Saturday, 29 September 2012

The Holiday where I Took a Stand: Valuing Lives of Adults with Learning Disabilities

Chemically coshed?

We set off for Center Parcs, Longleat, with trepidation and a back-up plan. Our last holiday with Chrissy had taken place over four years ago, and it hadn't gone well. At least Longleat is only an hour or so from our home and the ATU. If it all went belly-up we had the option of taking Chrissy back....

On the first day Chrissy’s behaviour can only be described as ‘monstrous!’ She roared and barked endless demands that we could never satisfy. Her appetite was insatiable too. We ate at CafĂ© Rouge as soon as we arrived but the minute Chrissy had cleared her plate, she began obsessing about food again. These behaviours continued at the villa and escalated to outbursts with the usual thrashing around on the floor. Thankfully, the episodes were short-lived and in our own space we could let her get on with it.

‘I’ll never do this again,’ Ian muttered darkly. Eventually, Chrissy sat down with us, but we were still jumpy and tense with her and each other, wondering if we'd made a big mistake to bring her there. Then I heard a soft giggle beside me. When I turned round, Chrissy was smiling and pointing at the objects of her amusement – my feet on the coffee table wiggling in time to music on TV. My heart melted. People with autism rarely gesture or point at objects to communicate. Chrissy has started doing this very occasionally, and they are special moments.

The next morning she played up while taking her meds and I had to try again later with her antipsychotic, Quetiapine, and her fish oil supplement. Within around half an hour she looked so drowsy I thought she was going to have a seizure. Here, with more time on my hands, I was able to observe Chrissy more closely & objectively than I do at home. In previous posts I've described my concerns about the clinical need for her to be on Quetiapine or indeed any antipsychotic. I bring it up at every care planning meeting but it never seems to be the right time to trial Chrissy off it - her doctors want to stabilise her epilepsy first (yet antipsychotics lower seizure threshold!) or they want to wait for a more settled period or wait for the next specialist appointment etc. The ATU halved her dose in error several months ago and noted improvements in her behaviour - so why is she still on it nearly three years after I first expressed concerns?

Once we got to Longleat Chrissy kept whingeing, nagging about food, and sitting down and refusing to move on. Just after we entered the African Village, she body-swerved back to a sweet shop we’d passed & surfed the displays for Maltesers.

They’d run out.

Cue Chrissy to throw herself on the floor, where she stayed for around 15 minutes. She lay there quietly, only shrieking when we tried to talk to her or get her back up on her feet. We stood there like lemons until, finally, she got up and selected a pack of fun-sized Kit-Kats that shared the closest resemblance to Maltesers. With the sweets secured in her coat pocket, we were able to continue on our way.

We got stuck again by the meerkats – the first animals we came to. Unlike most people, Chrissy wasn’t impressed by their antics even when six of the endearing creatures stood upright in unison. We accepted that we would be operating on ‘Chrissy-time’ that day. Next, she made a bee-line for Postman Pat Village then plonked herself down on the ground again and threw my sunglasses, which she’d been wearing, to the ground. As so often happens, just as you want to wring her neck Chrissy's mood about-turns. She agreed to a photo opportunity with Postman Pat and was charmed by the inanimate model. It engaged her attention more than any of the animals we’d seen.

On the way to the game park, we stopped at the toilets. Chrissy started shrieking and shouting on the loo and sent the sanitary disposal unit crashing to the floor. We emerged to curious stares then she flung herself to the ground again as a group of school kids filed by, eyeing her warily. Chrissy didn’t react to their presence. As usual, she got up when she was ready and we set off on the drive-through safari. Clutching her empty paper Coca-Cola cup and bag of Kit-Kats like talismans she seemed content enough but showed no interest in the animals.

Wednesday was a better day - we got Chrissy into the pool & spent an hour or so there - but the biggest blip of the holiday occurred that evening at the Pancake House. They had a children’s entertainer on and refused entry to anyone that hadn’t pre-booked. I tried my best to persuade them, but to no avail. Needless to say Chrissy kicked off right outside in full view of the diners. The manager rushed out with a complimentary all-singing-all-dancing pancake, the sight of which sent Chrissy into orbit. She threw herself on the ground screaming, thrashing around and banging her head. To further fan the flames, a man who’d been sitting outside drinking tried to step into her world. He lay down on the ground beside Chrissy and started talking to her. ‘I work with kids like this,’ he slurred to us. ‘They're so lovely.....’

Chrissy smacked him in the face!

I explained that we have to pretend Chrissy is invisible when she goes into these states as any eye contact or attempts to communicate makes things worse. She has to be left to come out of it on her own. The man’s daughter came outside with his grandchild. Gradually, Chrissy became aware that there was a baby nearby and sat up. It was a rapid mood switch even for Chrissy. ‘Is it a baby?’ she twinkled. ‘Can I stroke her?’ We watched nervously as Chrissy softly caressed the baby’s back and chatted away, asking questions like: ‘What’s your name baby?’ It was a stark contrast to the violence of her outburst, and I was pleased for Chrissy that this family had seen her at her best. It was interesting that Chrissy asked the baby: 'Have you stopped crying now? Were you cross?' (signing the word for cross) Ian and I both think that Chrissy was talking about herself in a third-person kind of way.

Chrissy then plonked herself down between us and tucked into her pancake, chatting and giggling with the man, who was definitely the worse for wear but harmless. He kept Chrissy entertained, pretending to nick her food and joking about taking her on a date. After we left Chrissy couldn't stop talking about her new 'friend.' The experience had been quite surreal - but what a happy ending!

Thursday was better still. We managed to get Chrissy on a trike. She let us push her around but didn’t pedal or steer it herself. She used to race around on her own trike but her mobility has decreased with age – she struggles to climb on and off things, and has lost agility, skills and confidence. This deterioration also coincides with her weight increase since the introduction of antipsychotic drugs.....I hasten to add here that the sweets she gets are carefully rationed & the cokes are diet &, where possible, caffeine free, diluted with water. It's about what the packaging represents. Although Chrissy loves to eat she can happily hold on to her favourite branded food items for days.

Later on we transferred our holiday photos to Chrissy’s laptop. She sat entranced flicking through them. Her mood got better and better. We went for an early evening stroll – she walked a total of around two miles that day. Later, she watched the Bear and Father Christmas instead of sticking rigidly to her Snowman DVD. As she watched Father Christmas, she smiled over at us while excitedly tapping his picture on her DVD cover to show they matched. It was a lovely last evening.

The next day Chrissy woke up to an empty villa – everything had been packed away. It struck me that it was like the end of the Snowman DVD where all that remained of the night's magic was his hat & scarf. Chrissy reacted well considering - no nagging for food, and quite compliant given that we had to rush her out of the villa by 10am - but we could tell she was bewildered and disorientated. I felt a huge sense of desolation for her that grew as we drove back to the ATU. The villa had become home. She'd had her favourite things around her, & now they were all gone until her next visit home.

At the ATU she asked for her laptop again. Unfortunately we’ve never been able to get them to agree to keep it there – nowhere safe to store it we’re told. It seems harsh to deny her one of the few things she loves to play with but she has a toy laptop there that’s become another favourite activity. Hoping to distract her, I asked a nurse where it was. She looked at me blankly. I kept on until someone went to search for it and eventually brought it out to us without batteries. How long had it been stored away out of Chrissy's sight because it couldn't be used? Why hadn’t anyone thought to tell us or use her pocket money to buy more batteries? She gets attached to treasured objects like this & has so few of them there. I find this sort of thing beyond upsetting. It symbolises something that I can't bear to think about, let alone put into words for a blog.

While we were unpacking later at home, I couldn't stem a sudden flood of tears. It felt like grief....

Our holiday had highlighted how life is passing Chrissy by while we wait interminably for actions to be taken that will move things forward. A care planning meeting that I'd hoped would lead to progress with some of these actions was postponed by SEVEN weeks because key professionals were on holiday, only worked on certain days or were attending training days. The upshot of it all is that I decided to take the lead on something that has been dragging on for far too long. It could get me into hot water but it's worth it if the end justifies the means....

I am a SWAN UK (Syndromes without a Name) blogger

Monday, 3 September 2012

Battle Weary but Making Progress

Chrissy age 9. The start of more turbulent times. Note self-inflicted scratches on face & around eyes

As we continue to marvel over Chrissy's emergence from medication-induced cognitive impairment and behavioural changes, we are looking at her future care options. Although we haven't got a discharge date yet, we're nearing the end of Chrissy's treatment but can't make firm plans until the funding dispute is resolved. A personal support package needs to be in place before Chrissy can take up any housing options that may be offered but despite the efforts of a solicitor, an ombudsman and ourselves, progress is still painfully slow.

A mum that faces similar challenges to ours said she has always tried to take a reasonable approach but feels her constant efforts to improve her disabled child’s life are an uphill battle without any action. Another parent said she was in despair as she doesn’t see any significant changes coming to ensure good, long-term care for her child. ‘I’m sick and tired of all the stress and worry, and the coping,' she says. 'I want to be heard. I’ve had enough.’

Battles can start early on when you have a child with a learning disability, particularly if the cause is unknown or the child has complex needs. My book ‘Bringing Up a Challenging Child at Home’ describes my attempts to get someone to take my concerns seriously. No one ever sat me down, and took time to listen and explain anything. I was always asking ‘what’s wrong with my child?’ I felt like I was being fobbed off and became increasingly frustrated.

Eventually, it became chillingly obvious that something was wrong. Chrissy was diagnosed with epilepsy when she was 10 months old and, later, with developmental delay. She received physiotherapy, occupational therapy and speech therapy but these services were snatched away when we moved to a different area. It was our first experience of the postcode lottery but not our last - a decade later Chrissy's respite care allocation was halved when we moved to another county. I didn't know how to go about challenging these decisions but I've since learned that it's only those who shout loudest that get the help their child needs.

During Chrissy’s early school years things went relatively smoothly. She had sufficient support in lessons to help her to achieve her potential and was under the care of Great Ormond Street Hospital, who took quite an interest in her. It was only as she grew bigger and more difficult to manage that the battles began in earnest. Health professionals and Social Services seemed to write Chrissy off & wouldn't offer sufficient support. I guess no one really knew what to do and they feared that they would carry the can if something went wrong.

When Chrissy was nine doctors began prescribing anti-psychotics and sedatives to try to subdue a particularly intense outburst cycle but the episodes escalated and became more violent and prolonged than ever. Over the next four years there was one crisis after another as her SLD school struggled to cope and so did we. We were using behavioural intervention strategies but they only helped with day-to-day challenging behaviours, not with these more severe episodes.

Finally when Chrissy was 14 Ian and I snapped after she'd had several days of frenzied self-injurious outbursts while on the anti-psychotic, Haloperidol. Somehow we got her down to our local children’s ward. 'This is our daughter, Chrissy,' we told an appalled nurse,'and we're not taking her home until someone helps her.’ We had a heated discussion with hospital staff when they realised we were sticking to our guns but once they got a handle on the situation they agreed to help. I’ve described Chrissy’s transformation in just 14 days after those meds changes in previous posts. For the next few years things ran relatively smoothly again - but when her meds were withdrawn after the platelet drop, I was propelled back into the fray.

The dreaded anti-psychotics were re-introduced, and Chrissy's behaviour & quality of life deteriorated again. Her doctors wouldn't accept anti-psychotics were making things worse AGAIN, and argued instead that it was all down to her being in the 'wrong' environment for someone with autism. There were endless disputes over the right course of action to take and Chrissy was stuck in the middle. In 2008 after another awful cycle of extreme outbursts, she was given 28 days' notice of eviction from her residential care home. I fought a legal battle to give us extra time for a transition to another care home, then when that placement broke down amidst the all-too familiar backdrop of medical professionals doing nothing and citing the 'not-fit-for-autism' environment, I had to take legal action again on two separate occasions to get Chrissy into hospital for assessment and treatment.

While parents of neurotypical children face occasional set-tos our battles are never-ending and instead of stopping when they become adults, they get worse. There's always another 'concern' to address along with major ongoing issues rumbling in the background, and we go through periods of reeling from one crisis to another.

In my previous post Groundhog Day I describe how I feel like I'm continually revisiting the same issues. For example, last year's admissions and apologies from the NHS trust about making a ‘dog’s dinner’ of Chrissy’s assessments for healthcare funding, and their promises to rectify the situation with properly conducted assessments and thorough investigations have come to nothing. I"ve lost count of how many times my hopes have been raised like this. Another parent described it as like kicking a football around a triangle. You are in the centre of the triangle created by professional services and your issue just gets kicked around from corner to corner as the professionals that you go to for support pass the buck and blame each other. After going down all these frustrating routes of trying to get someone to take responsibility and action you are left back where you started to kick the football from.

Meanwhile, Chrissy's epilepsy remains unstable, and other health worries keep cropping up that leave me feeling acutely aware of the fragile balance between symptom control and quality of life. We intend to make the most of the good times while they last. That's why we're taking Chrissy on holiday to Center Parcs at the end of the month. Wish us luck!

I am a SWAN UK (Syndromes without a Name) blogger