Person Centred Planning

December 2011: Note rolled up sleeves - one of Chrissy's rituals

Person centred planning (PCP) is a way to support people with learning disabilities to plan how they would like to live their life as fully & independently as possible. Anyone with a learning disability can have a PCP, even if their communication is limited, as PCP is done in consultation with people who love them and know them well.

Chrissy has been in a therapeutic unit for two years and, although she's not yet ready to move on, we need to start planning her future now. The Challenging Behaviour Foundation advised that this can take 12-18 months for someone with such complex needs.

A PCP professional visited me on Wednesday and showed me an example PCP. It included gems such as 'When I sing Bohemian Rapsody watch out. I'm not singing happily - it's a sign that I'm about to lose control and I may throw something at you!'

With Chrissy, I follow my instincts, and take so many of her quirks & rituals for granted that it's difficult to convey her support needs to someone else. However, seeing the colourful detail in the example opened the flood gates. I found myself able to take the PCP professional step-by-step through Chrissy's daily routines. I explained that when Chrissy comes downstairs for breakfast she must have the larder and kitchen doors shut, lights switched on, the area around her chair cleared of any objects that she deems shouldn't be there, her two favourite drinks with two straws, a carrier bag with handles tied in a bow containing her chocolate mousse and a banana......

After all that and more, she will only eat her egg on toast, cut up, with two splodges of tomato sauce, when she's good and ready, usually when it's stone cold!

Explaining the detail of Chrissy's daily routines also helped me to gain more insights into her support needs, which I can pass on to professional carers. For example, I instinctively know when to make myself 'invisible' for Chrissy to adjust to transitions and self-calm. It may mean removing myself from view and watching silently from a safe distance, or simply avoiding eye contact and using minimal communication. When Chrissy arrives for her weekly visits home, I try to get her coat off and settle her into my routine, but the penny's dropped that she needs initial time to herself to wander freely from room to room to adjust to her new territory. She will eventually approach me and say something like: 'Mummy, I want to go on my computer.'

PCP reminded me how important carefully managed approaches are to support Chrissy effectively. The daily management aspects of her needs should be sufficiently met in a single service unit close to her family with a team of carers that know her well - but there are other considerations. Key is the proximity, skill and responsiveness of a multi-disciplinary clinical team. Failings in this area contributed to the breakdown of two residential placements, which caused her untold trauma. When it comes to 'what next?' for Chrissy, we must get it right this time.




Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/

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!

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....

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?

Sleeping with flowery curtains & the awesome power of autism

Lively banter between Chrissy & step-dad, Ian, last night. A lion in her DVD cartoon roared, making Chrissy laugh. Ian asked what the sound was. 'Evil' Chrissy said. Breadth of vocabulary astonishes us at times. How did she know that word & relate it to roaring? She will stop in her tracks to point out tiny details in a room that we'd never notice, such as the 'Home' written on my Homepride biscuit tin, or a miniscule spider hanging from a big window, & put the correct name to them.

When we put Chrissy to bed, she said she wanted to change her 'cushion' (pillow). I turned it over a couple of times, which usually does the job, but she wasn't having it. Her eyes darted around her bedroom, and alighted on a pair of her old flowery curtains in a pile in the corner. "Want flower cushion," she said. Ian showed her that they were in fact curtains but Chrissy insisted on having placed around her pillow before she would settle.

This morning it was 'I want two' of everything from tissue to toast. We tear tissue in half & cut toast up, & she's satisfied with that. Light switches went on & off, every door around her was shut until she felt calm enough to take her tablets and eat her breakfast.

During all Chrissy's waking hours her life & the lives of those around her are governed by the powerful force of her autism.