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

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

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/

Advocacy & Learning Disabilities: Special Saturday

Going with this week's Special Saturday theme - sharing my life with Chrissy has made me acutely aware of the unique role advocacy plays in supporting individuals with learning disabilities.

You may think that a person with learning disabilities who has a pro-active parent and/or care manager (& many don’t) may not need an advocate - but an advocate is uniquely placed to act with minimal conflict of interest. This conflict of interest issue is key to advocacy – in any situation other people will have interests that will conflict or compete with the interests of the person with a disability. Taking independence skills as an example - a parent may be over-protective and make choices for the person with learning disabilities, stifling their ability to gain independence skills. Due to funding constraints, a care manager may be reluctant to provide the necessary care support for them to gain independence skills. The vulnerable person’s relationship with an advocate is different to those with relatives or professionals in that it is a partnership built on trust and confidentiality. By identifying and minimilising any of their own interests & needs that may conflict with the person's they're supporting, an advocate supports them to put their choices into effect. The advocate does not make choices for them or have a vested interest in outcomes of granting their choices.

Being independent, an advocate is in a unique position to identify what the person’s needs are and to and try to understand what it is like to be in their shoes. An advocate’s objectivity may enable them to focus on key issues in sometimes complex and sensitive situations and take action on the vulnerable person’s behalf. Their unique awareness of the person's wishes and choices may enable them to take the initiative by creating a sense of urgency and challenging other professionals.

People with a learning disability are often portrayed as less than human & their disability can lead to low status & a devalued role in society. They may experience discrimination, neglect, exploitation or abuse. Their human and legal rights may be denied, and even where rights exist, access to ways of enforcing them may be restricted. An advocate has a unique role in supporting the person with disabilities to access and exercise these rights.

Advocacy can also play a vital role if people with learning disabilities are confronted with situations they find difficult or they feel they are not being listened to. An advocate’s role may entail supporting their advocacy partner to make choices and express their views at meetings with professionals. It could mean being on the person’s side in situations where they could be taken advantage of, or fighting for the person’s right to lead a more fulfilling life.

As well as representing a person’s interests, an effective advocate may make information, advice and support services more accessible, and lead to access to different forms of advocacy, such as a solicitor or Citizens Advice Bureau. For example, the local CAB can support the individual to get the correct benefits or the Disability Law Service may be able to advise on legal situations.

To carry out their role successfully, an advocate must understand and be committed to the values and principles of advocacy, that regardless of whether or not we have a disability, we all have the same value and rights, and should be given the same opportunities to fulfil our potential for growth and learning and lead purposeful lives.

Finally, by offering conflict-free support and being on the person’s side, an advocate may enable people with learning disabilities to transform their lives by ‘exercising choice and control,’ as recognised by the Government White Paper of 2001, ‘Valuing People.’ Ultimately, advocacy serves to promote the welfare, wellbeing and social inclusion of people with learning disabilities, to protect their human and legal rights, combat discrimination, and, overall, to improve their quality of life.


I have written this post as part of #Specialsaturday. Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday; following on twitter - @Specialsat and retweeting hashtag - #specialsaturday; reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/

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/

Sunshine Days

Gather Ye Rosebuds While Ye May by John William Waterhouse

Mum pointed out the poignancy of these words, etched in stained glass on the front door of my childhood home in the Lake District when we went back for a visit in 2008. (Pictured in front of the door are me, my husband Ian and Chrissy's younger sister Alex).



The carefree days we'd spent there from 1968-1970 before moving back down south for dad's job, had been some of the happiest of our lives. Then, we'd been blissfuly unaware of the double whammy that lay ahead - dad's early onset Alzheimer's and the problems with his first grandchild.

Being Chrissy's mum and, of course getting older, has highlighted for me the value of seizing the moment and treasuring the good times.

Yesterday was one of those times. Chrissy was having a sunshine day, and lit up the house with her smiles, laughter and funny comments. I banished fleeting thoughts of 'I wish you'd been like this last Friday at the zoo.' With Chrissy, you have to go with the flow.

My book is threaded with references to such sunshine days - Chrissy's doctor noting her 'delightful social manner,' a trip to the circus where her whole body vibrates with joy, her uninhibited exuberance as she conducts a small orchestra at a village fete, her face wreathed in smiles at a school meeting as she shows me her record of achievement book.

Her wonderful times are as unpredictable as her awful ones - but yesterday, whatever it is that robs her of her equilibrium stayed well away. She was so joyful that she even sang to herself as she pottered around the house and, as she watched her new Snowman DVD, which I'd bought to replace one she'd broken, she enthused: 'I love Snowman!' After dinner she made us laugh by asking: 'Mummy can I have something else to eat?' and immediately admonishing herself: 'No, Chrissy, you've already had your tea.' Beaming smiles and social chit-chat replaced last week's moans, groans and outbursts. With encouragement, she was confident enough to carry out several self-help tasks independently, like taking her shoes off and changing into her slippers, and going to her bedroom by herself to choose DVDs to bring down. Normally, she demands: 'you help me!'

I've learned over the years that it doesn't matter where you are or what you're doing when Chrissy has a sunshine day - you simply bask in the warmth of its glow & enjoy it while it lasts.....



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

Eating Issues: A Special Saturday Post

Here, Chrissy is clutching her lunch-box in a carrier bag with its handles tied in a bow. Taking a packed lunch and indulging her food-related rituals enabled us to enjoy a trip to Exbury Gardens yesterday with her two nanas.

Chrissy has always been obsessive about food - from failing to thrive as a baby to over-eating as an adult. As a newborn Chrissy's suck was weak and she vomited frequently. Even as an infant, she suffered prolonged screaming bouts in which she would fling herself backwards as if in the grip of a painful spasm. I suspect she suffered from reflux as this is a characteristic of her chromosome disorder.

At her six week check I was advised to put her on solids as she wasn't gaining sufficient weight. The dramas at mealtimes began in earnest then. Chrissy choked, gagged and vomited her way through the weaning period, especially the stage 2 baby foods with lumps, as I agonised over where I was going wrong. I pureed her food for several years as she seemed unable to chew. The vomiting eventually eased but Chrissy's appetite remained poor. She limited her diet to a few select smooth foods, such as Petit Filous - the little fruit cream cheese pots, and Weatabix, mashed up with lots of milk.

Changes came gradually as Chrissy grew bigger and wanted the same foods as her siblings and peers - but she was still very picky and ate painfully slowly. When she was around 10 and anti-psychotics were introduced, her appetite increased and her diet became more varied. It got to the point where she'd eat anything and never seemed to feel full. Her weight decreased again when she went on Prozac and Naltrexone at 14, and during her six-month stint on a gluten and casein free diet. Her weight dropped to five stone when she was 22 and had the platelet problem. She would only eat cheese flan initially, then ate so little we wondered how she survived. After her hospitalisation, anti-psychotics were re-introduced on a daily basis, and she became increasingly obsessive about food. In fact, before her microdeletion was found she was even tested for Prader-Willi Syndrome, a genetic disorder characterised by over-eating and food obsession.

These days, Chrissy is overweight and her life revolves around food. She repeats the same food-related questions every couple of minutes 'what's for dinner?' 'What am I having?' 'Is it peanut butter?' etc. If we ignore her or don't answer in the right way she gets increasingly agitated and if she has to wait for food her obsessions will escalate into a self-injurious outburst. Due to these outbursts, particularly her stripping behaviours, we're very nervous about taking her out of the house. The trip to Exbury was a ridiculously ambitious plan but I knew that, for different reasons, it was a special place for Chrissy's nanas, and at this time of year it's at its most spectacular. We got there late - about 3.30 - because we couldn't rouse Chrissy from one of her sleepathons - but the long deep sleep had left her full of life, and she was thrilled to be there. The only heart-stopping moments came on the moving steam train when Chrissy announced several times with increasing urgency: 'I want to get off! Thankfully, Ian's iron grip, and our frantic distraction techniques and shameless bribery ('shall we open your picnic? What would you like next - cake or chocolate mousse?') worked a treat. She finished her picnic later in the most idyllic setting imaginable surrounded by a riot of colourful blooms, including the glorious rhododendrons Exbury Gardens are famed for. I'm so glad we decided to risk it. What a magical afternoon!

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

Defining Normal

Chrissy tickling her feet at the top of the garden

Normal for us is leaving Chrissy on a locked ward & trusting paid strangers to be kind to her. It's letting go & accepting that a professional team does a better job than we can at home. It's acknowledging that once a week our lives will be both enriched & turned upside down by her visits. It's avoiding her self-inflicted wounds when I towel her dry after a bath. It's shaving her legs & wiping her bottom without a 2nd thought. It's reaping her gentle smiles, basking in her sunshine times & marveling over her different way of viewing the world.

Although Chrissy isn't at home full-time with us anymore, she is still a huge part of our lives. Most days it's normal for me to be writing to or speaking to one of Chrissy's doctors or other professional involved with her care. On my desk now is a letter about our Disability Living Allowance appeal. Behind me, ready for filing are documents relating to my application for Deputyship so I can legally act on Chrissy's behalf, ie sign a tenancy agreement if she moves to a rented supported living home. On the floor is a musical book for toddlers, entitled 'Bedtime Songs.' I guess an outsider looking in would be surprised to learn that it's a gift, waiting to be wrapped in pink Sleeping Beauty paper, for someone's 28th birthday.

All this has been our normal for so long, I've found #definenormal a huge challenge!


I have written this post as part of the #definenormal blogging challenge at http://www.justbringthechocolate.com/define-normal/


And for #Specialsaturday. Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/

Good Care Planning & Changing Needs

'Hooray!!!'

We managed a walk to the village shop yesterday:-) There were a few hairy moments when we got there as Chrissy was like the proverbial kid in a sweet shop & got paralysed with indecision, then wanted everything in sight. Giving her a basket to put her goodies in reduced her anxiety (once she'd made it 'symmetrical' by re-arranging the handles). As we got near home I praised her for being a 'good lady' &, as you can see from the photo, she cheered!

I'd been inspired to take Chrissy out again after being told at her CPA (Care Planning Approach) meeting yesterday morning that her carers had taken her to M&S & a couple of other places without any major dramas.

Chrissy has two CPAs a year where the professionals and I sit around a table to discuss and plan her future care needs. Anyone with a range of complex needs like Chrissy's is entitled to have a care plan that's regularly assessed and reviewed. At the meeting everyone agreed that since recent drug changes Chrissy remains much more alert and interested in engaging with activities. The downside of this 'awakening' is that her outbursts are more violent, and she has hit staff and pushed tables over. We haven't seen this degree of aggression at home but she's more diva-ish than ever with a steely determination to get her own way. Last night she refused to go to bed until the early hours. There's no point in trying to force the issue so we turned all the downstairs lights off & left her to it. She soon came up and said 'you put me to bed,' but when we tried, she got caught up in her rituals, moving things around in her room so surfaces were clear and certain items, like her cover, were symmetrical. She kicked off several times but we got there in the end. We had the same rituals this morning at breakfast time. It tried my patience so much that I wanted to throttle her but Ian was amazing with her, & managed to de-escalate several potentially explosive situations by keeping calm and, somehow, just knowing exactly what to say & do at the right moment.

We still have some way to go before Chrissy is stable enough to leave the assessment and treatment unit and I still feel no clearer about what sort of home setup will suit her best. Now she is more alert her needs are changing and we need to look at a range of options. Cluster homes were suggested, which means that Chrissy would have her own space but be able to socialise when she chose. The commissioners can invite tenders from service providers, and we can be part of the interview and selection process. Right now, this seems to be the best way forward but we will have to see what can be provided locally.

I had been feeling very frustrated over how slowly things seemed to be moving, & the feeling that I'd had to drive every step forward, as described in previous blogs - but there's nothing like getting round a table to thrash things out with someone taking a strong lead - in this case Chrissy's impressive new psychiatrist.


Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/

Can children Grow out of Autism?

Chrissy, far left, aged 11, with siblings, Jamie, 9 and Alex, 6

Did you read the Daily Mail story 'Can some children simply 'grow out of autism?' http://www.dailymail.co.uk/health/article-2103940/Autism-Can-children-simply-grow-One-mother-tells-sons-life-transformed.html I was irritated and perplexed by it, not least because it wasn't made clear whether Josh, the nine-year old in the story, who was diagnosed at three, still had a diagnosis of autism!

I was interested to see a piece on the NHS Choices website describing the Mail's claim as 'misleading' and offering a 'false impression to the parents of children with autism:' http://www.nhs.uk/news/2012/02February/Pages/children-grow-out-of-autism-claim.aspx

I suspect most cases of a child 'growing out' of autism are in fact initial misdiagnosis, perhaps made too early before the picture becomes clearer. Other overlapping conditions, such as developmental delay, can cause similar symptoms and diagnostic overshadowing. I'm not convinced by the early interventions argument. Although early interventions can improve problems associated with autism they can't cure it. In our experience identifying signs of autism can be open to interpretation and its diagnostic criteria has widened over the years. Is it being diagnosed too readily these days?

Far from growing out of autism, Chrissy appeared to grow into it! Autism was first mentioned by her speech therapist when she was four, who said that although she had very few words that she used 'parrot-fashion' like someone with autism, she used imagination when playing with a doll. (I think she brushed the doll's hair or spoke to it.) Another doctor described Chrissy as 'unautistic' because she was social and affectionate - the very opposite of the withdrawn and isolated child in a world of her own that used to be considered 'classic' autism. In fact, a paediatrician told us: 'Your daughter can't be autistic because autistic children don't speak.'

As I've explained here before, years later when Chrissy was 22, her psychologist diagnosed her with a form of autism classified as 'active but odd,' a diagnosis confirmed by Lorna Wing, MD, Psychiatric Consultant at the National Autistic Society, who checked the psychologist's extensive report. In 2010, a consultant psychiatrist from The Maudsley Hopsital's Autism Assessment Clinic confirmed the presence of autism from an early age after reviewing old videos of Chrissy. He noted her odd postures and facial expressions, and how she flapped her hands in front of her face even at six.

Looking back, Chrissy's autistic traits have waxed and waned over the years. When she was little she often appeared to ignore us when we spoke to her, but we put it down to her severe glue ear, then everything was attributed to her developmental delay. She's always had obsessive/compulsive traits - lots of verbal repetition and switching lights on and off - but taken alone they didn't signify an autism spectrum disorder. Her severe outbursts weren't triggered by changes in routine or anything else that seemed particularly autistic, but her problems with small daily transitions appeared to get worse as she grew older.

Around the time the photo on here was taken, she was going through a phase of turning everything round the wrong way and upside down in her bedroom but that's long since passed. Her over-friendliness has confused the picture in the past but it's now on the wide spectrum of socially inappropriate behaviour that people with autism display. I remember watching Rain Man for the first time back in the eighties when it first came out. I enjoyed the film then but didn't associate Raymond's problems with Chrissy's but each time I've seen it since the parallels are so obvious I keep gasping: 'Oh my God - that's Chrissy!'

These days, Chrissy has frequent spells of very autistic jumping up and down, flapping and screeching but not all the time thank God! Maybe some of these behaviours were always there but less noticeable in a small person but I do think Chrissy is less able to adapt to her environment than when she was little. She was more flexible and reslient then. Maybe she had to be because we didn't know what was wrong and expected her to fit in with the rest of the family. As she grew bigger the tables slowly turned and she either grew into autism or we were no longer able to resist its awesome power!


Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/

How we really feel about our Children's Genetic Blips

I belong to a Facebook group for families affected by rare chromosome disorders. We mums discuss our children’s medical issues matter-of-factly and share our frustrations about fighting for services - but only occasionally do we dig deeper into our own feelings of sorrow and loss. Then a mum asked how we'd reacted when we found out about our child’s condition. It triggered an avalanche of emotion, so eloquently expressed that I was moved to ask if I could share some of the comments on here. There’s rage, despair and brutal honesty but shining through like a beacon of hope is our love for and devotion to our Unique children.

Jenny....We only found out about Steven's deletion in 2010 just before he turned 30....In a way it was a relief to finally have an answer and since being told what had caused his problems I have found out more about my son then I ever thought possible; it has also helped me to understand him better. My hubby’s approach was: "oh well at least now we know" but I had to find out as much as I could and in fact I'm still finding things out. Guilt was my main feeling for 30 years. There are days even now, 31 years later, when I hate what our lives have become. I love Steven to bits and would give up my life for him but there are times when I hate his condition. It does not make you a bad person for feeling like this – I think if people were honest most of us feel like this at some time or other. It doesn’t mean we love our kids any less. Some of us just struggle more than others....

Anon....12 years passed after our first daughter was born before my husband and/or I stopped shedding silent tears when we saw a child walking hand-in-hand with its parents. We could not adore our own any more than we do but grief for the loss of their mobility, or conversation, or demonstrations of reciprocated love, runs very deep. On the outside, people saw us as strong and capable - role models for other parents. Human beings are truly remarkable. Yep, there have been times when I have heard my daughter talking to me and seen the girls running around and at the moment of waking, I am full of joy. You don't realise how things have affected you 99.9999% of the time...

Jennifer....We found out about 1.5 years ago and I'm still as upset as the day I was told. Many days I am unsure that I can live the rest of my life with this. My husband is the strong one who is handling it well. I know people are all upbeat about their situations and many say they wouldn't change anything. Hate me if you want, but hell yeah I'd change it. This is not fair for Brooke, for her brother or our family. I am really bitter, angry, and want to talk to whoever is in charge to get this fixed. However it's not an issue that can be fixed. A friend of mine adopted two handicapped children from China and he told me it's easier for him because he knew what he was getting into. This was sprung on us and I for one am not happy. Of course I love Brooke, but it's something that I knew I couldn't handle. I'm one of those horrible people who would see a child with Down's and say a thank you to God that we didn't have that. I'm not strong enough to deal with it. Sorry to be such a downer. I'm sure I'll get a lot of replies saying that I need to see the positive side. Yeah, I've tried that. It still has changed our lives in a way that we didn't ask for, want, or can handle. I know I’m a bad person for saying that but that's how it's affected me. I'm sure we all go through the stages of grieving and I'm stuck in the anger stage. I love Brooke to pieces but one of my fears is that she will remain a toddler forever. Thank God I have my husband. I for sure couldn't do it alone....

Leah....We got Ty's dx sometime in his first year. 10 years on and I am still angry at what we have to go through, what I have lost and what I will likely continue to lose as time goes on. I know I have gained so much as well…..This week I hate this life and cry at the drop of a hat. Next week I will be on the front lines fighting bitterly for my son’s rights..... My ex-husband...well...he's an ex...that should tell you a bit about how he handled it. He manages to accept my decrees when I throw one down and tell him he will be doing such-and-such for our son. He doesn't like most of them and most of the time I have to battle him too in order to get him to understand why they are needed.
I cried when they told me 10 years ago and I still cry on a regular basis because I am exhausted and frustrated, and tired of fighting for EVERYTHING, and tired of watching my son struggle and not knowing how to help him. He is the light of my life, the very air in my lungs...I can't honestly imagine loving anything as much as I love my little man. I would give it all up to have him healthy, to have him "normal", to have him "acceptable" in society's eyes. I would give EVERYTHING up for my son to be whole. It probably seems odd to hear these things. Most people tell you something bad and then coat it in the sugary sweetness of how wonderful it can be to be a part of these kiddos’ lives. And sure...there are GREAT moments...but I wish someone had been honest with me...maybe I wouldn't have felt like such a horrible mom and a horrible person for so long thinking that I was the only one who HATED that I was dealt this card…..There are truly SUPERMOMs out there that take it all head on...and then there are those who take it head on because we have no other choice...someone we love needs us and we do what we have to, even though we may not like it. It is scary enough just getting a dx of anything other than "Your child is beautiful and healthy!" …..Even those of us with older children are still scared to death of the dx we were handed, what it means, what we do with it, what is coming. The hard part...no one really knows...

Jen....We found out last April that our daughter (22 months) had a chromosome disorder. We were devastated. She was developmentally delayed but we mistakenly thought that meant she would "catch up." My husband and I went through different grief periods with him refusing to open up about it and me needing to. I won out of course and we worked through it together. I thought I was losing my mind. What compounded our grief was finding out that our three year old had autism three weeks later. He had been speech delayed but we were told by Early Intervention that it was just a speech issue. They were wrong. To say my husband and I were then angry at God and everyone else is an understatement. It has shaken to the core my basic beliefs about everything. I hate to add even more but then three months later (this August) my healthy 15-year old collapsed and had a grand mal seizure, and has since had another and was diagnosed with a seizure disorder. Now I’m in survival mode day to day. I have a hard time even relating to people with "typical" children. Not because I don't have any; I have nine children. I was blindsided by the issues of my kids and am on antidepressants. I was going to school to finish my degree and thought our life was going a certain way and it took a long time to accept that I may have three kids living with me as adults. Jennifer, I feel for you, every one of us can understand where you are coming from. Sometimes I can't even imagine what kind of creator could let people go through the kind of heartache that we all go through with these kids. The challenges my kids face have opened up a whole new dimension in my life that most people don't get to go to and I feel very blessed to be able to witness the tiny miracles, such as my baby signing or my autistic son calling me mom. I know people whose biggest worry is when they can get their nails done. I fight bitterness because of the lack of support from both sides of our families but I know better so it makes me almost feel sorry for them. I can't imagine not reaching out to a family member who is going through this....



Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/

Person Centred Planning

December 2011: Note rolled up sleeves - one of Chrissy's rituals

Person centred planning (PCP) is a way to support people with learning disabilities to plan how they would like to live their life as fully & independently as possible. Anyone with a learning disability can have a PCP, even if their communication is limited, as PCP is done in consultation with people who love them and know them well.

Chrissy has been in a therapeutic unit for two years and, although she's not yet ready to move on, we need to start planning her future now. The Challenging Behaviour Foundation advised that this can take 12-18 months for someone with such complex needs.

A PCP professional visited me on Wednesday and showed me an example PCP. It included gems such as 'When I sing Bohemian Rapsody watch out. I'm not singing happily - it's a sign that I'm about to lose control and I may throw something at you!'

With Chrissy, I follow my instincts, and take so many of her quirks & rituals for granted that it's difficult to convey her support needs to someone else. However, seeing the colourful detail in the example opened the flood gates. I found myself able to take the PCP professional step-by-step through Chrissy's daily routines. I explained that when Chrissy comes downstairs for breakfast she must have the larder and kitchen doors shut, lights switched on, the area around her chair cleared of any objects that she deems shouldn't be there, her two favourite drinks with two straws, a carrier bag with handles tied in a bow containing her chocolate mousse and a banana......

After all that and more, she will only eat her egg on toast, cut up, with two splodges of tomato sauce, when she's good and ready, usually when it's stone cold!

Explaining the detail of Chrissy's daily routines also helped me to gain more insights into her support needs, which I can pass on to professional carers. For example, I instinctively know when to make myself 'invisible' for Chrissy to adjust to transitions and self-calm. It may mean removing myself from view and watching silently from a safe distance, or simply avoiding eye contact and using minimal communication. When Chrissy arrives for her weekly visits home, I try to get her coat off and settle her into my routine, but the penny's dropped that she needs initial time to herself to wander freely from room to room to adjust to her new territory. She will eventually approach me and say something like: 'Mummy, I want to go on my computer.'

PCP reminded me how important carefully managed approaches are to support Chrissy effectively. The daily management aspects of her needs should be sufficiently met in a single service unit close to her family with a team of carers that know her well - but there are other considerations. Key is the proximity, skill and responsiveness of a multi-disciplinary clinical team. Failings in this area contributed to the breakdown of two residential placements, which caused her untold trauma. When it comes to 'what next?' for Chrissy, we must get it right this time.




Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/

Epilepsy & Behaviour

Chrissy aged 10, with her chocolatey sister, Alex, 6

Since Chrissy's Topiramate has been swapped with Pregabalin, she's had two clusters of night-time seizures, one requiring rectal Diazepam. This is Chrissy's usual pattern but seizures were infrequent on Topiramate - the price she paid was being over-sedated, though not enough to quell her self-injurious outbursts. When her seizures started up again I hoped she'd get a break from her outbursts. They tend to be less severe during seizure cycles but this pattern has got less apparent as she's got older.

The reciprocal relationship between epilepsy and behaviour is recognised among medical professionals. It's like a pressure cooker releasing steam. Chrissy would have a build-up of challenging behaviours then seizures followed by a brief period of calm. When she was little I thought there was even more to it than that, and became convinced there was an epileptic component in the severe self-injurious outbursts. Chrissy's school teachers felt the same, and described the way 'something just came over her' as she sat doing something that she enjoyed. I became increasingly frustrated that health professionals were dismissing these outbursts as purely behavioural - as if they'd cease in a different environment.

When Chrissy was 10 my frustrations boiled over...

She was in Great Ormond Street Hospital for a routine MRI scan. A general anaesthetic was arranged because she wouldn't have co-operated, & she was given a pre-med. It sent her to sleep but she woke up when she was moved from her ward to the scanning room, and exploded into an outburst. She bashed her head repeatedly against the metal bars of her bed and tore at her skin. 'Now at last her neurologist will see one of these & organise investigations to find out what's going on,' I thought. How naive I was!

The hospital nurses were shocked at Chrissy's distress. One nurse, who'd worked in child psychiatry for years, said that she'd seen children with mental health problems in meltdowns before but this went way beyond that. Normally they gave up when they were exhausted but Chrissy appeared to be in the grip of something beyond her control.

The neurologist was called to the ward. He appeared, flanked by junior doctors, took one look at Chrissy, who was thrashing around on the floor by that point, and said: 'That's behaviour.'

As he turned on his heel to walk away, red mist descended & I threw questions at him like darts: 'If it's behavioural then how come she's had these from infancy? Why do they wake her at night? Why are they triggered by general anaesthetics & some medications? Why doesn't any intervention stop them? Why are they self-limiting? Why are they cyclic and worse in late afternoon? (as they were then) What about the strange physical symptoms - complaining about sore eyes, clawing at her face and extremities as if they hurt? What about the reciprocal relationship with the seizures?'

The neurologist insisted: 'What we're seeing now probably isn't the same as those you saw when she was a baby. This doesn't look like any seizure that I've seen. Epileptic episodes don't last as long as this. They're behavioural.'

I stormed off and had a good cry.

When I calmed down and returned to the ward, the neurologist took me into a side room and explained: 'I doubt that what I observed is caused by epileptic activity but I agree that there appears to be a reciprocal relationship between the seizures and behavioural outbursts. We really don't know what they are but behaviour sometimes worsens in children with epilepsy when seizures were well controlled.'

He decided to try a new anticonvulsant - Gabapentin.

Almost immediately Chrissy slept through the night for the first time in weeks. Two days later, the first thing I noticed when she came home from school was her smiley face and pink cheeks. (She looks pale & wretched when she's going through an outburst cycle). I asked her for a kiss. 'Screaming's gone.' she said.

Her teachers reported that she'd been 'brilliant,' amenable and well-behaved at school. I felt ridiculously emotional. Surely it was too early to be Gabapentin? Maybe it was a delayed reaction to all the pre-op sedation & general anaesthetic?

In fact, it was probably Chrissy's emergence from another bad cycle of outbursts but, when she's well, I always feel giddily optimistic that it will last. I rang friends and family to tell them about the change in her. 'Don't count your chickens....' they gently warned me.

Taken from my book: 'Bringing Up a Challenging Child at Home.'



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

Festive Challenges and Autism Tips

Chrissy aged 9 with her sister, Alex, years before she was diagnosed with autism
Last Christmas was very difficult for Chrissy. The self-injurious outbursts kicked off on Christmas Eve then reached a peak during Christmas Day. She had 8 major outburts in 24 hours - including a hair-raisingly violent one during our 2-hour drive to her aunt's. (Her sister and I arrived in tears). Chrissy fluctuated between full-on screaming, rolling around on the floor and self-injuring, and being out of it. It was, as you can imagine, very disruptive & distressing for Chrissy herself & the 13 other family members around her. Because she was stripping off, we had to keep her hidden from her younger cousins' view - an almost impossible task.

Previous Christmases have been more Jeckyll & Hyde than last year's - outbursts interspersed with lovely times rather than lethargy. The picture above shows Chrissy enjoying herself but on & off throughout that day she had been clawing at her face & around her eyes. At one point, Ian had taken her outside in the cold & sat quietly with her for a while to calm her down & give everyone respite. Not all Christmases have been so difficult. Chrissy's autism fluctuates unpredictably like her moods, and appears to have got more severe with age.

We're hosting Christmas this year, which will make it easier to minimise triggers & manage outbursts. We'll celebrate Christmas around Chrissy & she can choose which parts to join in with. I won't involve her in the present-opening scrum, nor will I invite her to join us for Christmas dinner. Chrissy time is slower than our time. Once she's figured out that there's a feast at her disposal, she'll wolf down her meal in peace long after we've cleared the table. We'll also try some National Autistic Society tips to support The Diva through her festive challenges. Wish us luck! http://www.autism.org.uk/living-with-autism/at-home/coping-with-christmas/ten-ideas-for-a-happy-christmas.aspx



Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/

Letting Go: When Love Isn't Enough

Chrissy aged 14 with a favourite teaching assistant, Geraldine, at St Elizabeth's School

13 years ago I came to a crossroads. I could no longer manage Chrissy at home but how could I bear to part with her?

The first stage of the letting go process – accepting that I couldn’t care for Chrissy unsupported by community-based services – was respite care. She was only 7, and Ian and I decided to go on a family holiday without her. When I told a friend, she was shocked. “Chrissy’s your flesh and blood - how can you leave her behind?” she asked. Ian didn’t mince words in justifying our decision. We desperately needed a break and previous holidays with Chrissy had been disastrous. Holidays and special occasions can be purgatory for children with learning disabilities that struggle with routine changes, and there was no point in putting Chrissy, her two younger siblings or ourselves through what would be another ordeal. She could stay in respite for the week, which she enjoyed. I was discovering that tough compromises had to be made in order for us to function as a family.

When respite services were first offered I was at breaking point emotionally but felt like a bad parent because I couldn’t cope. The needs of my two younger children also had to be taken into account; having a disabled sister had forced them to grow up too quickly. When I’d had them I had no idea that Chrissy’s difficulties were so severe. I thought she’d just be a bit ‘slow’ and grow out of her outbursts like a toddler grows out of the terrible twos. The only person that suffered during the letting go process was me! Chrissy loved the respite centre on her first visit. It was full of friendly, cheerful staff, play equipment and toys. She didn’t want to leave.

Respite care became our lifeline. Mum was the only family member nearby, and she did her best to help, but she had my dad to care for, who had premature Alzheimer’s.

The introduction of behavioural strategies when Chrissy was 10 helped me to feel more in control and manage her better day-to-day but the self-injurious outbursts continued. It was as if she was in torment, in the grip of something she desperately wanted to control but couldn’t. Her doctors prescribed powerful sedatives and all carers, including us, were taught physical restraint. It sounds extreme but it was preferable to leaving her to her own devices. The anti-psychotic medications they prescribed sometimes had paradoxical effects and caused extreme agitation or nasty side-effects. Ironically, the use of chemical coshes was something I’d feared would happen if she went into residential care, yet here we were sanctioning its use at home.

Guilt and anxiety engulfed me – I beat myself up for everything I couldn’t do to help Chrissy and lost confidence in my parenting abilities. I persisted in trying to make her life as ‘normal’ as possible by including her in family activities and outings. We had some lovely times but, more often than not, outings ended in mayhem. Chrissy's SLD school was struggling to manage her outbursts too and an agency providing home carers during school holidays was concerned about them getting hurt. Something had to give.

The obvious solution was residential school but I felt torn. Chrissy was still like a toddler, and very dependent on me. I feared she’d be neglected or miss us terribly, but for her to suffer abuse like the disabled adults in BBC’s Panorama programme, ‘Undercover Care,’ was beyond my worst nightmare. Then I wondered: "Am I denying her a better life? Maybe she'll thrive in a more structured environment. Surely it’s better that she gradually gets used to residential care now rather than when we die or are too old, or ill, to cope?"

When Chrissy was 14 her life changed for the better. A new drug regime transformed her behaviour and we found a very special termly boarding school http://www.stelizabeths.org.uk/schooldefaulthome, a tranquil gem tucked away in the Hertfordshire countryside, I only wished we'd discovered it earlier. I was excited about what they could offer Chrissy. The pupils looked happy and cared for, and many had complex needs like Chrissy. Their on-site healthcare team could monitor her epilepsy closely and she would return home for weekends and school holidays.

Despite my optimism, I felt bereft when Chrissy first left, and wept at the sight of her empty bedroom – but my fears were unfounded; she never forgot who we were and always quivered with joy each time she saw us again. She was happy to return to St Elizabeth’s after visits home, and having time apart made me enjoy the good times we had with her more.

When Chrissy left school at 18 I accepted that adult residential care was the best option for her. We found a lovely care home 30 minutes’ drive away, and Chrissy was their first resident. Her carers spent time with us at home getting to know Chrissy’s needs and supported her to go out and about in the community.

Unfortunately, four years later Chrissy’s medication was changed due to a life-threatening adverse reaction. Her self-injurious outbursts intensified and couldn’t be stabilised with medications that her psychiatrists prescribed. Two residential placements broke down when they could no longer cope with her challenging behaviour.

Since January 2010 Chrissy has been in a privately-run therapeutic unit to stabilise her behaviour with medication and psychological approaches. She will remain there until she is stable enough to move into a bespoke service, which is still in its planning stages. Living in a hospital ward, no matter how homely they try to make it, is far from ideal. Many residential services claim to specialise in autism but struggle to offer sufficient staff training, structured routine, continuity of care and a person-centred environment.

As Chrissy’s mum, I feel no one can look after my fragile daughter like I can. She’s a hefty 12 ½ stone due to her medications but, in my recurring dreams about keeping her safe, she’s tiny, like the child she’ll always be in my eyes.

Other parents may manage to care full-time for their disabled children at home but some are harder to care for than others. I need all my strength to fight battles on Chrissy’s behalf, which is what I’ve had to do all her life. I do all her washing, still have her home every weekend, and move mountains to enable her to attend family events and celebrations. I leave no stone unturned in ensuring Chrissy gets the best possible care and, when things go wrong, righting them becomes a full-time job. I still fantasise about having her home full-time. Then I’m brought back to earth with a bump after a particularly challenging home visit.

Over the years, each time I’ve let Chrissy go a little – the first night in respite care, the first MENCAP holiday, then on to boarding school and full-time residential care, it’s been gut-wrenching but when I look back, I recognise that I’ve made the right decisions for Chrissy and my family. Her outbursts are so violent and unpredictable, and her needs so complex that it would be impossible to care for her at home.




Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/

Invisible in the Community

Chrissy (in purple, 2nd from right, at a MENCAP party aged 7)
It hit me when I was searching our family albums for another photo.

So many pictures of Chrissy engaging with people, fully involved in the hurly burly of life. Dressing up for Halloween and making 'witchy' faces with her sister; sitting at a table, eating birthday cake, surrounded by people and chaos; dancing around and introducing me to her peers at her 18th birthday party; giggling with her brother on a fairground ride.

What happened? How did we get to where we are today - in a locked ward on an assessment & treatment unit?

Despite the government's efforts to end social exclusion, people with learning disabilities are still amongst the most marginalised groups in society - but it isn't bullying or prejudice that makes Chrissy invisible in the community. She simply isn't able to function outside her comfort zone. The severity of her autism, stripping & self-injurious behaviours have effectively isolated her from the world.

Chrissy's involvement in family events has dwindled. She came to our wedding in 2003, albeit with two helpers, and a family christening a couple of years later. She managed (again with two helpers) for an hour or two at my 50th birthday party last September, which made my night. Now we can't even take her up the road to the village shop or, God forbid, to a restaurant.

It means that Chrissy's outings are restricted to our garden or the assessment & treatment unit's grounds. Even on good days, we can't risk taking her anywhere other than straight to the car when we take her back to the unit. She's too unpredictable.

Looking back, Chrissy had become increasingly difficult to manage as she'd grown bigger. Holidays together as a family and trips to the supermarket were the first to go. Then we had a few years' reprieve in her teens with the transforming medication regime before the most severe challenging behaviours kicked in again during her twenties. Her autism crept up on us - hand-flapping, turning switches on & off, getting stuck - unable to transition to the next activity, repetitive questions, turning items in her bedroom back-to-front - but, because she was still sociable and affectionate, it went undiagnosed until she was 22.

Have the effects of her chromosome disorder become more marked & pervasive as she's grown? Has her epilepsy, poorly controlled when she was little, caused brain damage? Should she have had the triple vaccines as an infant? Did behaviour management interventions come too late? Is some of her medication making her condition worse? There are no answers and it's a case of trial & error. For now, we make the most of the good days and continue to work on the rest.




Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/

Small Steps - A #Special Saturday Post

Over the past few weeks Chrissy's affairs have taken precedence over everything else - but it's been worthwhile.

I had a positive meeting with her new psychiatrist & was very impressed that he'd taken the time to read this blog! He referred to incidents I'd written about & it was clear he'd researched her chromosome disorder. He was open-minded and interested in exploring causes of the more intense clusters of self-injurious behaviours for which no environmental trigger has been identified. As Chrissy had settled down after a difficult month, he decided to withdraw the last 15mg of her Topiramate while introducing Pregabalin. I don't know if that's why we had such a challenging time with her. Her last spell of horrendous behaviour coincided with Topiramate withdrawal & it was similarly intense here yesterday. Her diva-ish behaviour has been off the scale - she's been moaning, obsessive, demanding & irritable. We did have a lovely cuddle with her on the settee while we watched Come Dine With Me but had to hold both her hands the whole time, effectively handcuffing us to her. A great way of getting our individed attention! She then kicked off again later & wouldn't go to bed until after midnight.

I'm worried about how Chrissy will cope at Xmas, particularly as last year was so awful. She will obviously be here with us on Xmas Day, as she's always been, but when more of the family visit on the 28th it could be apocalyptic. Her stripping is particularly difficult to manage when there are young men & children around, as you can imagine!

Anyway, on a different note, another positive outcome came from the 1st stage of our appeal process re the long-standing funding dispute between the local authority & NHS trust. The dispute has caused a number of problems that I can't elaborate on publicly at the moment but our biggest recent concern was that no one was taking care management responsibility. We need to plan for Chrissy's discharge from hospital & the type of 'bespoke service' she needs may, according to estimates from the Challenging Behaviour Foundation, take about 12-18 months to organise. So, although she needs to stay in hospital until meds changes are completed, we need to start planning now.

At our appeal meeting the NHS trust admitted to 'horrendous' errors in the healthcare assessment process, & offered to start from scratch with a retrospective assessment. This means combing through Chrissy's records from the past three years. I was advised that to see those records, I'd have to apply to the Court of Protection for Deputyship, which puts my responsibilities for Chrissy on a more legal footing. I filled in all the forms, so I could make decisions re property as well as health & welfare, as she may end up with a home of her own. The forms are tedious & repetitive, & took me nearly a day to complete but they're done now. I'm sure it will be worth it in the long run!



Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/

A #Specialsaturday Post - Uncertain Times & Embarrassing Moments

The meeting we had yesterday to plan Chrissy’s future care was chaotic & disheartening. There was a roll call of apologies for absence – people worked on different days, a ward ‘crisis,’ someone away on a training etc. One of Chrissy’s care managers was present but he has no influence as his authority are not paying for her care. No one from the commissioning authority (funding ‘without prejudice’) attended. The psychiatrist has been unable to get hold of anyone there, which means we can’t plan Chrissy’s future.

I’ve already blogged about the funding dispute that’s leaving Chrissy in limbo. It will take a long time to plan her next placement as we need to get it right this time. A robust healthcare support infrastructure needs to be in place for starters. Another placement breakdown would be disastrous for Chrissy. The appalling state she was in through the latter part of 2009 still haunts me.

The hospital admission in January 2010 has improved Chrissy’s life. She is far more stable than she was 18 months ago but these changes have plateaued over recent months and we fear there will be little or no further improvement because the institutionalised environment isn’t geared up for her autism. There aren’t enough stimulating accessible activities offered. For months we were promised sensory integration therapy (‘The missing piece of the jigsaw,’ Chrissy’s speech therapist had said in March). Yesterday we learned that there had been a U-turn – they can’t supply it as part of the package; extra funding will have to come from the commissioners - the ones they can’t get hold of!

The meds changes took months to start due to all sorts of reasons (including the funding dispute) but we can’t thank Chrissy’s neurologist & psychiatrist enough for flagging up their concerns about one of her anti-epileptic drugs, Topiramate. We marvel over how much she’s ‘woken up’ since it was reduced from 50mg a day to 15mg. She is far more aware of her surroundings, and full of quirky observations & funny comments again. Last night, I was having eyelash extensions done for a special occasion. Chrissy was in the same room, playing quietly on the computer under Ian's watchful eye. Suddenly, she sat bolt upright, & announced: 'I poo myself in the kitchen.' The lady doing the eyelash extensions froze then we both collapsed into giggles as I explained that Chrissy probably felt the urge to go but had her tenses mixed up. There have been many potentially embarrassing moments like this but we just find them endearing, entertaining & funny. It's a good sign as it shows her irrepressible personality is no longer being clouded by too much - or the wrong - medication.

Embarrassing moments are part of what makes Chrissy who she is. We welcome them back!

This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe. Please join the cause by joining the Facebook page - http://www.facebook.com/SpecialSaturday
Following on Twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturday.org/home/

A #Special Saturday Post - How Having a Special Needs Child has Changed My Life

I've already written extensively on here, & in my book & parent's perspective chapter about the bigger picture of how having a special needs child has changed my life. Here I'll just give you a snapshot....

As soon as she walked through the door yesterday afternoon Chrissy demanded 'mummy's computer.' She then took over my office & nicked my reading glasses. In the photo she's watching Andy Pandy, which she loves. 'Bye mummy!' she called, no doubt hoping I'd go away so she could hack into my laptop. Left to her own devices, she manages to delete programmes and generally cause cyber mayhem.

Cranky spells peppered Chrissy's stay but, just as I thought she was going to kick off, the mood passed & she became jolly & talkative. Yesterday evening, she sat on the settee, sandwiched between Ian & I, with her catalogues & cookery books spread out around her. She nagged us to 'find the girls' in her catalogues. We found pages of them. 'No GIRLS,' Chrissy pressed on querulously, bending her fingers back & twisting her hands together - a bad sign & an ideal time to try out her new big fat weighted blanket.

It did the trick (but we still don't know what sort of 'girls' she wanted).

'Tuck it my knees,' demanded The Diva (our new nickname for Chrissy). 'Make it square.' Then, when she was swaddled in it up to her chest she ordered us: 'Hold my hands.' Remembering how she likes pressure on the outside of her hands, I gripped one of them tightly.

Peace reigned at last. We even caught the last 10 minutes of Outnumbered, which kept Chrissy amused. She smiles with benign indulgence when we laugh & sometimes joins in - but I suspect she finds the sight of us funnier than the object of our mirth. She's very inquisitive & sometimes appears to be as intrigued by our behaviour as we are by hers.

Today, Chrissy kicked off because I wouldn't let her back on my laptop. She had switched it off & done something to our anti-virus software, which Ian had to reload. I videoed her screaming on the floor with one leg up in the air then replayed it to her after she'd calmed down. She watched, transfixed, but without expression. 'What's Chrissy doing?' I asked her. 'Crying,' she said matter-of-factly. So what did I learn from this exercise? Bugger all but it was worth a try. It might have made her realise how silly it was for a grown woman to have a toddler-like paddy....