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! http://www.autism.org.uk/living-with-autism/at-home/coping-with-christmas/ten-ideas-for-a-happy-christmas.aspx



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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 http://www.stelizabeths.org.uk/schooldefaulthome, 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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Friday, 25 November 2011

Communication - a #SpecialSaturday post

Ineffectively met communication needs are triggers for challenging behaviours. We use communication strategies akin to those suggested by The Challenging Behaviour Foundation and Jill Bradshaw at the Tizard Centre, who both kindly allowed me to use their ideas in my book 'Bringing Up a Challenging Child at Home.'

Positive statements about what a child is going to do are much clearer than telling them what they're not going to do. For example, if we say to Chrissy 'You're not going in the car, she only hears 'Chrissy' and 'car,' and gets distressed when she realises she will have to walk. The message would have been clearer to her if we'd told her what she was going to do: "Chrissy, you're going for a walk."

Abstract concepts are particularly difficult to understand. If I ask Chrissy what she's been doing that day she can't tell me. If I ask her what colour top I'm wearing, particularly if I point to it, she answers me correctly. Her verbal communication is misleading. She is able to understand simple phrases and use learned 'parrot fashion' phrases in context - called social masking.

Much of Chrissy's communication is stream of consciousness observations. She was sitting next to me earlier and looking around the room. "It's a mirror," she observed. Then answered herself with: "It certainly is." She began to list what she saw. "It's a yellow flower and trainers and brown. Home. Brilliant." *Thumbs up sign* She then turned to Ian, my husband, and asked: "You fine Ian?" "Say yes!" *Sign for yes.*

Chrissy can follow simple instructions involving up to two named objects, ie 'put your cup on the table.' Her expressive communication is limited. She can’t tell you if she feels hot, cold, hungry or sad, and will use behaviour rather than words to express her emotional needs. We use a combination of verbal, basic Makaton sign language and symbol aids to help her move through her day. Using communication strategies are crucial to help her to stay calm and they have to be adapted according to her mood. It's draining when she repeats the same question endlessly, and demands a specfic response each time - but fantastically rewarding when she deviates from her learned phrases and makes a meaningful attempt to communicate with us.




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Friday, 18 November 2011

Special Saturday - What I'm thankful for

When Chrissy was little I spotted an ad in my local newspaper inviting mums of children with special needs to get together for regular meet-ups in each others' houses. I grabbed the opportunity like a lifeline and am still in touch with some of the parents I met there. Sadly, over the years some of our children have passed away. When I’m in despair about Chrissy I try to remember how lucky I am that I still have my child. Chrissy is physically healthier than many children with rare chromosome disorders.

We're also very fortunate to have supportive, loving family and friends - and Chrissy’s step-dad of 20 years is our rock.

Another thing I'm grateful for is to have the opportunity to write about what interests me and get paid for it – many of my magazine and newspaper stories are learning disability or health related.

I’m thankful that we weren't born in another time or place where Chrissy would have been ostracised and probably wouldn't have survived childhood. The excellent Channel 4 documentary 'The Queen's Hidden Cousins' http://www.channel4.com/programmes/the-queens-hidden-cousins/4od was a stark reminder of how appallingly people with learning disabilities were treated until very recently.

I also have to remind myself how far we've come as a family. When Chrissy was five I separated from my three children's dad, & lost everything. To cut a long story very short, I ended up homeless & was terrified of getting stuck in a hostel with Chrissy disturbing everyone with her screaming episodes. Thankfully I was housed by the council just before I had to give up my marital home. I was getting no support with Chrissy from outside services & my wider family were also dealing with my dad's premature Alzheimer's. I had no idea that respite care and social workers existed to help families like ours - until I had a breakdown. It was the lowest time of my life.

Back then if I could have peeked into the future and seen how much better our lives are now it would have seemed like a fairytale!


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Saturday, 12 November 2011

Antipsychotics

Did anyone see the C4 documentary about children on antipsychotic drugs? http://www.channel4.com/news/numbers-of-children-on-antipsychotic-drugs-doubles
I’m so pleased this scandal is being highlighted. There have been several reports about over-use of antipsychotics in elderly dementia patients but not in children or people with learning disabilities. I blogged about this issue last October:
http://jgregorysharingsstories.blogspot.com/2010/10/autism-industry.html
The story about the little boy on the C4 programme sent chills down my spine. He banged his head against hard surfaces and lay on the floor kicking & screaming – just like Chrissy. Antipsychotics were eventually prescribed when he was five but had no benefit. He was then seen by Professor Chris Oliver http://www.cndd.bham.ac.uk/people/ChrisOliver.shtml who suspected he had reflux (heartburn) but was unable to express physical pain due to his autism. When his reflux was treated his behaviour & self-injurious behaviours improved significantly.

Many children with 1q21.1 microdeletion have been diagnosed with reflux as babies. When I remember how Chrissy used to arch her back, and scream for ages in infancy, then head-bang as a toddler, I wonder if she had undiagnosed reflux. My blood still boils at how I was fobbed off when I sought medical help. I was convinced my child was suffering and in pain but these behaviours, & Chrissy’s prolific vomiting, were dismissed as being ‘normal’ for babies & I was treated as an over-anxious first-time mum.

After seeing the programme, I contacted Chrissy’s doctors & asked them to check for reflux again (sure I’ve done this before!), as it would be helpful to rule it out as a contributing factor in her self-injurious outbursts even now. It may be that they started off as a reaction to pain then became entrenched - but causes are probably more varied & complex. Explosive outbursts, sensory integration issues & poor impulse control are also part of the chromosome disorder. I would also like to discuss the plan for reviewing Quetiapine, an antipsychotic Chrissy is taking now. I am eager to see how she is on a gradual reduction programme as surely there should be good justification for her to be on an antipsychotic? I’m not aware of any, & it’s interesting that the investigation suggests there's no evidence that antipsychotics help self-injurious behaviour. Also, more chillingly, no one knows what harm they do over time – particularly to the developing brain of a child. I’ve seen how they affect every part of the body and have frequently expressed my deep unease at their effects on Chrissy. She was prescribed antipsychotics at 10 and different ones were tried until she was 14 and in such a state that she ended up in hospital where her whole medication regime was overhauled. When she had the platelet reaction six years ago she was put back on antipsychotics – newer ones that allegedly cause less side-effects – but I remain unconvinced that the risk-benefit balance is in Chrissy’s favour.

Here’s a list of the side-effects of Risperidone, the antipsychotic Chrissy was on prior to Quetiapine, as reported to her learning disability psychiatrist in 2008:
• Parkinsonian tremor in right hand, and, more mildly, tremor in head and mouth.
• Noisy breathing, even when sitting quietly.
• Frequent leaning to one side – Pisa Syndrome?
• Poor balance.
• Decreased fine motor co-ordination – problems eating neatly, particularly using a knife and fork, which Chrissy always used to be able to manage with no problems.
• Decreased gross motor co-ordination. Problems climbing into and out of unfamiliar things, like fairground rides, which she would have once managed, albeit with support.
• Increased agitation and shorter concentration span.
• Drooling from mouth. (Non-existent normally)
• Frequent urination and loss of bladder control.
• Reduced cognitive ability – less aware of surroundings and takes more time to process information.
• Weight gain and obsession with eating.


My concerns were initially dismissed, ludicrously, as being ‘part of Chrissy’ but eventually the psychiatrist agreed to reduce the antipsychotic dose, which diminished the side-effects. However, without the doping effect, many self-injurious, challenging behaviours returned, hence the change to Quetiapine. We haven’t seen the same side-effects, just different & even scarier ones. The worst of them settled over time when the dose was tweaked but Chrissy is now obese & still has self-injurious outbursts.

Of course, there are no drugs to ‘cure’ conditions like autism. You can adapt surroundings and use strategies to help someone cope better & improve their functioning. However in certain circumstances medication is necessary, not as a chemical cosh to make carers’ jobs easier, but to improve quality of life by treating symptoms such as extreme anxiety or a compulsion to self-injure. I don’t know why antipsychotics are so widely used in place of other medications to treat such symptoms. Have psychiatrists become too complacent? Is it a case of better the devil you know? Any medications that affect brain functioning in the way antipsychotics do should only be prescribed as a last resort and with strong justification. They should also be subject to careful monitoring.

Surely these are basic medical principles - so what's going wrong?


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Saturday, 5 November 2011

#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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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.' http://www.amazon.co.uk/Bringing-Challenging-Child-Home-Enough/dp/1853028746/ref=sr_1_1?ie=UTF8&qid=1319238962&sr=8-1

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.

Friday, 16 September 2011

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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Friday, 9 September 2011

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....

Thursday, 8 September 2011

The Real Face of a Carer - Guest Post by David McKendrick, Social Work Lecturer

David sent me this moving piece he wrote for Professional Social Work Magazine, Scotland. He makes a heartfelt plea for social workers to listen to the experts - the carers themselves - when assessing caring situations. His subject, Crawford, became a carer to his wife of 31 years after she was knocked down by a car, & left with life-changing brain injuries. For me, their story highlights how anyone can find themselves plunged into the role of carer.

“What? The true face of carers? This is the theme of Carers Week? Listen, don’t ask. You don’t want to know. If you did have a clue what a carer’s true face is, it would frighten the pants off you!”

This is a quote from Hugh Marriott, a carer and author of The selfish pig’s guide to caring, about Carers Week which ran from 13 to 19 June. If you want to know if this is the truth then ask Crawford Fallon. I did and it is. For the last 10 years Crawford has been the sole carer for his wife Elizabeth, who was brain injured after being involved in a hit and run accident.

Elizabeth’s injury came after a night out. The couple were walking home when she was hit by a car. In an instant their lives changed. There was no warning, they were not consulted and the repercussions of that night have changed their lives completely.

Before the crash, Crawford and Elizabeth were happily married and living in their home town of Shotts in North Lanarkshire. Elizabeth was a nurse specialising in working with infectious diseases and Crawford was developing a career in the mining industry.

Crawford had to give up his job and become a full time carer for Elizabeth. Elizabeth’s injury makes her unpredictable, she can become aggressive and can shout and swear. On occasion she has been violent and has hit Crawford. Elizabeth has hurt herself and talked of suicide. Initially, there were many offers of help from family and friends but these have all stopped. People are embarrassed by Elizabeth’s behaviour and don’t like being seen out with her.

Like many carers, Crawford attends to Elizabeth’s every needs. Over the years Crawford has kept an intimate diary detailing what he has done. He has developed a whole new range of skills, he is an expert and there is quite literally nothing that Crawford does not know about caring for Elizabeth.

Before Elizabeth’s accident Crawford had never cared for anyone, least of all someone with a brain injury, so he has had to learn. This has often been by trial and error. Crawford has made mistakes and each mistake has been costly, resulting in either his or Elizabeth’s distress - or both.

Crawford’s learning has been unsupported with little help. There have been no university tutors, practice educators, senior carers or colleagues to learn from. There has been no safe learning environment and no boundaries. Elizabeth’s personality can change seemingly without warning. But Crawford has become expert at reading the signs - he has to be.

Recently Crawford was visited by a social worker who was completing an assessment. Like all social workers he had a deadline, he had a caseload, he had to complete all the relevant paperwork and had to fill in all the computer screens. Crawford went out to make him a cup of coffee and on his return the social worker was asking Elizabeth how she would feel about someone coming in to help care for her.

Elizabeth became angry. This can happen and when it does Elizabeth can shout and swear or even become aggressive. Crawford knows this, he is the expert. If you read his diaries or ask him to share his expertise he will tell you. Crawford used all of his patience to explain to the social worker that working with Elizabeth requires skill and tact. Elizabeth does not understand the concept of a deadline, or of a report or the need to have your case notes updated.

Crawford has been here before with doctors who have offered diagnosis after diagnosis. He has been there with occupational therapists, dieticians, psychologists and psychiatrists. Amidst all of this Crawford is still engaged in a complex legal battle over the original injury. Losing this could put his home at risk as he and Elizabeth exist on state benefit. Crawford has to care and fight, and balancing both of these is becoming an ever more challenging task.

Crawford needs to be organised - for him this is the key - and his diaries help. He has by now experienced most of the challenges involved in caring for Elizabeth. There is not much he has not dealt with. He has dealt with tantrums, violence, tears, depression, anger and frustration, and understands all of these.

He understands all to well his own burden. Fighting on all fronts is draining and he too is feeling the pressure. Caring for Elizabeth saps his energy and creativity. Like many carers he feels he is the only one who can care for Elizabeth.

He finds it easy to share his knowledge and expertise but hard to give up his role. He worries that someone else won’t care for Elizabeth properly. He worries that the progress they have made will reduce if someone else comes in. He worries that if someone else comes in he will lose his identity.

Crawford likes to keep fit. He finds solace in the solitary pursuit of running. He uses this time to refresh himself, to de-stress, to reflect on what has worked and what he might do differently. Crawford needs re-assurance. He needs patience and understanding and he needs to be involved. Crawford needs to be recognised as the expert.

Crawford and Elizabeth need social workers to understand that their relationship is intimate, that amidst all the frustration and anger there is a bond that has been challenged and strengthened by adversity. Crawford and Elizabeth need each other and they need social workers to understand this.

For Crawford, the important thing is that each professional has an understanding not only of their role but of how all of them work together and understand each other. Co-ordination is the key. If professionals took the time to read up on Elizabeth before they visited her they would understand that change frightens Elizabeth and that when she is frightened the fight or flight instinct takes over. Trying to put together a package of support that will have an impact won’t happen under these circumstances.

Crawford needs social workers to talk to him. He knows the Elizabeth’s behaviour can put people off. He also knows that this can be avoided. New ideas or changes need to move at Elizabeth’s pace, she needs to be consulted and her views sought. Crawford needs to be there to help Elizabeth to understand what is being suggested. After all of these years Elizabeth trusts Crawford implicitly. He knows and she knows he knows.

In Crawford and Elizabeth’s world the professional pressure for social workers matters little. They are sympathetic. They know that social workers work in a busy and demanding environment, that they are often blamed and they get bad a press. All of this is relevant but not important. For Crawford and Elizabeth, these challenges are professional not personal.

Crawford and Elizabeth’s challenges are personal. Their lives are dominated by Elizabeth’s needs and Crawford’s desire to meet them as best as he can. Crawford does so because he loves Elizabeth, their bond is deeply personal and goes beyond any challenge that life has thrown at them.

Crawford has accrued knowledge and expertise. This has been developed in the most pressured and challenging environment and Crawford has retained all of this knowledge. He is desperate to share it. There are no issues of confidentiality - it is theirs and if it helps it is yours.

Yet in helping Elizabeth gain more independence there is a risk for Crawford. If Elizabeth gets the support she needs he needs to re-define himself and there is a risk here. Such a transition will prove difficult. While Crawford and Elizabeth want this, they know that getting it will mean another change. They know this but they still want it.

Crawford has aspirations and wants to go back to university. He sees a future but he needs to know that the present is safe. In order for this to happen, social workers need to listen to Crawford and to learn from him.

Social workers need to ask him about Elizabeth. They need to ask him about him. They need to ask them about them. Social workers need to talk to others such as psychiatrists and dieticians. For Crawford, social workers need to value the uniqueness of his experiences and of his relationship with Elizabeth.

Carers do not feel connected to many of the organisational pressures that are around for social workers. They want a service that meets their needs. The financial pressures of local authorities are not immediate to them. Why should they be? The pressures they are experiencing are just as great. They are personal pressures, everyday challenges to which there is no end in sight. Crawford and Elizabeth need social workers who can listen to and learn from them.

Saturday, 3 September 2011

A #Specialsaturday Post - My Special Needs Child's Greatest Achievement

With exquisite timing, a story was tweeted about the chaos caused by local authorities arguing over funding responsibilities when a disabled person moves to a different area - so called "ordinary residence." I clicked on the link &, to my surprise it was our story. I had emailed various disability organisations about the funding wrangle over responsibility for Chrissy's care so assume it must have come from one of them.

The story, Ordinary-residence; extraordinary-mess http://www.vodg.org.uk/cgblog/21/105/Ordinary-residence-extraordinary-mess.html
was posted by Graham Faulkner, Chief Executive, Epilepsy Society, Vice Chairman Voluntary Organisations Disability Group. It highlights discrimination against thousands of disabled people who can't move where they need or want to due to funding rows between local authorities. It also links in perfectly with this week's #Specialsaturday theme. One of my special needs child's greatest achievements is raising awareness of failings in the system, sadly by experiencing so many of them herself.

It wasn't simply a case of a wrangle between two local authorities - CHC (continuing healthcare) was also involved & argued that Chrissy's predominant need was social care, not health. Their nurse assessor confided that they'd used 'outdated assessment criteria designed to assess people with dementia.' I am awaiting a response to a complaint I've made about this issue.

Because Chrissy was moved to a 3rd local authority after a sudden, heartless eviction from a residential home, the dispute became even more complicated. It led to delays in Chrissy getting effective care, support & medical treatment, & endless meetings with commissioners, care managers & healthcare professionals. I took legal action three times & went to the local newspaper to resolve the stalemate situations Chrissy was put in. Meanwhile, Chrissy's mental health was deteriorating. She had made herself bald on one side by ripping out chunks of her hair, & spent hours self-injuring, hitting out at others, & screaming for hours. Increasing numbers of carers were being put in to manage her behaviour but Chrissy's quality of life was shit.

Last year, we made a complaint to the three authorities involved & eventually got a joint response from two blaming the third authority for it all. We are awaiting more responses - about the CHC assessment & from the third local authority - before we can proceed further.

Legal action settled the dispute temporarily in order for Chrissy to be funded at an assessment & treatment unit but it hasn't been settled long-term as the funding agreement was 'without prejudice.' The dispute continues with no end in sight as an important meeting to discuss Chrissy's future looms.

This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe. 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://specialsaturday.org/home/"> http://www.facebook.com/SpecialSaturday

Thursday, 25 August 2011

'How I'd like my Life to be' by Chrissy - A #Specialsaturday Post

A chance call from the Challenging Behaviour Foundation & a chat with two parents of other adults with complex needs have forced me to think long and hard about the journey we’ve been on with Chrissy over the past few years.

After 27 years of fighting to get Chrissy what I think she needs I’ve become entrenched in trying to sort out failings in the systems designed to support her. Am I failing Chrissy myself because I’m too exhausted and overloaded with information to think clearly anymore? It got me thinking… Have I lost sight of how she would want to live her life?

If she could speak for herself this is what I think she’d say…

Chrissy:
‘I’d like to live in my own home with all my own things around me, including my computer, my DVD’s, my foot spa, multi-coloured hairbands, books and favourite pictures. A garden that I could go and sit in on sunny days would feel very calming. I could blow bubbles and play ball out there too. I’d have my own chair and table outside with a sun umbrella for hot days so I could draw or watch my portable DVD, or sit quietly listening to the birds and looking at flowers with my favourite drink or snack in front of me. It would be fantastic if the garden was big enough for me to ride around in my trike, or close to a safe space where I could ride it with supervision. It musn't be too overlooked because I need my dignity respected when I lose control of my emotions & strip off on the lawn!

My home must be close to my family’s. I stay with them overnight once a week and would love to see them even more often, either at their home or mine for shorter visits. No one else could evict me or take my home away from me - it would be mine for as long as I needed it & furnished with my needs in mind. I wouldn't be forced to move to any more unsuitable places where there's no bath, nothing to do, or a string of strangers to care for me who don't understand my needs.

A wall-chart with removable stick-on symbols to help with my daily routine and planned activities for each day so that I'd have plenty of interesting things to do when I’m feeling up to it would be nice. I'd also like daily home-based activities available as I can’t always get out and about.

A bath with a rail so I could climb in and out more easily is a must. Showers are a definite no-no; the spray on my skin feels horrible. My body reacts to the world around me differently to most people's. Sensations that you don't notice, like a breeze blowing in my face, or sand under my feet feel very uncomfortable but broken bones & missing toenails don't seem to bother me. So you need to keep an eye out for unexplained swellings or hidden injuries. I have problems with balance & spacial awareness, & take my time walking on uneven surfaces, around obstacles or up & down steps. I can’t regulate my own body temperature well but fans on hot days & wearing gloves indoors if my hands are cold help. If I ask to wear a coat, scarf and gloves on a hot summer’s day, indulge me - they won’t stay on for long.

Sometimes I appear to have understood what's said to me but, actually, I may not have done; I need lots of time to process information. I can be helped through difficult times by having pressure applied to the backs of my hands, a cuddle, sitting with my weighted blanket on my lap or a massage. If an outburst threatens, I sometimes respond to tried & tested distraction strategies or basic sign language and symbols to de-escalate my distress. You may find it helpful to try & identify a trigger so it could be avoided or minimised in future. If I lose control, I don’t like other vulnerable learning disabled adults around to witness it & react with their own disgust, fear or anger. I can’t cope with other people’s challenging behaviour around me either. My own problems are more than enough to deal with.

Consistently applied behaviour support approaches are vital for me to remain as stable as possible, along with verbal communication, appropriate symbols and sign language. Any staffing or routine changes must be carefully planned and should only take place if they benefit me, & for no other reason. I need help to dress nicely, take care of my clothes & other possessions, shave my legs, keep my hair untangled and my teeth clean. Like most women, I lap up compliments & love to look nice. I especially need help to ensure that my diet is healthy and that my weight is kept under control because the medicines I'm on make me ravenous & food-obsessed.

On good days, I’d like enough support to go out for a walk, maybe to the local shop, or a drive to a garden centre or park. On bad days, I need space to rest undisturbed in my room, or have a good scream. If I'm hurting myself, I need to be kept as safe as possible, with carefully positioned cushions or sharp edged furniture moved. I'd need a safe area in my home, to which I can be directed or carefully moved with planned physical interventions if necessary as a last resort.

If I say I feel sick or start looking vacant or smacking my lips, look out for an epileptic seizure, & help me sit down somewhere. Even short seizures sometimes wipe me out & leave me confused & disorientated, so I may need a sleep to recover.

The local GP and learning disability team must be fully briefed about my condition and able to respond in emergencies – an appointment several weeks ahead is no good as my condition is very changeable and unpredictable. They'd need to be open-minded about what works for me as I'm extremely sensitive to many medications & they can sometimes induce rare adverse side-effects.

My senses get overloaded by any clutter around me at the table when I’m eating or doing an activity. I’m compelled to have two of just about everything from tissues to dollops of tomato sauce but cutting one slice of toast in half or ripping a tissue in two is fine. If I ask 100 times what’s for dinner, try to be patient & distract me but be firm with me, & please don't overfeed me to sedate me. Oh, just one last piece of advice for now - if you don’t make my bed covers all square and neat around me and turn my pillow (I call it ‘cushion’) over when I ask, I may shout at you and throw a strop.

Yes, I know I'm a diva but I have to be to survive in your world.'

This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe. 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://specialsaturday.org/home/"> http://www.facebook.com/SpecialSaturday

Friday, 19 August 2011

#Specialsaturday post - A Spooky Coincidence & an Aborted Visit

Because I’d had a microdiscectomy on Monday, I wondered if it was wise to have Chrissy home this weekend. After learning from her nurses today that she was relatively settled, I decided to give it a go. My younger daughter, Alex, would be here until their step-dad, Ian, came home, so if things kicked off...

What I hadn’t bargained for was things kicking off immediately Chrissy arrived. As soon as her nurses brought her home this afternoon, she started asking for dinner - then repeating obsessively that she wanted chips. It escalated too quickly for us to prevent her from taking to the ground. For the 2nd time in weeks she stripped off on our front drive & had a meltdown - the most violent I've seen since Xmas. Her nurses said they'd seen meltdowns like this on the ward since her Topiramate had been reduced. They’d obviously passed us by until now.

Spookily, Chrissy had a horrific looking abrasion on her back, exactly where mine is from surgery. As she scraped herself backwards along the gravel on our drive, stones & dirt stuck to the wound. Chrissy continued to thrash about, oblivious to the pain. I marvelled over how she’d never suffered a serious wound infection.

The high-intensity outburst must have lasted about an hour in total and I realised, with a sinking heart, that it would be far too ambitious for me to have her home in such an unpredictable state while I was still recovering from surgery. The three of us shielded Chrissy's nakedness from the busy road outside with a blanket & her coat, & waited it out. It faltered for seconds then started full force again complete with foot-biting, hair-pulling, skin pinching & finger twisting. If we got too near we got kicked & hit out at too. “Go away!!!” she shrieked.

A painter had been working at the back of our house & had now finished. I asked Alex to tell him to wait before he came round the front to his van. He could hear the ear-splitting screams clearly. "It's my sister - she's autistic," Alex explained. What else could she say?

Finally, for no obvious reason, Chrissy stopped, got up & was immediately docile & compliant, chatting away as if nothing had happened. She let us dress her over her dirt-covered body & take her inside to wash her hands. She then hovered excitedly as I packed up some food for her to take back with her. "What was all that about?" Alex asked. "Had a tantrum," Chrissy said matter-of-factly. I then settled her back in the car. As she smiled sweetly at me through the car window, I felt like I'd let her down, & had a little weep in Alex's arms.

Later, her nurse called to say that Chrissy was fine, & had remained settled. She also reminded me that, because Chrissy's concept of time is different to ours, she hadn't realised that her home visit had ended before it had begun. Chrissy was just happy that she'd been home to see mummy.

This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe. 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://specialsaturday.org/home/"> http://www.facebook.com/SpecialSaturday

Sunday, 14 August 2011

A Strange Genetic Journey

I’ve just had a long conversation on Skype with a pleasant & well-informed Dutch guy whose wife & son carry the same chromosome deletion as Chrissy. He gave me a potted family history that struck a spooky chord. Although Chrissy’s deletion is de novo (maternal origin), our families share more than a coincidental number of characteristics.

The man's wife was born with a squint – the first sign of a possible genetic problem. I was too, & had corrective surgery. Her dad had one leg about 1½-2 inches shorter than the other, like me. Due to investigations into ongoing back problems, I’ve discovered that I also have subtle ‘skeletal abnormalities’ in my spine that are connected to the leg length discrepancy. There are other similarities in our family history that have made me want to explore this further - maybe with a research scientist who has a particular interest in 1q21.1 anomalies.

It makes me wonder how 'de novo' the effects of some of these rare chromosome disorders really are - or am I reading too much into a series of coincidences?

Friday, 12 August 2011

#Special Saturday Post - One Step Forward Two Steps Back


Last week I blogged about how much more fluent & alert chrissy was after the recent meds change. Unfortunately there's a downside. Her meltdowns have been more intense & she has ripped a toenail off. Chrissy's nurses can't move her to a safe area when she kicks off because - get this - she isn't under section. She gets herself in awkward spaces sometimes in meltdowns - she has jammed her foot under car seats & all sorts. She doesn't tolerate wound dressings so there is a risk of infection from her injuries. She is on antibiotics, which make her more irritable. It feels like we're going round in circles.

I know I keep banging on about Naltrexone but I wish there was some way another trial could be done with close monitoring of Chrissy's platelet count. It's the only intervention that has EVER stopped Chrissy's self-injurious behaviours. I've asked her medical team to get in touch with the doctor that prescribed Naltrexone 13 years ago for an objective report on its benefits. Medical notes from that time have been lost.

Chrissy's been a joy so far today. When this photo was taken she was in my office ordering meal ingredients online. She was saying what she wanted, ie sausages, baked beans etc., I was writing the word down & she was typing it out then adding it to the shopping basket to see a picture of the item on screen. We played online games then sat in my car listening to my ipod. I'm experimenting with different activities now Chrissy is more engagable because her nurses asked me what she most enjoys doing. I had been trying to find out what activities she was doing after becoming concerned about how she spent her time on the ward.

The need for someone like Chrissy to have a structured daily activity programme is so basic I'm baffled there doesn't appear to be anything in place already. The activities she enjoyed were documented when I completed admission forms & where is an OT in all this?

The hospital does have activities but they are in another area, which Chrissy is still too volatile to visit. Surely if you can't take the mountain to Mohammed.....? If she isn't kept occupied Chrissy will play up. Who wouldn't? I know she won't always be settled enough to partake in everything she's offered but a variety of activities should be available on the ward for when she is. It's a constant frustration that I have to keep on & on to get Chrissy's basic needs met.

This weekend I will continue to try & re-engage Chrissy with old activities that she'd lost interest in.

So far so good. We've had a wonderful time - & no meltdowns!

This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe. 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://specialsaturday.org/home/"> http://www.facebook.com/SpecialSaturday




Friday, 5 August 2011

#Specialsaturday post - Meds Changes & getting my Daughter back

Chrissy’s doctors decided that Topiramate would be the first drug to be reviewed as it can worsen behaviour problems. It’s an anti-epilepsy drug, & was introduced several years ago to augment Epilim as Chrissy’s platelet count had dipped again - thought to be the result of her blood/Epilim levels being too high.

Back then, her neurologist said that Topiramate could cause cognitive side effects in some people, which is a particular concern in someone with learning disabilities.
However, seizure control improved & Chrissy’s platelets rose to normal levels with the lower Epilim dose. Side effects of Topiramate were subtle – Chrissy’s word-finding abilities faltered and her vocabulary shrank. The neurologist told us that these side-effects would probably be temporary and, over time, they did seem less obvious. Now though that Topiramate has been reduced it’s clear that the cognitive deficits were bigger than we’d thought.

More recently, since the Topiramate dose has been reduced by more than a third, Chrissy’s nurses and I have noticed that her vocabulary has expanded. she comes out with longer sentences and speaks more fluently. Last week she amazed me by saying ‘violin’ when she spotted a photo in the newspaper of a girl playing the instrument – I didn’t realise she knew what a violin was! On the way home, we got stuck in slow traffic. Chrissy said ‘We can’t move the trolley, can we mummy?’ then roared with laughter along with me as she realised she’d chosen an incongruous word.

This week Chrissy has been much more settled - it could be due to the meds changes or just one of her flukey 'perfect' days. She didn't wake us during the night and the two outbursts she had were short-lived and less intense than usual. (It's worth noting that the second outburst came out of the blue about 30 mins after being given her morning meds) She occupied herself for short spells & was more interested in what was going on around her. In the evening she came up to me & signed sleep, saying 'It's nearly time for Chrissy to go to bed.' This morning she got into bed with me for the best cuddle ever. She wrapped her arm around me & snuggled up to my back, then stayed perfectly still as we dozed off for about 30 mins. She also appears to have lost a bit of weight as her trousers were looser.

It’s early days but things are looking up. Am I finally starting to get my daughter back?

Pics - Chrissy quietly occupying herself (something she hasn't done for some time) & enjoying my new favourite homemade dessert - white chocolate mousse cake.




This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe.

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://specialsaturday.org/home/