual among autistic children because he loves to hug and kiss the people he does know. “Yes, it’s not all bad,” Tina says, smiling. “I focus on getting pleasure from the little moments.”

Most mornings, Drew is the first up and, like most mothers, Tina’s already awake and tuned in to him. He comes into her room and leans over her, pushing his nose up against hers as he silently stares into her eyes.

“I often think the pressure of his face on mine is comforting for him. It’s strange, but it’s a special closeness, a real connection and he seems so peaceful. During those times I look at him and can see that he does love me and that makes even the darkest moments seem worth it.”

Have your say: Has a family illness changed your life? Do you think screening for autism in the womb is a good or bad thing? Are you a carer for a child or parent? >>

PHOTOGRAPHY: SYRIOL JONES  HAIR & MAKE-UP: BEVERLEY MCCOLGAN AT MODEL TEAM