Christmas 2012

This photo sums up Christmas Day for Chrissy. I've had a stinking cold for over two weeks now & dreaded Chrissy getting it as I knew she'd find it hard to cope. She can't blow her nose or deal with all the discomfort.

On Saturday she was complaining 'I feel sick' and by Sunday her nose was streaming. She was also lashing out at us randomly. One minute she was sitting quite happily the next taking a swipe at whoever was closest. At one stage she leaned in towards me. I waited expectantly for a kiss but Ian suddenly pulled her back. 'Her teeth were bared - she was going to bite you,' he said. The level and nature of her aggression is out of character & it's so random. Is it a side-effect of Keppra, the new antiepileptic that was introduced last week, or is it because she feels such discomfort from her cold?

On Christmas Day she was very squawky and unsettled - we were walking on eggshells from the off. We were spending the day with my sister, Sarah, & her family in Bovingdon, Herts, an hour-and-a-half's drive away. Ian drove Chrissy and I kept Alex company in her car as she'd planned to go off afterwards to see friends in the area. Halfway there, I got a call from Ian to say Chrissy had been undoing her seat belt & trying to open the car door on the M25. We hadn't seen those risky behaviours in the car for some time.

It didn't bode well.

My sister and her family did a sterling job entertaining us for Christmas dinner, considering that they too, had been ill with colds. Like us, they had considered cancelling but we all made a valiant effort to eat, drink & be merry - as you do!

We'd last joined them there for Christmas in 2010, when Chrissy had spent most of the day in various states of undress & distress on the kitchen floor. Although, two years on, it wasn't that bad, neither was it quite the rosy vision I'd pictured - of Chrissy mingling happily with her cousins & making us laugh with her quirky sayings & antics.....

Instead, Chrissy alternated between sprawling half-comatose on the sofa, moaning & screeching, swearing like a navvy, farting like a trooper, bellowing Diva-like demands, & randomly slapping Ian in the face. She refused to go to bed &, despite looking like death, still managed to stuff her face.

At the end of the day, I was feeling pretty rough myself & longed for my own bed. We were supposed to be staying at Chrissy's nana's nearby but, as I hadn't been drinking, I decided to dose myself & Chrissy up with Paracetamol & drive home.

Chrissy had other ideas.

She lay down in the far corner of the kitchen & refused to budge for a good hour or so. Ian & I tried shameless bribery with such irresistible treats as 'banana-in-a-bag-tied-with-a-bow' but she wasn't having any of it, & screamed 'go away!' whenever we came near. In the end she got up when she was good and ready. Then, because she's been struggling so much with transitions - another behaviour that's recently returned with a vengeance - we had to woo her with every cunning strategy we could muster into the car. There were huge sighs of relief all round when we finally belted her up.

During the journey home she didn't utter a word other than to ask for tissues during a sneezing fit. When we got home she kicked off as soon as we walked in the door. Cushions and shoes were thrown across the kitchen, then eventually Ian got her up to her bedroom & half into her pyjamas, when she called a halt to proceedings & threw herself onto her bed, biting & twisting her hands. After a while, I managed to calm her down enough to persuade her to use the toilet. She got halfway there then stopped & sneezed violently. 'I need a bath mummy,' she declared as a wet patch sprouted in her pyjamas.

When I finally got her to bed she insisted that her pillows be turned over several times & her blanket just so but as soon as I turned the light out & left the room there was silence. She slept soundly through the night and beyond.

I felt sad for Chrissy that my sister's family weren't seeing her at her best again. I also felt uncomfortable about inflicting all this on other people on such a special day. My sister's elderly in-laws were there too & it didn't seem fair on them. Everyone was kind & couldn't do enough to make us welcome but I so wished things could be different, just for that day. We have such high expectations of Christmas don't we?

On the drive up I'd spoken to Alex about her mixed feelings towards Chrissy - all the 'why us' moments we grapple with at times, the anger that we're unable to express because Chrissy can't help it. I love her unconditionally because I'm her mum - I make choices as to when she comes home and how her behaviours are managed. Her siblings are relatively powerless. The impact a disabled child with challenging behaviour has on a family can be corrosive & divisive. Sometimes in trying to hold my family together and do my best for everyone I've felt like I'm clinging to a sinking ship but I think we're still afloat....just!


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

Should Parents Intervene in their Child's Medical Treatment?

Yesterday, with typical hand-clasp posture, hat on indoors and sleeves rolled up

This question ignited fierce debate when Sally Roberts ran away with her 7-year old son to prevent his radiotherapy cancer treatment for a brain tumour.
http://www.dailymail.co.uk/femail/article-2246877/Sally-Roberts--disappeared-Neon-prevent-having-radiotherapy--talks-ITV-Daybreak.html
However, I believe that Sally Roberts deserves sympathy, not condemnation, especially by ill-informed people online who hadn’t read the whole story. She is obviously frightened & has her son's best interest at heart, even if she may be misguided. Having your child’s life under threat is the most terrifying prospect ever and I can see how it could temporarily unbalance your mind.

I completely understand the need for the courts to step in - parents should have a say in their children's treatment but not necessarily the final decision. I’ve often felt like running away with Chrissy to take charge of her treatment but common sense has prevailed and enabled me to take the longer view. Such an impulsive act could lose me my Deputyship, which means that I’m appointed by the courts to make decisions on Chrissy’s behalf as she lacks capacity to manage her own welfare and affairs. Ultimately, this could leave me powerless to protect her interests in future.

Having said that, I have at times taken a very strong stance over Chrissy’s medical treatment, and it has led to clashes. I know my child’s long, complex medical history better than anyone and always fight her corner if I disagree with her doctors.

I know all too well the feelings of helplessness & desperation when you fear that your child's medical treatment could be doing them more harm than good. Primal instincts take over - I made a rash decision on holiday to stop a treatment that I felt was causing ill-effects – Chrissy's antipsychotic. I held my hands up afterwards & acknowledged that it was a step too far but there had been so many bureaucratic delays over starting the process that I felt desperate. Although her clinicians put her back on the antipsychotic when she returned to the assessment and treatment unit, my actions had the desired effect - although I hadn't done it from a conscious desire to manipulate events. A tapered withdrawal process was started immediately.

Since then, Chrissy has gone from strength to strength. Re-reading my blog post from that holiday, I see that I said Chrissy’s mobility had declined with age – although she’s only 28. I was wrong. Now her meds are sorted out her agility has improved. I’m not sure why, as she's still overweight - maybe she felt dizzy or had vertigo? Her life has been transformed by these long-awaited medication changes. The high levels of self-injury and disrobing that effectively imprisoned her have now reduced so significantly that she is able to go out and about again routinely. As I write this, Chrissy is sitting contentedly next to me turning the pages of her Argos catalogue and pointing out different pictures she likes. Her concentration span and focus have improved no end and she can amuse herself quietly for long periods of time now. Her quirky personality and sense of humour has returned. She laughs, dances and sings again, and notices everything that goes on around her. Last time I blogged about how she was settled enough to cope with a four-hour drive up to Staffordshire to visit her grandma for the first time in around four years.

Chrissy still has her ups and downs, and always will, and her epilepsy is a huge concern, but she is now back to her old self. I can’t emphasise enough how changed she was while on inappropriate medication. She rejected activities that she previously enjoyed, was too unsettled and unfocused to engage in anything for any length of time, and her cognitive abilities and vocabulary had shrunk along with her quality of life. She lost her personality. We thought we had lost her.

What on earth was it like for her? The only way she could express her torment was through violent self-injurious behaviour. There were times that she missed out on weekly visits home because she was so agitated and confused that she didn’t know what was going on, and I couldn’t even get her into my car. This was completely out of character - she looks forward to her home visits all week. Her younger sister even questioned whether her life was worth living at one point because she was suffering such a continual high level of distress. Behaviours included ripping her hair out of her head, leaving her partially bald, breaking her heel by banging it on the floor, gouging and biting her skin until it bled, and sustaining a multitude of bruises, swellings and lacerations all over her body and face through punching, pinching and throwing herself around. She also lashed out at other people, which she only does on occasion when extremely distressed.

Now her hair has grown back and her body is rarely marked from self-injury. Her face has lost its haunted look.

Chrissy can’t express how she feels, and Ian and I often speculate on how she must have felt when she was so distressed on inappropriate medication. There’s nothing worse than watching your child suffer and until you are in a situation like Sally Roberts’s you can’t say what you would or wouldn't do.


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

Catching up & Moving on

The last time we'd taken Chrissy to her step-nan's (pictured) was over five years ago. The four-hour journey had been gruelling with a distraught Chrissy repeatedly undoing her seat belt, and screaming, self-injuring and wedging herself into tight spaces.

Last weekend's journey was very different. Apart from the odd burst of repetitive questions, Chrissy settled down in the front seat next to Ian and was content to watch the world go by. When we stopped off at a service station she never once tried to escape to explore the numerous glittering attractions we saw en route to the Ladies. Unheard of!

When we arrived at her nan's Chrissy rushed inside to greet her, grinning from ear to ear. 'I never thought we'd see her like this again,' her nan said, all teary eyed. 'I thought we'd lost her.'

I welled up too as I watched Chrissy taking everything in. She had seen her nan earlier this year when she'd come to stay with us, and she knew who she was. I'm not sure that she recognised the house though. Then her face lit up again as she spotted her sister, Alex, who had come down from Manchester. We hadn't told Chrissy she'd be there or she would have obsessed about it on the way up.



Chrissy is always thrilled to see her siblings. Normally, unless she sees someone regularly she struggles to remember them but she always knows who her younger brother, Jamie, and little sister, Alex, are. The evening went well but Chrissy ate voraciously. We are always trying to distract her and discourage her from overeating but at times, she constantly demands food.

Her happy mood gradually dissipated on Saturday. This often happens after she's been particularly bingey. Something kept coming over her - we never know what - but she suddenly becomes distressed for no discernible reason, and starts screaming, twisting her hands, bending her fingers back and pulling her hair, then she snaps out of it and gives us a beaming smile.

Another mum posted something on a forum that reminded me how difficult things once were for us, and for many other parents of children that have this rare disorder:

''My son's behavioural issues/outbursts/tantrums have escalated so intensely that we don't know what to do anymore. When he gets upset, which is often and for no reason, he is un-calmable. He is incapable of self-soothing, and literally needs me to physically calm him down, rubbing him, deep breathing - sometimes yelling to snap him out of his ritualistic obsessing. It's more than I can take right now and I'm not sure what to do. He woke last night with such emotionally disturbing tantrums and terrors that both my husband and I were in tears......''

Although this desperate mum's description propelled me back to dark times, it also made me realise how far we've come. Chrissy's behaviour will always present challenges to people that look after her but we attribute recent improvements to her revised meds regime. She's still on Prozac but off all antipsychotics. Her behavioural outbursts rarely escalate, her overall mood is much happier, and we can take her out. She continues to be far more alert and engaged in what's going on around her. Her hilarious, stream-of-consciousness observations are back too, giving away all our best-kept secrets! 'Nanny blue jacket, grey hair!' 'You don't like dogs do you mummy?' she declared to my mortification as her nan's adored border collie entered the room. 'Ian farts sometimes,' was another random pearler she uttered loudly and clearly in front of his family. She also threw in a few 'bastard shits' and a couple of 'fucks' for good measure.

The visit was a success, despite Chrissy's changeable mood, and seeing her pleasure at being around loved ones has helped me to re-evaluate what she needs from a supported living placement. I yearn with every fibre of my being to keep her close by where I can protect her and see her more often - but it's not about my needs as a mum - it has to be about what's best for Chrissy. Her psychiatrist and a housing adviser suggested that she'd be better off living in a nearby town. Good public transport links and local amenities would give her more choice of staff and activities, and she wouldn't keep bumping into me while she was out and about. I believe the benefits of living in a community that she's familiar with far outweigh the benefits that are being advocated for her living elsewhere. Chrissy would lead a more fulfilled life if her home was in a familiar place where she has connections to the local community and people that love and care about her. To gain these connections in an unfamiliar place would be a very forced and difficult process for someone that needs 24-hour care and functions at the level of a toddler. Are we in danger of using the 'one size fits all' approach to supported living that is all too often the reason why residential placements break down?

And if it is agreed that Chrissy should live in our village, will government policies dictate otherwise? The current housing and support system is failing many people with a learning disability, who face a lack of housing options due to welfare reforms and budget cuts. Housing benefit caps make rent unaffordable and, although Chrissy can apply for exemption, many private landlords won't accept tenants on benefits, let alone one with a learning disability. Social housing is also inaccessible in some rural areas with specific local connection eligibility criteria. Chrissy wasn't considered for the newly built affordable housing in the village because other applicants that have lived and worked here for years have a stronger local connection. Our only hope is that a suitable, reasonably priced house will come up for sale and a registered landlord will agree to purchase it, and rent it out to Chrissy, possibly in a shared ownership capacity. Struggling to unravel all the supported living red tape makes you wonder if it's delivering on its promise of offering more choice, control and inclusion.

Here, an excellent report by Mencap explores the barriers to successful independent living arrangements, and suggests a national strategy for housing people with a learning disability.
http://www.mencap.org.uk/download-housing-report



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

Supported Living: Cutting through the Confusion

A supported living option we viewed

We decided some time ago that it would suit Chrissy best to live on her own in the community, with round-the-clock support to help her achieve as much independence as possible - but the choices are mind-boggling and rules about eligibility criteria keep changing. We are just starting down this road and embarking on another steep learning curve!

Here's some information I've gleaned so far, which I've simplified for my own benefit. I hope it helps any of you going down the same road....

Renting privately doesn't work for many people with learning disabilities as standard tenancy agreements only cover a 6 or 12 month period and the landlord can evict the tenant at short notice. It's also unaffordable as most rents now exceed 'local housing allowance' - a term used to describe the maximum amount of housing benefit payable. Another complicating factor is that many people with learning disabilities may need a two-bed house for a carer to stay overnight, or mobility aid adaptations that a landlord wouldn't be prepared to make.

Private sector lease management bypasses some of the obstacles to renting privately. Here, the landlord lets his property to a third party 'Not for Profit' or Registered housing provider that only sublets to disabled tenants. Golden Lane offer a service like this and are affiliated to MENCAP, who would provide the care. Under a private sector leasing arrangement like this, Chrissy's housing benefit claim could then be assessed as exempt accommodation or an excluded tenancy - which means her claim would be excluded from the ordinary rules that cap housing benefit.

In most cases, the only way Chrissy could apply for exemption is if the landlord, or someone acting on his behalf, was prepared to offer a certain amount of care, support or supervision. If she wanted to rent from a private landlord, and care and supervision was independently and wholly commissioned by Social Services, Chrissy could not claim exemption. However if she rented from a registered social landlord, who would contribute to her care and support (I was advised that the amount of support varies but ordinarily around two hours a week) this would fit the bill for exempt accommodation and allow more flexibility on the amount of housing benefit paid.

The care, support and supervision rule deters most private landlords but you would think that it could work for parents if they could afford to buy their child a property to rent from them. Unfortunately, laws governing families renting to disabled relatives are complex and restrictive. A way around the care, support and supervision rule is for Chrissy to rent from a registered housing association. Because the housing association is already regulated by central government and receiving government subsidies it isn't obliged to provide the care and support and it could come from another source. If the housing association don't have anything available they can do a lease deal or buy something outright for Chrissy on the understanding that she would rent it from them.

Our final option, and the one that interests us most, is shared ownership. Chrissy will be on the high rate of DLA for mobility & care again when she leaves hospital, which means she should be eligible to get a small mortgage to be paid for from her benefits. The top-up amount needed to buy something suitable would be paid for by a registered housing association that runs such schemes. They would do all the repairs and maintenance, and it offers Chrissy the most security as she would be a leaseholder. The main drawback for us is that this route is more lengthy and complicated than most, and Chrissy is due to leave the assessment and treatment unit in the next two months.

If we do opt for shared ownership we may have to look at what could be done to support Chrissy here at home with us during the interim period between her discharge and finding a suitable place to live.

Some time in the future we may move to a different area & buy two houses close together with Chrissy in mind. Where we live now is in the middle of nowhere and I've abandoned the idea of her living in the same village. In order to make the most of her independence she will need to be near a town with access to a wide range of amenities and good local transport routes to offer a better choice of staff.

So far we have been offered one option - our local PCT have a vacant bungalow adjacent to two other homes that are singly occupied by women with learning disabilities. They would all be cared for by the same team. The downside of a commissioner providing both housing and care is that the roles would be harder to split if there was a problem say, the care provision failed but the accommodation was fine. This option looks good on the surface, and the bungalow is in a nice area, but I'm uneasy about putting Chrissy completely in the PCT's hands because they've let her down repeatedly in the past. It's also further away from her family home than is preferable.

Another maze to navigate and a big responsibility resting on our shoulders. We need to get it right this time to give Chrissy the life she deserves.


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

Visiting the Minister for Care in Westminster

Last week, MENCAP and the Challenging Behaviour Foundation invited me and other relatives whose children & siblings have been failed by support services to Westminster to tell Norman Lamb, Minister for Care Services, our stories. It was a great honour to be asked, and it felt good to be heard by someone with the power to change things. I felt a great sense of solidarity with the other relatives and their harrowing testimonies hardened my resolve to ensure the failings that had left Chrissy in so much torment are thoroughly investigated.

It's a relief to know that I’m not alone in feeling angry at the struggles we've faced to get Chrissy happy and settled again. I’m one of the lucky ones - Chrissy hasn't been abused by her carers and I’ve finally got my lovely daughter back. Other relatives told similar encouraging stories that show what can be achieved with the right support. Our battles have been hard-won. Learning disability services had given up on our loved ones and left us not knowing where to turn. As we spoke among ourselves, I learned that I wasn't alone in feeling guilty, as if I had been the one to let my child down.

Norman Lamb stayed beyond the time that had been agreed and said that hearing our stories was as shocking as watching the original Panorama programme about Winterbourne View. We must continue to speak out for the sake of those that have no one to speak out for them. I hope the meeting with Norman Lamb will make a difference, he'll do all he can to ensure lessons are learned, and that adults with learning disabilities are treated with as much dignity and respect as the rest of us.

http://www.mencap.org.uk/news/article/minister-wants-end-places-winterbourne-view





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

Assessment and treatment units

A wonderful weekend with Chrissy. Her sister, Alex, and her nana were staying, & we made a Halloween pumpkin. Chrissy called it a witch! Her nana hadn't seen Chrissy for a few weeks and was amazed at the transformation in her now all the meds changes have been done.

But would this have taken place if Chrissy hadn't gone into an assessment and treatment unit? These units are getting terrible press with the latest Panorama Winterbourne View investigation on TV tonight. Politicians and learning disability charities are calling for these 'dumping grounds' to be decommissioned without delay - but don't we need robust alternatives in place first? Anyone who's read my previous posts will know that we've had our issues with Chrissy's ATU and I'm sure there are lots of awful ones like Winterbourne View - but you can't lump them all together. The truth is, it was her only lifeline. Community-based services failed her time and time again. People that present with the most challenging behaviours usually have complex needs that can't always be met in the community. Support workers need better pay & training, and don't get me started on communication. Many of Chrissy's support workers in the past have barely been able to speak English. The best learning disability psychiatrist Chrissy has ever had is the one at the ATU. It pains me to admit it, as we haven't always seen eye to eye on every aspect of Chrissy's treatment, but she's pretty impressive! Other psychiatrists that Chrissy's had in the community have been, at best, out of their depth &, at worst, haven't had her best interests at heart. In a nutshell, a vulnerable adult with challenging behaviour & complex needs can be extremely difficult to manage in the community. If community learning disability teams were up to the job, why has it taken SEVEN YEARS from the start of her deterioration for Chrissy to recover & be herself again?

We learned at last week's care planning meeting that Chrissy is due to be discharged from the ATU in the next couple of months. I'm very nervous about her leaving the unit's health-focused environment. Her epilepsy is still unstable but I'm hoping it's just a blip while the last of her previous meds leave her system - she can react strongly & paradoxically to even the smallest meds change.

To end on a very upbeat note - at the meeting, all Chrissy's therapists expressed their delight at her progress since the last lot of meds changes. They reported marked improvements in her cognitive skills, attention span & willingness to engage with others. She thoroughly enjoys going out shopping and on woodland walks and it's hard to remember the last time she disrobed during an outburst. These recent, very marked, improvements strengthen our case that she needed meds changes, not simply changes in her environment, to retrieve her quality of life. How on earth could the meds changes have been done in the community with what it has to offer currently? Badly run ATUs are the tip of the iceberg. Closing them down without suitable tried & tested alternatives in place is not the answer.


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

My Life with Autism: The Supermarket - by Debbie Pollard

Debbie, mum of Matthew, aged 10, kindly agreed to guest post for me this week.


Matthew

When those of us who have autism in our families venture outside it can feel like walking through a minefield. We are only too aware of the danger. We just don't know exactly what will cause the explosion. One wrong step: BOOM!

The constant scrutiny is incidental.

Some of us feel like we are on exhibition every time we leave the house. Always on the brink of becoming some sort of grim public entertainment. There's always someone further down the food chain to feel superior to. Who needs Jeremy Kyle?

Matthew and I head for the front. Today we will enter the hostile territory of the supermarket. A logistical failure has left us without vital supplies. We are lucky enough to get a space in the relative safety of a disabled bay – our journey into the shop should present minimal risk.

Already we are attracting some interest. Well, I have parked in a disabled space and both of us can clearly walk.

Tut-tut. Blue badge nothing. She's no right parking there.

Eyes down. Focus on Matthew. I'm not ready for a staring match and I'm saving my energy for when I most need it.

In we go. I grab a basket as we pass. I don't need a trolley. We won't be buying much and, besides, I can't push a trolley and keep hold of Matthew at the same time. I know he will run, scream or lie down. But when? Where? Why? Well, I'll know when it happens.

We're in. Basket in my left hand, Matthews hand in my right. He's jumping up and down, making noises. His hood is up, providing a little sensory protection.

Why's she letting him do that?

“TOILET”.

It's the three minute warning. Matthew may need the toilet. It may just be a tactic to get away from this environment he has found himself in. This environment that I have brought him into. Either way, the toilet is the next place we are headed.

The disabled toilet is occupied.

“TOILET! TOILET!! TOILET!!!”

Heads whip round.

What a racket. Why doesn't she shush him?

Can a head really turn that fast without doing it's owner an injury? If rubbernecking ever becomes an Olympic sport, Team GB is a shoe-in for gold. Matthew is becoming increasingly agitated. How did it get so hot in here? Sweat trickles down the back of my neck. Ladies it is. We're going in, and it might not be pretty.

Horrible blueish lights in here. To stop people injecting drugs by making their veins hard to see? Energy saving? Just because someone liked them? It doesn't really matter.

Now Matthew's hands are clamped to his ears.

What's that laddie doing? He's too big: should be in the gents.

“DRYER”

“No, it's OK, no-one is using the dryer, on we go”

“DRYER”

“No, it's OK......”

Hand dryers are scary. An assault on the senses. The air pressure changes. Any bits of fluff or paper on the floor are flung around by the turbulence. Lets just hope we can get through this without one going off.

We're in, we are out. Hands washed.

“No, it's OK, Matthew, I'm not going to use the dryer”

He takes no chances though. He's been here before. Experience makes him cautious. Hands over ears, one arm linked through mine, we make our way back into the shop. I'm bent over sideways. Do we look strange? I'm sure we do. I know I'm being watched but I've got work to do.

“Good boy, Matthew, it's OK, we're back in the shop, dryer is gone”

Eh? Why doesn't she just make him walk properly?

Shelves and shelves of things to eat and play with. Trolleys and people coming from every direction. Giant freezers hum. A hundred beeps per minute from the scanners, all slightly out of sync. Chatter. Children crying. Dishes clattering and the faintly unpleasant odour of everything with chips being prepared in the café.

We head deep into the shop. It was cold near the freezers but now it's so hot. Milk. Far from the doors. Deeper and deeper. Avoid the sweetie aisle for now. To throw us, the supermarket changes it's layout now and then. I'm sharp enough to take avoiding action when necessary. Almost there. We're here. Basket on the floor. Matthew by the hand. One, two cartons into the basket. Matthew has held up well so far. Time for him to choose a treat.

I relax a little. Rookie error. Matthew slips his hand from mine and he's off. He has carried out his own visual sweep of his surroundings and spotted something I've missed. He's on it like heat-seeking missile. Packets of sweets at the end of an aisle. Of course. A well known tactic of the supermarket. How could I have forgotten? I thought we were relatively safe.

Some people just can't control their children.

Snap decision. Drop the basket and run? Just run? I choose the latter – damage limitation is all I can do now and keeping hold of the goods will make our escape a little quicker. He's at the sweets. Two packets ripped from their hooks.

Check her running in those boots

Trainers! Kit error. Still, I've caught up with Matthew. To be more accurate he has ripped open a packet of sweets and has stopped to eat them. That packet will be written off. I'll take the empty wrapper to be scanned. There's a chance for the other packet though.

“Matthew, give Mum the sweets”

“Sorry” (a word Matthew uses when anxious or unwilling to co-operate)
I only fight battles that I might win. We could carry on this wee stand off all morning. Or at least until the sweets are all gone. It could escalate until Matthew is lying on the floor screaming and I am on the verge of tears. Nothing can be achieved here.

I don't believe it – she's just letting him keep the sweets. No wonder he's so badly behaved!

Plan A was for Matthew to chose a treat. Well he has chosen it. Plan B. Quickly to the nearest or quietest check out. Avoid the ones with eye-level sweets to tempt Matthew. Damn ingenious supermarket. But at least in this one there are actually some check-outs that are sweet-free. Others are more ruthless and we're not ready to tackle those yet.

Empty check-out. I'm so, so glad. I can see the exit. Milk on the conveyor, Matthew's hand still in mine. He'll not try to give me he slip again – he knows I'm back on full alert. And, anyway, he is contentedly munching his sweets.

“Are you enjoying them sweets? Not talking son?”

Ignorant. And look at her. A smile would crack her face.

“Enjoy the rest of your day!”

“Thank you. You too.”

Got the milk. Got Matthew by the hand. The doors are getting closer. Fresh air, I can almost smell it. Out in the open. Daylight. I can see the car. Safely inside. Engine on. And breathe!

Until next time.


Debbie & Matthew

Debbie wrote this post for Act Now For Autism, formerly known as ACT NOW (Autism Campaigners Together). Act Now For Autism http://autismcampaigners.blogspot.co.uk/ is a core group of people passionate about the future and well-being of children and adults with an Autistic Spectrum Disorder in the UK. Act Now For Autism are campaigning against aspects of Welfare Reform, specifically face-to-face assessments and the Work Programme. They are ardently campaigning for advocacy to be offered to anyone who has to attend a benefit assessment.


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

Living at Home again: An Impossible Dream?

West Meon Church

A magical morning with Chrissy. We walked to the village shop for a newspaper and Maltesers. Chrissy behaved perfectly so we stopped for a photo-call in the churchyard. Later as we looked through the pictures on her laptop, Chrissy's face was wreathed in smiles as I showed her how to move the cursors around. She giggled as she made herself disappear then re-appear on the screen – now you see me, now you don’t!


Having it all - enjoying lunch, Cbeebies and today's photos!

My last post was about taking a stand. I can reveal now that it was over Chrissy's Quetiapine - I was so desperate for her to come off it that I stopped it for three days on holiday. Then I admitted what I'd done to the ATU and begged them not to re-introduce it as we had seen improvements in Chrissy's behaviour and mood. It was a rash decision on my part and I've explained my rationale on here before. I had no concerns about the risks as we had seen similar improvements when the ATU had 'forgotten' to give Chrissy half the prescribed dose for a fortnight. For reasons I completely understand her doctors reinstated the drug but immediately began to 'review it downwards.’ (They need to monitor effects.) Chrissy is now on only 50mg once a day. So far so good, although her ward nurse told me that Chrissy had been slightly more agitated at meal-times lately, bending her fingers back and asking repetitive questions about food. However, her nurses have been able to distract her.

As the weekend's gone on, Chrissy's had her moments but she's been relatively easy to pacify and fully engaged in everything we've been doing. As a general reflection of her improved mood over recent weeks, her hair is growing back and looking more lustrous (she isn't pulling it out), and her body is no longer marked by self-injury.

Now Chrissy's behaviour has settled down, I’m feeling more torn than ever about her future. We’re no closer to finding a way to set up the bricks and mortar part of the single service unit option (where Chrissy lives on her own with 24-hour support). You've seen from previous posts how some issues that crop up in residential care haunt me. Now I’m wondering again if there's any way we could make it work for Chrissy to live with us permanently.

Ian doesn't believe that living with us would be the best thing for Chrissy. He fears we could go back to square one if her condition were to deteriorate again. As there's every chance, given her history, that this could happen, anything that's put in place would need to be watertight to minimise the risks of further traumatic moves. It may sound selfish but we're in our fifties and enjoying more freedom now that our children have grown up. It would serve no one if we were to go backwards to a time when Chrissy's outbursts ruled our lives and I felt like a prisoner in my own home with her too unsettled to take out or leave with a care-worker. We would be setting ourselves up to fail if we were propelled back into the fray of pointless crisis meetings and battles to get effective medical treatment and support. So there would need to be strong contingency plans in place, for example, an immediate return to the ATU for further assessment and, if necessary, treatment - and how enforceable would those plans be? I’ve lost all faith in Chrissy's commissioners, with their endless broken promises and buck-passing.

Another question is whether we could devote the time, energy and patience to manage Chrissy's needs as they should be managed and, the biggie that terrifies all parents of disabled children - what will happen when we're gone? As one of the provisions for her future care, shouldn't we ensure that she is settled somewhere that doesn't depend on us being around?

Anyway, it’s all hypothetical right now and I may have blogged myself out of it! Ian’s far more pragmatic than me – I follow my heart but as my book title says sometimes ‘love isn’t enough.’ It’s early days and I'm jumping the gun – a date for discharge from the ATU has yet to be agreed. Chrissy's epilepsy is still not as controlled as her doctors would like it to be and if another anti-epileptic drug is trialled she will need to stay in the ATU for further monitoring as she's had such nasty reactions to the last two.

At the next care planning meeting on 22 October I propose that we ask commissioners to suggest a support package template if having Chrissy back home is a route that Ian and I could agree to explore.....

Since I published this post I was given more food for thought when another mum of a child with learning disabilities wrote a piece for the Daily Mail that included her take on the residential care dilemma. She questions whether it would be cruel to leave her daughter unprepared and unprotected when her parents die: http://www.dailymail.co.uk/femail/article-2219305/The-daughter-taught-meaning--love-Lady-Astor-pays-moving-tribute-autistic-little-girl.html


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

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

Chemically coshed?

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

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

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

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

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

They’d run out.

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

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



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



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

Chrissy smacked him in the face!

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

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

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



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



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

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

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

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


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

Battle Weary but Making Progress

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

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

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

Battles can start early on when you have a child with a learning disability, particularly if the cause is unknown or the child has complex needs. My book ‘Bringing Up a Challenging Child at Home’ http://www.jkp.com/catalogue/book/9781853028748 describes my attempts to get someone to take my concerns seriously. No one ever sat me down, and took time to listen and explain anything. I was always asking ‘what’s wrong with my child?’ I felt like I was being fobbed off and became increasingly frustrated.

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

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

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

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

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

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

In my previous post Groundhog Day http://jgregorysharingsstories.blogspot.co.uk/2011/10/special-saturday-post-groundhog-day.html I describe how I feel like I'm continually revisiting the same issues. For example, last year's admissions and apologies from the NHS trust about making a ‘dog’s dinner’ of Chrissy’s assessments for healthcare funding, and their promises to rectify the situation with properly conducted assessments and thorough investigations have come to nothing. I"ve lost count of how many times my hopes have been raised like this. Another parent described it as like kicking a football around a triangle. You are in the centre of the triangle created by professional services and your issue just gets kicked around from corner to corner as the professionals that you go to for support pass the buck and blame each other. After going down all these frustrating routes of trying to get someone to take responsibility and action you are left back where you started to kick the football from.

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


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

Another Outing & Feeling Torn...

Out for Sunday dinner with sister & cousins

Third proper outing in the past month or so. At first we ummed and ahed about whether to take Chrissy with us as she woke up on Sunday in such an unsettled mood. Feeling torn is part of being Chrissy's mum. It's hard to know what to do for the best because she is so unpredictable.

The day got off to a difficult start. Chrissy was shouty & repetitive as I was getting her dressed, she then blundered into Alex's room and woke her up. Result one very stroppy Alex, who'd been up until 4am lesson planning for her new teaching job. 'If you take Chrissy I'm not going,' she announced.

'No, we'll drop her back.' I was hedging my bets. I planned to make up my mind once we got nearer the restaurant. Chrissy's ATU was very close by so we could do a detour if necessary.

On the journey there, Chrissy obsessed non-stop about food. We tried all the tricks, getting her to repeat our answers back: 'What did we say Chrissy?' Signing zip it up & 'yes' instead of giving verbal feedback & so on. Nothing worked but optimism prevailed. We owe it to Chrissy to keep taking chances on her and I banish memories of previous disasters. Onwards and upwards!

Our table was perfectly positioned in its own room. It wasn't completely private - people could walk through it to the garden - but it was a handy escape route for us too! I prayed that sausages, Chrissy's favourite, would be on the menu & that somehow we could get her to wait without kicking off. Ian was a star - he drew sausages, wrote s-a-u-s-a-g-e-s & got her to copy it, & asked Chrissy what she would be eating with her sausages. 'Is it tomato sauce?' 'Is it mashed potatoes and gravy?' A diet coke with two straws and no ice was duly served to Chrissy. She eyed it warily because it wasn't in her usual bottle or cup, and we breathed a sigh of relief when she accepted it, topped up with water, just as she always likes it.

During the wait for food, Chrissy grew increasingly curious about what was going on around her. She introduced herself to her reflection in a mirror on the wall above the table, then, clapping, flapping and talking at the top of her voice, she made her way, like a galleon in full sail, towards the main dining area. There was no stopping her so I grabbed her hand and managed to steer her past the bar and other dinners to the loo, then back again to her seat. People politely pretended not to stare and I politely pretended not to notice.

Ian then managed to divert Chrissy outside and I left him to it. Sometimes Chrissy can be overwhelmed by two people talking to her and directing her. After 10 minutes I went to check everything was ok and found Ian patiently pushing her on a very sturdy swing in the garden. The expression on her face was beatific. She was the most relaxed I'd seen her all day. Another item on the 'shopping list' for Chrissy's new home.



After dinner Chrissy nagged obsessively about pudding. After pudding it was 'I want sandwiches' but we got through it all without mishap and, although Chrissy's mood wasn't as good as it can be, she enjoyed her meal out. As Alex says 'it's like she was about to kick off but somehow she never did.'

Then came the part that tugged at my heartstrings. We took her back to the ATU and her face crumpled. 'I want to come home,' she sobbed. Tasha, a carer she really likes sat with her for a while & managed to distract her with a picture book. Then Chrissy called out 'bye!' to us quite happily.

I was told that she had been crying to come home in the week too. This is another effect of Chrissy waking up after medication changes. She knows all too well what she wants and she's telling us loud and clear. I can't put into words how torn & guilty I feel over this & I wouldn't mind betting that many other mums in my situation feel the same. I rationalise it by telling myself that she's an adult and most people her age live independently anyway but she's like a toddler - so terribly vulnerable; Ian reminds me that one day we'll no longer be around, so she needs to get used to living away from home; I remember how hard it was to let go when I first had to accept that we could no longer cope. It gets easier but the ache never goes away. You just have to find a way to live with it.


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

To test or not to test for genetic abnormalities?

Chat with another parent whose child has the micro-deletion
Hi ‎S - Very brave of you to say this. I've been feeling really low about Chrissy's situation recently. The flawed bureaucratic processes we've continually come up against have brought me to my knees & it's hard to see any light on that front. Like Clementine, Chrissy's life has been severely affected & she has suffered far too much, & it's like ripples on a pond affecting the wider family. Her amazing personality means that we feel blessed to have her, but what's life like for Chrissy? I'm terrified too of what will happen to her if she outlives us but equally terrified of losing her too soon because of her condition. Then if you look at the wider picture, & all the unaffected or very mildly affected parents/grandparents etc you see that this deletion is just part of life's genetic lottery. None of us come into the world with guarantees.

Dear MP.....

Please read Mencap and the Challenging Behaviour Foundation’s ‘Out of sight’ campaign report which tells the stories of James, Joe, Emmanuel, Victoria & my daughter, Chrissy http://www.mencap.org.uk/sites/default/files/documents/Out%20of%20sight%20report%20Easy%20read.pdf In the report, you hear from their families, about the terrible neglect and abuse their loved ones have experienced. Please email your MP today and ask them to take action to make sure this never happens again http://bit.ly/NVtsBS

One of the worst cases in the report is that of 38-year-old James, who has spent five years at an assessment and treatment unit located 150 miles from his home. In this time, James has experienced sexual and physical abuse by other patients, numerous unexplained injuries, neglect by staff and has had multiple medical complaints left untreated. James’ parents have been desperately fighting to have their son moved to a service nearer to home.

Since the BBC’s ‘Panorama’ exposed abuse at the Winterbourne View assessment and treatment centre, last year, Mencap and the Challenging Behaviour Foundation have received 260 reports from families about abuse and neglect of people with a learning disability in similar services.

There are currently hundreds of people with a learning disability in assessment and treatment units like Winterbourne View, and other similar services. Many of these are located hundreds of miles from people’s homes, where they are at particular risk of neglect and abuse. We're lucky, we fought tooth and nail to get Chrissy placed in an assessment and treatment unit only a 30 minute drive from our home, and she visits us every weekend - but until recently service fell far short of expectations. Worse still, commissioners failed to follow up on her progress, ignored communications and did not attend care planning meetings. I've had to take numerous steps force them to take responsibility for meeting Chrissy's complex healthcare needs. A significant contributing factor is a four-year Ordinary Residence funding dispute between the NHS and local authority.

While these units were developed to provide short-stay, specialist treatment for people with a learning disability who have experienced a crisis, in reality, over half (53%) of patients remain for two years or more and nearly a third (31%) stay for more than five years. Assessment and treatment units have been described as “dumping grounds” by learning disability experts. Chrissy has been at her unit for over two-and-a-half years and is nearing the end of her treatment but, despite her complex needs and the Challenging Behaviour Foundation's assertion that it can take 12-18 months to find places in the community for someone like Chrissy, commissioners refuse to start planning her discharge and have repeatedly broken promises. I have had to take on care management responsibility and drive every aspect of Chrissy's care while the NHS commissioners who pay for her treatment turned their backs on her.

Since a change in leadership the hospital are finally doing everything I wanted them to do for Chrissy in the first place, so I DO see the need for assessment and treatment units in crisis situations like the one Chrissy was in but they need to be as Mencap and the Challenging Behaviour Foundation describe, and subject to closer scrutiny by outside services, especially responsible commissioners. The pathways to transition patients into these units need to be far better managed too. After two traumatic residential placement breakdowns, we had to force the NHS trust's hand to get Chrissy into a local unit - they wanted to send her 65 miles away to a unit near Gatwick that had a bed-blocking problem and could give no definite admission dates. They are currently funding Chrissy's place at the assessment and treatment unit on a 'without prejudice' basis.

The government must urgently address these systemic failings in the care of people with a learning disability. Please contact the Secretary of State for Health and urge him to ensure that the government’s final report on Winterbourne View commits to a strong action plan to close large, institutional-style services and develop appropriate local assessment & treatment services for people with a learning disability. What has happened to the people at Winterbourne View, and those in the ‘Out of sight’ report, must not happen to anyone else.

Please also attend an important debate secured by Tom Clarke MP on this issue. It is an end of day adjournment debate on the abuse of people with a learning disability, on Monday 3 September.

Yours sincerely.....




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

Quality of Life and Medication

Enjoying family time in our back garden

Over the past few years medications that haven't suited Chrissy have caused her untold suffering. From general anaesthetics and pre-meds for ops in early childhood to antipsychotics, reactions have ranged from screaming & thrashing about as if acid is burning her insides to status epilepticus and a life-threatening blood disorder. I've no idea why Chrissy is so sensitive & has such strange reactions but trying her on new medications scares me witless. It's unbearable to see the torment she goes through but a relief that while she's in hospital they can respond quickly to remove medications that have caused bad reactions. Out in community-based settings, this did not happen.

When a supplementary antiepileptic caused mayhem in Chrissy's brain earlier this year, I wondered if she would ever be stable again. It was supposed to do the opposite - it's prescribed for anxiety as well as seizure control. So when her doctors started suggesting other adjunctive antiepileptics my hackles went up. Chrissy has been on Epilim alone since the end of April, and has got her sparkle back. She has been interested in her surroundings, engaging in meaningful conversations, able to focus on activities, and a delight to be around. Introducing a new drug would jeopardise her newfound eqilibrium. Was it absolutely necessary?

Chrissy's seizure freqency has increased slightly, and they're mainly complex partials that become generalised while she's in bed at night. They're all self-limiting and last for only a minute or two.

My questions were: Are they likely to damage her brain? What's their impact on her overall quality of life?

We saw the neurologist on Thursday, No, the type of seizures that Chrissy has do not cause brain damage. Hospital staff and I felt that Chrissy's life is briefly interrupted by seizures but not ruled by them. She will sleep for a couple of hours after more major seizures, then will wake up as if nothing has happened. One of Chrissy's nurses asked about the risk of SUDEP (sudden unexplained death in epilepsy) ttp://www.epilepsysociety.org.uk/NewGetInvolved/Awarenessraising/EpilepsyReview/SUDEPresearch. Her neurologist said that no one knows exactly why SUDEP happens but it's more common among people with poorly controlled epilepsy, who have seizures at night during sleep and whose seizures start from a focus then become generalised. So Chrissy does have several risk factors but close monitoring is key. She is in the next bedroom to ours at home and we're attuned to the slightest change in the sound of her breathing, and hospital staff check her every 15 minutes. She also has a baby monitor. I try not to think about SUDEP - everything that can be done is being done and what's more important for Chrissy - optimising seizure control with all it entails or quality of life?

Chrissy came along to the appointment and it was clear to us all that she was on top form. The highlight of the day came as we went to leave the hospital. She did a body-swerve towards WH Smiths, made a bee-line for the sweets then homed in on the Maltesers. There she spent ages bent double over the shelves with her bum in the air trying to work out the difference between two packs - one was slightly bigger than the other & she wasn't going anywhere until she'd made the right choice! The rapture on her face as she tucked the larger of the two packs inside her lunchbox was a joy to see. I felt elated all day as I reflected on how far she'd come.

'Don't count your chickens' Ian warned me later....

I know there are likely to be more blips but for now I'm enjoying the feeling that we've got Chrissy back. If the risks posed by her seizures increase I will, of course, be open-minded about the need for adjunctive treatment but we've all agreed for now that watchful waiting is the best approach.



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

Enjoying life: Chrissy in 2003 with her sister Alex

After years of suffering, your child is given a 'wonder drug' that transforms her life - then it is snatched away because it could kill her. Over the next seven years different alternatives are tried but nothing else helps. What do you do? Do you try it again, under close medical supervision and make the most of the quality time it gives your child - or do you dismiss it as too risky?

This is what happened to Chrissy with Naltrexone.

In previous posts I've spoken in more detail about how low-dose Naltrexone stopped Chrissy's self-injurious outbursts, and why it was discontinued. The following information from Autism Research Institute explains the physiology. It's important to not that when self-injury is associated with a biochemical abnormality, there may be little or no relationship between the person's physical/social environment and self-injury. Thus, the behaviour may occur in various settings and around different people but may occur less frequently during situations in which the person's behaviour is incompatible with self-injury, such as eating, playing, and working on a task.

Here, I'm more interested in exploring our dilemma over Naltrexone, which has divided opinion between some of Chrissy's medical specialists and I. Those that have done their research and/or seen its effects consider it to be a very safe drug but, some of them are wary prescribing it off-label. Naltrexone isn't a drug that is closely linked to thrombocytopenia but Chrissy has a history of rare and paradoxical side-effects from medication.

She was on three different drugs when thrombocytopenia was diagnosed, one of which was Epilim, an antiepileptic drug that she's been on since childhood that has proved the most effective at controlling her seizures with minimal side-effects. Naltrexone and Prozac were introduced together during drug trials when Chrissy was 14 in an attempt to quell unexplained self-injurious outbursts that were escalating in frequency and severity. The combination of the two was unusual and I don't know where the suggestion originated. Seven years of behavioural stability followed during which Chrissy was able to go on holiday abroad and enjoy activities in the community. Then when she was 21 Naltrexone and Prozac were withdrawn together because by the time her thrombocytopenia was detected it was a medical emergency. Her platelets reverted to normal levels within 48 hours so her doctors concluded that the thrombocytopenia was caused by a combination of Prozac and Naltrexone. I have

Epilim was continued but the dose was halved about a year later when Chrissy's platelets dropped slightly again. This shows that at higher doses Epilim alone affected platelet levels.

Three years later Prozac was re-introduced, albeit at half the previous dose. There was an improvement - not life-changing but enough to work out that if Chrissy wasn't taking it things would be even worse. There have been no further concerns over her blood count, which is checked routinely.

So Chrissy is now on two of the three drugs, albeit at lower doses, that she was taking during her thrombocytopenia episode. Do we assume then that Naltrexone alone was the culprit or was it a cumulative effect of all three drugs?

The quality of life question came up last week. Framing it was the fact that Chrissy had enjoyed seven good years on Naltrexone. Now her blood counts are fine do we risk re-introducing it under close medical supervision to see if she can enjoy another long period of relative stability? Of course there are finer points to consider, ie, could Prozac be swapped with an alternative anti-depressant; is there an alternative opiate-blocking treatment to Naltrexone? Both these options would mean more drug trials......


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

After Hospital, What Next?

Last Monday's discharge planning meeting left my head all over the place. It felt like we were covering the same old ground, and coming up against the same brick walls.

A big stumbling block to giving Chrissy effective community-based support is that she isn't seen as a resident in the county where she'll be living. The NHS commissioner told us that this could close doors to a number of services run by the local authority, and observed: 'Chrissy could be disadvantaged simply because a social worker didn't fill in the right forms 9 years ago.'

The Local Government Ombudsman is still looking into the question of 'Ordinary Residence' as part of his investigation into the long-running funding dispute between the NHS & local authority over Chrissy's care.

Chrissy's plight and what Ordinary Residence means is summed up by Graham Faulkner, Chief Executive, Epilepsy Society, in a link on my post last year: http://jgregorysharingsstories.blogspot.co.uk/2011/09/specialsaturday-post-my-special-needs.html

Another big question mark hangs over the medical support that Chrissy will receive in the community. The learning disability team that worked with her before her eviction from a care home in 2009 covers a wide area in the community too, which further restricts our options. The team focused mainly on environmental causes for Chrissy's challenging behaviours & cited unsuitable residential placements with carers lacking the necessary skills to support Chrissy effectively. This led to care staff that worked with Chrissy saying they felt unsupported by the team when they asked for help, and worst still their inability to manage Chrissy's more extreme behaviours was frequently cited as their cause.

Ian & I believe the learning disability team's view was over-simplistic and downplayed a crucial factor - medication. The most marked long-term correlations in the intensity and nature of Chrissy's challenging behaviours have occurred with medication changes. So medication and environment must be optimised to help Chrissy achieve stability, and this has proved easier said than done in the two community-based residential services that she's lived in since reaching adulthood. Having said that, Chrissy has had some wonderfully open-minded medical professionals working with her over the years so we know they're out there!

Suggestions were made around the table about different types of housing options but it all came down to support that Chrissy might need in the community if she were to continue to have ‘blips,’ as her psychiatrist called them. Chrissy may be relatively stable when she leaves hospital but her mental state and health will always be precarious. There need to be robust contingencies in place or we could end up back where we started with support systems collapsing.

In September there will be another Care Planning Meeting. By then I expect progress to be be made to resolve the Ordinary Residence issue and a commitment, either jointly or singly, from commissioners towards making concrete plans for Chrissy's future care. This limbo situation can't go on...


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

Alex: A Sibling's Story

So, for a long while, my mum (a weekly blogger about my sister Chrissy) has wanted me to write a post about what it’s like to be a sibling of someone with autism (and a rare chromosome disorder, learning disabilities, epilepsy and challenging behaviour). As the Special Saturday theme this week is ‘siblings’, she managed to bribe me into writing about my sister Chrissy in exchange for doing my washing (thanks mum!). I can’t quite put my finger on why... but I’ve been very reluctant to write this blog. I guess thinking about my childhood, and even adulthood, with Chrissy would mean me delving into my deepest, and sometimes darkest, emotions and memories. We’ve had (and still have) some extremely difficult times, but we can’t change the past. And we certainly can’t change Chrissy!

I spoke to a researcher/journalist recently who wanted to explore what it’s like to grow up with a sibling with special needs. However, the woman had no interest in all the positive things I was excited to talk about. She was probing to explore the difficulties I experienced as a young child, which got me very frustrated. Yes, I shamefully admit there have been times when Chrissy is having screaming and violent tantrums when I have thought quite honestly and bluntly “I hate you” and even “life would be far less stressful without you...” (but it would probably also be very boring!). I find it painful to remember incidents that prompted those feelings, but what makes me feel the most guilt is that Chrissy can't help the destruction she causes… She was just born that way. I understand now that I am older that this anger in such crisis situations is natural, even between ‘normal’ (I dislike that word) siblings. I hope so anyway! So what I’m trying to say is that I really don’t like to dwell on how having a sister with autism has affected me negatively. This is the life we have, and it is very unhealthy to live one’s life thinking “what if...” If we did this, we wouldn’t be able to appreciate the best of Chrissy.

I find it much more productive and rewarding to focus on the many good things that have come out of having Chrissy as my sister. Her unique way at looking at the world is fascinating, endearing and she can be so hilarious. I have many a funny story to tell of experiences with Chrissy! Most importantly, she is to thank for my most deeply-held values. She has made me grateful of the advantages I have in life, rather than complain “why me?” She has made me learn to appreciate life, make the most of everything I do, and to never waste an opportunity, because I am lucky to have these opportunities available to me. Even just the small things, like going out with my friends... Last week Chrissy was waving at me through the window from inside the house as I left to go on a night out. I got a lump in my throat thinking “poor Chrissy”, practically a prisoner in her own home. I’ve grown up seeing that people with learning disabilities should have equal value to us all, but unfortunately often do not. I will never forget the disappointment and upset (and embarrassment and shame) I sometimes felt as a child as a result of peoples' ignorant and judgmental comments when we have been in the community with Chrissy. These feelings turned to anger when I was a teenager and, luckily, acceptance now I am an adult. But it shouldn't be this way. Why should she be locked away and not allowed to participate in society just because she is ‘different’ and may not fit with 'societal norms'?! My experiences of growing up with a special needs sibling have taught me tolerance and to never judge other people and families, especially parents, as you can never truly understand what someone else has been (or is going) through.

What is most significant for me personally is that due to Chrissy's vulnerabilities, I feel so incredibly passionate about helping others and improving the lives of those who may be less fortunate than myself. I have developed this deep empathy for others with difficulties that has led me to my current career as an Assistant Educational Psychologist for the National Autistic Society. Having a sister with autism has inspired me to do; my degree in Psychology, a range of voluntary work, work as an Applied Behaviour Analysis Tutor and Special Needs Teacher for young people with autism, my current role and I am hoping to get a place on the doctorate course in Educational Psychology this year. I feel lucky to work in a profession I am so emotionally invested in.

Finally, I recently found a letter from one of my closest friends and old next door neighbour, written to me when I was moving away, which ended with "good luck getting your future job as a child psychologist." (Which she definitely didn't spell correctly!) I was in year 9 (14 years old) at the time. Even from a very young age, I was aware of all the professionals that worked with my complicated sister (and brother – but that’s a completely different story!), but I felt so powerless to help. I vowed to myself that when I was older, I would have a job helping children like my siblings, and I would care more than anyone could. I felt tearful reading the letter, as it suddenly hit me that I am doing what I always set out to do. And this is all because of Chrissy.

I think the true reason I’ve put off this blog is because I cannot find the words to describe how much my life has been enriched and fulfilled by having Chrissy in it, and I’m afraid that nothing I write will do her justice.


Chrissy aged 9 and Alex, 5

My wedding in 2003

Xmas 2008



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


& this this is part of our #definenormal blogging challenge at http://www.justbringthechocolate.com/define-normal/