Friday, 28 October 2011

#Special Saturday - How does having a child with additional needs affect your family?

It all started so well...

I asked my youngest daughter, Alex, how she felt her life had been affected by having Chrissy as a sibling. She shrugged & said: 'I've never known any different.' She agreed that it had forced her and her brother to grow up too quickly and take on responsibilities beyond their years. Many instances that illustrate this are in my book 'Bringing Up a Challenging Child at Home.'

I felt guilty about having two more children when Chrissy was so demanding but I had no idea how severe her needs would be - caring for her got more challenging as she grew older & bigger. You expect toddlers to be a handful but Chrissy never grew out of that stage. Living with her extreme, unpredictable, violent mood swings day after day took its toll on everyone. Her siblings had to take second & third place & no child should have to do that. I've had to dig very deep in order to cope, & I've no doubt her siblings & my husband have too.

We’ve always tried to involve her in family activities and do things that typical families do but it's a gamble. You can't predict how she'll react. Many family outings have been cut short due to Chrissy's unpredictable outbursts but we have had some resounding successes, although admittedly not recently.

What happened at the weekend gives a snapshot of how Chrissy’s needs affect family life. She was in a jolly mood & we’d seen none of the major SIB of the past few weeks. She was engaging with activities we did with her, & was very inquisitive and chatty, delighted to have Alex around, who was home from university. On Friday evening, as I sat holding Chrissy's hand, I felt a gentle caress on my thumb. I looked at her in amazement and she was smiling benevolently at me! Chrissy hugs me but she's never caressed me before. On Saturday morning someone called round selling poppies for Remembrance Day. 'Which one would you like?' the seller asked. ‘A chocolate one,' said Chrissy, making us roar with laughter.

The signs were good and it was such a beautiful autumn morning, I decided to take Chrissy to the village shop, about 1/4 mile away. The photo shows Chrissy just after we'd set off. She seemed happy enough walking alongside me but kept asking 'are we having sandwiches for lunch' & swapping which of my hands she held. Halfway there, she got so obsessed by swapping hands, we got stuck. I tried to turn back but it was already too late - she threw herself on the pavement screaming & rubbing her nose until it bled. My stomach was in knots as I feared she'd strip off. I called Ian & he brought the car round to rescue us.

I shouldn't have risked it really but I still get fooled when Chrissy is calm. If I stopped trying to take her out I’d be giving up on her. Episodes like this remind me of the difficulties of balancing family life with Chrissy’s needs when she lived with us - but, as Alex says, we never knew any different.

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Friday, 21 October 2011

#Special Saturday Post: What My Daughter's Special Needs Are

Chrissy's magic hands

Chrissy's special needs are complex with moderate to severe learning disabilities, epilepsy, a rare chromsome disorder and challenging behaviour.

These labels gradually crept up on us. There was no defining moment when a doctor sat me down and told me that there was something wrong with my child, let alone what was wrong.

When Chrissy was born weighing 7 lb 6 oz after a straightforward first pregnancy and a long induced labour, I was bursting with pride - awed at the part I'd played in creating something so perfect. Friends and family agreed that she was one of the most flawless and alert-looking newborns they had ever seen. I called her my 'air traffic controller' because her hands waved around energetically whenever she was awake. Her brown eyes were bright and wide open as they gazed into mine.

We spent six days in hospital - standard for first babies then. Chrissy's suck was weak and she didn't feed well. Her weight dropped to under 6 lbs. Medical staff kept an eye on her but they weren't unduly concerned. Once home, Chrissy was a placid, sleepy baby. She failed to thrive and vomited up most of her feeds. She was noticeably floppy compared to other babies of a similar age. Concerned about her poor head control, her health visitor referred her to a paediatrician. I had no idea how significant these early signs were - just a slow, chilling realisation that this wasn't how things should be. I was 23 then and didn't know what had hit me.

Chrissy was late with all her developmental milestones and didn't walk until she was 22 months. Speech came slowly too but we put it down to glue ear - she had recurrent ear infections. I was told that Chrissy had 'developmental delay' but I assumed she'd catch up. She had her first seizure at 10 months, diagnosed as a febrile convulsion, then started having seizures without a temperature. Epilepsy was diagnosed when she was a year old.

Chrissy's behaviour was a big concern from infancy. She was an absolutely delightful, sunny-natured baby, but even then, she had intermittent prolonged screaming outbursts. Our GP put it down to colic, although Chrissy stiffened and arched backwards rather than drawing her knees up to her stomach. These screaming bouts have continued ever since, varying in intensity and nature. As soon as she was mobile, the screaming was accompanied by head-banging, then other types of self-injury as she grew older. She only ate a limited range of foods, and they had to be smooth as she had problems with chewing.

I was desperate for answers and wondered if something had happened during birth - my induced labour was long and difficult but there were no obvious complications. Her doctors weren't able to give me any answers. As of course there was no internet then, I scoured the local library for information, but I drew blanks. Brain scans and, later on, genetic tests, were all clear. Chrissy didn't look as if anything was wrong until she was about six although she was tiny and looked younger than her chronological age. Autism was ruled out. 'Autistic people don't speak,' her doctor said. A speech therapist described her speech as 'parrot-fashion' but said Chrissy was 'unautistic.'

When Chrissy was 15, I started writing my book 'Bringing Up a Challenging Child at Home: When Love Isn't Enough.'

It helped me to celebrate Chrissy's uniqueness. I gave up my search for answers.

Then, seven years later came a breakthrough. A research project we'd taken part in revealed that Chrissy had a rare chromosome disorder, called 1q21.1 microdeletion. Not much was known about this newly discovered genetic condition but autism, learning disabilities and neuro-developmental disorders are associated with it. Chrissy's microdeletion is de novo, which means it occurred spontaneously. During the same year, purely by coincidence, Chrissy's psychologist was given the go-ahead to do a long-awaited autism assessment. Autism was confirmed. So much about Chrissy is explained by this diagnosis, hence our late learning curve.

Today, Chrissy's self-injurious outbursts blight her life more than ever but she can still be an absolute joy - affectionate, funny and full of endearing quirks, such as the 'magic hands' pictured. Her hands are still quite plump, like a baby's. 'Chrissy, do your magic hands,' we ask, and she's off, grinning like a Cheshire cat and rubbing those flappy hands together until they squeak.

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Friday, 14 October 2011

#Special Saturday post - Groundhog Day

My life feels like Groundhog Day – we've been here three times in three years. Chrissy’s escalating behaviours, placement not meeting her needs, with the backdrop of the funding dispute. Apart from last Sunday's completely nuts bender, which I think has kept me going through this week, I can still focus on little else. Chrissy's spate of awful impulsive/compulsive self-injurious behaviours (SIB) is continuing. (I'm not going to call them outbursts or meltdowns anymore these have a different, far more intense quality). When I look back at the short phone videos I've been taking to show her doctors, I can't bear to watch or listen for long. She is wretched in them, as if she is being tortured by something outside her control.

These behaviours have fallen into a pattern of going dramatically downhill for several weeks once a year. This year and last there have been meds changes. I can’t remember whether there were the year before but will look into it. How any placement can meet her needs when she's in this state, I don't know. They can only contain her. However, this hospital placement has been promising far more than it delivers for months now & the behaviours have only recently escalated. I don’t attribute them to the environment, which will have remained largely unchanged. As I've said, the Topiramate reduction is likely to be a factor, if not the cause of her unsettled behaviour. However, I would still like her behaviour charts examined to see when she became more unsettled, as a thyroid medication was introduced on 20 September, which correlates with the behaviour changes. I’m told that it’s a tiny dose & wouldn’t cause this sort of problem but, with Chrissy, I always make extra checks as she has such paradoxical & unusual reactions to medications, especially when they are first introduced or changed.

So on Tuesday, Chrissy was at home with my mum and I. It started off ok but, when I was holding her hand, I noticed it was twitching & shaking. She grew increasingly demanding & obsessive about when dinner was ready, what’s for dinner, the computer, DVDs etc. She made her usual ineffectual attempts at spitting & hurting me with slaps on the shoulder. Her obsessions led to three sessions of prolonged, impulsive/compulsive SIB. They were so violent & prolonged I rang the hospital for help – something I’ve never done before. Mum said she hadn’t seen anything this intense for ages, & observed how Chrissy seemed ‘possessed’ by what was happening to her, & wanted to stop but couldn’t.

When Chrissy had recovered she suddenly beamed at me but, even in between outbursts, the smiles were short-lived. She was generally more agitated & demanding than usual. At around 9, Chrissy let me bath her and put her to bed. She then sat silently on the toilet seat in the dark for about 20 minutes, & called me when she was ready to move on. If you intervene before she's ready she will kick off again. She needs to be left alone. I call these her ‘frozen states’ and they often occur between violent SIB. Mum & I were struck by how changeable Chrissy was overall. At one point we asked her what had been the matter; she smiled sweetly & said ‘I had a tantrum’ but wouldn’t be drawn further.

That night, she slept right through until 2pm the following day. We managed to avert any major crises until the car journey home where she became agitated and obsessive again, & kept undoing her seatbelt & trying to climb into the back. The hospital reported that there were further ‘behaviours’ later on and the following day. I also learned that they, too, had seen them occur without any environmental trigger. I was told that while we were away, she had even got out of bed at night, run into other patients' rooms & jumped on top of them - to occupy their beds rather than hurt them. This barging into other people’s rooms is something she's been doing at home. Chrissy then threw & smashed someone’s tv set & radio – first I’d heard of any of this. These problems at night are exactly what happened in her residential placement in West Sussex at the end of 2010. When she’s settled she normally sleeps well.

The compulsive/impulsive nature of Chrissy’s self-harming behaviours has never been examined. One of her psychiatrists put it down to ‘autistic crisis’ and another to ‘attention-seeking!’ Her psychologist put it down to 'jealousy' of another challenging patient! We've never seen any evidence that Chrissy experiences jealousy as such - I can only think it's an unfortunate choice of words. English isn't her doctors' first language. Her previous neurologist wanted her to see a specialist in movement disorders and tics. We’d asked for the referral to go ahead when she was admitted to hospital but, at the time, her psychiatrist felt that the Maudsley (who came out & assessed her) would be able to offer everything she needed. She also said that the medications Chrissy was on would be the ones used for tic or movement disorders.

We can only hope that Chrissy will emerge from this period very soon & that we'll eventually help her to achieve lasting stability again as she did during the last six years of her teens.

Friday, 7 October 2011

A System that Lets us all Down

Chrissy smiling sweetly after an outburst - loving the feel of my chilli-chopping gloves!

Sorry, this is a long one. I've got quite a story to share...

Last week I called the ward to see how Chrissy was and heard she’d become very challenging, and her sleeping pattern had changed radically for no obvious reason. We were on holiday in Sardinia and I immediately felt guilty, wondering if she was missing us. We’re not sure about Chrissy’s concept of time – but we suspect she pines when she goes longer than a week or so without visiting home.

Last Sunday after our return home, I phoned again to see how she was and was told that she’d spent all day screaming and self-harming. She couldn’t be pacified and there were no obvious triggers. I was due to see her neurologist on the Tuesday and arranged to bring her home afterwards.

After the appointment, I chatted to Chrissy’s nurse about her. She said Chrissy’s behaviour had been really difficult over recent weeks & she hadn’t been able to pinpoint why. We’re hoping her multi-disciplinary team will be able to identify from behaviour monitoring charts what triggered these changes. Chrissy hadn’t been home for a while, which is unusual for her, there had been lots of different staff on the ward. There were also drug changes – the anti-epileptic, Topiramate, has been reduced and thyroid medication introduced. The neurologist explained that behaviour can often worsen after an anti-epileptic is reduced or changed as it can have a sedating effect that wears off when withdrawn. Apparently, the thyroid drug is low dose and would not be expected to cause these side-effects. I’m pleased that the neurologist and psychiatrist are working closely together on meds changes but, despite her being in hospital for 20 months, we still have a long way to go with further changes indicated.

I wondered about the support and autism training ward staff were given, and, importantly, their experience of dealing with patients with autism. I asked about daily activities and the nurse said she tried to do baking with Chrissy but could only do it when regular staff were on shift. Where was the consistency and continuity of care? She said that there had been lots of staff changes and during further discussion, I grew concerned that bank staff weren’t properly (if at all) briefed about the patients. When the nurse is on shift and working with new staff, she advises them on the day about how to bath Chrissy etc., which is nowhere near long enough – anyone that works with someone as complex as Chrissy needs to shadow for a period of time surely? For example, when Chrissy kicks off, if you try to intervene or respond to her, which most people would do naturally, it can make things escalate. We had been told before Chrissy’s admission that all bank staff would be known to her and taken from a regular hospital pool rather than outside agencies. This doesn’t appear to be happening.

When we got back to the ward, it was chaotic. Chrissy was wearing someone else’s pyjamas or clothes – wasn’t sure which – the top had a huge rip across the chest, which I was told she had done herself – very likely – but to leave her in it when they knew I was coming? There were other unfamiliar items of clothing strewn around her room. She was in bed and her carers had got her up when I arrived, instead of getting her ready for her visit home as you’d expect. This could be part and parcel of Chrissy’s poor sleeping pattern and challenging behaviour though I would think she’d have been more compliant due to her excitement at coming home. A carer dressed her in a horrible pair of joggers that had shrunk and faded in the wash. Her carer was lovely and friendly but I tensed when she excused the trousers with ‘She’s only going in the car, isn’t she?’ Chrissy was getting low on some of her clothes because I do her washing & there was a huge bag of laundry waiting for me but there were a nice pair of trousers in her wardrobe. I swapped the trousers, asking the carer to throw the offending ones away. Some clothes were crumpled up in her wardrobe with no attempt to fold them neatly and other people’s clothes were strewn around the room. I never spend much time on the ward – it isn’t encouraged because new faces are disruptive. I was dismayed by what I saw. Sorry, but I strongly believe that we should, as far as possible, treat other people, including those with learning disabilities, the way we like to be treated ourselves. The fact that these carers and nurses were obviously lovely, compassionate people made it worse in a way. Casual, throwaway remarks can reveal volumes about a person’s attitude to disability – or is the hospital’s culture to blame? Do they see people like Chrissy as less than human, and become desensitised? After all, they deal with the most challenging disabled adults out there. Am I expecting too much? Anyway, besides all that, it’s meant to be an autism speciality service with tight structures and routines.

The medication hadn’t been prepared before I’d got there so Chrissy and I had to hang around while it was sorted out – which was agitating her. The Diva waits for no one! Then her symbols book (for communication) couldn't be found. The nurse in charge said ‘it doesn’t matter does it now her communication’s so much better?’ [since the Topiramate reduction] I doubted the psychologist or speech therapist would agree with that view, The symbols are meant to be a consistent part of her care plan and used to move her on between activities and to help her focus, among other things. After some frantic searching, we had to leave without the book. I felt a sense that they were ‘fire-fighting’ on the ward, just dealing with issues as they arose. Other things have been lost on the ward too, which is hard to understand when there are so few places to lose anything!

I fought back tears all the way home and wondered if there was any way that I could keep Chrissy (literally, not take her back) but her extreme behaviour at home soon made me realise how futile that plan would be. Chrissy's volatility and irritability got worse as the evening went on. She alternated between screaming, ferocious self-harming, violent outbursts and loveliness. As always, it’s heart-breaking to watch because she can’t tell us why she’s doing it or how she feels. I noticed hand tremors and bald patches where she is pulling her hair out. The following morning, Chrissy was generally calmer, although she kicked off for a short time after banging her knee on the bath as she tried to climb in. It was interesting to see how she reacted – she smacked the spot that she’d hurt, then banged a nearby mirror several times with her hand, then tried to spit (luckily a skill she hasn’t mastered very well), hit me, pull her hair and throw something all at the same time. Pain has a different effect when it’s not self-inflicted – and it was threatening to drive her into a frenzy of compulsive destructiveness and self-harm – she would have hit me if I hadn’t dodged out of the way, I let her calm down before encouraging her to climb into the bath again. There is nothing else you can do when she gets like that. Offering to kiss it better fuels her rage.

It would be too simplistic to blame all her behaviour changes on the care she’s getting. We suspect the quality of care has been worsening for a while and we have seen behaviours like this through drug changes (and during other times where triggers weren’t obvious) since Chrissy was a baby and still living at home. So, we are, for clarity, looking at them as two separate issues – the third (major) one being the backdrop of the funding dispute holding up future planning and preventing a cohesive, transparent approach to dealing with any problems Chrissy faces.

This dispute now involves three counties again – it had shrunk to two, or so I’d believed. They are all counties that Chrissy has lived in since adulthood. It does seem like poetic justice as the third county had done all they could to avoid being ‘dumped on’ and now it’s come back to haunt them as one of the NHS trusts is ‘seeking to transfer commissioning responsibility.’ I’ve been advised not to get involved in all the ‘politics’ but it’s more than that. Chrissy has been turned down for continuing healthcare funding because her needs, according to the way her assessors have used (some would allege ‘abused’) the assessment criteria, are deemed to be more social than medical. All those I’ve consulted in social and healthcare related industries are flabbergasted by this decision. One of the authorities is appealing against an ‘extra component’ allegedly used in the assessment, the nature of which I can’t go into at this stage. It has huge implications for Chrissy’s future care and may open up a can of worms for other people turned down for CHC by this NHS trust. We now wonder how much of Chrissy’s medical support over the past eight years was driven or at least influenced by this ‘extra component.’

In addition, because no one wants to take financial responsibility we have not been able to plan for where Chrissy goes next, which leaves her in limbo.

As I write, things are escalating behind the scenes. By coincidence, someone commissioned by a local authority involved in Chrissy’s care visited her as part of a review of all out of county health-funded placements (due to the Panorama programme apparently). Her report recommends radical changes to Chrissy’s care and a speedy resolution to the funding dispute. An independent advocate is helping me work towards the same end. I’ve made a complaint to the hospital and against the local authority and two NHS trusts involved in the dispute. I’m appealing against the continuing healthcare decision, and asking it to be back-dated and re-assessed.

This isn’t just about Chrissy anymore. Our story is an exposé of a flawed system that lets down society's most vulnerable.