Friday, 30 December 2011

2012: Are good times here to stay?

Chrissy & family at Christmas

Despite my fears, I couldn't have wished for a better Christmas with Chrissy. For the first time in years, she sat down calmly to eat Christmas dinner with us and joined in with family celebrations on the 28th. There were 16 of us at one point but Chrissy wasn't fazed by all the noise and chaos. She played sweetly with her seven-year old cousin, who led Chrissy by the hand to search for her Snowman book. She laughed with us and amused us all with her colourful observations. Sometimes Chrissy randomly shouts out what she sees or just gives colours: 'brown clock,' 'grey mirror,' 'red Father Christmas,' 'yellow! green!' She sat quietly smiling to herself as we played an uproarious game of Trival Pursuit; she played peek-a-boo with her cousin through the hatch between our dining room and kitchen. She was interested in and delighted by everything that was going on around her, and had us all at her beck and call!

Unpredictable as ever, Chrissy had one major outburst on Boxing Day - paradoxcically, the only quiet day where she wouldn't be overwhelmed by sensory stimuli. It put paid to my plan to take her for a short stroll. She also had an irritable spell on Christmas Eve, so I slung her weighted blanket over her. She squealed and flapped with delight. It worked a treat! The next night when she showed the same behaviour, I tried the weighted blanket trick again but she screamed: 'Take it away!'

So Chrissy is still very demanding, volatile and unpredictable but the good times are as wonderful as they ever were. I think swapping Topiramate with Pregabalin (or simply withdrawing Topiramate) has resulted in these changes but it's too early to tell for sure.

Ian and I have been blaming the problems of the past three to four years on Chrissy's meds not suiting her. It's been a MASSIVE battle to get healthcare professionals to listen and take action instead of blaming 'unsuitable' environments she's been living in. Now, two years after our legal fight to get Chrissy into an assessment and treatment hospital, we are starting to see light...

My sister, Sarah, summed it up with her message on Facebook: 'It was great to see Chrissy in such good form. I can't remember the last time she was so engaging. It just shows that Chrissy of old is still in there - let's hope she's here to stay.'

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Saturday, 24 December 2011

Festive Challenges and Autism Tips

Chrissy aged 9 with her sister, Alex, years before she was diagnosed with autism

Last Christmas was very difficult for Chrissy. The self-injurious outbursts kicked off on Christmas Eve then reached a peak during Christmas Day. She had 8 major outburts in 24 hours - including a hair-raisingly violent one during our 2-hour drive to her aunt's. (Her sister and I arrived in tears). Chrissy fluctuated between full-on screaming, rolling around on the floor and self-injuring, and being out of it. It was, as you can imagine, very disruptive & distressing for Chrissy herself & the 13 other family members around her. Because she was stripping off, we had to keep her hidden from her younger cousins' view - an almost impossible task.

Previous Christmases have been more Jeckyll & Hyde than last year's - outbursts interspersed with lovely times rather than lethargy. The picture above shows Chrissy enjoying herself but on & off throughout that day she had been clawing at her face & around her eyes. At one point, Ian had taken her outside in the cold & sat quietly with her for a while to calm her down & give everyone respite. Not all Christmases have been so difficult. Chrissy's autism fluctuates unpredictably like her moods, and appears to have got more severe with age.

We're hosting Christmas this year, which will make it easier to minimise triggers & manage outbursts. We'll celebrate Christmas around Chrissy & she can choose which parts to join in with. I won't involve her in the present-opening scrum, nor will I invite her to join us for Christmas dinner. Chrissy time is slower than our time. Once she's figured out that there's a feast at her disposal, she'll wolf down her meal in peace long after we've cleared the table. We'll also try some National Autistic Society tips to support The Diva through her festive challenges. Wish us luck!

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Thursday, 15 December 2011

Letting Go: When Love Isn't Enough

Chrissy aged 14 with a favourite teaching assistant, Geraldine, at St Elizabeth's School

13 years ago I came to a crossroads. I could no longer manage Chrissy at home but how could I bear to part with her?

The first stage of the letting go process – accepting that I couldn’t care for Chrissy unsupported by community-based services – was respite care. She was only 7, and Ian and I decided to go on a family holiday without her. When I told a friend, she was shocked. “Chrissy’s your flesh and blood - how can you leave her behind?” she asked. Ian didn’t mince words in justifying our decision. We desperately needed a break and previous holidays with Chrissy had been disastrous. Holidays and special occasions can be purgatory for children with learning disabilities that struggle with routine changes, and there was no point in putting Chrissy, her two younger siblings or ourselves through what would be another ordeal. She could stay in respite for the week, which she enjoyed. I was discovering that tough compromises had to be made in order for us to function as a family.

When respite services were first offered I was at breaking point emotionally but felt like a bad parent because I couldn’t cope. The needs of my two younger children also had to be taken into account; having a disabled sister had forced them to grow up too quickly. When I’d had them I had no idea that Chrissy’s difficulties were so severe. I thought she’d just be a bit ‘slow’ and grow out of her outbursts like a toddler grows out of the terrible twos. The only person that suffered during the letting go process was me! Chrissy loved the respite centre on her first visit. It was full of friendly, cheerful staff, play equipment and toys. She didn’t want to leave.

Respite care became our lifeline. Mum was the only family member nearby, and she did her best to help, but she had my dad to care for, who had premature Alzheimer’s.

The introduction of behavioural strategies when Chrissy was 10 helped me to feel more in control and manage her better day-to-day but the self-injurious outbursts continued. It was as if she was in torment, in the grip of something she desperately wanted to control but couldn’t. Her doctors prescribed powerful sedatives and all carers, including us, were taught physical restraint. It sounds extreme but it was preferable to leaving her to her own devices. The anti-psychotic medications they prescribed sometimes had paradoxical effects and caused extreme agitation or nasty side-effects. Ironically, the use of chemical coshes was something I’d feared would happen if she went into residential care, yet here we were sanctioning its use at home.

Guilt and anxiety engulfed me – I beat myself up for everything I couldn’t do to help Chrissy and lost confidence in my parenting abilities. I persisted in trying to make her life as ‘normal’ as possible by including her in family activities and outings. We had some lovely times but, more often than not, outings ended in mayhem. Chrissy's SLD school was struggling to manage her outbursts too and an agency providing home carers during school holidays was concerned about them getting hurt. Something had to give.

The obvious solution was residential school but I felt torn. Chrissy was still like a toddler, and very dependent on me. I feared she’d be neglected or miss us terribly, but for her to suffer abuse like the disabled adults in BBC’s Panorama programme, ‘Undercover Care,’ was beyond my worst nightmare. Then I wondered: "Am I denying her a better life? Maybe she'll thrive in a more structured environment. Surely it’s better that she gradually gets used to residential care now rather than when we die or are too old, or ill, to cope?"

When Chrissy was 14 her life changed for the better. A new drug regime transformed her behaviour and we found a very special termly boarding school, a tranquil gem tucked away in the Hertfordshire countryside, I only wished we'd discovered it earlier. I was excited about what they could offer Chrissy. The pupils looked happy and cared for, and many had complex needs like Chrissy. Their on-site healthcare team could monitor her epilepsy closely and she would return home for weekends and school holidays.

Despite my optimism, I felt bereft when Chrissy first left, and wept at the sight of her empty bedroom – but my fears were unfounded; she never forgot who we were and always quivered with joy each time she saw us again. She was happy to return to St Elizabeth’s after visits home, and having time apart made me enjoy the good times we had with her more.

When Chrissy left school at 18 I accepted that adult residential care was the best option for her. We found a lovely care home 30 minutes’ drive away, and Chrissy was their first resident. Her carers spent time with us at home getting to know Chrissy’s needs and supported her to go out and about in the community.

Unfortunately, four years later Chrissy’s medication was changed due to a life-threatening adverse reaction. Her self-injurious outbursts intensified and couldn’t be stabilised with medications that her psychiatrists prescribed. Two residential placements broke down when they could no longer cope with her challenging behaviour.

Since January 2010 Chrissy has been in a privately-run therapeutic unit to stabilise her behaviour with medication and psychological approaches. She will remain there until she is stable enough to move into a bespoke service, which is still in its planning stages. Living in a hospital ward, no matter how homely they try to make it, is far from ideal. Many residential services claim to specialise in autism but struggle to offer sufficient staff training, structured routine, continuity of care and a person-centred environment.

As Chrissy’s mum, I feel no one can look after my fragile daughter like I can. She’s a hefty 12 ½ stone due to her medications but, in my recurring dreams about keeping her safe, she’s tiny, like the child she’ll always be in my eyes.

Other parents may manage to care full-time for their disabled children at home but some are harder to care for than others. I need all my strength to fight battles on Chrissy’s behalf, which is what I’ve had to do all her life. I do all her washing, still have her home every weekend, and move mountains to enable her to attend family events and celebrations. I leave no stone unturned in ensuring Chrissy gets the best possible care and, when things go wrong, righting them becomes a full-time job. I still fantasise about having her home full-time. Then I’m brought back to earth with a bump after a particularly challenging home visit.

Over the years, each time I’ve let Chrissy go a little – the first night in respite care, the first MENCAP holiday, then on to boarding school and full-time residential care, it’s been gut-wrenching but when I look back, I recognise that I’ve made the right decisions for Chrissy and my family. Her outbursts are so violent and unpredictable, and her needs so complex that it would be impossible to care for her at home.

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Friday, 9 December 2011

Invisible in the Community

Chrissy (in purple, 2nd from right, at a MENCAP party aged 7)
It hit me when I was searching our family albums for another photo.

So many pictures of Chrissy engaging with people, fully involved in the hurly burly of life. Dressing up for Halloween and making 'witchy' faces with her sister; sitting at a table, eating birthday cake, surrounded by people and chaos; dancing around and introducing me to her peers at her 18th birthday party; giggling with her brother on a fairground ride.

What happened? How did we get to where we are today - in a locked ward on an assessment & treatment unit?

Despite the government's efforts to end social exclusion, people with learning disabilities are still amongst the most marginalised groups in society - but it isn't bullying or prejudice that makes Chrissy invisible in the community. She simply isn't able to function outside her comfort zone. The severity of her autism, stripping & self-injurious behaviours have effectively isolated her from the world.

Chrissy's involvement in family events has dwindled. She came to our wedding in 2003, albeit with two helpers, and a family christening a couple of years later. She managed (again with two helpers) for an hour or two at my 50th birthday party last September, which made my night. Now we can't even take her up the road to the village shop or, God forbid, to a restaurant.

It means that Chrissy's outings are restricted to our garden or the assessment & treatment unit's grounds. Even on good days, we can't risk taking her anywhere other than straight to the car when we take her back to the unit. She's too unpredictable.

Looking back, Chrissy had become increasingly difficult to manage as she'd grown bigger. Holidays together as a family and trips to the supermarket were the first to go. Then we had a few years' reprieve in her teens with the transforming medication regime before the most severe challenging behaviours kicked in again during her twenties. Her autism crept up on us - hand-flapping, turning switches on & off, getting stuck - unable to transition to the next activity, repetitive questions, turning items in her bedroom back-to-front - but, because she was still sociable and affectionate, it went undiagnosed until she was 22.

Have the effects of her chromosome disorder become more marked & pervasive as she's grown? Has her epilepsy, poorly controlled when she was little, caused brain damage? Should she have had the triple vaccines as an infant? Did behaviour management interventions come too late? Is some of her medication making her condition worse? There are no answers and it's a case of trial & error. For now, we make the most of the good days and continue to work on the rest.

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Friday, 2 December 2011

Small Steps - A #Special Saturday Post

Over the past few weeks Chrissy's affairs have taken precedence over everything else - but it's been worthwhile.

I had a positive meeting with her new psychiatrist & was very impressed that he'd taken the time to read this blog! He referred to incidents I'd written about & it was clear he'd researched her chromosome disorder. He was open-minded and interested in exploring causes of the more intense clusters of self-injurious behaviours for which no environmental trigger has been identified. As Chrissy had settled down after a difficult month, he decided to withdraw the last 15mg of her Topiramate while introducing Pregabalin. I don't know if that's why we had such a challenging time with her. Her last spell of horrendous behaviour coincided with Topiramate withdrawal & it was similarly intense here yesterday. Her diva-ish behaviour has been off the scale - she's been moaning, obsessive, demanding & irritable. We did have a lovely cuddle with her on the settee while we watched Come Dine With Me but had to hold both her hands the whole time, effectively handcuffing us to her. A great way of getting our individed attention! She then kicked off again later & wouldn't go to bed until after midnight.

I'm worried about how Chrissy will cope at Xmas, particularly as last year was so awful. She will obviously be here with us on Xmas Day, as she's always been, but when more of the family visit on the 28th it could be apocalyptic. Her stripping is particularly difficult to manage when there are young men & children around, as you can imagine!

Anyway, on a different note, another positive outcome came from the 1st stage of our appeal process re the long-standing funding dispute between the local authority & NHS trust. The dispute has caused a number of problems that I can't elaborate on publicly at the moment but our biggest recent concern was that no one was taking care management responsibility. We need to plan for Chrissy's discharge from hospital & the type of 'bespoke service' she needs may, according to estimates from the Challenging Behaviour Foundation, take about 12-18 months to organise. So, although she needs to stay in hospital until meds changes are completed, we need to start planning now.

At our appeal meeting the NHS trust admitted to 'horrendous' errors in the healthcare assessment process, & offered to start from scratch with a retrospective assessment. This means combing through Chrissy's records from the past three years. I was advised that to see those records, I'd have to apply to the Court of Protection for Deputyship, which puts my responsibilities for Chrissy on a more legal footing. I filled in all the forms, so I could make decisions re property as well as health & welfare, as she may end up with a home of her own. The forms are tedious & repetitive, & took me nearly a day to complete but they're done now. I'm sure it will be worth it in the long run!

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