Strange & Beautiful

A Poem For My Twin

2011-07-26T20:00:00.000+01:00

By Mya, Aged 8

You are the smell of a rose
that tickles my senses every day
You are the energetic labrador
that loves to play.

You are the bouncy castle
that I love to watch every evening
You are the soul of Brighton waves
that I picture when I'm dreaming.

You are the twinkling stars
that brighten up the midnight sky
You are the beautiful flowers
that I cheerfully love to buy.

You are my sister
and this is a poem
all about you.

Why is Autism Trendy Right Now?

2011-06-16T07:38:00.001+01:00

'Mum, you know that award that's in the downstairs loo, the one you got for blogging',

'Yes, Lyla'

'Well, that proves that you've tried very hard to understand me- some people don't, you know?

'Really?'

'Yes, some people don't care about autism at all, but you do...and I mean it you know, mum I mean it here, right here in my heart'

I catch my breath. Sometimes things Lyla says are so direct I'm momentarily stunned (of course, it helps that she's saying something deeply complementary....!) The conversations which start with a statement like 'So you never remembered to put suntan lotion on when you were young....that's why you've so many wrinkles' tend to be batted off by a mental reflex which has processed far greater insults.

It made me wonder though, how well people understand autism?

It's certainly a hot topic in the media at the moment- especially if your guilty pleasures extend to an addiction to the Mail Online. Enough said.

It's something that Todd Drezner addresses in Autism: The Most Popular Disability

He suggests that autism is a surprising disability. Parents start thinking they are raising a typical child. But when they get the autism diagnosis, they they are forcd to examine and confront their ideas and preconceptions about disability.

I'd also suggest that autism is the subject of cultural fascination because at it's core, it's enigmatic. We might understand the theory of the triad of impairments, but still be totally incapable of reaching a person with autism and getting inside their world.

Can we ever really understand autism?

Since no two people with autism are the same, that would be a very difficult thing.

Of course we can understand common themes, that people with autism share, but taking the time to understand a person with autism, to interpret their behaviour, and give them what they need takes an awful lot of time and determination.

If a rise in awareness of autism leads to other people caring about autism and valuing kids like Lyla that will be a very good thing.

Review: Secret Agent Society Computer Game

2011-04-21T12:20:00.000+01:00

As I mentioned in my last post, I was sent a copy of the Secret Agent Society Computer game, which teaches emotions and social skills to children aged 8-12.

One of the clever features of the game is that it taps into the fact that a large percentage of autistic children are obsessed with visual mediums such as TV & computers.

One of the core deficits in autistic children is Theory of Mind, the ability to understand what others are feeling and that others may feel differently from us. It is sometimes called mindblindness.

The SAS game aims to teach these through different scenarios: facial expression recognition, voice tone and body language.

We've been playing it for about a month now and Lyla really enjoys it. The only caveat I have is that I think she has taken the game completely literally and thinks she really is in training to be a spy. Something I will have to address in due course!

The games also feature live missions, where you put your skills into practice in the real world- absolutely vital for really learning social skills.

For instance, Lyla has a mission to spy on people she sees out and about and try and work out what they are feeling. This comes with the instruction to the child not to stare as you may blow your cover as a spy, which very cleverly avoids the problem of your child getting into trouble for harrassing people.

I've bought Lyla a little spy notebook, which she fills in her missions and it provides a context for us to talk about social situations.

The only stumbling block that we came across was that Lyla found the facial recognition part of the game very difficult and she needed to pass that level to move on. The game guide recognises this and suggests you do the game with your child, to keep them on task (although obviously you shouldn't answer for them). I found that sitting beside her, giving constant encouragement helped a lot and she was absolutely thrilled when she finally passed the level after days of trying!

The SAS game is really well thought-out and fun for kids. You can find screenshots, video outakes and lots more on the SAS website.

On Streetdance & Stress Levels in Combat Soldiers

2011-04-14T10:53:00.000+01:00

A fellow autism mum recently drew my attention to some research which has shown that mothers of autistic children demonstrate similar stress levels to soldiers in combat. I'm sure there won't be many mothers of autistic kids who will be surprised by this. But it did cause me to pause to consider how different my life is from the norm.

On a happy note, we are just discovering one of Lyla's hidden talents. She's become obsessed with streetdance and won a dance-off at school. Her talents were also spotted by a professional at a party- Go Lyla! I, on the other hand am showing my age by asking questions like, 'what's a G6?' Answers please....

I also attended the inaugural Queensmill Lecture delivered by Professor Roy Grinker. Grinker is an anthropologist, autism parent and author of 'Isabel's World', a survey of how autism is viewed worldwide.

It was an inspiring evening- Grinker is very hot on de-stigmatising autism as he believes that this is the primary problem facing autism.

I think most parents would agree the treatment of disabled people as a whole needs to improve.

A recent incident which springs to mind is the unpleasant sexual jokes Frankie Boyle made about Katie Price's autistic son Harvey on his now-cancelled Channel 4 show. 'Jokes' about the benefits of killing disabled children have also appeared on BBC's QI recently. Nice.

Thanks for your always-interesting comments on my last post. I agree whole-heartedly that we need to accept our kids for who they are. But I'm always open to hearing about stuff that can help Lyla.

And I was excited by a game I was sent to review call SAS: Secret Agent Society. In brief, it's a computer spy game which teaches social skills, more to follow in a full post soon....

Hope you're enjoying the Easter sunshine!

Meeting the Billy Graham of Autism*

2011-03-03T03:20:00.001Z

I'm sitting in a packed, airy lecture theatre, waiting for motivational speaker and erstwhile autistic Raun Kaufman to appear.

The atmosphere is fidgety- it feels like we're waiting for a gig at the Roundhouse, rather than in this large school room in the middle of Regent's Park.

Having forgotten how quick early London traffic is at weekends, I've arrived early and enjoyed a quite cappuccino at the modernist park cafe.

Septuagenarians perform Tai Chi- I like this and a family of five park their bikes outside the window.

Watching them, I ask myself the question often on my mind, usually suppressed 'What if?' What if I had a normal family instead of sitting here waiting to spend my Saturday like this? What if we could go cycling together without somebody going kamikaze straight into the road?

But I stop myself, this is my life. This is our normal.

Cheery banners 'Cure Autism!!!', signpost the way to the lecture theatre and I feel my eyes well up- I, like so many other parents so wish there was a cure.

It's a crisp winter day and the huge, ecclesiastical windows around the room remind me of Larkin's High Windows.

Rather than words comes the thought of high windows:
The sun-comprehending glass,
And beyond it, the deep blue air, that shows
Nothing, and is nowhere, and is endless.

Then I stifle a grin as I think of the rude bits at the beginning of the poem.

For the uninitiated, Raun Kaufmann was diagnosed with autism as a young child and his mother cured him of autism through a self-devised intensive interaction programme that they later named 'Son Rise'.

He is an engaging speaker and far less evangelical than I'd expected.

Son-Rise is essentially a behavioural therapy, where the parent/ therapist tries to enter the child's world and bring the child into their world.

As a therapy, I think it has a lot of things to recommend it. I used the 'mirroring' technique on Lyla when I got home. After looking at my quizzically asking 'why are you copying me' she got into the spirit of it and said it was the best play session ever.

Like many autism treatments, the Son-Rise programme has it's detractors. There's controversy over Kaufman's 'recovery' and what some see as their hard-sell methods.

I have to say that although there were very serious-looking, besuited people hovering around the auditorium with clipboards, Kaufman himself was very likeable and when I met him afterwards and did seem to genuinely want to help people with autism.

One of the before & after videos showed a 'severely autistic' child. To me, the child seemed less autistic than Lyla, who is not severe, and was in the middle of a tantrum. The after video showed him smiling.

This is very much short of proving that Son-Rise cures autism, but if it led to an improvement in this little boy's mood, then that has to be a good thing.

The Son-Rise programme is eye-wateringly expensive, especially if you want to visit Son-Rise-Ville in Massachussets, USA and certainly out of reach for us and most people.

If you like the Son Rise approach, there's some useful and more importantly, free information that you can access on their website.

*I've just realised that some of you who are not in the same (middle) age-bracket as me might not know who Billy Graham is: he's an American evangelist who was very prolific in the 60's & 70's. Writing that makes me realise that that was actually quite a long time ago!

Autism & Sleep

2011-02-03T16:54:00.000Z

Just when you think you're getting your life back together something always happens to knock you off your perch- or so my Scottish granny never tired of saying...

When life is stressful, there's nothing worse than broken sleep. As soon as Lyla started school after the Xmas holidays, she stopped sleeping at night.

Just like that.

From sleeping through (with medical help), she suddenly stopped sleeping.

And I've started turning into a zombie.

Lyla has always had sleeping problems and two years ago she was diagnosed with Melatonin-deficiency.

Melatonin is the sleep-hormone which causes people to feel drowsy in the evening and fall asleep.

Melatonin-deficiency is very common amongst autistic, ADHD and also blind kids. The theory is that melatonin production is light-dependent. This explains why blind children don't make it. For children with certain types of autism or ADD/ ADHD, it appears that the brain doesn't process the light properly and so either doesn't make any Melatonin or doesn't make enough.

Melatonin supplementation, under medical supervision, can be highly successful, (indeed miraculous!) and induces normal sleeping patterns.

This all sounded a bit barking to me when it was first diagnosed, but it's another instance of just how pervasive autism is- it really does affect every area of a person's functioning.

So, that's the science bit.

However, the drawback with the preparation that Lyla takes is that is wears off after three hours. So, she's started to wake up just as we're going to bed and running around the house, shouting, wanting to play and waking everyone up.

Having a hyperactive child shake you out of a deep sleep, when you're already exhausted brought back unwelcome memories of endless sleepless nights with newborn twins.

For the first few nights, we survived on adrenalin, but after a week, utterly shattered, we realised that this wasn't a one-off: we had to take action.

Lyla suffers from quite severe Sensory Processing Disorder and unless she performs vigourous exercise every day, she is restless, anxious and hyperactive.

Until now, we've scheduled this into our day, but since she broke her elbow in November, she's not been allowed to exercise until l the screws that were put in her elbow have healed up.

Now Lyla can keep going on no sleep whatsoever, but Mya can't and neither can we. So, we took the decision to resume Lyla's exercise programme.

I'm pleased to say that after two hour-long running sessions, Lyla has started sleeping through again and I'm looking forward to life returning to (our version of!) normal.

What are you doing for You in 2011?

2011-01-11T21:57:00.003Z


Collage from Wordle Cloud

Following on from my last post where I talked about how I dealt with feelings of exhaustion, I wanted to share a few plans I have for 2011.

Having decided to stop battling with a busy schedule and do less, I've been wondering how I can put this into practice.

Last year, I did a few online courses, including the Experimental Art Course by Amelia Critchlow, who is a friend of mine.

I've always been creative, but like a lot of people, got put off art at school when my drawings didn't match up to how I wanted them to be.

Since having kids though, I've found myself having as much fun as them once the paints come out. So, I thought I'd take the plunge and see if I could go any further with my art.

The Experimental Art course takes you through Sketchbooks, Drawing and Doodling, Painting, Collaging (something I loved!) Photography and Contempory Art.

I really enjoyed my forays into art, which is why I'm going back to do the course again this month.

I've posted up some of the artworks I made on the first course here (including the picture which is now in the banner for the blog!)


Finger Painting

✿✿✿✿✿

Also, on a more serious note, the proposed government cuts will drastically and detrimentally affect autistic and disabled, some of the most vulnerable in society.

Shockingly, there has been no consultation with any of the main charities such as the NAS over the dismantling of services and benefits needed by people with autism.

In repsonse to this, the ACT Autism Now campaign group has been set up to record the cuts in services to people with autism and their families.

You can help directly by recording how the cuts are affecting you.in your area.

How Was Your 2010?

2010-12-31T17:54:00.000Z

So, it's the last day of the year. How will you remember 2010? Was it a rollercoaster of fun and frolics or really just a bit blah?

I have to confess that for me, it's been an odd one. I've not really touched on this much because people who know me *in real life* read this. But, I have sometimes struggled with being a parent to a disabled child.

When Lyla was diagnosed with autism two and a half years ago, I was exhausted from dealing with her challenging behaviour and getting no sleep. Plus, I have a serious hereditary illness, which is progressing and I was (and am) getting more and more anaemic and tired.

The thought that this wasn't just an extended toddlerhood, but a condition where I may never get a reprieve nearly finished me off mentally. I'd been running on empty, assuming that things would pick up someday soon.

How foolish!

In the first days after the diagnosis, my first thought every morning were 'How am I going to get up and put up with the violence today and then start all over again tomorrow? This is too much. I'm miserable. I don't want to wake up anymore'.

This was quite a bleak time and I made the decision that if I was going to cope I would have to take antidepressants. I was under such unbearable stress, had no help and I thought this would probably be the only way I could cope.

Around this time, I also collapsed from a stomach ulcer and other stress-related illnesses, which I'm sure were related to the shock of coping.

So this was all way back in 2008.

I find it quite hard to convince people that I've suffered from depression- I think I'm one of the people that doctors call a 'happy depressive'- somebody who looks fine, has a smile on their face and does their best to carry on as normal, but inside is going quietly mental.

I carried on, tried my best to understand autism and find a way to help Lyla with her behaviour. Things improved and in early summer 2010, I decided to stop taking the tablets.

This wasn't as easy as I'd hoped: the autism hasn't gone away. And I had two years worth of pent-up grieving that'd been put on hold whilst I was in the coping-zone.

This had to come out, but eventually the tears stopped and I've started to appreciate what wonderful children I have.

I also came to a realisation that half the time I thought I was miserable, I was actually just exhausted- I needed to DO LESS.

But family-life and doing less doesn't happen on it's own- it has to be a conscious choice.

For autism mums particularly, there's a big pressure to 'help' your child and not just in conventional terms (like Social Stories, Pecs symbols, speech therapy exercises, OT exercises, medication, changing the way you speak to and teach your child, which professionals just expect you to do on top of everything else!) but a whole wealth of other therapies like intensive ABA which promise big improvements.

You really need a salaried staff to do all this, but most (actually, probably ALL) mums do it alone. The difficulty is that the more you do, the more you feel you ought to do. And this can become an exhausting vicious circle.

So, however hard this is, in 2011, I'll be giving myself a bit of time-out from autism.

I'll still be living happily with Lyla, but I need some time to myself, a bit of time to recover from the last seven years.

So how can you do less when you feel that just to do the things you DON'T want to do (laundry, taxiing kids, cooking, cleaning anyone?) there needs to be about five different versions of you buzzing around like worker-bees?

Well, these are some of the things I've started doing:

Bought DVD box sets- cos I HAVE to sit down and watch them now, right?!
Got out a pile of books that fascinate me from the library and put them next to a comfy-chair
Booked in dates with friends to do something fun when I have days off rather than spend the time catching up with the laundry/ shopping/ cleaning/ interminable to-do list
Joined a gym on a cheap off-peak deal, where I can spend a bit of time exercising, but much more importantly spend time SITTING about in their spa
Allowing myself to sit down when I eat lunch, rather than eating on the run
Have a slush-pile for autism correspondence, articles etc which sits there until I feel up to dealing with it

So these are a starting point. No dazzling checklist of acheivements, but I survived 2010! I'm now holding back from bursting into a Gloria Gaynor-inspired chorus at this point....

What do you plan to do in 2011 to keep body and soul together?

Thankyou for supporting the blog in 2010, Wishing you all a Very Happy New Year!!!

You're Having A Really Bad Day And Then.....

2010-12-20T21:46:00.000Z

..... a little person comes along, holding up their hand with a sticker on it, and everything is OK again:

Whilst I don't want my kids to be responsible for my moods, I'm glad that they're thoughtful enough to understand and respond when they can see I've had a bad day and need a bit of TLC- thankyou Mya!

.....and then Lyla delivered another of her autism speeches:

'So, mum, is my autism just to do with not ever being able to sleep and not understanding things?'....

'Yes, sort of...'

'Oh is that all? Well that's OK because I can scan things- I can see through them and tell you their secrets...'

I love that she thinks having autism gives her superpowers (and maybe it does, who knows?!!).....

✰✰✰

Here's a link to some useful info on preparing kids with autism for Xmas. Wishing you all a lovely time with your wonderful kids!

Not Blogging, But.....

2010-11-30T12:34:00.000Z

Some of you may have noticed that this blog is being updated at a more, shall I say, leisurely pace than usual.

I've been finding it hard to keep on top of the blog as well as grapple with existential questions, such as is it possible to be the parent of an autistic child and still be a functioning human being? (Answers on a postcard please....) As well as the more mundane things like coping with Lyla's two operations this month- one for her teeth and one to repair a broken elbow. Both grim.

Oh, and I turned 40 this month as well which means I can no longer pretend to myself that I am young. Facts are fact. Yup, I'm on a one-way train towards senility, arthritis and doom...

Anyway, to keep my spirits up I've been surfing random funnies on the internet. This one which I saw on Everyday Stranger's blog made me laugh. Happy viewing......

Random Autistic Words

2010-10-30T12:32:00.002+01:00

Lyla come out with lots of random words and phrases, some bizarre, some uncannily revealing.

Here are some from the last day or two:

Autistic children x-ray you when they blink
Mummy likes dancing to the F-word
All the Gangsters shop in JD (sports) don't they?
Autism kids need a bit of TV to keep them going
Autism kids have x-ray eyes and can see into space- did you know that mum?
Mum- plasticene is something to squeeze

She also makes up words- today's new words are: 'Sandermation'- means 'a stupid man shot himself while his gun was loaded but the Americans shot him a year before', 'Protts' meaning a 'special plasticene for stress'

It reminds me of when my grandad had Alzheimers- a lot of what he said didn't make any sense, but the odd phrase made me see into his world with complete clarity.

Lyla often talks in a bizarre way and on the surface it makes little sense, but strung together, these snippets give me a lot of help in seeing how her mind works.

*****

On a related topic, we're taking part in a photography project about how autistic children see the world. We've been asked to take part by the producers of a film about autism as part of their research into how autistic people view the world.

Having already co-authored the Living With Autism art project earlier this year, it will be interesting to see if we can spot any autistic specialities in the photos taken by Mya and Lyla.

Apparently, some of the other autistic children in the project have produced photos of linear objects and buildings which are remarkably similar.

So far, Lyla, who is studying The Romans at school is obsessing over mosaics and is spotting them literally everywhere, so we are building up a bit of a picture library of tiny tiles. Watch this space for more info.

*****

Apologies for the lack of posting, I think I've alluded to this before, but I've been suffering from stress quite badly these last few months. Hopefully things'll pick up soon.

Finally, if you liked my last post about kids behaving badly, check out this hilarious one from US autism blogger Lynn Beware: Child With Autism at Large, a side-splittingly funny take on how to deal with gawpers.

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

2010-09-26T20:09:00.002+01:00

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.

The One with the Award

2010-09-14T22:03:00.049+01:00

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.

x

Horses: A Treatment for Autism?

2010-09-11T01:34:00.000+01:00

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 horses-.......so, 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.

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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

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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!

My Child Needs Six Teeth Extracted- Does that make me a Bad Mother?

2010-09-01T20:56:00.000+01:00


I LOVE MUM by Lyla & Mya.

That's the question I was left mulling over as I left the hospital dentistry department this afternoon.

I would say that I was shocked, but actually I wasn't.

Mainly because having an autistic child has pretty much depleted my shock gene: Oh look, she's just smashed a window/set fire to the carpet/sparked the TV by pouring milk on it/ given me a black eye/climbed out of a third storey window (all of these have happened to me, some on the same day), that my reaction to them has diluted into a shrug of the shoulders and 'Oh well', plus or minus a few expletives.

Did I ever write about how much I enjoy swearing?? I find a few mental **** or ****s always give me an inner chuckle and are excellent stress relief. Whatever gets your through, swearing to me is as crack-cocaine to Amy Winehouse etc

Anyway, I digress.

Why does my child need SIX teeth extracted? Yes, you read that right. SIX. Really, SIX.

Well, she has autism. Part of this manifests itself as compulsive behaviour. Lyla is obsessed with eating, this is a sensory issue is something she can't help. She is clever and likes to steal food and hide it when I'm not looking. I will routinely find little bowls of frozen peas/ cranberries or Bran Flakes tucked down the side of the sofa. Or bottles of orange juice stashed under her pillow. Last week I she took a ladder to my highest cupboards and pulled down the sugar jar and ate the whole lot with a tablespoon. There must have been over 1lb of sugar in there.

I was worried, not only from the tooth perspective, but also because I thought she might have induced some kind of lethal sugar-rush in her body.

So, compulsive sugar-seeking + difficulty brushing teeth = 6 extractions under general anaesthetic = Fail.

Bit of a no-brainer, but I'm really sad for Lyla as this will affect her long term as is something we have little control of.

The dentist asked me why I couldn't explain to her not to do it.

Sighing, I offered her the opportunity to waste her own breath 'explaining' this to Lyla. After the sermon was over, Lyla replied 'Oh hell, why do people keep talking AT me'..............a sentiment, I couldn't help but agree with.

______________________

Some of you might have noticed that I haven't been posting as regularly as usual. The abridge reason is that I have been suffering from stress. Normal service will be resumed shortly.

How to Spot the Early Signs of Autism

2010-08-05T18:18:00.007+01:00

I found this helpful video recently. It's useful if you're worried about a child or baby of yours having autism (and benefits from being fairly short!) It's also very instructive for those of us who have autistic kids- if only I had known, maybe Lyla could have been diagnosed earlier?

Also, Hello to all new followers, I'm in the process of popping by to say Hi! & Finally.....

COMING SOON:

I'm in the process of creating some new super-informative autism pages, which will also be downloadable as PDFs, so watch this space!

The Aftermath of an Autistic Meltdown: Wordless Wednesday

2010-07-07T18:20:00.004+01:00

Twins & Autism

2010-07-01T12:18:00.003+01:00

Since It's Twins, Triplets & More Week 2010 and I'm the (sometimes!) proud mother of a pair of fraternal, non-identical, 7 year-old twin girls, I thought I'd try and shed some light on the subject of autism and twins. Autism is much more common in twins than in the general population. Identical and fraternal twins are at a fourteen-fold and four-fold increased risk respectively of having autism. Much is still unknown about the causes of autism, but these statistics are enough to give cause for concern to many parents of multiples.

I remember the controversy over the MMR - which was still at it's height when I had to decide whether or not to vaccinate my babies. I also remember reading stories of mothers who's twins were both profoundly autistic and thinking how horrific it must be. I was ignorant of autism - there isn't much information out there and nobody wants to confront the possibility that it might affect them and their child.

In the end, the decision over the MMR was made for me. Mya, our (non-autistic twin) contracted bacterial meningitis and was critically ill in hospital. Seeing how quickly these illnesses can claim a child, convinced me that the risk of contracting a fatal disease and having a dead child was worse than the possibility of autism- even though it has still not been definitely proven that there is a link between the MMR and autism.

Now I see autism from the another perspective.

Our daughter Lyla was diagnosed with autism at the age of four.

Autism is developmental, neurological condition which compromises a person's ability to understand and participate in social situations and to deal with everyday interactions and occurences. A person with autism may also suffer significant disturbance in the way the perceive their senses, smell, taste, touch, sight, which may be distressing. It is therefore common for people affected by autism to live with a constant high degree of anxiety which can impact their behaviour significantly.

In hindsight, it's obvious to me that she was born with autism. She couldn't feed as a baby- a classic sign, she tantrummed constantly as a toddler, (which I put down to the terrible-twos), from the moment she first saw TV, it was like baby-crack and every night from birth, she screamed for hours at bedtime. It was never easy, but dealing with baby twins wasn't a walk in the park, so I put most of Lyla's difficult behaviour down to that.

Being the mother of twins equipped me in some ways for parenting a disabled child. The shock of two babies screaming 24/7 soon made me calm down about the peripheral stuff- organic baby milk, washable nappies, weaning etc. I binned the rulebooks, relaxed and did it my own way.

Having an autistic child is a bit like this. Readers of this blog will know that often life as a parent of an autistic child is no picnic. Life is chaotic and unpredicatable. Only on Monday, Lyla tried to stab me with a carving knife. This was part of a week-long meltdown, where she completely trashed our house (and us) and which we've now started to unravel and deal with.

Having twins, where one of them is affected by autism creates a special dynamic between them. Lyla lacks social skills and the ability to play, which can be frustrating for them both, but they've found their own way of communicating and playing together. They used to speak to eachother in a special, secret twin language until the age of three- this is a recognised phenomen called cryptophasia. In many ways however, they are very different, but despite this they are very close and care about eachother a great deal and Mya is very protective of Lyla. There is a competitive element as Lyla necessarily gets a lot of attention and Mya has not been above mimicking autistic behaviours to get attention! But all our kids our human beings, disabled or enabled, with as much right to have a fulfilling life as anyone else. And having Lyla in our family has helped Mya develop into an extremely caring, emotionally intelligent young girl.

Autism is lifelong, but not a life sentence.

Our kids are deeply loved by us. Challenging yes, but my challenge is to help people see Lyla for the wonderful, loving person that she is.

Meltdown

2010-06-25T21:41:00.002+01:00

I was meant to be writing about our first forays into Equine Therapy for autism- suppress your snorts please!- but instead, the last twenty-four hours have been consumed by that most autistic of phenomenons: The Meltdown.

When I told my dear dad that Lyla had gone into meltdown, he wondered if it was something to do with the hot weather?

Er, no.

Meltdown is nothing to do with the sunshine or even volcanoes and is much much more than a tantrum.

Meltdown is where the person completely loses control of themselves and their temper for an extended period.

Once an autistic person is in meltdown, the situation is irretrievable, the meltdown will not stop until the person is ready to stop. Usually this takes between half and hour to several hours. And the person is at very high risk of having further meltdowns over the next twenty-four hours.

Last night Lyla's meltdown lasted for three and a half hours.

She completely trashed our home: every wardrobe ransacked and clothes ripped/ vintage posters ripped up, cod liver oil bottle smashed into the carpet, box of scissors thrown at us (me and her sister), sofa cut with scissors, plants ripped up, pots smashed, files thrown around the rooms, trampoline net cut with scissors, storage cupboard contents thrown stairs, sister's birthday present destroyed etc

When Lyla started to smash the patio doors I knew it was time to take her out to walk it off. I was worried about whether this was a good idea as she was screaming at the top of her voice and hitting/ scratching/ kicking and biting me. Her face and hair and clothes were covered in mud and grass (from when she was ripping up chunks of grass and pulling up plants) and her little face was stained with tears.

To put it mildly, we looked odd! As she walked down the road, she was swearing and screaming and kicking the walls and fences of every house we passed. At one point I had to restrain her from really hurting her sister and a man in a car stopped and started watching us, looking like he was on the verge of calling 999. He wasn't alone. I can understand it up to a point - I would probably be worried if I saw a woman wrestling with a child on the street (and another child running away, shouting 'I can't take it any more). I'm normally pretty resilient, but this did get to me as I just felt like we looked so scummy- how can you explain what's going on to somebody? I expect for most people it was the first time they'd ever seen a spectacle like it.

Unfortunately that wasn't the case for me and Mya, her sister.

After three hours, we were all exhausted and she finally calmed down.

This used to happen every evening for a year until she started taking her sleeping medication.

It was hell.

So why did she do it? Who knows? It all kicked off when she refused to take her medication. But obviously that wasn't really what it was about.

Lyla's been having some friendship trouble at school and I suspect that her frustration with this is what caused the meltdown.

She will tell us what's the matter when she can.

For now, I'll have to spend the weekend putting the house - and myself- back together and helping Lyla - and Mya - to stay calm.....

In other news, the Horse Therapy was a galloping success (sorry), more info to follow later.

Doodle by Me.

What is Autism?

2010-06-10T08:38:00.010+01:00

What is autism?

I wish I had a pithy answer I could dish up every time I get asked this question.

It's not that I don't know what it is, although sometimes the more I know, the harder it is to understand.

Technically, the definition is characterised as a 'triad of impairments': difficulties with social interaction, social communication and social imagination.

I remember hearing this at the first talk I went to on autism and saying, 'yes, but what does that MEAN?!'

To me, the three strands of autism seem remarkably similar and essentially they describe social difficulties.

Furthermore, there are other criteria which may now been included in the latest diagnostic criteria (the DSM V Manual of Psychiatry), most significantly the sensory processing difficulties that so many people living with autism experience.

But as a definition, saying someone has social difficulties trivialises what autism is- we all know plenty of people who lack social skills- this doesn't make them autistic.

Saying a person has social difficulties in no way helps you to explain to someone why the apparently normal-looking child in front of you has their fingers in their ears and is screaming at the top of their lungs or why they've just tried to run up an escalator backwards or why they've just stolen a bag of sugar, eaten half of it and hidden it under the sofa!

In essence, it is a very complex and subtle difference in the brain (as genetic research is now showing) which causes the person to perceive the world in a very different and often difficult way.

Added to that, every autistic person is different.

Recent gene research suggests that many genes cause autism and not every person is affected in exactly the same way- this is clearly why there is so much variation across the autistic spectrum.

When you've met one autistic person, you've just met ONE autistic person.

So, what do you know about autism?

What do you say when somebody asks you what autism is?

Painting by Lyla

Living with Autism Art Exhibition- Now On!

2010-06-09T21:27:00.012+01:00

We held our private view on Sunday- it went really well, and here's what I wrote afterwards:

Sipping rosy wine we interrupt
hushed tapping of library computers
with murmured laughter, clinking glasses.
A year’s work culminates here.

Spotlit by dust flurries
streaming from skylights overhead
‘Autism’ and ‘Aspergers’ animate the airy walls
liberated by the act of speech.

Our small colourful canvases embellish
Snippets of conversation:
joky fragments- ‘meet my mad sister’
inspiring stories connect.

A millionaire's special school
in memory of her dead grandson.
A pale-eyed budding girl chants
Revolting Rhymes with absolute precision.

A young artist beams as children flutter by
dropping crisp crumbs on the carpet.
Later, passing through restless shops
I allow myself to daydream.

Exhibition continues at Putney Library until 19 June 2010.

Autism & Theme Parks

2010-06-04T19:31:00.013+01:00

Happily, autism is something theme parks seem to do well (from my limited experience!)

Today we went to Legoland Windsor with some trepidation - theme parks really should be an autistic version of hell, offering the twin no-no's of massive sensory overload and unpredictability.

However, the combination of fantasy 'worlds' & 'lands' and the fun-factor makes them really appealing to autistic kids.

After visiting Disneyland Paris, Lyla declared that she wanted to live there 'forever and ever'.

Like many places, Legoland offer a free ticket for the carer of a disabled child, but additionally, they offer a special pass for disabled kids which allows them immediate access onto all the rides.

From the description on their website, it's very clear that Legoland's policy relates specifically to autism and related conditions and reading this was what encouraged us to go:

LEGOLAND Windsor’s exit pass policy has been designed to assist Guests’ who do not understand the concept of queuing, have difficulties with everyday social interaction, have a limited capacity to follow instruction or to understand others emotional feelings or expressions, and may become agitated or distressed having to wait for periods of time. The scheme is in place to assist families to enjoy their day in the maximum way and to relieve pressure on the family.

Without this facility there is absolutely no way we would even have attempted Legoland.

As it was, when we had to queue in a boat to get off a ride as one of the boats had broken down, I had to physically restrain Lyla from jumping out of the boat and into the lake as she was 'bored, I'm getting out now'!

About halfway through the day, Lyla clocked that we were able to jump all the queues and asked why- when I explained, she said, 'Oh, because I'm a VIP'.

Yes Lyla, you are.

Some tips for making Legoland easy:
1. In school holidays, arrive at least half an hour before the park opens, otherwise you will queue in traffic for ages and arrive already stressed out!
2. The Exit pass is a must for autistic kids, it makes it do-able
3. Bring your own food- the food in Legoland is good, but very expensive and the sheer variety will upset and confuse your autistic child
4. Leave at least an hour before closing time- you will probably have had enough by then anyway as you will have been to choose which rides you wanted to go on without haveing to queue and you don't want your day to be ruined by a huge queue to get out of the carpark
5. Use the Lost Adult stickers (containing contact info if the child gets lost), if only for your peace of mind and watch your autistic ones like hawks!!

Photo by Me.

The Truth About Autism

2010-06-01T07:38:00.024+01:00

Inspired by my friend and fellow autism-mum, Amelia Critchlow's post of the same title, I've finally got up the courage to tell it like it really is.

Regular readers will know that I like to call it honestly anyway, but recently autism and everything that goes with it has been threatening to engulf me- it won't - but here's why.

The odd looks and comments we get when we go out- especially if Lyla lashes out - I can honestly say don't bother me. I've developed an incredibly thick skin and ability to stare very hard at nosy people.

The stuff that's more challenging is what goes on behind closed doors.

Firstly the emotional ache, which is always there. I try to focus on the things Lyla CAN do rather than what she can't. And when I do this, I am often surprised. Last week she appeared in a fashion show at school and managed to walk down the catwalk in a cast of over 100. Go Lyla! Also, she's the only child in the school to have so little awareness of social graces that when asked in her homework what she thought of the book, just writes 'Boring' and when asked who she thought would like it, writes the name of the author! Or, in the supermarket yesterday shouts out 'If this aisle was full of Paris cheese, it would turn my oxygen to vomit'!!!!

Amidst all these successes and quirkiness, there has also been the challenge of her rampaging through the family home. This weekend she washed all the windows with suntan cream, smashed a vintage chandelier, hid my husband's guitar tuner (the replacement for one she had hidden previously) cut up the sofa and autographed it in violet permanent marker, emptied the whole contents of the freezer out and left them to melt on the kitchen floor, hidden a pile of peas and apples under the sofa, poured fizzy water into toilet wipes box, flooded the bathroom (I'm crossing my fingers for the Victorian cornicing, its holding up so far, I hope it survives, albeit, now dyed a lovely shade of parchment). She also left her favourite outfit in the garden and the foxes got it, keyed cross shapes into my car (I now look like a weird Satanist/ Christian Evangelist driving along, as if I don't have enough to worry about), refusing to wear her seatbelt (and I mean physically REFUSING) and ricocheting around the car.

This is all I can remember for now, but it's enough to be going on with. Don't get me wrong, I don't care about the destruction of my property. Well, I do, but I'm past caring. But I physically can't keep up with clearing up after every incident and do everything else I need to aswell.

And everything else, in autism terms doesn't just mean the other domestic stuff. It means the whole raft of 'strategies' and 'treatments' and 'therapies' that I have to try and implement in order to try and help improve the outcome for Lyla.

I spend a lot of the week at appointments with various professionals, training sessions, reading up and preparing things (visual timetables etc) for Lyla. I sometimes feel like I have a Phd in autism. And still I often feel it's as elusive and unknowable as ever.

To demonstrate, I'll list a few of the therapies that I have either considered or actively DO with Lyla, ranging from the essential to the completely wacky:

Occupational Therapy- proprioceptive training exercises, 20 minutes daily
The Listening Programme- sensory integration therapy, 15 minutes daily
Speech Therapy- ongoing programme of how I speak to Lyla and play games with her to encourage social interaction
Drug Therapy- Melatonin prescribed for sleep by the paediatrician
Nutritional- Fish oils and certain vitamins may help autism
Behavioural Strategies- constantly
Intensive Interaction Therapy
Applied Behavioural Analysis
LOVASS
Son Rise Programme
Biomedical Intervention
Berard Auditory Training
Music Therapy
Osteopathy
Gut Analysis (!)
Hyperbaric Oxygen Therapy
Gluten-Free/ Casein-Free Diets
Social Stories
Visual Aids & Timetables
Play Therapy
Verbal Behaviour
Scotson Method

Lyla is being assessed for ADHD at the moment, so that's another extra layer to deal with.

She's also pretty behind at school because she finds it really hard to concentrate - I try and help her to catch up, but she usually refuses to read or write for me. Everything comes second to her obsession with television, which she watches with the sound cranked up, sat right in front of it, bouncing on a FitBall. It takes over the living room and it's just not worth the fight most times to get her to put it on something I like or even better, to turn it off.

As far as these therapies go, there's always more you could do and there's always the knawing doubt that unless you're flat out doing everything you can- which you can see from the list above would probably take several lifetimes- then you're not doing enough. It feels like a bottomless pit. But I want to do as much as I can and no matter how many times people say that you can only do what you can, I never feel like I'm doing enough, I should/ could be doing more. I want to give her the best chance.

The main point with all these therapies is that you have to do it all yourself. For example, the government will pay for you to have an initial assessment with an Occupational Therapist, but not the therapy itself, so you have to carry out the therapy yourself. Some of the other therapies are only available privately and inevitably some of the provider's try and cash in on people's desperation. I have a friend who has bankrupted herself by paying more than £50,000 on therapies for her son over the last two years.

Doing nothing isn't an alternative for most families, the autistic behaviour needs to be strategically managed, otherwise you end up with having to call the police because you have a strapping 16 year old child who has just beaten you up. Of course, you may implement the behaviour strategies and still have this happen. But you have to try.

So far this morning, she has punched me, screamed at me and lashed out at her sister- this is all part of her impulsive behaviour and her difficulty with managing strong emotions. Nevertheless, these actions leave more than a physical scar.

Additionally, we popped into the supermarket for five ingredients to bake a cake with.....she then got told off by a huge pair of security guards for touching the travelator. I explained that she had autism, because I felt I had no choice. She got really upset because I had told the man she had autism and because she doesn't understand being told off. She cried all the way home and said never wants to go back there again. I felt I hadn't handled it as well as I should, I wish people were more aware of autism- our lives would be just a little easier. I contacted Sainsbury's and asked what their policy was on making the store accessible to people with hidden disabilities like autism. They were very helpful and said they would send a note to all the stores to make them aware of the issue. I've made a decision that when I can, I'll raise the issue rather than suffer in silence as the only people that hurts is us. I told Lyla about the phone call and she said thankyou and then- 'well, the man was an idiot mum, he didn't know anything about autism, he should be sacked'- Go Lyla!!!

It's hard not to feel that all this is more than a full-time job. It is several full-time jobs. Certainly, most nights, I put them to bed feeling absolutely shell-shocked. I lie there and stare, poleaxed, so tired I could vomit, a deadweight, oblivious to all sound, just breathing. And before she started taking sleep medication, this would be just the beginning of an evening full of hyperactivity and violent behaviour.

Then I get up and start all over again.

This is extreme parenting, although nowhere near as severe as what some other families living with the condition have to deal with. I know of mothers who survive on 3 hours sleep every night (from 10pm- 1am every day) because they have a child who can't sleep, even on medication.

I'm starting to get several minor stress-related health complaints like stomach ulcers. I sometimes wonder if I will last the course as I don't see how this level of stress is sustainable in the long run. As families we need help. I need help - a fairy godmother or failing that somebody, anybody is welcome! People wrongly assume there must be help out there for us. There isn't. We have to help ourselves. The story of one of the parents on the TV programme Young Autistic and Stagestruck comes to mind. Her son was rampaging around the house, so she took him out in the car, where he attacked her. She came home and called emergency services and said somebody had to help her or she would take herself and her son and jump off a bridge. This is heartbreakingly wrong. We should and could be doing more, so much more, for families living with autism.

So this is the reason for our Living with Autism artshow- to allow the participants to share something important to them and the raise awareness of our lives.

We exist.

Living with Autism Art Exhibition

2010-05-30T20:39:00.015+01:00

Living with autism hasn't been easy of late and I've been feeling less than bulletproof.

I'm curing myself with lots of rest, chocolate and the occasional glass of pink wine, so hopefully normal service will be resumed shortly!

We hung our Living with Autism Art Exhibition today in readiness for it's opening on Tuesday.

I'll post further about this, in the meantime, please see our Living with Autism project website:

Living with Autism

Collage by Me

Strange & Beautiful Reaches Final in MAD Most Inspiring Blog Award 2010!

2010-05-18T08:26:00.010+01:00

My offers of free virtual champagne seem to have paid off. It looks like I'll soon be putting in an order for several jeroboams of champagne. You lovely people have been voting for this blog and miraculously we are in the top five out of one-hundred and seventy eight nominees! So, it's official, Strange & Beautiful is in the final of The MADS.

Voting is now open for the second stage of the MADs at www.the-mads.com, and over the next month bloggers and blog readers will be able to vote for their favourite blogs.

The MADs are all about celebrating parent bloggers and raising awareness of the range of blogs being created in Britain today. The awards are very generously being sponsored by Butlins and my category by Plum Baby.

I'd encourage you to check out blogs in all the categories as there are some real gems to discover.

Here's what the MADs site says about this blog:

Strange and Beautiful is the deeply inspiring story of Rachel who is Mum to twins, one of whom was diagnosed with autism in 2008 at the age of five. Things which normal families take for granted are often very difficult for the family, but the blog reminds us that five-year-old Lyla is still a charming, engaging little girl who brings the family lots of smiles.

So, if you like this blog, please vote now by clicking on the MADS link on the right hand side of this page - there'll be virtual champagne all round!

xxx

PS Hello to new followers! I'm in the process of coming round to say Hi to you on your blogs, lovely to meet you :)

Painting by Lyla.

Is Autism a Gift?

2010-05-10T19:49:00.016+01:00

This topic was recently debated on a TV show.

The stereotype of Rainman persists and it is often, wrongly, thought that all autistic people are geniuses.

It is true that the existence of savants or geniuses is five times higher in the autistic population than in the general populus but stands at only 5% of the total autistic population.

So, 95% of autistic people are not geniuses.

So is autism a gift?

The panelists, who had no direct experience of autism, all had tales to tell about people they knew who very laudably 'wouldn't change their autistic children for the world'.

This is very easy for them to say!

The poem 'Welcome to Holland' was read out:

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

c.1987 by Emily Perl Kingsley

I think the parents of autistic kids that I know might say it's more like Welcome to Beirut!

Rebranding autism as a gift is nifty get-out clause: It is carte blanche to ignore the very real plight of families living with autism as they have been blessed with a 'special gift'.

Those parents who called into the show or were in the audience were unaninimous in arguing that they felt autism definitely isn't a gift.

Why not?

Anybody who has read my blog will understand that autism is a tricky path both for the person living with autism and their family.

The precise reason we say this is because we love our children deeply, but is impossible not to feel their pain and living with autism is relentlessly tough.

I have spent whole days sobbing, thinking Why Us?

If somebody offered Lyla a magic wand that would take away the autism, I would give it to her like a shot.

She came home today and cried for 2 hours because her classroom at school had been rearranged, without warning.

She was massively anxious that she'd lost her place in the classroom and was no longer a member of the class.

Lyla is a very precious gift: if I could take away this pain, I would.

Wouldn't you?

How to Grow A Tummy Bug

2010-05-05T10:42:00.007+01:00

Yes, we've succumbed again!

After a year relatively free of the horrors of the tummy bug, me, Lyla and Mya have been busily decorating the house with vomit again.

It's a times like these when all it takes is something small to lift the situation.

And today, we had Lyla's Tales of the Tummy Bug.

Being autistic, Lyla can't understand that a bug is a euphemism for a virus or germs.

She literally believes that a bug has set up home in her tummy and now that thought is planted there, no amount of reasoning can remove it.

So, as she's feeling a little better today, she thinks the bug is 'shrinking'.

Later she came and showed me a little green bruise on her hip and asked me what I thought it was - when I said 'a little green bruise' - she looked at me with total disdain, 'No mummy it's where the bug is sitting to lay it's eggs'.

Obviously- how could I have been so dense!.....it often baffles me when lack of imagination is (wrongly) cited as a sign of autism. It's certainly not in short supply here.

Her vivid fantasy universe seems to run parallel to our literal one.

I often wonder if she will grow out of it and 'get' reality.

But part of me hopes she doesn't and stays as lovely and magical as she is.

Picture by Lyla.

To Show You How My Heart Beats

2010-04-17T10:53:00.007+01:00

I've been dipping into Talkability recently, a speech & behaviour therapy book that helps you to communicate better with your child and teach them social skills.

One of the chapter's I've been concentrating on is responding to your child's cues to start a conversation. Apparently they're more likely to respond if the topic is one of their choice.

I find it hard to talk with Lyla.

Firstly because she often ignores me, gives one word answers or if she does respond says something so confusing and way-out that it stumps me. And then she runs off.

So, when she came in this morning and put this empty red sweet wrapper in my lap, my first instinct was to put it in the bin.

But, having swallowed a whole chapter of Talkability last night, I used her action to try and engage her.

So, I said her name, then asked her what it was for, then paused - apparently this silence is a very important cue for an autistic child.

After a few seconds wait, she turned around, looked me right in the eye and said 'To show you how my heart beats mummy- it means I love you'.

Wow.

I'm still beaming, it's such a privilege for me to be 'let in' to her world.

Let's hope there's lots more to come....

Strange & Beautiful Nominated for Blogger of the Year in the MADS 2010!

2010-04-13T20:19:00.011+01:00

Well, knock me down with a feather, some very kind readers of this blog have nominated me in the Mum and Dad Blogger of the Year Awards. Not only that, but you've also nominated me for most Inspirational Blogger of the Year too.

Whoever you are, please make yourselves known to me, so I can buy you a virtual glass of fizz!

And I'd like to extend this bribe, I mean offer, to any of my other lovely readers who care to vote for me!.....it'll be virtual fizz all round if I win anything...

I haven't been writing this blog long and I know autism is quite a niche subject and not everyone's cup of tea, so thankyou, I really appreciate all you readers who support the blog.

If you would like to vote for me, the procedure is very simple. Click on the MADS link in the sidebar, then click on Nominate Now on the MADS site. All they ask for is your name and an email address and the url address of this blog (which is www.strange-beau.blogspot.com )

And if you're feeling extra-generous, you could put me down for the most Inspirational Blog category too!

Thankyou :)

Young, Autistic & Stagestruck

2010-04-12T21:09:00.010+01:00

After dealing with autism all day, watching it as my evening's entertainment is often the last thing I want to do.

However, I'm so glad I was cajoled into watching Young, Autistic and Stagestruck (Channel 4, Mondays 8pm).

The series follows nine autistic youngsters through their attempt to stage a variety show at a prestigious London theatre.

Funny and heart-breaking in equal measure, it was compulsive viewing, particularly for us as ASD parents.

What was so uplifting was seeing so many scenarios that are commonplace to our lives, but usually happen behind closed doors and are never aired on TV: the tantrumming, the sulks, the shouting, the hyperactivity, the swearing, the smearing poo, the rudeness and the odd behaviour, ....the sheer strangeness that is normality for a family living with autism.

Flicking through reviews of the programme, the word voyeuristic kept cropping up: this seems more a reflection of people's discomfort with autistic people and how they behave rather than a true representation of the programme, which was pretty sensitively handled.

What was particularly heartwarming was seeing the group grow in cohesion, the performers grow in confidence and the brave (!) directors' confidence grow in this unique bunch of kids and the quirky humour which ensued.

Can't wait for next week's episode!

World Autism Awareness Day

2010-04-02T11:32:00.004+01:00

I just wanted to post quickly in honour of World Autism Awareness Day today.

April is International Autism Awareness Month. And last night, the Empire State Building and other US landmarks were lit up blue to raise awareness of autism.

I've been really busy recently on an art project to raise awareness of autism. I'll be posting about it shortly, but if you'd like a sneak preview, please visit my new site Living With Autism

Autistic Happenings

2010-03-18T19:22:00.007Z

Things have been rather hectic of late at Maison Strange. I've been very busy in the run up to the Living With Autism art workshops which I'll be helping deliver tomorrow.

Just to keep things interesting Lyla's ramped up her autistic activities at home.

I normally like to ponder and explain these idiosyncracies of autism, but I'm so drained a the moment, I think I'll list some of them and lay it open for you, lovely readers!

1. The egg-smashing has resumed. This time, kiwi-fruit are also involved

2. Lyla smashed a window. It wasn't part of a tantrum, she simply picked up a rock and threw it at the window. When asked why she did it, she cried.

3. Lyla broke the washing machine circuit board whilst trying to crack the child lock.

4. She dug up ALL the daffodils and replanted them with onions from the fridge (interesting this one?)

5. Lyla has consumed half a bag of frozen peas and hidden the rest of the packet under the sofa.

6. She's shredded three rolls of Andrex into confetti sized pieces and arranged them in random sequences around the house. Apparently they're messages.

7. The last one's an old favourite.....pouring all the shampoo/ bath foam/ Fairy liquid down the plughole.

I leave you with a picture I took of my reflection in a clock yesterday, kinda sums up how I feel right now....

Hello Technorati!!!!

2010-03-15T08:26:00.004Z

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For anybody not acquainted with the geekeries of blogging, Techorati is a blogging index. The code above represents me waving a flag at them shouting 'I'm not a Spambot'.........Don't ask.....

Life in the Fast Lane

2010-03-02T10:15:00.013Z

ALL my talk about being Miss Marple last week must have had some effect as I'm now several steps closer to becoming a lady d' une certaine age!

Yes, I have been sampling the delights of the Mobility Scooter.

Since I broke my foot and ankle, forays into the world outside my front door have been few and far between. So, when the kids suggested a day-trip to The Museum of London, I was mildly pleased at the prospect. My other half had thoughtfully arranged for us to borrow a wheelchair at the museum.

What could possibly go wrong?

Apparently, the joke was on me. When I arrived at the museum, the desk clerk very helpfully offered to bring out my 'mobility aid'. Seeing her coming back on one of Brian-Potter's finest, I checked behind me to see which of the other mobility-challenged had queue-jumped me. Then the clerk offers to show ME the controls.

I didn't know whether to hold out for the wheelchair or just jump on the tartan-trailbike and pimp my ride! Having decided it was game-on, one twin immediately said 'Mummy, can I pretend I don't know you?'. This particular minor also refuses to walk with us when daddy pulls along his pilot's wheelie-bag. And frankly, who can blame her?

Her twin had other plans. Being autistic, she just saw the fantastic climbing possibilities.

So, some tips then on the art of riding a mobility scooter:

1. They have a pretty wicker basket (handy if Toto is in need of a lift)

2. An alarm sounds when you reverse. It is very loud.

3. You will have to reverse A LOT as the steering is crap.

4. If a child jumps on the back as you're traversing a ramp, it will tip over.

5. People will stare at you (think the opposite of 'Wow, there's Kate Moss')

6. They can go very fast. In a crowded museum this is very good.

7. The accelerator can jam. In a crowded museum this is not very good.

8. It is fun to channel this Goldie Lookin' Chain hit as you drive:

shopmobility, shop, shop, mobility
shopmobility, shop, shop, mobility
shopmobility, that's the one for me
i nicked it from my gran when she was watching tv
I gets to ride round, it's sound, for free
and everybody said, 'he's in the GLC!'

And if all these tips fail, don a scarf & shades a la Jackie O, & pretend you don't know yourself.

Finally, a note to my other half: NEVER EVER try this trick again.....you have been warned!!!

Small Pleasures

2010-02-27T19:48:00.005Z

It's a photo-post today. I don't know if I'm in a sappier mood than usual, but after last week's antics, the kids have been up to some really sweet things. I've snapped some of them, from graffitti on the kitchen table to the posters in our front window:

Being Miss Marple

2010-02-19T10:33:00.019Z

I'm always up for a bit of a puzzle. And now my rather geeky taste for conundrums is helping me out in real life.

I've touched on this before, understanding autistic children, even (or especially) for those of us who know them well can be tricky.

Yesterday Lyla smashed 24 eggs in the sink, poured all the shampoo & bubble bath in the house down the plughole and then hid my MacBook....

Now, this is nothing new, she has done all these things before (many times!), but each time there's a different reason. And that's the puzzle....

Sometimes her behaviour might be acting out something she has heard and taken literally, for instance 'Don't put all your eggs in one basket'- this is usual for autistic people.

Having asked her why she'd done it, the next day (sometimes it can take Lyla this long to process a question, or even longer), she said that she'd done it 'as a sign for me that she want's to make cakes' (?!).

Now I have no problem with us making cakes, but the egg-cracking and stirring part can only be drawn out for 10 minutes, max, so I had to think up something else suitable.

It seems that the egg-cracking & shampoo-pouring satisfies some sort of sensory deficit, common in autistic children.

So , to prevent the cost of constantly replacing eggs and shampoo (even Poundland shampoo gets expensive if it's poured away every day), maybe she might enjoy trying Play-doh again?

We previously had to ban Play-doh because she ate it in such big quantities and ground it into everything- carpets, video slots and most memorably the door lock, where it set and I had to call a locksmith to open the door.

I used the this recipe from The Madhouse and added pink colouring glitter, my special ingredient for a touch of glamour- it's the best one I've tried, although you need seriously buff biceps when it gets to the kneading stage!

250ml salt
750ml warm water
750ml plain flour
3 tablespoons of oil
6 teaspoons of cream of tartar
Food colouring

Just put the salt & water into a pan and wait for the salt to melt. Add the rest of the ingredients and heat over medium heat until it starts to pull away from the sides. Knead it for a bit, eh Voila!

And the result......

Two hours of playing (Ten minutes is usually a struggle for us!) and 'I LOVE play-doh''s all round.

Episodes like this make me think I should go away and read Jung's Man & His Symbols or make like the cheesy Robert Langdon in The Da Vinci Code and become a full-time 'Symbologist'!!

So, the unlikely solution to the mystery of the egg-cracking was Play-Doh.

Who said I shouldn't be a detective?

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Sunshine Blog Award

2010-02-17T15:31:00.028Z

Thankyou very much to Superlittlemen of I Love My Mad Life blog for giving me this award :-)

When I first started blogging (all the way back in October 2009!!!), I was really keen to find autism & other blogging sites that I could relate to.

So, here's an opportunity for me to list some of the blogs that I've found inspiring so far.

Right so the rules of the award are as follows:

* Put the Logo on your sidebar, or within a post.
* Pass the award onto 12 Bloggers. (yes really 12)
* Link the nominees within your post.
* Let the nominees know they have received this award by commenting on their blog.
* Share the love and link to the person from whom you received this award

My first blog is 101birdtales, because Amelia who writes it was the person who encouraged me to blog in the first place. Thanks for giving me the push. She's a good friend and her blog is really inspirational- go have look!

These are all lovely and interesting people:

Crystal Jigsaw for her warm-hearted writing about her life and her autistic daughter

A Boy with Aspergers for being so informative and to great, pro-active Claire who writes it!

Mother of Shrek- Casdok's writing is brilliant and she has an extensive list of interesting links

Oliver's Journey about a family's journey with autism, Ali also set up the excellent Autism UK page on Faceboook

Off We Go blog, packed with lots of interesting autism snippets

Autist's Corner for some thought-provoking posts on the issues around autism, from an autistic woman's point of view

Whitterer on Autism, tales from her life with four children, two with autism, two without

I Love My Mad Life, a brand new autism blog

Two autism blogs which inspired me when I started, who are worth a watch as I'll hope they'll post again soon are:

Rebel Mother

Beautiful Spectrum

Finally, More than Just a Mother -just discovered her blog, which she subtitles Extreme Parenting...she's got an interesting story to tell about her babies, one I can relate too as a fellow twins-mum

So, go visit these blogs & let's share the love!!!! ;-)

Ten Surreal Moments

2010-02-13T11:08:00.020Z

This post is in response to the British Mummy Bloggers Carnival (writing competition) organised by Carly who writes the blog Wives & Daughters. The challenge is to think of your Top Ten Surreal Mummy Moments! So here are a few of mine......

The very FIRST thing that comes to mind is the day I found out I was going to be a mum. I was chatting away with my husband at the scan, having been told that the baby was fine. But then the sonographer leaned over and asked if I had twins in the family which I thought was rather odd until she turned the screen round and said 'because there are three babies in there'. I just dissolved- TRIPLETS!!!! How would I ever cope?

The SECOND surreal event was the birth. Having been booked in for a planned Caesarean, it was rather odd turning up and booking in: 'Hello I've come to have my babies'. Like checking in at a really grotty hotel! Three babies had sadly become two. I remember hearing a baby cry as they lifted it up and saying 'It's a baby!'. It seems strange now that I would have been shocked: you'd have thought the penny would've dropped after nine months.....

The THIRD thing which can't pass without comment is the size of me before I gave birth. I had water retention and lost almost 3 ½ stone during the Caesarean! I looked pretty normal from the front but from the side it was total eclipse of the Sun...

FOURTHLY, having both babies in admitted to hospital in the same week (one on Valentines Day) at the age of nine-months. One had bronchiolitis with severe breathing difficulties, the other had bacterial meningitis and septicaemia. Quite serious, but thankfully they're both fighting fit now.

Baby Reggae in Brixton is the FIFTH thing which comes to mind. Rasta Santa in his black taxi- brilliant!

SIXTHLY, being used to being accosted in every supermarket/ shop/doctor's surgery/ street by people asking are they twins/Buy-one-get-one-free? And then the inevitable cavalcade of questions: Breast or Bottle? Natural Birth? Identical or Non-Identical? (Er no, ones dark and one's blonde- who was bunking off O-level biology then, eh?) But while these (quite personal!) questions were the norm, the most surreal one was from the lady who stopped me in Marks & Sparks & asked if they were had the same dad??????? I've since been told that this IS biologically possible (don't ask!)....but I don't quite think that was ther gist!

The SEVENTH thing I can't forget is returning on a 12 hour night-flight from California after a family wedding when the twins were sixteen-months old. Everything started well with people cooing over them. But the attention soon turned hostile when they started screaming. In Stereo. And didn't stop for the rest of the flight. Happily, my memory of the event is slightly blurred by the alcohol that the lovely gay flight attendant kept plying me with from the First class cabin!!

Number EIGHT: I went up to the loo. I came down. Two tots were sitting on the floor with a bottle of Jack Daniels, which they'd poured into two glasses. One twin held up the glass at me and said 'Nice'. (Please don't call Social Services!!!)

I still cringe when I recall number NINE. They were three. We needed shoes. Everyone else's single kids had long stopped using the buggy, so I thought I'd better wean them off it. BIG MISTAKE!!! Both decided they didn't want shoes, ran out of the shop, and off into the crowds in opposite directions. Which one should I chase first? I ran for the nearest one who then started screaming 'You're not my mummy' and shrieking as if I was about to kill her. I was nearly in tears as I couldn't find the other twin and then looked up to find a police officer asking if he could help me?

Number TEN has to be the day they locked me out of the house. They were three. I went to put the rubbish, out taking my key in case the door slammed. When I turned the key in the lock, I realised that they'd deadbolted the door against me. I could see one child through the letterbox (who refused to open the door). The other twin was nowhere to be seen and wouldn't answer me. After the frantic involvement of neighbours and phoning locksmiths (who were too busy!), my mother's instinct took over and I managed to kick the door down and discovered the other twin sitting by the open freezer having slyly consumed several tubs of ice-cream.

I feel quite exhausted having related these tales of my domestic chaos, so I'll put my virtual pen down now......thanks for reading.

Rachelx

I Am Autistic: Telling Lyla

2010-01-30T15:11:00.012Z

In my last post, I touched on the fact that Lyla mentioned she was autistic. I thought it was worth sharing how and why we told her about her autism.

Encouraged by a wonderful child psychologist who'd been helping me with ideas on Lyla's challenging behaviour, I took the decision to tell her about her autism. It had become clear in my discussions with he psychologist that Lyla was a lot cleverer than her language skills made her appear and she was outwitting a lot of the behavioural strategies that we were putting into place.

To compound things, she was attending a failing school in a rough part of Inner London, where she was put in the bottom set and used to get taken out of class 'with the idiot group, because I'm a stupid girl'. Because she couldn't play appropriately with children her age, she joined the 'Monster Gang' at school and would come home every night and hit, headbutt & kick me because she had to 'practice her fighting'. She was an extremely confused little girl and her self-esteem was at an all time low.

She knew that she was different and was finding negative reasons to explain it to herself. So, I thought she'd feel better if she knew the real reason why she found life hard and stopped blaming her poor self. She had autism whether we chose to acknowledge it or not. I didn't want to present it in a doomy, scary way, (that might be related to a therapist in years to come: 'Son- you have Autism'), so I tried to find the most positive way to tell her. .

I came across the book 'I am Utterly Unique' by Elaine Marie Larrson. It's a picture book with an A-Z of all the cool things about children with autism. I liked the explanations because they were things which Lyla could actually relate to and were cheerfully thought-out. For instance, the letter H, 'I am a Happy Helper': teachers of autistic children know that they love to be given a job to do and this can be a good way to integrate them into the class. Other letters I particularly like are G, for 'genuinely goodhearted', O ' I have an Original Outlook' and T 'I Tell the Truth'.

After we told Lyla about her autism (when she was 5), she became noticeably more relaxed and cooperative. It seemed to have answered the questions that were going round in her mind. It's by no means cured her challenging behaviour (although moving to a lovely new school has helped a lot with that) but it's a start. Now she knows, it's not like there's a big secret that we're going to have to tell her about one dreadful day. It's just part of her and our lives. Lyla feels more understood by us too and reading the book together, I can't help but feel a stab of maternal pride at what a wonderful utterly unique girl I have cuddled in beside me.

Calamity Corner

2010-01-23T20:28:00.012Z

January's been a very accident-prone month here. Having managed to fall down the stairs on Christmas Day and sprain my ankle, I then outdid myself by tripping over a child's shoe at the bottom of my stairs and breaking the same foot, spraining it and re-spraining the ankle. That was four weeks ago. In typically deluded fashion, I thought I'd be all fine an dandy by now, but I'm not. I'm ankle-deep in physio and am now facing the possibility of an op and a long period of immobility. And all because of a pair of (autistic!) child's shoes. And my own clumsiness! It goes without saying that chasing children around has become a more of a challenge than usual.

It also highlighted to me how hard it is for our autistic children to comprehend unforeseen events. Lyla was terrorised by seeing me fall. Clearly, the books/films/TV she's seen have created the impression in her mind that if somebody falls they're going to die. She was hysterical, crying that she loved me and didn't want to lose me. Nothing I said could comfort her. Whilst lying on the floor in shock, I tried to make light of it and explain it was only a silly foot and that I would go to the hospital and the doctors would make it better. Unfortunately, she couldn't be comforted and was so upset that she just couldn't listen. Mya, her twin, got annoyed with her and told her to shut up as I'd be fine but she responded by screaming she had autism and found it really hard. I found the insight in this comment really heartbreaking. On the one hand, I'm glad that she understands herself but at the same time, it was difficult to see her struggling.

Understanding herself doesn't seem to be enough to help her cope. And this is one of those unforeseen situations in life that we all find difficult to adapt to. Let's hope 2010 brings us all more surprises and less shocks!

With The Light Pt.1

2010-01-16T18:45:00.010Z

How surprised was I to find a Manga-book about autism at the bottom of the bargain bucket at the Border's closing-down sale?

Keiko Tobe's book In the Light is fictionalised account of her struggle raising an autistic child. Sachiko gradually realises that her son Hikaru seems a bit different from other children. He is eventually diagnosed with autism. The book is translated from the Japanese and retains its graphic, cartoon format, which makes it quite a visual treat. I can imagine my daughter's being interested in reading it too when they're older. When I've finished it, I'll post a full review- it's worth looking up!

Drawing Autism

2010-01-09T19:06:00.016Z

Since I'm stranded at the moment with a broken foot and sprained ankle, I've been thinking a lot about the autism & art workshops that I'll be helping tutor on this year. I'll be getting together with the wonderful Amelia who writes http://101birdtales.blogspot.com about her creative life. Pop over and have a look!

I 've found an interesting new book called Drawing Autism, by Jill Mullen which compiles the work of over fifty artists with autism. I like it because it doesn't concentrate on the artistic savants, like Stephen Wiltshire, who is well-known for producing amazing citiscapes but rather on unknown artists, whose work reflects their autism in some way.

There's lots of good stuff here. But one piece that I found particularly impressive was Rachel Mark's Metaphorical Maze. It is a clever visual representation of how hard it is for autistic people to understand non-literal language. For instance, Lyla nearly got upset the other day when I said her sister was 'crying her eyes out'. This was because she thought that her sister Mya's eyeballs would literally fall out if she cried. This is not because of a deficit in intelligence. It is because her autistic brain takes language at total face value. Another instance is if I ask Lyla 'Can you get your bag?', she will reply 'Yes' and do nothing. This is not awkwardness, she is answering that yes she can get her bag, not understanding that the question implies that she takes action. Instead I would need to ask her, 'Can you get your bag?' and then she would understand. I have constantly check my language to make sure it's clear and concise: too much language is hard to understand for autistic people and cause a great deal of stress. For Lyla, this often means challenging behaviour.

Another piece that I found very beautiful was Marliyn Cosmo's Strung Fairy. She says 'fairies are not quite of this world which I relate to'. I found this interesting as it echoes Professor Uta Frith's theory in her book Autism: Understanding the Enigma that autistic children were historically viewed as changelings or faery-children due to their ethereal beauty. There is often something faraway in the autistic gaze, simply because many autistic people find making eye contact so hard.

There's lots here to inspire. Hopefully we'll also have lots of wonderful artworks to share from our workshop soon!

Autistic Intelligence

2010-01-01T02:04:00.018Z

I've just read a really thought-provoking post on the blog Autist's Corner.. The post responds to magazine problem-page article where a reader asks the Agony Uncle what jobs he can't do if he has Asperger's Syndrome. This is something I and other parents of autistic kids worry about: The Future: Will my child be able to live independently/ hold down a job/ have a relationship/ be happy? To some extent, the future is an unknown for all of us, but this is especially true if you are new to autism and worry for your child's wellbeing and happiness.

Stereotypically, and possibly because autism is a predominantly male condition, the jobs which autistic people are considered to be suited to or interested in are those in computers, science and mathemathics. This is because these careers deal in predictable outcomes and suit the traditionally-imputed rigid-mindset of autism. Also, they don't necessarily require socialisation. But what if you're autistic and not interested in computers? Or if you're no good at IT? And what if you, like many other autistic people want to be social?

What if your child is more creative than technical? Despite being autistic, Lyla is highly imaginative, to the extent that she seems to live in a whole imaginary universe that she makes up as she goes along. She'll often string together lines or stories from films she's seen or books we've read and pretend this is her life. It seems to me, that maybe this special kind of autistic intelligence is something to be celebrated.

So, it was heartening to read the list of famous people, diagnosed with autism, who have non-stereotypical careers. I've reproduced part of the list here (clearly these people are at the very high-functioning end of the spectrum):

Actors: Daryl Hannah, Dan Ackroyd, John Turturro
Fashion Model: Heather Kuzmich of America's Next Top Model
Musician: Ladyhawke, Gary Numan, Craig Nicholls of The Vines, Courtney Love
Playwright: David Mamet
Athlete: Surfer Clay Marzo, Marathon Runner, Jonathon Brunot

Photo: Lyla making a collage of Matisse's Snail @ Tate Modern

Christmas Carols

2009-12-28T08:40:00.011Z

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!

Thankyou

2009-12-18T19:08:00.000Z

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!!

S&Bxx

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

The Stress of Autism

2009-12-08T21:25:00.001Z

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!!!

Rxx

Photograph: Barbara Hepworth 'Madonna & Child'

The Road

2009-11-29T10:40:00.001Z

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?

Demolition Girl

2009-11-22T21:30:00.001Z

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.

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

2009-11-16T12:58:00.000Z

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.....

Fireworks Night

2009-11-11T14:02:00.000Z

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