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.