The mother of a severely autistic girl makes a painfully honest confession

• Meg Henderson writes a reply to Dominic Lawson who said he would never want to ‘cure’ his daughter from Down’s syndrome
• Daughter Louise is brain-damaged and autistic and mother says disability took an ‘intolerable toll’ on the family
• At 34, Louise is now settled in a special village in Fife where she receives dedicated care

By Meg Henderson

PUBLISHED: 00:59, 28 November 2012 | UPDATED: 10:13, 28 November 2012

Most nights, for more years than I can remember, I have had the same dream. I’m walking along the street, arm-in-arm with my beautiful, dark-haired daughter.

Her brown eyes are sparkling with joy, she’s chatting 19 to the dozen, making me laugh and giggle along with her. But every morning I wake to the same chilling reality. My 34-year-old daughter, Louise, is disabled.

Her speech can be almost unintelligible even to us, she will never hold down a job, have a family or even live by herself. Louise is a scared, anxious little girl imprisoned in a woman’s body.

Her dream is to have 20 children and 20 cats and to marry a man who owns a curry shop, because curry is her favourite food.

Will any of it happen? Of course not. The brutal truth is that Louise’s life is little more than a living death. She can never look forward to the things the rest of us can. And, forgive me for saying it, her problems are a huge burden to herself and her family.

That’s why, when I read in the Mail last week that Dominic Lawson wouldn’t change a thing about his 17-year-old disabled daughter, Domenica, who has Down’s syndrome, I just couldn’t understand his position.

Responding to news that scientists may have made a breakthrough in Down’s syndrome research, Mr Lawson is adamant he wouldn’t want to ‘cure’ Domenica. He says that her family love her just the way she is.

Well, I’m sure I love my daughter, who is brain-damaged and severely autistic, every bit as much as he loves his. And that is precisely why I would lay down my own life to remove her handicap. For her life certainly isn’t — and never will be — a full one.

The simple truth is that Louise’s handicap — and, let’s not beat about the bush, a ‘handicap’ is exactly what it is — isn’t just hard for her to bear, it has taken an intolerable toll on the rest of her family.

I wouldn’t wish the hell we have endured on anyone. Because for many average families such as mine, having a handicapped child is hell. You enter a black tunnel from which you never escape.

Mr Lawson says that having Domenica — whose godmother was Princess Diana, a family friend — has taught him wonderful life lessons.

I’m sure this is true for him. But I must confess that I am tired of hearing about devoted parents who say that seeing the world through a handicapped child’s eyes is a blessing.

Please forgive me for sounding so cynical, but I’m convinced that parents say this only because they need to find something positive in their difficult, if not miserable, situations.

Let me tell you the unvarnished truth based on my experiences. There is nothing positive about a child’s life being limited by physical or mental difficulties — not for the child, and not for its family.

Every family with a handicapped child becomes a handicapped family. That is a fact.

When I married Robert in 1971, we dreamt of having a perfect family. I was 23, he was 36. We set up home on a Scottish island, and were thrilled when our son, Euan, was born in 1976. But we had much more love to give. And that’s why, when Euan was four, we jumped at the chance to adopt two little girls — Louise, then aged almost three, and her sister, Marion, who was nearly two.

We knew the girls had endured a troubled background, but we had no idea that Louise had been brain damaged by previous physical abuse and was also autistic.

Gradually, her problems became clear. She was so hyperactive she rarely slept. She screamed incessantly — a howl that seeped into every corner of my brain. She was four before she said her first word, ‘duck’.

We spent hours painstakingly trying to teach her to walk and talk. She was impossible to toilet train. Even aged four, when left on a potty or toilet, she smeared herself with excrement.

With the reasoning ability and control of a baby, she couldn’t be left alone for a second. One day, she fed the money we kept safe in the house into an open fire.

As a writer, working at home was impossible. Zombified by lack of sleep and the stress of coping with Louise, every day was pure torture. My husband came home from his job as a driver with the local council to a wife who was bouncing off the walls.

Nevertheless, we loved Louise passionately, and were convinced that our efforts would bring eventual improvement.

Yet alongside my zeal ran a terrible guilt. I knew I was short-changing my other children, Marion and Euan. Their needs came bottom of the list; Louise was sucking us dry. Some families are lucky enough to be able to afford hired help when they have handicapped children. Sadly, this wasn’t an option for us. And so the reality of having a handicapped child was that there simply wasn’t enough time and attention to go around. Louise’s needs were a bottomless pit.

Robert and I never attended a single parent’s evening, sports day or carol concert together because one of us always had to stay at home with Louise. Her behaviour also affected the other children’s friendships, for who wanted to come and play when Louise was around?

We vowed we would make it up to them when Louise needed us less. What a pipe dream that was.

One challenge followed another. Because of her autism, Louise needed a life of strict routine, so we couldn’t go on holiday. Our home was a wreck because Louise had no co-ordination. She broke endless music players and TVs.

Euan and Marion are now married with families of their own. Marion, 33, is a musician and Euan, 36, works for BMW. They got good degrees and, on the surface, have good lives.

But — however unintentionally — we blighted their childhood. They suffered from permanent neglect, and I can never make that up to them.

After four happy years, Euan lost the rest of his childhood. I had no time to help him with homework or show any interest in his hobbies, so he became self-sufficient and responsible to an extent that far exceeded his young age.

Desperate for attention, Marion went the other way. She threw temper tantrums, attacked Louise out of jealousy, and sneeringly labelled her brother ‘Mr Perfect’. To this day, she is still a drama queen.

I’m convinced that all families with a handicapped child will recognise that scenario and share the feelings of guilt. It really doesn’t matter what form of handicap a child has — whether autism, Down’s or another condition. Constant care is constant care.

You could argue that Marion was already tied to her sister by blood — but for Euan it was different. Parents are supposed to protect their children, and we failed Euan.

What hurts me most is that there was never any possibility that Louise could have made any real use of the time, energy and emotion we poured into her.

The effect on my marriage was also devastating. Couples split up very easily in similar circumstances, but we managed to cling to and lean on each other, too exhausted to fight.

And if that wasn’t hard enough, we had to fight for every scrap of support from the State.

The grim reality of caring for a handicapped child is that you have to battle for every bit of help, while agonising constantly about the future.

Perhaps part of the reason the Lawsons have had such a positive view of their daughter’s disability is because they have greater financial resources. Providing for and protecting your children is made easier when you have more money.

The sometimes precarious state of our finances meant that it was a constant battle to try to make ends meet. My husband and I worry constantly about what will happen when we are no longer there to provide for our Louise.

For years, the government agencies set up to help us seemed to be doing their very best not to do so. We were told that resources were scarce and that we’d have to cope alone. We didn’t know that benefits such as Carer’s Allowance existed, and — not being benefits savvy — it didn’t occur to us to ask.

When Louise was 14, her behaviour became even more impossible. I was as near as I’ve ever been to collapsing. Desperate, I asked social services for some help. They offered me an hour — just an hour — of respite care. What’s more, it never materialised: I never heard from them again.

So when my daughter wasn’t at school, she was with us 24/7. We even had to take our local authority to court to allow her to attend the local school. They’d wanted her to go to a special school, nowhere near where we live, so she would have had to board. The alternative was to have no education at all.

Even when we won our case and she was in the local school, she suffered terribly at the hands of bullies. Some call it teasing: I call it brutal sadism. What else would you call the laughter, the sniggering, the cat calls, pointing and the staring?

I remember one terrible time when Louise was dragged around the playground on her knees by the older children. She was being their ‘dog’, and didn’t understand it wasn’t just an innocent game.

This bullying places yet another burden on the rest of the family. They feel they have to defend their sibling at school, and so get the same cruel treatment.

Euan and Marion were also bullied mercilessly. They had no real friends. We were even banned from family weddings in case Louise disrupted proceedings.

Louise is just aware enough to know she’s different, to know when idiots make fun of how she talks or looks. But she doesn’t understand why they taunt her, or why they get away with it.

I have no doubt that the Lawsons love their daughter intensely — but even this love can’t protect Domenica from the anguish of isolation that goes with being handicapped.

Mr Lawson admits that she, too, is sufficiently intelligent to know that she is different: ‘She experiences a sharp sense of social isolation, as hardly any of the friends she has made at school have ever included her in their extra-curricular lives, or invited her to their parties,’ he said.

Who would wish this on anyone? Like the Lawsons, I love my daughter regardless of her problems. But I grieve for her and for all that she is missing out on.

Louise was 16 when we finally abandoned the last shred of hope that she was ever going to live a normal life. It was then that specialists finally diagnosed her with a mental illness, as well as severe autism and brain-damage, and gave voice to what we’d feared all along: that she would never become independent.

She is now 34, yet will never have her own home, marry, have children, a job or drive a car, and I see nothing on that sad list I wouldn’t change if I could. Wouldn’t any parent?

Today, our daughter lives in a special village near our home in Fife. It’s a wonderful, leafy campus, staffed by trained carers, set up to house adults with handicaps of every type. It has two farms, various workshops, a bakery, a café and a supermarket — all run by the residents.

Louise does live the best life she is capable of, working in the bakery and the shop.

The local authority pays for Louise’s care, but like all parents in similar positions, we live in constant fear that government cuts will bring this stability to an end.

Louise has been there since January 2012, and for the first time in her life she has friends. Everyone there has some difficulty, and they all support each other.

There’s a closeness and friendship there she has never experienced from the general public, and never would. She is valued as a person, not looked on with the pity, embarrassment or ridicule that have marked her entire life.

So now she is happy — and so, for the first time, are we.

Even so, she often pops up in my dreams as a completely normal young woman, and I wake in tears because I know that she will only ever be like that in my dreams.

Unlike Dominic Lawson, I would pay any price to remove Louise’s handicap. As I said, I would give my own life in exchange. That’s how much I love her.

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