A Special Celebration & Undiagnosed Children's Day

When Chrissy arrived during the hottest April for 100 years, I was the proudest mum in the world. I was 23 and a first-time mum. It felt like my greatest achievement ever.

My baby looked flawless and her beautiful dark eyes seemed to take in every detail of her surroundings. In her little perspex cot on the maternity ward she waved her hands around so energetically that I called her our 'air traffic controller.'

Then the dark shadows started pressing in. Thank God we can't see what lies ahead of us.....

Like many children with undiagnosed genetic conditions, Chrissy was a failure to thrive baby. She struggled to feed and gain weight, and was floppy and sleepy - but she was a mass of contradictions. Mostly she was sunny-natured, alert and content to coo and watch the world go by but, even in infancy, she had prolonged spells of inconsolable screaming, and no one knew why. The rest is history and detailed in my book: 'Bringing Up a Challenging Child.... http://www.jkp.com/catalogue/book/9781853028748

Although we now know the cause of Chrissy's problems, she still remains quite an enigma to us and to her clinicians, despite spending three years in an assessment and treatment unit. We know her chromosome disorder causes hugely variable effects but her learning disabilities are significantly worse than most people affected by 1q21.1 microdeletion, even those with a larger area of deleted genes.

So where are we 29 years on?

We have another CPA (care plan approach meeting) coming up on Monday that we never expected to have. Chrissy has now been in the unit for over three years and is ready for discharge but despite my monumental efforts to find solutions and move things forward, she is still stuck there. The Government is very clear that people with a learning disability should be supported to live in their own communities so it is difficult to understand why there are so many barriers in place. I feel like I'm stuck too. It has been left to me to drive it all, and I now spend most of my time on this. It's the same with every major transition, eg when she went into the unit I was driven to the brink of despair along with her. Not only was I in pieces over her suffering but I fought epic battles to get her into hospital. Why does it have to be like this?

Mencap are very interested in Chrissy, and are finding it hard to understand why the situation has dragged on for so long. They are incredulous about the amount of correspondence that I've had to engage in to try and understand the barriers, and to try to move things forward for Chrissy. Her case has been brought to the attention of Chris Bull MP, who is leading the Joint Improvement Programme to move people out of assessment and treatment units after Winterbourne, and Norman Lamb MP, Minister for Care, who has asked to be kept informed of progress relating to Chrissy's case.

Our experiences are echoed by this excellent article highlighting flaws in the Government's plans to move people with learning disabilities and challenging behaviour out of assessment & treatment units into community-based settings:
http://www.communitycare.co.uk/articles/10/04/2013/119078/dont-ignore-housing-in-response-to-winterbourne.htm

Chrissy's most recent (and hopefully last for now) medication change has been from the antiepileptic, Keppra, to Zonisamide. Because she had three seizures in a row after Keppra was withdrawn, Clobazam, a benzodiazepine derivative like Valium, was added to Zonisamide and Epilim. Clobazam will be withdrawn when Zonisamide is titrated up to the therapeutic dose. Chrissy is already on the maximum therapeutic dose of Epilim. I've discussed seizure control/quality of life and my fears about the effects of medication on Chrissy's mood, health and general well-being in previous posts. Clobazam's sedative effect is dragging Chrissy down. I can't wait for it to end as it breaks my heart to see another drug stealing away her personality, and sapping her energy and intellect. I have to remind myself how far she's come - she rarely has screaming outbursts now and, as the effects of her medication wear off during the day, Chrissy is her old self again. It's a delight to see her enjoying jigsaw puzzles again, a skill she excelled at as a child.



Now Chrissy is more aware, she says with increasing frequency: 'I don't want to go back to the hospital.' I have sleepless nights, guilt trips and anxiety attacks over how she must feel living in a locked ward for so long, her suffering and disorientation from the effects of different medications, what she's gone through over the years, what the future holds for her etc. Of course I can only imagine how I'd feel in her situation but, no matter how hard I try to banish those thoughts, they haunt me. It would be such a relief to see her settled again near her family where we can be more involved on a daily basis and help with her support. It's the least she deserves.

I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN blogger

Happy Times!

Ian was away on business so it was just Chrissy & I this weekend. From the moment I picked her up she was jolly and chatty. Throughout her visit there were fewer shouting episodes and, unlike last week, no swearing.

Overall, Chrissy was more compliant and able to focus on the task in hand. This morning I let her take things at her own pace. She chose to play on her laptop before doing anything else. She then let me know when she was ready for her bath and, after I got her dressed, I left her to eat her breakfast on her own with no distractions. Her obsession with food vanished when she came off antipsychotics - but surprisingly she hasn't lost weight. Hopefully we will be able to address her diet when she is living in the community and no longer eating communally.

I was even able to have a shower while Chrissy played quietly downstairs on her laptop. Unheard of! I sneaked downstairs to check that she wasn't stalking one of our cats and was reassured to see that she was sitting contentedly at the kitchen table selecting a DVD. This ability to entertain herself is new - usually, if she is left alone in a room, she seeks us out and shadows us so closely that we get stuck in doorways and fall over her whenever we turn round. She has taken up old hobbies like drawing and writing again.

'My Dinner' by Chrissy

On our morning stroll to the village shop Chrissy clutched her banana-&-chocolate-mousse-in-a-bag and posted my letters then stopped for chats with a lady that used to work behind the till and my neighbour. It reinforced my view that she should move into a familiar community where she will be among people that know her.


As I drove her back to the assessment & treatment unit she kept smiling at me and stroking my shoulder. These genuine shows of affection have been increasing over the past few months. She often spontaneously kisses Ian and I, and says: 'I love you sometimes.'

Only downside is that she's had two nocturnal seizures this week but one or two a week is fine and may account for her calmer behaviour.

Tomorrow Chrissy starts on vitamin B6 (pyridoxine), which may curtail some of the negative behavioural effects that we've seen since she's been on Keppra. I was pleased that her psychiatrist took it upon himself to do his own research & agree to a trial of vitamin B6. Chrissy's neurologist hadn't been convinced.

So this weekend Chrissy's behaviour, ability to engage, alertness, focus etc. were as good as they were just before she went on Keppra but was having too many seizures. Have we finally achieved the successful balance we've been seeking for so long?

Only time will tell....




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

Mosaic Down's Syndrome - My Latest Real Life Story

I first wrote about this rare form of Down's Syndrome for that's life! several years ago. Then in 2011 I heard about Claire's fascinating story, and wrote it up for Essentials Mag. Then it went in the Daily Mirror and now it's had a 3rd showing - this time in Bella Magazine!


Few people have heard of the condition, where someone has two or more types of different cells in their genetic make-up, It's often missed in standard genetic tests. Like mosaic patterns formed from many small pieces, Claire had two or more types of different cells in her genetic make-up. Around 13% of her cells had the extra chromosome 21 found in the more common form of Down's Syndrome, & the rest are normal.

When Claire’s mum, Beverley, gave birth to her, she thought Claire was a normal baby girl but over the years she became increasingly difficult to manage. Despite having a son a year younger than Claire who was fine, Beverley blamed herself & wondered where she was going wrong. Eventually, just before Claire’s 11th birthday, Beverley pushed for medical tests. Claire’s doctor organised blood tests to check her DNA and she was found to have Mosaic Down’s Syndrome, which is diagnosed in around 2% of people with Down's Syndrome.

Most mums discover their babies have Down’s Syndrome during pregnancy or soon after birth, & the news can be devastating. All Beverley felt was relief that it wasn’t her fault & Claire wasn’t a naughty child. Claire was told about her condition when she was diagnosed &, gradually, over time she came to understand what it was. Now she wears her Mosaic Down's Syndrome like a crown. She raises awareness about it and supports parents on social networking sites. She has even made short films about it.

Claire amazes Beverley with her independence and achievements. She has a 2:1 honours degree in media & lives alone in a small flat near her parents. She has even flown to America to give talks on Mosaic Down's Syndrome.

Beverley is extremely proud of her inspiring daughter and wonders how many other people are living with Mosaic Down's Syndrome who haven’t been diagnosed.












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

How Chrissy became my Launchpad into Journalism

I'm not a great one for New Year's resolutions as I've never managed to stick to any but this time of year often brings us fresh perspectives. As you can see from this blog, I've been caught up with my struggles to get Chrissy better and to get her the care she needs - so much so that, recently, I've let other things in my life slip, like my journalism career.

I've had over 1000 articles published in Glamour, Woman, Woman's Own, Best, Reveal, Take A Break, Pick Me Up, Sun, Mirror and Daily Mail, among others, but in my mid-thirties when I started working as a freelance journalist I was untrained and inexperienced.

I had always enjoyed writing for pleasure but never dreamed I could write and get paid for it. In fact, like many mums of young children, I struggled to get paid for any kind of work! It's even tougher when your child has significant difficulties, as it's hard to get childcare, there are more medical emergencies and hospital appointments, and of course the dreaded school holidays! I took on various jobs from party-plan to medical secretarial work but never earned enough to make a significant contribution to the household budget.

Back then of course, there was no internet and I was always on the lookout for stories in newspapers and magazines about children with disabilities but everything I found was about better known disabilities such as Down's Syndrome or autism. I never read anything about a child like Chrissy, who then, didn't have a diagnosis - not even autism. Her Geneticist at Great Ormond Street Hospital told me that Chrissy wasn't unusual - they were unable to pinpoint a cause for problems in 30-40% of their patients. 'There has to be an article here,' I thought.

I bought a book called 'The Writers & Artists Yearbook,' to get contact details for all the magazine publishers, and sent around a synopsis about what it was like not to have a diagnosis or medical label for my child. I didn't even have a fax initially - I posted it out to commissioning editors on all the leading women's magazines.

Two magazines came back - Woman's Realm, which folded in 2001, and Woman's Weekly. I went with Woman's Weekly because they were the first to offer me a commission. I was honest with them about my inexperience and they kindly gave me a detailed brief to follow about how they wanted the piece written.

My first ever published story (Apologies for the poor copy. It's the only one I have!)

Disability Now also published our story. It's a shame that they will no longer consider pieces written by anyone other than the person who has the disability. It means that people like Chrissy, are given no voice in their publication.

The two magazines had a similar readership so Woman's Realm couldn't run it too but they asked if I had any similar stories. I did! I knew lots of women with great stories - some of them mums, some single - all happy to make a bit of extra money and see their story in print. My friend's story about being at loggerheads with her husband over whether to take their disabled son on a family holiday was my next published piece. I was also invited to an 'Ideas Meeting' at Woman's Realm. What an honour! I guarantee it wouldn't happen today - much more difficult to break into the industry. The commissioning ed took me under her wing as she was keen to plunder my contacts. In return she helped me to hone my feature-writing skills without stealing my stories or my bylines! I asked her if she could recommend any correspondence courses and she told me about one that she'd heard good reviews about - unfortunately no longer operating. While I was learning how to build a freelance journalism business, I was still getting articles published and getting paid for them.

I branched out into training, and wrote and delivered trainings on managing challenging behaviour using communication strategies. I also trained and advised aspiring young journalists at an FE college and worked as an external verifier for journalism courses at colleges and universities. Meanwhile, I did a stint teaching adults with learning disabilities at an FE college while gaining a Further Adult Education Teaching Certificate.

My career success gave me the boost I needed to approach publishers about my book idea. My self-help book 'Bringing Up a Challenging Child at Home: When Love is Not Enough' http://www.jkp.com/catalogue/book/9781853028748 was published by Jessica Kingsley, London in 2000. Ten years later I wrote a chapter for a book published by the New England Journal of Medicine, entitled the ‘Genetics of Mental Retardation,’(Karger).

Chrissy's story continues with this blog. Did I really start it over two years ago?! It seems like only yesterday when I was grappling with HTML and the like!

Through this blog I've been offered some great stories but I also want to let you know that, although my own story is about raising a child with a learning disability, I would love to hear from you about stories on any subject!

To give you an idea, here are some topics I've written about and am looking for stories on:

Seasonal stories - currently those with a Mother's Day or spring/easter hook
Health stories - an unusual take on a common illness works well.
Funny, quirky, heartwarming & shocking real-life stories.
Age gap relationships.
Crime.
Weight loss due to shocking photo.
Cheating saved my relationship.
Botched cosmetic surgery.
Strong fertility story.
Someone who found out partner was leading a double life.
Woman whose wedding went wrong, was engaged many times, or suffered any sort of betrayal.
Mum whose child has problems with alcohol or is very overweight.
Strong relationship or true-life stories that you can imagine reading in a magazine.

Alternatively visit my Facebook page https://www.facebook.com/Sharingstories to connect with me, see examples of my stories and get more info.

Look forward to hearing from you soon!


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

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

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

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