Wednesday, March 14, 2007

A Mother Describes Some Unpleasant Autism Realities

CAUTION: The attached article from the Daily Record in the UK describes in graphic detail some of the realities of living with, loving, caring for and actually raising a severely autistic child. The realities described in the article are not the sweetness and light version of autism popular on many internet blog sites. They are realities similar to those described by the parents of the Autism Every Day video who were vilified because they described them publicly. I love my son with all my heart but I can confirm as the father of a severely autistic child that I have experienced and seen much of what is described in this article. For those who are offended by unpleasant truths about autism, skip this article.

http://tinyurl.com/25xz6p

13 March 2007

DAILY HELL OF LOVING A LITTLE BOY WITH AUTISM


He bites, kicks and punches. He has torn down the curtains, broken a tumble dryer, flooded the house, binned all his clothes and wrecked doors and a bed. He slashed a sofa and ate the foam. Ian is just SIX
By Natalie Walker

DESPERATE mum Linda McIntyre told yesterday how she feels she has been abandoned with her acutely autistic son.

Single mum Linda, 42, is near breaking point trying to cope with six-year-old Ian, who suffers almost constant violent mood swings because of his condition.

She says the lack of support - coupled with cruel comments from strangers who do not know about Ian's condition - has left her at the end of her tether.

Ian was diagnosed as autistic at 18 months but Linda says social workers and education chiefs have turned their backs on him.

Since he started school last August, she has been asked to take him home 25 times and is now caring for him round the clock.

Linda, from Balornock, Glasgow, said: "It's one thing after another and I don't know how much more I can take. I keep thinking of that mum who killed herself and her autistic son by jumping off a bridge. I know why she did it."

Mum-of-five Alison Davies, 40, of Stockport, Cheshire, leapt to her death with her son Ryan, 12, from the Humber Bridge last year.

Her friends said she had been let down by social services.

Linda said last night: "I just don't want to get to that stage. But without some more help and support I only fear the worst.

"And it would help if people who see mums and dads with kids who are playing up would think twice before judging.

"It is likely that child has a disability like autism, so they should think before they say anything."

Mum-of-two Linda says she has no social life and it is more than a year since she had a night out. She added: "I am at breaking point and I feel like I have nowhere to turn.

"I just wish the people who are so quick to judge me and Ian would spend a day in our shoes.

"They'd never cope. But it would let them realise that Ian is not a bad boy, he is ill.

"That is why he kicks and bites and screams. He can't help it.

"If I could wave a magic wand and make it all go away, I would. But I can't.

"I love my son to bits and will fight to defend and protect him like any mother would."

In recent weeks, life has become even worse for Linda, whose daughter Melanie, 20, lives in Preston, Lancashire, with her boyfriend.

She was called to Ian's special needs school to be told he had been playing with a guillotine.

Since then, she has refused to let Ian go back to Glasgow's Gadburn Primary School as she fears for his safety.

She said: "Every day, there are new challenges to face and every day is like climbing a huge mountain.

"Ian has no sense of fear and you have to keep an eye on him all the time. He'd jump out of a window or cut himself or throw himself off something for fun. He has no idea it could kill him."

Ian has also started copying behaviour he has seen at school, biting, kicking and punching people, including Linda and her disabled uncle.

He has torn down two sets of curtains, broken the door of the tumble-dryer, flooded the kitchen and bathroom floors and thrown almost all his clothes in the bin.

The six-year-old has also broken a bed, bashed in the living room door, slashed open a sofa and tried to eat the foam from it and covered sheets and carpets with make-up.

His mum has had to tie ropes to all the doors and windows of their three-bedroomed home to stop him hurting himself.

On top of this, she has to change his clothes up to nine times a day because he is incontinent. Sometimes, he goes to the toilet on the floor.

And Linda can't remember the last time she had a proper night's rest as she can spend up to five hours trying to get Ian to go to sleep.

She said: "Things are now so bad that there are days when I do think the worst. I used to be able to go out with Ian but not since he started school and picked up bad habits.

"I don't drive, so we have to get the bus. But the last time we were on one, Ian started pulling people's hair.

"I can't even go out shopping with him because he hits total strangers.

"The other day, he punched an older lady in the stomach. Her husband went absolutely crazy at me.

"And when we were in the supermarket the other day, Ian started banging his head off the floor and started this high-pitched scream.

"Within seconds, there was a huge crowd around us. Someone chirped out that I was a terrible mum and should not let my son do this.

"It is only when I screamed out that he had autism that they stopped staring and walked off, feeling guilty. This happens all the time we are out."

In the last four years, Linda has only had two days of respite care offered to her, when a couple took Ian to their home to give her a break.

She has been begging for meetings with social work and education officers since last December to try to get more help. And she is furious his school keeps sending him home.

Social workers have also refused to give her cash to repair broken locks and her tumble-dryer.

Linda said: "They say they are not essentials. But they should try living with an incontinent child."

The mum noticed Ian's behaviour changing since his MMR jab, she says.

She added: "Until then, I had a loving wee boy. And then it was like one day he went into his own world. He wouldn't hug me or speak or even look at me. It was heart-breaking.

"To this date, I have never been able to prove it was the MMR but I am convinced it is to blame."

The National Autistic Society say they get thousands of calls a year from carers suffering from depression and feeling the strain of looking after someone with autism.

A study by the charity discovered only 15 per cent of parents received any support from social services.

And it highlighted how a third of families waited more than a year before their children received support at school.

There are about 45,000 autistic children living in Scotland and experts believe the condition is becoming more common, affecting 50 in every 10,000 children compared with five in 10,000 some 20 years ago.

A spokeswoman for Glasgow City Council said: "Ian's school has been working closely with Mrs McIntyre over the past few months to address Ian's additional support needs.

"A multi-agency meeting has been arranged for next Tuesday which will give further consideration to the supports required in both the school and home setting."

The National Autistic Society helpline is on 0845 070 4004.

4 comments:

Anonymous said...

Mr. Anon says,

Like I said before, can you point out one single place where it mentions how the child is feeling? I've seen this behaviour first hand. Yes, blame autism. That's why he's doing these things. Keep telling yourself that. How's that working out for you?

You can ignore my comments, but hopefully some of this will sink in. Look at the article. Where's the child in this other than a monstrous circus act? There's a real person in there. How would you feel being described in this fashion? I can just imagine what is said at home if they're willing to describe the situation in this way in public. Yeah, that's a sure way to make the child more responsive.

Don't you understand? Blaming autism is blaming the child. This attitude will get you nowhere.

Tell me I'm wrong. Show in your next blog entry where in that article the child's feelings and needs (and not the ones for the parent's to cope) are represented? Tell me I'm wrong. It's ok. I'm used to it.

Autism Reality NB said...

You are wrong Mr. Anon.

The mother, who is not anonymous, and who obviously cares a great deal for her child, is trying to better her child's life. She indicates clearly that he has no fear and engages in dangerous behavior to himself and others. The mother is obviously concerned about her child's welfare.

"Ian has no sense of fear and you have to keep an eye on him all the time. He'd jump out of a window or cut himself or throw himself off something for fun. He has no idea it could kill him."

passionlessDrone said...

Hi Mr. Anon -

You are wrong.

"I've seen this behaviour first hand. Yes, blame autism. That's why he's doing these things. Keep telling yourself that. How's that working out for you?"

You make it sound like all of the NT children out there exhibit the same behavior as described in this article. Common sense tells us this is not the case; thus, there must be something different about this child. Coincidentally, many children with autism display similar behavior. Perhaps they all have feelings or needs to act this way that is completely unrelated to their autism. If anyone is feeing themselves a line to swallow, it's you.

"There's a real person in there. How would you feel being described in this fashion? I can just imagine what is said at home if they're willing to describe the situation in this way in public. "

Would you prefer a false description of the situation in order to spare the child's self esteem? Say a couch has never been eaten, when it has? Say the child has never been kicked out of school when they have? Say the child is not incontinent when they are? To what end?

This article is about drawing attention to a problem much more pressing that a child's self esteem. Without help, this child may never be able to function in the world without one on one assistance. He may never read a book, drive a car, kiss a girl, or get a job. The idea that if everyone just says everything is great, his self esteem will be just fine is much more dangerous to this child than speaking the truth.

"Show in your next blog entry where in that article the child's feelings and needs (and not the ones for the parent's to cope) are represented?"

You are making several assumptions; first and foremost that this child has the capacity to express his feelings and/or needs.

The other, is that his feelings or needs should be given some type of untouchable reverence.

Considering that you appear to have a problem 'blaming autism' for anything, this is all the more confusing.

By way of example, if the child were NT, but sliced open a couch and ate the stuffing, who in their right mind would stop to consider if eating couch materials were part of the childs feelings and needs before trying to deal with the situation; or discussing it pubically? 'Tell me why you felt the need to eat the stuffing from the couch, son'. (?) But if the child has autism, suddenly the reasons why he is eating a couch are important, but, of course, we cannot draw an association between eating couch stuffing and autism. There must be some other need, completely unrelated to autism, that has driven him to eat stuffing.

You are wrong, dead wrong.

- pD

Anonymous said...

MR Anon, please attack the messenger. The woman in this article is stating facts and you offer only rhetoric.

Check the medical journals Mr Anon. My son, hers and many other SEVERELY autistic children are a horror to live with. Medicines do not work. They attack anyone and everyone no matter who they are as they go from uncontrollable mood swings.

I have filmed my son happily playing by himself with Thomas trains one minute as a shadow takes over his face and he is transformed to rage, all in the span of a minute. He bites, breaks doors with his head, head butts people, scratches, and in general acts like a wild animal from time to time (meaning several times a day). No medication can control it. No person can control it.

So please stop with your ill-formed nonsense and realize that I, this poor abused woman, and others like us are the REAL experts.