Monday, 30 May 2011

A Communication Breakthrough

People with autism rarely use communication to share experiences. Chrissy is no exception & bypassed the pointing-at-objects developmental stage. She has never drawn my attention to a new discovery she's made or engaged with me about something she's observed. Until yesterday.

On the drive home Chrissy spontaneously reached for her symbols book & began leafing through the pages. We use symbols alongside speech & basic signs to explain what's happening next but she has never used them to initiate any form of communication with us. Until now.

Chrissy smiled and made eye contact to get my attention then pointed to a symbol saying 'Chrissy is going home on Saturday.' (Every home-time day is 'Saturday' to Chrissy). She then, in turn, produced the symbol for car, another one with a stick figure labelled 'mummy,' &, finally, a symbol labelled 'football pitch.' The former made sense - she was going home in the car with mummy. The latter puzzled me. I didn't know why the symbol was in her book. It looked more like a TV set than a football pitch....Then I twigged. 'Is it computer?' I asked. 'Yes!' Chrissy beamed.

I was enchanted - by the gentle way that Chrissy had shared her thoughts about what we were doing, & by the way she'd expressed her wishes for what she wanted to do when we got home. Our interactions felt primevally human & bonding, & touched me as deeply as last week's plastic spoon incident, albeit in a different way. Both experiences have given me a rare insight into my daughter's true thoughts & feelings, & inspired me to work even harder to give her the best life possible.

The next day, seeing a new crop of bruises on Chrissy's naked body as I bathed her brought me back down to earth. Self-harm is still a big issue & she is as volatile as ever. She did, however, at one point, remove herself to her room for time out, then emerged declaring: 'I've finished crying mummy.'

Again, on the journey home, Chrissy showed me the car symbol with a smile.

Chrissy usually acts purely on impulse & she must have tried really hard to develop her reasoning & communication skills to this level. I hope it's something that her psychologist, speech therapist & I can continue to build on.

Monday, 23 May 2011

The Stuff of Life: The impact of a genetic diagnosis

The Stuff of Life: The impact of a genetic diagnosis: "Deciphering developmental disorders (DDD) is an exciting new project run by the Sanger Institute in partnership with NHS genetics clinics...."

Sunday, 22 May 2011

The Uniqueness of Each Person with Autism

I picked Chrissy up earlier than usual on Saturday & was told that she'd had an unsettled morning, kicking off about when I was coming to pick her up. She repeats 'is Mummy coming on Saturday?' whatever day it is, & whether I'm coming or not. Her demands get increasingly loud & shrill until she loses control, & throws herself on the floor in a full-blown outburst. She had fresh bruises on her arm & leg, & dried blood in one nostril from self-harming.

Chrissy enjoyed our drive home, listening to the radio & watching me with a quizzical smile on her face. She is as fascinated by neurotypical people as we are by her!

The weekend passed without event. Chrissy was her usual restless self, plying me with repetitive questions - 'What's for dinner? 'Where are we going later?' 'Can I have a banana?' 'Can I turn the light on?' 'What colour's that car?' (Chrissy is obsessed by colours) She fixates on one person & shadows their every step. We get stuck together in doorways, like the Laurel & Hardy revolving door sketch, & I often trip over her when I turn round suddenly.

There were a couple of outbursts but they didn't last long & there was no stripping or major self-harming episodes. The big one came when we tried to take her back to the hospital. As always, she wanted various things in her bag - a chocolate mousse, her plastic cup & a bottle of watered down diet coke, then we had to tie a bow in the bag. At the last minute she demanded a spoon (a metal one). Chrissy, like many people with autism, is extremely single-minded. Due to what happened last week over the blue plastic spoon, we refused very carefully, following behavioural management guildelines; we didn't say no, we said she could have a spoon next time she came home. We managed to get her into the car then all hell broke loose - Chrissy rubbed her nose until it bled, pulled her hair, bit her hands, all the time roaring 'Wanna spoon!' She then tried to undo her seat belt & climb in the back 'to sit with mummy.' I took her hand instead & the mayhem stopped just like that. I wish that simple technique worked every time...

I'm reading a fascinating book by Charlotte Moore, a mum of two autistic sons called George and Sam. Her boys couldn't be more different from each other, & Chrissy is completely different again. No wonder autism is so hard to diagnose!

Sunday, 15 May 2011

Blue Plastic Spoons

My guilt at leaving Chrissy in a 'place like that' gnaws away at me. It started when we first received respite care. It's about institutions & what they represent - the one-size-fits-all approach, strangers paid to look after my child. 'I should be doing it!' my heart cries out. I have frequent dreams about caring for Chrissy as a tiny child again. She is Peter Pan-like, never an adult.

When medical professionals first said that Chrissy would be better off in a residential environment I doggedly refused. When she was 10 they said that we had done 'remarkably well' to cope so far but such extreme challenging behaviour needed a level of structure & consistency that a home environment could never provide. At 10! I sat & wept through so many meetings, knowing that we couldn't go on like we were but desperate not to send my child away.

Time passed & we stumbled on. Chrissy's increasing size was the deciding factor. Descriptions of our struggles to manage extreme, violent prolonged outbursts in an adult-sized person are in my book 'Bringing Up a Challenging Child at Home.'

We were very lucky to find a fantastic termly boarding school about 45 mins drive from our home. Chrissy went there from age 14-19, & loved it. I missed her terribly but never saw the school as institution-like, & she was home during weekends & school holidays. When Chrissy left school, I picked residential places that looked homely, as the hospital wards do where she is now.

But the blue plastic spoon incident was a stark reminder. Chrissy is in an institution.

She developed an obsession for taking metal teaspoons from home back to hospital. I always had to sneak them back with me as, for health & safety reasons, the hospital does not allow metal spoons on wards. I fully understand why but it was hard the first time I saw Chrissy being given a blue plastic spoon when she asked for a spoon for her dessert. She became distressed & rejected it. She has never used metal cutlery to harm herself or anyone else but, like all the other patients, she was being denied it, & her autism made it tougher for her to deal with.

That small blue plastic spoon symbolised how little control Chrissy has in her life, & the numerous small but bruising injustices & inequalities she faces due to her disability. It also highlights how actively Chrissy tries to communicate her needs. If she asks for something unusual, or develops a new obsession or ritual, we should explore what she could be trying to tell us. Although we can't always promise her the outcome she desires!

Friday, 13 May 2011

Perfect Days

What a fantastic mood Chrissy was in tonight. No outbursts, not even a hint of one. I heard her clapping & cheering when I arrived to pick her up. I was told it was because she'd heard I was coming. When we got home she was chatty & playful, laughing at & interested in the antics of our two cats. Anxiety-related autistic traits were subdued - there were no bedtime rituals & minimal obsessive/compulsive repetitive questioning.....No, not a wonderful dream or wishful thinking. That's the enigma of Chrissy. It's a privilege to share these inexplicably 'perfect' times & they light up our lives.

Chrissy's Epilim has been increased as part of a programme to withdraw another anti-epileptic, with the ultimate aim of reducing the number of different drugs she is on. Could that be why she seems so joyful & relaxed? Experience tells me not....

Sunday, 8 May 2011

Severe autism & social inclusion

Increasingly, we are finding that outbursts occur when Chrissy can't make us understand what she wants. If she sets her mind on something she NEVER gives up!

Problems at mealtimes are a recurring theme. Last night she couldn't wait for her dinner & kicked off for half an hour, screaming & self-harming on the kitchen floor. I wonder if we should change the time we pick her up so that she has dinner almost immediately after we arrive home. I could plan pre-prepared meals.

Bedtime issues have been resolved by us adhering to Chrissy's rituals - these include sleeves, no matter how short, rolled over, 2 pillows with top one being turned over twice, & blanket pulled up so Chrissy can feel it over the top of the duvet....It just took us a while to understand exactly what Chrissy wanted.

This morning Chrissy kicked off because she wanted a 'remote control' for her laptop. In the past, we worked out that 'remote control' meant mouse. This time, we finally figured out that she wanted the remote control for her portable DVD although she soon realised it didn't work with her laptop.

Chrissy has periods of repeatedly asking for something & we struggle to work out what it is, then there are periods of relative calm alongside magical moments - this morning when Chrissy got up she spontaneously asked me for a cuddle & last night she made funny noises that made me laugh, & kept repeating them to amuse me again - a charming, playful side we love.

I felt sad to see how many injuries she had from self-harming. A toe is so black & blue I cringe to look at it yet it doesn't seem to bother her at all, ditto a raw looking scuff mark on her shoulder. Her nurse told me that her behaviour has worsened since the arrival of a new patient on the ward - another severely autistic lady who is also very challenging. I was reassured that Chrissy isn't afraid of the other patient; adapting to another change in her environment could be a trigger but it could be coincidence - Chrissy has also emerged from a cluster of epileptic seizures. Sometimes she is calmer during periods of increased seizures - a pressure cooker effect recognised by epilepsy specialists.

Chrissy's mercurial moods are an integral part of her & massively inhibit social inclusion now she's an adult. Her environment is probably as good as it will ever be & obviously that plays a key role. What's so heart-breaking is that we have seen her much more stable than this for long periods with the addition of an effective drug regime. The question is can this ideal ever be achieved again & how much longer do we have to wait to find out?