Defining Normal

Chrissy tickling her feet at the top of the garden

Normal for us is leaving Chrissy on a locked ward & trusting paid strangers to be kind to her. It's letting go & accepting that a professional team does a better job than we can at home. It's acknowledging that once a week our lives will be both enriched & turned upside down by her visits. It's avoiding her self-inflicted wounds when I towel her dry after a bath. It's shaving her legs & wiping her bottom without a 2nd thought. It's reaping her gentle smiles, basking in her sunshine times & marveling over her different way of viewing the world.

Although Chrissy isn't at home full-time with us anymore, she is still a huge part of our lives. Most days it's normal for me to be writing to or speaking to one of Chrissy's doctors or other professional involved with her care. On my desk now is a letter about our Disability Living Allowance appeal. Behind me, ready for filing are documents relating to my application for Deputyship so I can legally act on Chrissy's behalf, ie sign a tenancy agreement if she moves to a rented supported living home. On the floor is a musical book for toddlers, entitled 'Bedtime Songs.' I guess an outsider looking in would be surprised to learn that it's a gift, waiting to be wrapped in pink Sleeping Beauty paper, for someone's 28th birthday.

All this has been our normal for so long, I've found #definenormal a huge challenge!


I have written this post as part of the #definenormal blogging challenge at http://www.justbringthechocolate.com/define-normal/


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Good Care Planning & Changing Needs

'Hooray!!!'

We managed a walk to the village shop yesterday:-) There were a few hairy moments when we got there as Chrissy was like the proverbial kid in a sweet shop & got paralysed with indecision, then wanted everything in sight. Giving her a basket to put her goodies in reduced her anxiety (once she'd made it 'symmetrical' by re-arranging the handles). As we got near home I praised her for being a 'good lady' &, as you can see from the photo, she cheered!

I'd been inspired to take Chrissy out again after being told at her CPA (Care Planning Approach) meeting yesterday morning that her carers had taken her to M&S & a couple of other places without any major dramas.

Chrissy has two CPAs a year where the professionals and I sit around a table to discuss and plan her future care needs. Anyone with a range of complex needs like Chrissy's is entitled to have a care plan that's regularly assessed and reviewed. At the meeting everyone agreed that since recent drug changes Chrissy remains much more alert and interested in engaging with activities. The downside of this 'awakening' is that her outbursts are more violent, and she has hit staff and pushed tables over. We haven't seen this degree of aggression at home but she's more diva-ish than ever with a steely determination to get her own way. Last night she refused to go to bed until the early hours. There's no point in trying to force the issue so we turned all the downstairs lights off & left her to it. She soon came up and said 'you put me to bed,' but when we tried, she got caught up in her rituals, moving things around in her room so surfaces were clear and certain items, like her cover, were symmetrical. She kicked off several times but we got there in the end. We had the same rituals this morning at breakfast time. It tried my patience so much that I wanted to throttle her but Ian was amazing with her, & managed to de-escalate several potentially explosive situations by keeping calm and, somehow, just knowing exactly what to say & do at the right moment.

We still have some way to go before Chrissy is stable enough to leave the assessment and treatment unit and I still feel no clearer about what sort of home setup will suit her best. Now she is more alert her needs are changing and we need to look at a range of options. Cluster homes were suggested, which means that Chrissy would have her own space but be able to socialise when she chose. The commissioners can invite tenders from service providers, and we can be part of the interview and selection process. Right now, this seems to be the best way forward but we will have to see what can be provided locally.

I had been feeling very frustrated over how slowly things seemed to be moving, & the feeling that I'd had to drive every step forward, as described in previous blogs - but there's nothing like getting round a table to thrash things out with someone taking a strong lead - in this case Chrissy's impressive new psychiatrist.


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#Special Saturday - Christmas Gifts

Now Chrissy is engaging more with activities I am choosing Xmas gifts with particular care. She can be destructive so needs close supervision with anything breakable, like her laptop & portable DVD player. I have bought her the Snowman DVD again, which she loves. I buy at least one a year because it wears out or gets broken. Chrissy plays it over & over, & never tires of it. This year I'm trying out DVDs that have similar animations - Father Xmas & The Bear. Chrissy loves anything Xmas-themed & DVDs with lots of singing, dancing & colour.

Greatest hits include:
Makaton Nursery Rhymes hosted by Dave Benson Phillips; portable keyboard; a colourful 'speaking' parrot & Teddy Ruxpin - another speaking toy; a personalised video that features your child as the star in a cartoon; a small Xmas tree that dances to music; pop-up books with sounds; Vtech toy laptop; Leapfrog reading system; portable DVD player; CDroms like Reader Rabbit; bubbles; a brand new Argos catalogue!

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A #Specialsaturday Post - Uncertain Times & Embarrassing Moments

The meeting we had yesterday to plan Chrissy’s future care was chaotic & disheartening. There was a roll call of apologies for absence – people worked on different days, a ward ‘crisis,’ someone away on a training etc. One of Chrissy’s care managers was present but he has no influence as his authority are not paying for her care. No one from the commissioning authority (funding ‘without prejudice’) attended. The psychiatrist has been unable to get hold of anyone there, which means we can’t plan Chrissy’s future.

I’ve already blogged about the funding dispute that’s leaving Chrissy in limbo. It will take a long time to plan her next placement as we need to get it right this time. A robust healthcare support infrastructure needs to be in place for starters. Another placement breakdown would be disastrous for Chrissy. The appalling state she was in through the latter part of 2009 still haunts me.

The hospital admission in January 2010 has improved Chrissy’s life. She is far more stable than she was 18 months ago but these changes have plateaued over recent months and we fear there will be little or no further improvement because the institutionalised environment isn’t geared up for her autism. There aren’t enough stimulating accessible activities offered. For months we were promised sensory integration therapy (‘The missing piece of the jigsaw,’ Chrissy’s speech therapist had said in March). Yesterday we learned that there had been a U-turn – they can’t supply it as part of the package; extra funding will have to come from the commissioners - the ones they can’t get hold of!

The meds changes took months to start due to all sorts of reasons (including the funding dispute) but we can’t thank Chrissy’s neurologist & psychiatrist enough for flagging up their concerns about one of her anti-epileptic drugs, Topiramate. We marvel over how much she’s ‘woken up’ since it was reduced from 50mg a day to 15mg. She is far more aware of her surroundings, and full of quirky observations & funny comments again. Last night, I was having eyelash extensions done for a special occasion. Chrissy was in the same room, playing quietly on the computer under Ian's watchful eye. Suddenly, she sat bolt upright, & announced: 'I poo myself in the kitchen.' The lady doing the eyelash extensions froze then we both collapsed into giggles as I explained that Chrissy probably felt the urge to go but had her tenses mixed up. There have been many potentially embarrassing moments like this but we just find them endearing, entertaining & funny. It's a good sign as it shows her irrepressible personality is no longer being clouded by too much - or the wrong - medication.

Embarrassing moments are part of what makes Chrissy who she is. We welcome them back!

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A #Special Saturday Post - How Having a Special Needs Child has Changed My Life

I've already written extensively on here, & in my book & parent's perspective chapter about the bigger picture of how having a special needs child has changed my life. Here I'll just give you a snapshot....

As soon as she walked through the door yesterday afternoon Chrissy demanded 'mummy's computer.' She then took over my office & nicked my reading glasses. In the photo she's watching Andy Pandy, which she loves. 'Bye mummy!' she called, no doubt hoping I'd go away so she could hack into my laptop. Left to her own devices, she manages to delete programmes and generally cause cyber mayhem.

Cranky spells peppered Chrissy's stay but, just as I thought she was going to kick off, the mood passed & she became jolly & talkative. Yesterday evening, she sat on the settee, sandwiched between Ian & I, with her catalogues & cookery books spread out around her. She nagged us to 'find the girls' in her catalogues. We found pages of them. 'No GIRLS,' Chrissy pressed on querulously, bending her fingers back & twisting her hands together - a bad sign & an ideal time to try out her new big fat weighted blanket.

It did the trick (but we still don't know what sort of 'girls' she wanted).

'Tuck it my knees,' demanded The Diva (our new nickname for Chrissy). 'Make it square.' Then, when she was swaddled in it up to her chest she ordered us: 'Hold my hands.' Remembering how she likes pressure on the outside of her hands, I gripped one of them tightly.

Peace reigned at last. We even caught the last 10 minutes of Outnumbered, which kept Chrissy amused. She smiles with benign indulgence when we laugh & sometimes joins in - but I suspect she finds the sight of us funnier than the object of our mirth. She's very inquisitive & sometimes appears to be as intrigued by our behaviour as we are by hers.

Today, Chrissy kicked off because I wouldn't let her back on my laptop. She had switched it off & done something to our anti-virus software, which Ian had to reload. I videoed her screaming on the floor with one leg up in the air then replayed it to her after she'd calmed down. She watched, transfixed, but without expression. 'What's Chrissy doing?' I asked her. 'Crying,' she said matter-of-factly. So what did I learn from this exercise? Bugger all but it was worth a try. It might have made her realise how silly it was for a grown woman to have a toddler-like paddy....