Monday, 28 December 2009

Christmas Carols

I was in two minds about taking Lyla to the Christmas Carol Service at St Paul's Cathedral. I love St Pauls and find it a very beautiful and spiritual place. From an autism point of view, the sounds and sights and sheer business of the place could be too overwhelming for an autistic person like Lyla. But I like to give her a chance to experience new things and she loves singing so thought I'd give it a go. We could always leave......

As it was a children's service I wasn't too worried about her behaviour would be received. I remember somebody commenting on the fact that David Cameron included his disabled son Ivan in family occasions and took him out in public. And why on earth shouldn't he? There seems to be an unwritten law that we should keep disabled children hidden away. Why? There's something very sinister and dehumanising about this notion that disabled children are somehow shameful and I don't intend that Lyla should live her life hidden away. She has as much right to experience life as anyone else.

Other parents I know with physically disabled kids say that they find it hard that people don't acknowledge their child. I find the opposite. We tend to get loads of stares as Lyla looks 'normal' but her behaviour is way off-key. Lyla enjoyed singing the carols but didn't understand a lot of the rest of it and found it boring. So she started singing during the readings. It wasn't particularly disruptive as there was a cacophony of baby noise. Then when the priest said to pray for people we've lost she shouted out- Oh God well, we're not gonna pray for Grandma Doris cos she's dead!! We got a lot of stares, mainly from other parents. I think in fairness they were trying to figure her out. Over the course of the service, the stares went from benevolent (haven't you got a handful there?!) to curious (Isn't she eccentric?) to embarrassed (Blimey, there's something serious up with your kid- I can't look you in the eye!!!!! ) Because we don't often see autistic kids let-out, it's not something that people are familiar with, so I can kind of understand.

My hope is that with more exposure to normal situations, Lyla will eventually learn some of the social skills normal people take for granted. And other people can see that autistic people like Lyla are very much loved and valued by their families and friends.

Happy Christmas!

Friday, 18 December 2009


Just a really short post to say thankyou to all my Twitter friends and other Bloggers who read my last post on The Stress of Autism and your incredibly positive feedback. It's really moved me. I feel passionately about raising awareness of autism. And I feel one of the best ways to do this is to give people an insight into what it's like to live with autism.

So, thankyou all- you're all amazing!!


PS The picture is from an upcoming Autism Art project I'll be helping on in the New Year- watch this space!

Tuesday, 8 December 2009

The Stress of Autism

Its Official...being the parent of a child with autism is stressful. Researchers at The University of Washington have confirmed what all parents of autistic children know: it ain't easy. They struggled to explain why parents of autistic children have higher rates of stress than parents of other disabled children including those with other developmental disorders. So why might this be?

Well, since I'm going through an especially tough time at the moment with autism, I feel now is a good time to offer up my thoughts. Being a tough old boot, who hates moaning, I find it hard to admit how hard I find it. On the other hand, I'm also known for being pretty direct, so let's tell it like it is, without the sugar coating: IT'S HARD.

There, said it now!

So why is this? Why is it so hard to parent an autistic child?

Well, let me give you a glimpse into the last few days with my daughter. I came down on Sunday morning to find the living room showered in a confetti of cornflakes. Lyla was tossing them into the air, crunching them into the carpet and crawling round on hands and knees gobbling up the crushed remnants. She'd also disposed of all the milk and juice in the house down the sink (because she likes watching it pour away). So, I couldn't even have a coffee before i contemplated the devastation! Then she'd hidden a load of frozen peas under the sofa, which had started to turn. She'd then tried to climb the xmas tree, strangle herself with a curtain cord and scaled the outside of the stairs. Later she refused to put on her seatbelt in the car, screamed at full pelt for the entire journey, yanking my hair so hard that my head jerked backwards and I nearly crashed. I put her outside the car to calm down (with other kids in the car, parked in the middle of the road, hazards on). She lay on the pavement in the pouring rain screaming and kicking, nearly belting a couple of passers-by. Then, there were the usual tantrums and hitting, screaming when things weren't exactly as she wants them and the sometimes impossible task of trying to explain to her why she may need to wait for something she wants.

This is by no means a bad day, this is fairly typical. I usually expect a fair degree of violence and tantrumming. What can grind me down is the relentlessness of it. An autistic child will rarely learn from experience and will usually have the same tantrum about the same thing, day-in, day-out. I cannot see much hope of it getting any better.

Autism isn't curable. Bang your head on the hard wall of scientific fact.

This may never get better.

I will need to live a long time to care for her, she is vulnerable.

I may not live a long time as my health is not good (although I intend to be an awkward sod to the end and prove them all wrong!!).

On a daily level, autism is unpredictable, I can't plan for it: she may kick off today for and hour before school about having to have a pink toothbrush not a red one: tomorrow, it may be because she doesn't like tights.

Autism is an enigma: it is hard to understand, even for those of us who deal with it every day.

This is incredibly isolating. I have wonderful friends with autistic children and we all struggle. But I still have to operate in the real world too, even though our home life often feels like it plays itself out in some crazy parallel-universe.

Because autistic children look normal, their behaviour is often taken to be naughty. I am extremely frequently on the receiving end of filthy stares and rude comments. Luckily, I have developed an skin as thick as a scaly Iguana. But, when I'm having an off day, it can really hurt: I'm not a bad mum, she's not a bad kid, we're struggling, OK. So when my daughter is standing in a supermarket queue hitting me with the basket, swearing at me and shouting that I'm the worst mummy in the world: count your blessings that this isn't your life.

Then there's the sadness that I feel looking at my daughter who is so ethereally-beautiful and knowing how stressful and alien she finds the world.

I haven't touched on the difficulty of getting help. It is almost a full time job to educate yourself in what autism is and how you can help your child. Services are patchy at best and most of the time you get palmed-off onto overstretched charities who try their best but are totally overworked. Then there are the people who see an opportunity in marketing 'cures' to autism. It would take a lifetime to try out every (unproven) treatment on your child. But most of us are desperate enough to give it a try.

Then there's the guilt. Autism is a bottomless pit of need. You could invest your whole life in finding treatments for your child and still this wouldn't be enough. Because, you may never find a cure, you may never be able to help them.

So, a few reasons why being the parent of an autistic child is hard sometimes.

So why don't we hear much more about this from the families of autistic kids? Probably because most parents are so exhausted with their job that there is no time for campaigning. Also, disability is the last socially-permissible bastion of prejudice. It's OK to ridicule disabled people in a way it would never acceptable on the grounds of race or religion. As a society, we are narcissistically-obsessed with our children and when our children don't reflect well on us, there is a heavy price of disapproval to pay.

So, no answers then, just some thoughts.

And if you have a view on this, let me know.....let's get this out there!!!


Photograph: Barbara Hepworth 'Madonna & Child'

Sunday, 29 November 2009

The Road

I've just finished 'The Road', by Cormac McCarthy. An outstanding book that's already garnered many awards, not least among them, The Pulitzer Prize 2007 and The Sunday Times Best Book of the Decade.

It's a poetic vision of a boy and his father travelling through a post-apocalytptic, ash-covered United States, in search of remnants of civilisation: "The world soon to be populated by men who would eat your children in front of your eyes and the cities themselves held by cores of blackened looters who tunneled among the ruins and crawled from the rubble white of tooth and eye carrying charred and anonymous tins of food in nylon nets like shoppers in the commissaries of hell". The pair travel through the strange, dystopian landscape of petrified trees and strewn limbs, fearful of murderous strangers. Our modern world exists only in the father's memory and dreams. The central question in the book appears to be whether there is any point in living in this stark, brutal new world. The power of familial love is a constant throughout the book and this is what makes it so compelling

So why have I chosen to put this in my autism blog? Near, the beginning is a description of 'the blackness' which 'he woke to on those nights was sightless and impenetrable': "He rose and stood tottering in that cold autistic dark with his arms outheld for balance while the vestibular calculations in his skull cranked out their reckonings". Clearly the word autistic grabbed my attention. I can't remember seeing it used in this way before in fiction. And it seems inadvertantly such a perfect representation of the sensory disorientation which affects autistic people.

So, why is the darkness autistic? It's an unexpected word-pairing. The darkness is autistic in the way it disturbs and distorts The Man's senses. The darkness is also autistic as it places a veil or barrier over The Man's ability to perceive the world. It is also a stunningly evocative portrayal of how isolating and disorientating this is for The Man.

So, just a snapshot of 'The Road' then. I'd highly recommend it......let me know what you think?

Sunday, 22 November 2009

Demolition Girl

I'm not quite sure why this happens. When I took Lyla to mum's house at the weekend, she went upstairs and gouged a huge hole in the wall with her bare hands. She ripped through wallpaper, and dug out plaster. Unfortunately, the wallpaper is 30-year-old Anglypta and the plaster 100 year-old lath. And the wallpaper is holding the wall together. So, in short, there is no possibility of a repair apart from replastering the entire hall up and down. Oops.

Luckily mum is very laid back, but what I can't understand is why she did it. She isn't able to explain it to us and I can't readily think of a reason. So, it'll have to remain a mystery for now. Watch this space.

Picture by Spiro2004.

Monday, 16 November 2009

The Mystery of the Missing Diet Cokes......

There's been a discussion going in our house for the last few weeks. It goes something like this: my husband asks where I've put all his Diet Cokes and I respond, er, maybe they're in your tummy darling (or something less polite if this is the third time i've been asked in a day, but you get the picture).

Anyway, the mystery of the Diet Cokes is no more.

Yesterday, in a fit of pre-Christmas house-proudery, I cleaned under the sofa, and lo, what did I find but about 30 of the empties. It seems that Lyla has been cunningly stealing the cokes and hiding the evidence while we're not looking.... At a rough tally then, she's consumed nearly 30 cans of the stuff over the last few days. Quick, call the Diet Police!!

Why? Well, this is a common feature of autism, especially those who suffer from Sensory Processing Issues. Lyla's senses confuse and distract her and when this happens she starts sensory-seeking behaviour. In terms of her mouth, she cannot interpret the signals so she needs to constantly chew to stop herself from being distracted. It's not unusual for her to consume large quantities of food in a day and I'm constantly discovering little stashes that she's hidden around the house for herself. She needs crunchy strong foods, to give her the correct feedback that she needs. She can often be found sitting down with a huge bowl of peas, straight out of the freezer or tucking into a box of Bran Flakes or crunchy apples. She can easily get through 20 pieces of fruit in a session. Apart from being expensive it doesn't seem to be harming her particularly as she is very skinny. She's hyperactive, so she burns off the extra calories.

I expect she enjoyed the fizz of the Diet Cokes. But obviously caffeine isn't great for kids, so we've hidden them away now.......I wonder what she'll get up to next.....

Wednesday, 11 November 2009

Fireworks Night

Guy Fawkes Night has been intensely difficult for Lyla, ever since she was a baby. An American friend who was staying over one year remarked on how it was like being stuck in the middle of a war-zone. So, lots of people can find fireworks and particularly Guy Fawkes Night overwhelming. However, for some autistic people, the sounds, smells and suddenness of fireworks can make them feel as though they themselves are imploding. Since she was a baby, my daughter Lyla has hidden under pillows screaming for the entire duration of the night and we've been completely helpless to calm her down. As her autism was not yet diagnosed, we just thought that she was just an especially sensitive person and did our best to protect her.

It is well known that many autistic people suffer from sensory sensitivities. This means that autistic people's senses can disrupt their lives significantly. For instance, Lyla understands language, but she cannot absorb long segments of speech. Lyla has said that the loud irregular bursts of fireworks make her feel like she is dying- her brain cannot process the noise in any way that isn't distressing to her.

What can we do? When she became verbal, we tried explaining the whole event to her, but she was just in sheer pain with the noise again. This year Lyla, will try a pair of Ear Defenders (from B&Q, for using with pnuematic drills!) and earplugs. She coped better at home on the 5th so this weekend we're taking her to the fireworks at the South Bank in the hope that for the first time in her life, she and her sister might be able to enjoy them.....Wish us Luck!

Picture by Sonewfangled
Related Posts with Thumbnails