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

Living without a Diagnosis

I wrote this piece for Women's Realm when Chrissy was 12....

Chrissy is mad about music. Last summer the whole family went to our local fete in Hemel Hempstead where a brass band was playing. Before I knew it, Chrissy had barged past the conductor and was conducting the band herself! Fortunately the musicians found it highly amusing.

This eccentric, endearing behaviour is typical of Chrissy, who finds it impossible not to start dancing if we go into a shop with background muusic. She has moderate to severe learning disabilities but I don't know the exact nature of her problems. I've never been told what to expect from her in the future, and, hardest of all for me to come to terms with is the fact that she's never had a diagnosis.

I've battled through some tough years and I know there'll be more obstacles ahead, but I've learned to enjoy Chrissy's cheerful, funny manner and to live with her violent tantrums and obsessive behaviour.

When Chrissy was born, 10 days late, there was no indication that anything was wrong. My husband and I were thrilled with our first-born. We used to call her our 'air-traffic controller' because she waved her arms so vigorously.

The first signs that something might be wrong were feeding difficulties, poor weight gain and a general floppiness. Because I was an inexperienced first-time mum, I wasn't sure what was 'normal,' but I gradually realised that something wasn't right. I was gripped by a terrible anxiety and would be awake at night wondering what it could be. Every time I talked to my husband about it, we argued, and he made me feel that I was wishing problems on Chrissy. My mum agreed that something might be wrong, though she said my sister, brother and I were all late developers. My brother didn't walk until he was 18 months old and went on to read history at Oxford University!

When I look back over the early, bewildering times, I wonder if I would have enjoyed Chrissy more if I had expected less of her. I spent ages coaxing her to do what other babies did naturally - to reach out and touch a toy, or eat something. I couldn't help comparing her to other babies around the same age who were larger and more forward than her.

After a health visitor noticed Chrissy's poor head control, she was referred to a paediatrician. By then she'd started to have epileptic seizures so she was sent for a brain scan. We were told it was normal and that Chrissy was a delayed developer. When I asked questions I felt that I was being dismissed as a neurotic first-time mum.

Whenever Chrissy was admitted to hospital with her uncontrollable seizures, I'd sneak a look at her notes, wondering if they contained clues as to what doctors suspected was wrong. I remember reading one note by Chrissy's paediatrician: 'Mrs Gregory came to see me, worried as usual. Asked again if her daughter was handicapped.'

I went through a sort of grieving process. Sometimes I felt angry; at other times I would cry myself to sleep. I began to read books to try to diagnose Chrissy myself. I read one book about a family coming to terms with having a baby with Down's Syndrome, and began to think how different it must feel to have a label given to your child early on - but then I realised that many children with recognised syndromes don't follow a guaranteed pattern of development. Some children with Down's Syndrome have profound learning disabilities with life-limiting health problems while others are very able and healthy. It was some comfort to learn that, for about 40 per cent of children with learning disabilities there is no known cause or name for their set of symptoms.

After much persistence on my part, Chrissy was referred to the Great Ormond Street Genetics Clinic when she was nearly two. The geneticists tried to answer every question I had and gave the impression that they had all the time in the world for us. Every inch of Chrissy's body was examined, and all abnormalities, such as her weak muscle tone and short stature, were logged into a central computer to see if they were indicative of a certain genetic condition.

Two syndromes were suggested as possibilities but chromosome tests were needed. I looked through medical books and couldn't see how her particular characteristics fitted either syndrome and, in due course, we were were told that Chrissy's chromosomes were normal.

My search for answers continued. We were seen about every four years at the genetics clinic. One geneticist thought Chrissy was similar to children he'd seen with something called Smith-Magenis Syndrome. When I read more about these children I thought I'd finally found out what was wrong - Chrissy shared so many similarities with them, such as prolonged periods of distress and her way of flapping and clasping her hands in a strange manner - but the tests showed that Chrissy didn't have the characteristic deletion on a chromosome that's associated with Smith-Magenis Syndrome.

At this point, I stopped searching for answers. I saw how fruitless it was to be so fixated on the idea of a diagnosis - after all, we'd already learned to accept Chrissy's problems and love her as she is.

Our day-to-day life can sometimes be fraught. It's difficult for us to go out as a family because Chrissy finds new environments unsettling. Sometimes I dread taking her out on a routine outing - say to buy her new shoes - because her behaviour can be so unpredictable, and her siblings get upset when Chrissy barges into their rooms uninvited or breaks their possessions. As she grows older her outbursts become more difficult to manage. She still has prolonged periods of distress with no apparent cause. We call them her 'screamings' and they can last for over two hours. Sometimes she'll have two or three in one day and will deliberately harm herself. No one can tell me why she behaves like this and, although I've dealt with them for years, they still upset me.

Yet, despite the challenges Chrissy's brought us, she has shown us a unique way of looking at the world. I love it when I see Chrissy sitting with Alex or Jamie, singing along to music tapes, or when she copies people's facial expressions or says something to make us laugh. Whatever her problems, we're very lucky to have Chrissy as part of our family.



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

Why I Felt I HAD to Share Our Story

My book reviews have finally appeared on Amazon. I saw them 10 years ago when 'Bringing Up a Challenging Child at Home ' was first published, so no nasty surprises there! My book includes a brutally honest account of how I felt at the time of writing, and I spared no one! It was very cathartic but I'd be a little more circumspect if I were to rewrite it now....

When I first discovered that Chrissy had learning disabilities, I assumed the next step would be an appointment with a specialist who would tell us the exact nature of her problems – a diagnosis. I expected to be given some idea what ‘mental age’ she would reach, and what obstacles we might face in future. How wrong I was! I gradually realised that medical professionals had no more idea than I did about how to treat Chrissy’s condition.

During her childhood I felt isolated and terrified - traumatised even - by the violent self-injurious outbursts I was dealing with on a daily basis.

I believed that Chrissy’s problems were unique or at least very rare. Now I know that there are many other families like ours living with a cherished child, whose behaviour is a nightmare to cope with. Our love for our children remains undiminished when confronted with behaviour we find abhorrent but sometimes that love isn’t enough. Our home becomes a war zone and we can no longer function while living together as a family.

Divorce is all too common in families like ours and it's often the mother left to cope alone. Ensuing social factors, such as poverty, may contribute to the child's behavioural challenges and compound the parent’s feelings of isolation.

If took 15 years for family life to gain any semblance of normality and to find ways to cope with the challenges Chrissy presents. My search for answers planted the seeds for my book and a career in journalism. I had to tell Chrissy's story, and my research led to a fascination with complex and misunderstood medical conditions like hers. I've had a number of related health and human interest features published in magazines and newspapers.

I wrote my book in 1999 when the cause of Chrissy's problems was still unexplained. My target readers were other parents in similar situations and professionals working with families like ours. I longed to reach out to other mums like myself, which is why I get so much out of interacting with you all now, and I passionately believed that the professionals needed to know what it was like living on the front line. There was a big gap in the market for a book like mine as there were plenty of medical books about challenging behaviour in clinical settings but not in the family environment. Jessica Kingsley Publishers and BILD (The British Institute of Learning Disabilities) were both interested in publishing my book. I chose Jessica Kingsley because I thought it would help me reach a broader readership.

Writing Chrissy’s story helped me to make sense of our difficult journey and led to wonderful revelations. I realised how much I had learned about acceptance and unconditional love. I discovered personal strengths (and weaknesses!) I never knew I had. After spending years in the thick of it, by the turn of the century I had the space to appreciate Chrissy as she is – and marvel over her. She has a great sense of fun and makes us fall about with her quirky sayings and observations. She is generous with spontaneous smiles, affection and cuddles, and opens our minds by showing us a uniquely different view of the world.

When my book was published, I had stopped grieving for the ‘perfect’ child I thought I'd had and learned that life’s greatest gifts come in the cleverest disguises.


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Festive Challenges and Autism Tips

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

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

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



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Letting Go: When Love Isn't Enough

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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




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Invisible in the Community

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

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

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

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

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

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

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

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




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#Special Saturday - How does having a child with additional needs affect your family?

It all started so well...

I asked my youngest daughter, Alex, how she felt her life had been affected by having Chrissy as a sibling. She shrugged & said: 'I've never known any different.' She agreed that it had forced her and her brother to grow up too quickly and take on responsibilities beyond their years. Many instances that illustrate this are in my book 'Bringing Up a Challenging Child at Home.'

I felt guilty about having two more children when Chrissy was so demanding but I had no idea how severe her needs would be - caring for her got more challenging as she grew older & bigger. You expect toddlers to be a handful but Chrissy never grew out of that stage. Living with her extreme, unpredictable, violent mood swings day after day took its toll on everyone. Her siblings had to take second & third place & no child should have to do that. I've had to dig very deep in order to cope, & I've no doubt her siblings & my husband have too.

We’ve always tried to involve her in family activities and do things that typical families do but it's a gamble. You can't predict how she'll react. Many family outings have been cut short due to Chrissy's unpredictable outbursts but we have had some resounding successes, although admittedly not recently.

What happened at the weekend gives a snapshot of how Chrissy’s needs affect family life. She was in a jolly mood & we’d seen none of the major SIB of the past few weeks. She was engaging with activities we did with her, & was very inquisitive and chatty, delighted to have Alex around, who was home from university. On Friday evening, as I sat holding Chrissy's hand, I felt a gentle caress on my thumb. I looked at her in amazement and she was smiling benevolently at me! Chrissy hugs me but she's never caressed me before. On Saturday morning someone called round selling poppies for Remembrance Day. 'Which one would you like?' the seller asked. ‘A chocolate one,' said Chrissy, making us roar with laughter.

The signs were good and it was such a beautiful autumn morning, I decided to take Chrissy to the village shop, about 1/4 mile away. The photo shows Chrissy just after we'd set off. She seemed happy enough walking alongside me but kept asking 'are we having sandwiches for lunch' & swapping which of my hands she held. Halfway there, she got so obsessed by swapping hands, we got stuck. I tried to turn back but it was already too late - she threw herself on the pavement screaming & rubbing her nose until it bled. My stomach was in knots as I feared she'd strip off. I called Ian & he brought the car round to rescue us.

I shouldn't have risked it really but I still get fooled when Chrissy is calm. If I stopped trying to take her out I’d be giving up on her. Episodes like this remind me of the difficulties of balancing family life with Chrissy’s needs when she lived with us - but, as Alex says, we never knew any different.


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