Christmas 2012

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

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

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

It didn't bode well.

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

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

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

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

Chrissy had other ideas.

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

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

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

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

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


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

#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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The Opiate-Excess Theory & Naltrexone

On Tuesday I had an emotional meeting with Chrissy’s psychiatrist and psychologist. My main concerns were that progress Chrissy has made in hospital has plateaued and that her self-injurious behaviour is worse than ever. I have described this behaviour in previous posts so won’t go into details again here. The following link gives excellent information on self-injury, covering biochemical causes that we believe are the predominant causes of Chrissy’s self-harm.

http://www.autism.com/ind_self-injurious_behavior_treat.asp

When Chrissy was 14, she had been prescribed low-dose Naltrexone, an opioid-blocker normally used in higher doses for people with drug and alcohol addictions. Some people with learning disabilities, including autism, may gain a ‘high’ from self-harming as the body releases endorphins, which bind to the same receptors as heroin and morphine. Naltrexone removes the ‘rush’ generated by self-injury, so there is no longer anything to gain from it. Then, Chrissy’s doctor had been very enthusiastic about Naltrexone – an added benefit was that side-effects were thought to be minor and only occur in about 10 per cent of people.

After the introduction of Naltrexone Chrissy’s outbursts became shorter with minimal self-harm. Two years later, a different medical team, who had no other patients on Naltrexone, gradually withdrew it to see if it really was having beneficial effects. Chrissy’s self-harm escalated dramatically & when Naltrexone was re-introduced the self-harm and screaming outbursts reduced significantly again.

Five years later, Chrissy’s platelet count dropped dramatically and she was taken off Naltrexone and Prozac – as they were thought to have caused this rare adverse effect over time. It’s such a shame that what appeared to be ‘wonder drugs’ for Chrissy had to be withdrawn. The self-injurious behaviour and prolonged outbursts came back with a vengeance and no effective substitute has been found since. We’d already tried the gluten and casein free diet as these proteins, mainly found in wheat and dairy products, can also have an opioid excess effect on susceptible individuals. The diet had made no difference to Chrissy’s behaviour and, again, adverse effects had meant we’d had to discontinue it – she became anorexic.

Now, we are in the hands of Chrissy’s medical team. We’re not looking for miracle cures – just for Chrissy to get her life back.

Autism & Saying No

'You are NOT going to be one of those autistic kids who does exactly as she pleases & disrupts the whole household!' I bellowed. Chrissy had been loudly demanding food all evening & had then gone rummaging through my larder. After dinner, she triumphantly claimed a pack of creamed coconut & a jar of peanut butter, then gathered the accoutrements of another meal around her. She has been very unsettled & could not accept that meal-time was over. I couldn't distract or divert her - she was obsessed with getting more food. When I removed the offending items & put them away Chrissy was furious, & took to the floor for the fourth time in two hours. Most of her outbursts this evening have been over not getting her own way. Again, we could see by the fresh bruises & abrasions on her body that it’s one of her difficult phases, not something that has only just come on. The lack of progress that has been made in changing these behaviours is depressing. I can't imagine a day that we will be able to take Chrissy out anywhere again but I have to stay optimistic. The meds changes have stalled for various reasons but I remain hopeful that there will be light at the end of that particular long dark tunnel.

Later on, this evening Chrissy gave me one of her sun-bursting-through-clouds smiles & I felt guilty that I'm not more saintly towards her when she only comes home once a week. Some weeks it's much easier to don a halo than others....

Special Saturday - Music

Trying to think of a way to link my post to the theme of this week's Special Saturday made me realise that Chrissy doesn't enjoy music like she used to. A lively beat was irresistible to her & she had a great sense of rhythm. I can picture her now playing with her keyboard, her whole body responding rapturously to the beat. She's gained so much weight on her meds that she rarely dances now, & then, only for short bursts. She still has rhythm but it's sad that her enthusiasm for dancing & certain types of music has waned. Another bit of Chrissy on my wishlist for meds changes to give us back.

We've had a mixed evening with Chrissy. She started off calm but kicked off after one mouthful of dinner (which she spat out). I was not amused - there's nothing worse than carefully preparing a meal then having it disrupted for no rational reason! She calmed down after about 15 minutes & ate the lot quite happily. I wonder why food is such a trigger for 'behaviours' in people with autism...?

Our search for a diagnosis

Read our search for a diagnosis story on Swan's website http://t.co/GQ82FyI http://www.blogger.com/img/blank.gif

Does Autism get Worse with Age?

I was catching up with an old friend whose son has autism. She said his autistic traits have got worse with age & his life is empty & meaningless. He spends all day ripping up bits of paper & 'stimming' despite being in a specialised single service unit with lots of involvement from his family. Her story is depressing & rings alarm bells for me. Chrissy's autistic traits appear to have intensified with age & have become more entrenched, despite, like my friend’s son, receiving specialised services. I say ‘appear to’ because I’m not sure whether we unwittingly suppressed Chrissy’s autistic traits when she was a child by riding rough-shod over them! Because we never knew that she had autism then, we either dealt with her tantrums and challenging behaviour as naughtiness or reacted with bafflement.

Did specialised help come too late for Chrissy – and is it not specialised enough? Are her medications contributing to her autistic traits becoming more marked? Now that we surrender to the awesome power of her autism, does she feel less constrained and no longer need to ‘pretend to be normal?’ (If it’s the latter, the freedom to be herself doesn’t seem to be making her any happier.)

My research on the subject indicates that autism is not degenerative; children & adults with autism should continuously improve, especially if they receive specialised, individualised services. Maybe there are other factors at play – autism has many different causes and comes in many guises – Chrissy also has epilepsy and an underlying chromosome disorder. Undoubtedly, some children stay the same, get more frustrated as the years pass or deteriorate due to other contributory factors, but some do get better (& calmer) with age.

Special Saturday - My Special Needs Child is Amazing Because....

....she managed stay calm most of the evening.

Chrissy often struggles to stay calm for all sorts of reasons, including routine changes or transitions from one activity to another. This evening she allowed me to gently squeeze her hands & give her hugs to address her sensory needs (& because we both enjoy the physical contact). She had only one very short outburst while waiting for her dinner & for her stepdad to come home from work. She was able to tell me what colours were in the washing I was hanging out, & what foods we were preparing for our meal. She also managed to participate with food preparation. She only drove her sister a little bit crazy when she played DVD's on her computer when she was trying to sleep (she's got tonsilitis). She laughed with us as we watched 'Little Fockers' this evening, & settled in bed after only two turns of the pillow & one 'squaring' of her blanket. One of Chrissy's magical evenings :-)

"Special Saturday" was set up to spread awareness of the needs, feelings and accomplishments of children and adults with special needs or http://www.blogger.com/img/blank.gifautism.http://www.blogger.com/img/blank.gif

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Animals, Bedtime Rituals and Autism

Just Chrissy & I this evening as Ian, her stepdad, has gone to pick up my youngest child from uni. I managed, by a combination of knowing when to be firm & when to indulge, to keep the peace until 10pm.

Anticipating what Chrissy will do next is exhausting. I left her looking at 'toast & jam' in the kitchen equipment pages of her Argos catalogue to get something from another room. All was quiet. Then she came in & told me she had 'kicked' the cat, 'hurt' the cat, & said something I couldn't grasp about the cat's tail. It didn't bode well.

Our two cats were nowhere to be seen for a while. Then they eventually slunk back into the house looking wary but unharmed. Chrissy either ignores them, notices details about them ('look at cat's necklace' when it had a new collar) or torments them when she gets the chance, sometimes playfully, sometimes suddenly pulling their tails & alarming them. She knows it’s wrong on one level because she grasses herself up – she’s totally guileless – but I suspect that she is also entertained by our reaction. When she's in that mood the cats normally give her a wide berth & she may have been saying she'd hurt them before thought became deed. She sometimes says she's done something, ie wet herself, when she wants to do it, ie go to the toilet. She is confused by tenses & sequences of events.

Chrissy was intent on further mischief by then & went into the kitchen to demand 'grey cup,' which means a glass tumbler. I use plastic cups as she's prone to throwing them when she’s agitated. My refusal to let her anywhere near a glass tumbler resulted in her first outburst of the evening. It was relatively mild, lots of guttural roaring, hair-pulling & hand-biting - it didn’t progress to stripping off & running around the house, as it did last week. She was over-tired I think & undergoing meds changes that may be making her feel strange.

Once she calmed down I managed, aided by symbols for 'clean teeth' & 'sleep' to lure her upstairs to her bedroom. We then had a great fuss over her 'cushions' - she asked me to turn them over several times - & her blanket. I haven't figured out what the issue is with her blanket. She kept saying ' do my cover.’ I pulled it up & tucked it over the top of her duvet so she could hold it, & settled it around her but she kept on. 'What exactly do you want me to do with your blanket?' I demanded in exasperation. 'Make it square,' she said. I did my best to comply but I'd made it square & neat over her anyway. She eventually settled down & I asked her if she was happy with it. 'Yes,' she said, allowing me to kiss her goodnight & leave her room.

Now I can hear her in bed repeating 'do my cover.' This happens during the night too. I’ve just gone through the whole pantomime again with her, tucking it this way & that, & she’s still repeating ‘do my cover/do my blanket.’ Bloody maddening. Need a solution....

Another 'Genetic Twin' with 1q21.1 Microdeletion

Check out this great website by another mum with a child like mine:
www.1q21-1microdeletionsyndrome.weebly.com

Medication and Autism

Chrissy has been having an unsettled couple of weeks for no obvious reason. I was concerned to see that two Paracetamol three times a day have been added to the long list of medications she's on. Since she's been in hospital there has been an increase in the number of prescribed medications rather than the decrease I'd hoped for. She has been on Movicol, a medication for constipation, for months now. Chrissy has never suffered from constipation at home, but medical professionals have advised us that she has shown symptoms on the ward &, like many of their patients, becomes very irritable when she needs a poo, & Movicol is an exceptionally gentle laxative without unpleasant side-effects. I have asked several times how much longer she needs to be on it but have been advised that it should continue for the forseeable future as stopping it would make her more irritable/cause discomfort. I want further reassurance that this is not a case of medication overuse & will mention my misgivings again.

Chrissy is also on Epilim & Topiramate for epilepsy but Epilim has been increased for withdrawal of Topiramate; her psychiatrist & neurologist don't like giving Topiramate to people with learning disabilities as it can worsen behaviour problems & increase confusion. She is on Quetiapine (an antipsychotic) too. It was started after she had nasty side-effects from Risperidone, the first-line antipsychotic given to treat irritability & behaviour problems in people with autism. Quetiapine initially increased Chrissy's irritability & triggered a period of unmanageably violent & self-injurious behaviour, & I see no evidence of any benefit now. It is on the list of drugs to be reduced or withdrawn. Then Prozac was introduced, which seemed to take the edge off - Prozac had worked well for her in the past alongside Naltrexone, an opiate-blocker that had eliminated Chrissy's self-injurious behaviour. The two together had dramatically transformed Chrissy's life when she was 14. We had been able to take her out & about anywhere, even on holiday to Disneyland (Now I can't even take her to the village shop.) but, ultimately, after several years, this medication regime had led to a life-threatening plunge in platelet levels. Doctors had withdrawn both drugs & only Prozac has been re-introduced, albeit at a lower level than she had been on previously. A further complicating factor is that Epilim can reduce platelet count in susceptible people too. The platelet problem may have been caused by cumulative effects of these drugs over several years. Chrissy also takes Cerazette, the contraceptive pill, as she finds the mess of periods & PMT unbearable, & fish oils, a natural supplement for brain health.

I worry about interactions between medications, as well as their individual side-effects & the fact that Chrissy has a history of adverse drug reactions. Chrissy certainly needs medication - I doubt that 'in the raw' she would survive because her epilepsy naturally occurs in clusters with very little recovery between each seizure. I'm thankful that anti-epileptic drugs ease her epilepsy – they don't work for everyone. As a child, before mood stabilising medications were tried, Chrissy's outbursts also occurred in clusters & could continue for hours, & exhaust her. I am loathe for Chrissy to have medications that aren’t absolutely necessary, as any parent would be. Before I’d learned that Chrissy had a chromosome disorder, I’d hoped dietary interventions could offer an alternative, reducing or even obviating, the need for anything but anti-epileptic medication, but the two we've tried - the gluten-free/casein-free diet & the few foods diet (under Great Ormond Street Hospital's supervision when she was little) had had no effect on Chrissy's behaviour. It goes without saying that behavioural intervention plans were the first approach & have been used for years.

Will we ever manage to stabilise Chrissy's behaviour again without chemically coshing her, or causing life-threatening physical side-effects? Am I chasing rainbows……?

Winterbourne View & the Question of how we care for Society's most Vulnerable Adults

I watched this shocking programme through my hands in some parts & switched off in tears when it got to the most disturbing part - a vulnerable young woman left shivering outside on the ground after being repeatedly doused in cold water by her so-called carers.

Chrissy is in a privately-run hospital like the one investigated last night. She has also lived in residential care homes. I’ve had fears, but never real suspicions, about physical abuse. However, some would argue that physical abuse includes being needlessly chemically coshed, which has happened to Chrissy. (A safeguarding meeting was held to deal with it.) Because Chrissy frequently self-harms, injuries from abuse could be easily masked - and she wouldn't have the language to report it.

The crux of the problem, which wasn’t the programme’s main focus, is the lack of effective support & treatment for complex & challenging learning disabled adults. They are there because they're exceptionally difficult to manage. As in Chrissy's case, several care home placements may have broken down, yet carers are often inexperienced & poorly supported with only the most rudimentary training. These privately run hospitals & residential homes are there to make money. The expertise that they are being paid huge sums like £3,500 a week for is insufficient & spread far too thinly across too many patients.

We need more long-stay places with a therapeutic environment for patients like these - but we must get it right. Too many council-run assessment & treatment units have been closed down, leaving an over-reliance on privately-run hospitals like the one on Panorama. In the meantime, from immediate effect, there must be unannounced spot-checks. It is far too easy to present a false picture to families and external care managers. The programme made harrowing watching but, as well as exposing evil, it raises important questions about how we care for our most vulnerable adults.

A Communication Breakthrough

People with autism rarely use communication to share experiences. Chrissy is no exception & bypassed the pointing-at-objects developmental stage. She has never drawn my attention to a new discovery she's made or engaged with me about something she's observed. Until yesterday.

On the drive home Chrissy spontaneously reached for her symbols book & began leafing through the pages. We use symbols alongside speech & basic signs to explain what's happening next but she has never used them to initiate any form of communication with us. Until now.

Chrissy smiled and made eye contact to get my attention then pointed to a symbol saying 'Chrissy is going home on Saturday.' (Every home-time day is 'Saturday' to Chrissy). She then, in turn, produced the symbol for car, another one with a stick figure labelled 'mummy,' &, finally, a symbol labelled 'football pitch.' The former made sense - she was going home in the car with mummy. The latter puzzled me. I didn't know why the symbol was in her book. It looked more like a TV set than a football pitch....Then I twigged. 'Is it computer?' I asked. 'Yes!' Chrissy beamed.

I was enchanted - by the gentle way that Chrissy had shared her thoughts about what we were doing, & by the way she'd expressed her wishes for what she wanted to do when we got home. Our interactions felt primevally human & bonding, & touched me as deeply as last week's plastic spoon incident, albeit in a different way. Both experiences have given me a rare insight into my daughter's true thoughts & feelings, & inspired me to work even harder to give her the best life possible.

The next day, seeing a new crop of bruises on Chrissy's naked body as I bathed her brought me back down to earth. Self-harm is still a big issue & she is as volatile as ever. She did, however, at one point, remove herself to her room for time out, then emerged declaring: 'I've finished crying mummy.'

Again, on the journey home, Chrissy showed me the car symbol with a smile.

Chrissy usually acts purely on impulse & she must have tried really hard to develop her reasoning & communication skills to this level. I hope it's something that her psychologist, speech therapist & I can continue to build on.

The Uniqueness of Each Person with Autism

I picked Chrissy up earlier than usual on Saturday & was told that she'd had an unsettled morning, kicking off about when I was coming to pick her up. She repeats 'is Mummy coming on Saturday?' whatever day it is, & whether I'm coming or not. Her demands get increasingly loud & shrill until she loses control, & throws herself on the floor in a full-blown outburst. She had fresh bruises on her arm & leg, & dried blood in one nostril from self-harming.

Chrissy enjoyed our drive home, listening to the radio & watching me with a quizzical smile on her face. She is as fascinated by neurotypical people as we are by her!

The weekend passed without event. Chrissy was her usual restless self, plying me with repetitive questions - 'What's for dinner? 'Where are we going later?' 'Can I have a banana?' 'Can I turn the light on?' 'What colour's that car?' (Chrissy is obsessed by colours) She fixates on one person & shadows their every step. We get stuck together in doorways, like the Laurel & Hardy revolving door sketch, & I often trip over her when I turn round suddenly.

There were a couple of outbursts but they didn't last long & there was no stripping or major self-harming episodes. The big one came when we tried to take her back to the hospital. As always, she wanted various things in her bag - a chocolate mousse, her plastic cup & a bottle of watered down diet coke, then we had to tie a bow in the bag. At the last minute she demanded a spoon (a metal one). Chrissy, like many people with autism, is extremely single-minded. Due to what happened last week over the blue plastic spoon, we refused very carefully, following behavioural management guildelines; we didn't say no, we said she could have a spoon next time she came home. We managed to get her into the car then all hell broke loose - Chrissy rubbed her nose until it bled, pulled her hair, bit her hands, all the time roaring 'Wanna spoon!' She then tried to undo her seat belt & climb in the back 'to sit with mummy.' I took her hand instead & the mayhem stopped just like that. I wish that simple technique worked every time...

I'm reading a fascinating book by Charlotte Moore, a mum of two autistic sons called George and Sam. Her boys couldn't be more different from each other, & Chrissy is completely different again. No wonder autism is so hard to diagnose!

Blue Plastic Spoons

My guilt at leaving Chrissy in a 'place like that' gnaws away at me. It started when we first received respite care. It's about institutions & what they represent - the one-size-fits-all approach, strangers paid to look after my child. 'I should be doing it!' my heart cries out. I have frequent dreams about caring for Chrissy as a tiny child again. She is Peter Pan-like, never an adult.

When medical professionals first said that Chrissy would be better off in a residential environment I doggedly refused. When she was 10 they said that we had done 'remarkably well' to cope so far but such extreme challenging behaviour needed a level of structure & consistency that a home environment could never provide. At 10! I sat & wept through so many meetings, knowing that we couldn't go on like we were but desperate not to send my child away.

Time passed & we stumbled on. Chrissy's increasing size was the deciding factor. Descriptions of our struggles to manage extreme, violent prolonged outbursts in an adult-sized person are in my book 'Bringing Up a Challenging Child at Home.'

We were very lucky to find a fantastic termly boarding school about 45 mins drive from our home. Chrissy went there from age 14-19, & loved it. I missed her terribly but never saw the school as institution-like, & she was home during weekends & school holidays. When Chrissy left school, I picked residential places that looked homely, as the hospital wards do where she is now.

But the blue plastic spoon incident was a stark reminder. Chrissy is in an institution.

She developed an obsession for taking metal teaspoons from home back to hospital. I always had to sneak them back with me as, for health & safety reasons, the hospital does not allow metal spoons on wards. I fully understand why but it was hard the first time I saw Chrissy being given a blue plastic spoon when she asked for a spoon for her dessert. She became distressed & rejected it. She has never used metal cutlery to harm herself or anyone else but, like all the other patients, she was being denied it, & her autism made it tougher for her to deal with.

That small blue plastic spoon symbolised how little control Chrissy has in her life, & the numerous small but bruising injustices & inequalities she faces due to her disability. It also highlights how actively Chrissy tries to communicate her needs. If she asks for something unusual, or develops a new obsession or ritual, we should explore what she could be trying to tell us. Although we can't always promise her the outcome she desires!

Perfect Days

What a fantastic mood Chrissy was in tonight. No outbursts, not even a hint of one. I heard her clapping & cheering when I arrived to pick her up. I was told it was because she'd heard I was coming. When we got home she was chatty & playful, laughing at & interested in the antics of our two cats. Anxiety-related autistic traits were subdued - there were no bedtime rituals & minimal obsessive/compulsive repetitive questioning.....No, not a wonderful dream or wishful thinking. That's the enigma of Chrissy. It's a privilege to share these inexplicably 'perfect' times & they light up our lives.

Chrissy's Epilim has been increased as part of a programme to withdraw another anti-epileptic, with the ultimate aim of reducing the number of different drugs she is on. Could that be why she seems so joyful & relaxed? Experience tells me not....

Severe autism & social inclusion

Increasingly, we are finding that outbursts occur when Chrissy can't make us understand what she wants. If she sets her mind on something she NEVER gives up!

Problems at mealtimes are a recurring theme. Last night she couldn't wait for her dinner & kicked off for half an hour, screaming & self-harming on the kitchen floor. I wonder if we should change the time we pick her up so that she has dinner almost immediately after we arrive home. I could plan pre-prepared meals.

Bedtime issues have been resolved by us adhering to Chrissy's rituals - these include sleeves, no matter how short, rolled over, 2 pillows with top one being turned over twice, & blanket pulled up so Chrissy can feel it over the top of the duvet....It just took us a while to understand exactly what Chrissy wanted.

This morning Chrissy kicked off because she wanted a 'remote control' for her laptop. In the past, we worked out that 'remote control' meant mouse. This time, we finally figured out that she wanted the remote control for her portable DVD although she soon realised it didn't work with her laptop.

Chrissy has periods of repeatedly asking for something & we struggle to work out what it is, then there are periods of relative calm alongside magical moments - this morning when Chrissy got up she spontaneously asked me for a cuddle & last night she made funny noises that made me laugh, & kept repeating them to amuse me again - a charming, playful side we love.

I felt sad to see how many injuries she had from self-harming. A toe is so black & blue I cringe to look at it yet it doesn't seem to bother her at all, ditto a raw looking scuff mark on her shoulder. Her nurse told me that her behaviour has worsened since the arrival of a new patient on the ward - another severely autistic lady who is also very challenging. I was reassured that Chrissy isn't afraid of the other patient; adapting to another change in her environment could be a trigger but it could be coincidence - Chrissy has also emerged from a cluster of epileptic seizures. Sometimes she is calmer during periods of increased seizures - a pressure cooker effect recognised by epilepsy specialists.

Chrissy's mercurial moods are an integral part of her & massively inhibit social inclusion now she's an adult. Her environment is probably as good as it will ever be & obviously that plays a key role. What's so heart-breaking is that we have seen her much more stable than this for long periods with the addition of an effective drug regime. The question is can this ideal ever be achieved again & how much longer do we have to wait to find out?

The Royal Wedding through the eyes of someone with autism

"Is she going to bed?" Chrissy said when I asked what she thought of Kate Middleton's wedding dress! Chrissy watched the royal wedding highlights with me in the evening & stayed reasonably engaged, cuddling up to me on the settee, throughout. She seems drawn to churches & thinks all priests & religious men in robes are called 'John' because Father John was one of her favourite people at St Elizabeth's, Much Hadham, Herts., a fantastic termly boarding school run by nuns that she attended from age 14-19. She enjoyed going to church at St Elizabeth's when she was calm enough to attend.

I found myself in floods of tears watching Kate Middleton's proud dad walk her up the aisle - it hit me anew that Chrissy would never get the opportunity to marry or fall in love. I have another daughter who has those choices in life but my grief wasn't about me, it was about Chrissy & the opportunities denied to her.

At home here yesterday, Chrissy kept remarking on the sound of bells that rang out from our local church. It was hard to tell whether she enjoyed the sound or found them irritating. Chrissy can't express how she feels. She has a wide vocabulary but much of it is learnt, although she can appear to use relevant phrases, such as 'it's sunny outside.' Trouble is, she sometimes says that when it's raining & overcast. If you check her & ask: 'Is it sunny or raining,' she usually gives the right answer - she just trots out repetitive words & phrases without thinking.

We have solved the bedtime problem touch wood :~) The hospital told me that Chrissy has two pillows there. I tried two at home & she was fine. It's interesting that she didn't realise she needed two pillows to feel comfortable, as she will often ask for two of everything else. Such a simple & easily avoidable misunderstanding that had been causing so much aggro! It is very easy to over-estimate Chrissy's abilities to express her needs because she appears to have better communication skills than she actually has. If we had given Chrissy the choice of one or two pillows, she would have chosen two. We just need to become better detectives I guess.

Rare chromosome disorders, learning disability & social class

I got chatting to a very well-heeled lady about having a child in the family with a rare chromosome disorder. She took great pains to impress upon me that no one in her family were carriers & that if the baby was going to be intellectually disabled effects would only be mild because the baby would 'have the best.'

Chrissy's chromosome disorder was de novo (spontaneous) - neither I nor her dad carried the micro-deletion. It was just a one-off, an accident that could have happened to each & every one of us. Does this make us somehow 'better stock' than other families where one parent does carry the micro-deletion? NO! Yet I got the uneasy impression that in this lady's eyes the carrier issue is a big deal for all the wrong reasons. I also wondered how stigmatised & embarrassed the family would feel if the baby were to grow up with significant learning disabilities. As if you can control the severity of intellectual disability by throwing money at the best physios, occupational therapists, psychologists etc.

People need to wake up to the facts: rare chromosome disorders & learning disabilities cut across all social classes.

Are you Mummy....?

....the question Chrissy asked me today while I was running her bath. She answered it herself - 'Possibly.' A learnt, meaningless word but funny & fairly appropriate nonetheless. Chrissy often does this - asks a question then answers it, & sometimes goes on to conduct a hilarious surreal conversation with herself using snatches of words & phrases overheard in others' conversations.

On the drive back to hospital Chrissy spent about 5 minutes shouting in my ear: "Are we going for a drive?!" Mozart's 2 Pianos didn't work but 'Forget You' by Cee Lo Green did (this time!). She suddenly stopped shouting & started dancing in her seat, her face wreathed in smiles. She can make you despair/furious/sad/exhausted one minute then switch moods in a flash & make you smile/laugh/feel full of love & gratitude that you have been blessed with such a child. Loving someone like Chrissy is an emotional roller-coaster as her mood swings are so all-consuming & unpredictable that you can't help mirroring them.

When I dropped her off, without a backward glance, she headed straight for the kitchen & food. So different to when I picked her up. Then, her face had flushed at the sight of me & she'd hugged 2 members of staff, laughing uproariously with joy....