Sunday, 26 September 2010

Why Is It Still OK To Judge Children With Challenging Behaviour?

Readers of this blog will know that Lyla's violent behaviour is something I have to deal with frequently.

Thankfully the episodes have become less frequent and intense, over the past three years. But there was an eighteen month period when I was enduring a 3 hour assault almost every single night.

It took this long to unravel the causes of her behaviour- sensory issues, hyperactivity, anxiety and a deficit of the sleep-inducing hormone melatonin, which has now been corrected.

It's only now that things are getting better, that I feel able to make sense of it. Emotionally, I spent an awful lot of the time in lockdown mode, not really very far from cracking up.

The charity Parentline says that it receives 53 calls a month from parents who's children attack them violently. Having been in this situation myself, I can say that it is one of the most soul-destroying things which can happen to you as a parent and as a human-being.

If we are attacked by a stranger, this is a terrible event and rightly there is recourse to justice and the law. If our spouse attacked us, there are refuges and we can leave them.

But what happens if your child attacks you? Well, just a whole lot of nothing.

It is one of the loneliest most isolating things that can happen. It's hard to talk about it openly as people either avoid eye contact, scuttle away and try to avoid ever speaking to you again or offer advice, which whilst often well-meaning isn't really very useful.

Parenting advice isn't hard to come by these days. Most people experiencing a child's challenging behaviour aren't in this situation because of lack of advice or information.

What's really needed is genuine help.

Getting to the root of behaviour issues in disabled kids can take weeks, months or years and may sometimes be impossible. And in my experience the 'help' offered isn't help it's advice.

That's a big difference, when you're at home on your own, your child has just broken your tooth, is threatening to smash a window and is screaming because they have thrown themselves into the side of a table. What you need is somebody at your side when your child is attacking you for moral support and help protect you and your other children.

For some people, dealing with challenging behaviour is worse than this, they have to give up their kids to full time care because they simply cannot cope- the situation is totally unmanagable. It's a terrible situation to be in and I feel that nobody has the right to judge unless they've experienced the same themselves.

Another outcome is the feeling that you're constantly being misunderstood at best and judged at worst. Other adults seem to feel that 'naughty' children and their parents are fair game and I have to deal with people taking a pop at me over Lyla's behaviour with boring regularity.

Frankly, dealing with the child's aggression is hard enough, without having to deal with the opinions of armchair experts and elderly-relatives. It sucks, really, it does.

But, because we are narcissicistically obsessed with parenting these days, the consequence of having difficult children is that you are fair game to be judged. Usually, there is a very thinly-veiled hint in any 'advice', namely that you're not a good parent and this is all your fault. If only you could do it perfectly (like them), your child would turn into the Sugar-Plum Fairy.

Dishing out advice or gawping or tutting is a lot easier for people to do than actually having to help you.

Sometimes I feel that just witnessing my life pierces peoples cosy karma and they would rather blame me and stare than consider that this could happen to them. I remember once wrestling with a screaming Lyla on the stone steps of the Natural History Museum, trying to prevent her from headbutting them during a tantrum. During the twenty minutes or so this took, I looked up once or twice at the parents snaking around us in the long security queue. Their faces were a picture of sheer undisguised horror- not one person offered to help me and all of them gawped. I almost felt sorry for them as they struggled to make sense of the spectacle unfolding and felt like maybe I should apologise for bursting into their perfect little family bubbles and reassure them that no, their little Johnny woudln't be doing this any time in the near future, the little furore was caused by autism.

But I didn't, because after all, why should I?

Over time, my ability to ride out these situations has significantly diminished. Some people resort to T-shirts boldly declaring their child's condition.

But for me, I feel that it isn't the business of strangers to know and I just try to return their stares with an extra-hard one of my own.

And other times I just go home and cry.

I won't labour the point but putting up with your child attacking you for hours on end day in day out, is just indescribably hideous and waking up knowing you've got that to look forward to can make life feel like it's not worth living.

This is a serious subject which in my opinion warrants more than sub-Jeremy-Kyle-style journalistic treatment.

This is why is why I was on the verge of pelting my TV with eggs the other morning.  An item about a seven-year old boy attacking his mother was discussed on UK morning TV programme Lorraine the other morning. Too often, the attitude, even from so-called professionals is Blame the Mother- Blame the Child and sadly this was the attitude here.

The psychologist invited to advise the child's mother was at pains to point out that she was 'a parent too'- which qualifies her to comment on parenting an autistic child in precisely no way at all.

A short sermon on 'setting boundaries' was followed by Lorraine's summing up with this nugget of parenting gold 'well at some point there has to be discipline doesn't there?' Would somebody please give these women a degree in stating the obvious?

Whilst this is mildly annoying, it confirms what most parents of challenging kids feel- that everyone thinks they are to blame. They are bad parents because they haven't disciplined their child enough or there haven't been enough 'boundaries'.

Even though this is clearly nonsense.

So, my challenge to Lorraine is this: stop making cheap TV by putting the boot into vulnerable families. If you really care about the families involved, start a campaign for HELP for families dealing with challenging behaviour.

Maybe then we'll start taking you seriously.


Resources which you may find helpful:

Challenging Behaviour Foundation -their service is geared to disabled people who have learning disabilities, but they will help people without learning disabilities if they can.

National Autistic Society- factsheet on challenging behaviour.

Tuesday, 14 September 2010

The One with the Award

It's the first anniversary of Strange & Beautiful and I find myself in Butlins, Bognor Regis, attending The MAD Awards ceremony.

It's a bit odd being in a complex dedicated to family fun all on your own.

I caught myself swallowing back the odd tear when I saw little kids with their parents, and I don't think it was just because I was missing mine. But more of that later.

On a whim, I decided to stay and spend the day on my own.

I used to love my own company but it's very rare that I get to do my own thing for an entire day now. When I do manage to keep the odd moment back for myself, it takes so much planning that it feels like I have to DO as much as possible to get the most out of it.

So, after delaying getting dressed until 1 in the afternoon, I strolled off to indulge my twin passions- taking photographs and mooching around seaside charity shops. I can't help but love a bargain (netting a Nina Simone biography & a (new) book of old Polaroids!) Top that off with a dinner of Pot Noodles and I was on a total nostalgia trip back to my 1980's student days.

It has felt like the first totally relaxing day I've had since forever.

So back to the tears. I think it's because I feel cheated out of the early years with Lyla and Mya- it should have been a happy, fun time. And it wasn't.

Life was difficult before Lyla's diagnosis as her behaviour was so unpredictable and she tantrumed violently and constantly. She spent most of the time going on the naughty step. I feel bad about this as it was the complete opposite of what we should have been doing.

If we'd had an earlier diagnosis, things could have been really different- for all of us.  I kept believing people who told me that all kids tantrummed. Yes, they DO, but not like THIS. Funnily enough some of the same people told me after the diagnosis that they always knew something was wrong...

When Lyla was eventually diagnosed, I was devastated it meant this wasn't just toddler tantrums, this might be forever: Lyla couldn't go to sleep as her brain doesn't produce the sleep hormone Melatonin. Every night, from 7-11pm, she would get hyperactive and attack me and our home. I dealt with all this on my own and it took a lot from me, both physically (broken teeth, black eyes, bruises and more) and mentally.

Things have changed and improved, but being the parent of an autistic child can feel like a constant, daily assault on you as a person.

So I'm very pleased to announce that I've won The MAD Award for Most Inspiring Blog 2010! I really wasn't expecting to win as the other blogs are really good- Baby Baby, Battling On & Everyday Parent. Winning the award means a lot to me because it shows there is support out there for a blog about autism. Because it's a hidden condition, there is still so much more work to be done to raise awareness so that families can get the help they need and people with autism can be more understood by others and treated with respect.

Thankyou to all of you who voted, Sally Whittle who organised and Butlins who sponsored The MADS.  And, if Lyla and Mya ever read this, they will know I lied about where I was going- if I'd said Butlins, they'd have stowed away in the boot of the car- sorry gals, but I've come clean now! And thankyou to Plum Baby who sponsored the award. The prize is a selection from their range and a break at a Luxury Family Hotel- which frankly couldn't have been a more welcome prize!!

Finally, this blog would not have been born if it hadn't been for the persistance of my wonderful friend Amelia Critchlow.  She sat me down with a coffee and a computer one morning last September after we'd dropped the kids off and made me write my first post.

So that's what blog means to me. And you reading it and commenting on it are what makes it worth writing.


Saturday, 11 September 2010

Horses: A Treatment for Autism?

 My Evening With the Ponies
The Horse Boy a story of a family's travels to help their autistic son, has become an international phenomenon.

Rupert Isaccson's book, and soon to be film, is an inspirational look at how he capitalised on his autistic son Rowan's interest in horses and used equine therapy to help treat him. They journey to Mongolia, the home of wild horses and ride with the Shamans.  Miraculously, Rowan starts to heal.

Equine therapy is a well-established treatment for disabled, especially autistic, children as it has been proven that horses can help reduc children's anxiety and help them become more social and emotionally in touch.

Rupert isn't suggesting horses are cure all. Rather, as he said to me in an email to me,  you have to be guided by your child. But the horses certainly seem to have worked wonders for Rowan.

So, inspired by the book, me and a friend books some autism horseriding sessions for our kids. We were lucky to find a heavily subsidised class run through a scheme called Gifthorse.

Never having ridden a horse before, I was slightly nervous of letting my little ones loose on them- so imagine my trepidation when this HUGE horse was brought out for Lyla.

But, immediately, Lyla was at home with the horses and climbed straight up onto Dixie and started riding.

And a beautiful thing started to happen- she couldn't stop grinning.

Up on top of this huge beast, Lyla looked as at relaxed as if she'd always ridden horses, her little face beaming.

And she couldn't wait to go again!

On the strength of this, I booked a lesson for myself: it's definitely not as easy as Lyla made it look.

Climbing onto the horse was an experience my jeans would rather forget and when my horse, Mack, started to trot, I thought I was going to be hurled headlong into the sawdust and I let out a little squeak - apparently a big faux-pas around, sadly not a natural born equestrian. But that won't stop me taking the kids.

If you're interested in trying out equine therapy, Horse Boy Camps are available in Texas with Rupert and his family- they're also just beginning in the UK.


In other news, thankyou very much to Gemma who writes about her lovely daughter Sophie and her life with CF for giving me the Blog of Substance Award and for saying I'm an amazing writer- not really sure what to say to that except wow, thankyou and I'm really touched! :). Pop over and say hello to Gemma at her fantastic blog Lungs Behaving Badly


Finally, thankyou to Amelia Critchlow of 101 Bird Tales, who is running a fantastic event on her blog called 'It's Free', where she is very generously giving away something each and every day in September! She very kindly sent me this cute vintage sewing kit which I shall have lots of fun playing with..pop over and check it out!
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