Sharing stories

Good Care Planning & Changing Needs

2012-03-03T10:14:00.000-08:00

'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.

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Can children Grow out of Autism?

2012-02-24T06:23:00.002-08:00

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!

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Chrissy's Very Special Nana

2012-02-18T02:52:00.000-08:00

Chrissy, her nana & little sister, Alex

You may remember I posted a photo of Chrissy with her nana on here a couple of weeks ago. Although mum's 80, she thinks nothing of hopping into her car & driving down to us in Hampshire from her Hemel Hempstead home. How we took her visits for granted! I call her my Fairy Godmother because she lavishes TLC on our garden and sprinkles fairy dust around our home. She sees everything through an artist's eye - she made us exquisitely detailed cross-stitch pictures that represent miniatures of our kitchen & bathroom, & at Christmas, she adds special touches like decorating our old oak stairs with holly and ribbon as only she can. She tries to open our eyes to the beauty she finds in everyday things that we don't notice - like a perfect bloom in our garden or one of our cats lit by a shaft of sunlight. She lives for her family, with gardening coming a close second, and she gives the best advice without interfering or being overbearing. I couldn't have managed without her support during Chrissy's early years. Mum, understandably, hasn't been confident for a long time about managing Chrissy on her own, but often used to pick up the slack in other ways by having Chrissy's siblings during hospital dashes or other family crises. Mum's moral support and sympathetic ear has been invaluable during the recent challenges we've faced with Chrissy. She has a lively interest in everything that goes on in the world and we’re so proud of her for taking the plunge and learning to use a laptop. She has even got herself a Facebook profile to keep up with her seven grandchildren! She acts like someone far younger than her years - but we took her fitness for granted, oblivious to the fact that inside her body a silent killer was at work.

Several years ago she had stents fitted to open up blocked coronary arteries. Problem solved we thought – but, on and off, she continued to get chest pains. All tests were clear until two weeks ago when mum was rushed into hospital after suffering prolonged chest pains. A blood test showed she'd had a mild heart attack and further tests revealed that she needed urgent life-saving heart bypass surgery followed by a further op to unblock a narrowed artery in her neck. Our fears grew as the number of complications rose. As anyone who's had a seriously ill dearly-loved family member knows, you’re on an emotional roller-coaster and feel utterly helpless. Like many mums of disabled children, I've become a medical expert on Chrissy’s health issues but I don't know the first thing about heart problems like mum's. It's been another steep learning curve.

Mum had the bypass last week and, thank God, all went according to plan. Then on Monday we had a major scare that resulted in my brother, sister and I rushing to her bedside, thinking she’d breathed her last. Her medication was adjusted and we're now happy that she's on the road to recovery. Thanks to her surgeon's skill, it looks like we'll have several more precious years with her, during which she'll be thoroughly spoilt!

Chrissy has no idea that her nana’s ill. If she visited her in hospital she may, due to the context, fleetingly comprehend the situation on a superficial level. Then she would learn the rhetoric 'nana's sick,' the same way she learnt 'daddy's in heaven' when she asked about her dad after his death. In any case, a hospital visit is out of the question. Mum and I giggled at the thought of the cardiac ward carnage she'd create. All those tubes, dials, bleeps and flashing lights to play with!

Mum has managed to smile even during the darkest moments of her ordeal but then irreverent humour abounds in our family. Like the time several years ago when Chrissy went through her 'Tourette phase.' (#Specialsaturday followers may recognise this story so apologies to them for repeating it!) Alex had broken her arm, & mum and I had no choice but to take Chrissy with us to A & E as there was no one else to look after her. Once there, Chrissy kept shouting ''@uck it!' at the top of her voice. At one point, mum & I had to walk with her past a crowded waiting area. We chivvied her along, praying she wouldn't say it - but just as we reached the last row of seated people, she let rip, & we collapsed with helpless laughter. Chrissy & hospitals don't mix. She will be none the wiser about her nana's close call - but sometimes ignorance is bliss.

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How we really feel about our Children's Genetic Blips

2012-02-03T13:51:00.000-08:00

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....

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Angels & Demons with a Sprinkling of Selfish Tears

2012-01-27T09:19:00.000-08:00

Chrissy with her lovely Nana

As I left Chrissy at the hospital today, her image is etched on my brain. She's screaming, nose bloodied, stark naked, on the floor of the nurses' office where she'd flung herself. Around her, nursing staff & I matter-of-factly deal with the handover. Another patient wanders by and asks me if my hair is naturally blonde. She doesn't bat an eyelid at the ruckus.

I really need the catharsis of my blog at times like this.

If last week Chrissy was an angel, this week she was a demon! The signs weren't good when she came home yesterday afternoon. The bridge of her nose is branded by an open wound. She's been attacking this area by rubbing it violently in outbursts then picking the scab for some weeks now. It had all but healed last week. Now it looks angrier than ever.

My mum was staying with me while Ian was away on business. I so hoped that she'd see Chrissy as lovely as she'd been for me last week. It wasn't to be. Chrissy's obsessions over food inevitably spilled over into a violent meltdown & off came the clothes. I don't know if it's a sensory thing or rage or what - but stripping has been occurring with many of her take-to-the-floor outbursts for years now. The impact on her life is massive, as you can imagine. Stripping effectively imprisons her as it's so socially unacceptable. You can wrestle with her to try to stop her from tearing her clothes off but it simply fuels her frenzy.

We did have some sweet times too. Chrissy pointed to the word 'mousse' on the of lid of her chocolate mousse, and said 'mouse.' Mum and I laughed and corrected her - 'look, it's got two wiggly S's' I showed her. She pointed at the lid again with a triumphant 'Chocolate mouse!' After dinner Chrissy settled down for a cuddle but her mood remained unsettled.

This morning she kept shouting in my face: 'I wanna banana in my bag!' (I kept showing it to her and letting her feel it so she knew it was there but she continued to bellow at me. I lost it, & shouted back 'shut the f up!' In an instant, I was racked with guilt. I'm so not a patient person but I try my utmost to stay calm with Chrissy as I know she can't help it. She signed & asked sweetly: 'Are you cross mummy?'

The old emotional roller-coaster kicked in again, and tears threatened, but it's hard to feel any emotion for long while Chrissy's around as she keeps me on my toes constantly. I was too busy dealing with the practicalities of getting her to focus on taking her tablets & eating her breakfast, while praying she'd stay calm enough to get into my car for the half-hour drive back to hospital.

As we were about to leave a delivery man turned up at my door and, seeing Chrissy's nose, asked her: 'How did you do that?'

'She did it to herself,' I interjected. 'She's got learning disabilities & she self-injures.' He dumped the parcel & off he went. I wonder what he thought as he drove away? What else could I have said? 'Mind your own business?'

As soon as Chrissy arrived back at the hospital she starting demanding food, just as she had when she'd arrived home. When she's in an obsessional, instant gratification mood you've just got to ride out the storm. The clothes came off and the screaming started again. I could hear her as I climbed back into my car, & felt guilty again - for sighing with relief that someone else was now dealing with it.

On the drive home, I allowed myself the luxury of a few tears. I could see no positives in what's happened to us. It was every mother's worst nightmare. A voice inside my head wailed: 'What happened to my beautiful baby?' Thank God those disturbing feelings soon evaporated. I just needed to throw myself a little pity party.

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Person Centred Planning: A Queen Hit & Hidden Meanings

2012-01-20T02:45:00.000-08:00

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.

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Epilepsy & Behaviour

2012-01-14T02:41:00.000-08:00

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.'

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Why I HAD to tell Chrissy's story

2012-01-04T08:28:00.000-08:00

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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2012: Are good times here to stay?

2011-12-30T10:21:00.000-08:00

Chrissy & family at Christmas

Despite my fears, I couldn't have wished for a better Christmas with Chrissy. For the first time in years, she sat down calmly to eat Christmas dinner with us and joined in with family celebrations on the 28th. There were 16 of us at one point but Chrissy wasn't fazed by all the noise and chaos. She played sweetly with her seven-year old cousin, who led Chrissy by the hand to search for her Snowman book. She laughed with us and amused us all with her colourful observations. Sometimes Chrissy randomly shouts out what she sees or just gives colours: 'brown clock,' 'grey mirror,' 'red Father Christmas,' 'yellow! green!' She sat quietly smiling to herself as we played an uproarious game of Trival Pursuit; she played peek-a-boo with her cousin through the hatch between our dining room and kitchen. She was interested in and delighted by everything that was going on around her, and had us all at her beck and call!

Unpredictable as ever, Chrissy had one major outburst on Boxing Day - paradoxcically, the only quiet day where she wouldn't be overwhelmed by sensory stimuli. It put paid to my plan to take her for a short stroll. She also had an irritable spell on Christmas Eve, so I slung her weighted blanket over her. She squealed and flapped with delight. It worked a treat! The next night when she showed the same behaviour, I tried the weighted blanket trick again but she screamed: 'Take it away!'

So Chrissy is still very demanding, volatile and unpredictable but the good times are as wonderful as they ever were. I think swapping Topiramate with Pregabalin (or simply withdrawing Topiramate) has resulted in these changes but it's too early to tell for sure.

Ian and I have been blaming the problems of the past three to four years on Chrissy's meds not suiting her. It's been a MASSIVE battle to get healthcare professionals to listen and take action instead of blaming 'unsuitable' environments she's been living in. Now, two years after our legal fight to get Chrissy into an assessment and treatment hospital, we are starting to see light...

My sister, Sarah, summed it up with her message on Facebook: 'It was great to see Chrissy in such good form. I can't remember the last time she was so engaging. It just shows that Chrissy of old is still in there - let's hope she's here to stay.'

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Festive Challenges and Autism Tips

2011-12-24T02:07:00.000-08:00

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

2011-12-15T06:10:00.000-08:00

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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Social Exclusion

2011-12-09T02:15:00.000-08:00

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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Small Steps - A #Special Saturday Post

2011-12-02T15:42:00.000-08:00

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!

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Communication - a #SpecialSaturday post

2011-11-25T11:23:00.000-08:00

Ineffectively met communication needs are triggers for challenging behaviours. We use communication strategies akin to those suggested by The Challenging Behaviour Foundation and Jill Bradshaw at the Tizard Centre, who both kindly allowed me to use their ideas in my book 'Bringing Up a Challenging Child at Home.'

Positive statements about what a child is going to do are much clearer than telling them what they're not going to do. For example, if we say to Chrissy 'You're not going in the car, she only hears 'Chrissy' and 'car,' and gets distressed when she realises she will have to walk. The message would have been clearer to her if we'd told her what she was going to do: "Chrissy, you're going for a walk."

Abstract concepts are particularly difficult to understand. If I ask Chrissy what she's been doing that day she can't tell me. If I ask her what colour top I'm wearing, particularly if I point to it, she answers me correctly. Her verbal communication is misleading. She is able to understand simple phrases and use learned 'parrot fashion' phrases in context - called social masking.

Much of Chrissy's communication is stream of consciousness observations. She was sitting next to me earlier and looking around the room. "It's a mirror," she observed. Then answered herself with: "It certainly is." She began to list what she saw. "It's a yellow flower and trainers and brown. Home. Brilliant." *Thumbs up sign* She then turned to Ian, my husband, and asked: "You fine Ian?" "Say yes!" *Sign for yes.*

Chrissy can follow simple instructions involving up to two named objects, ie 'put your cup on the table.' Her expressive communication is limited. She can’t tell you if she feels hot, cold, hungry or sad, and will use behaviour rather than words to express her emotional needs. We use a combination of verbal, basic Makaton sign language and symbol aids to help her move through her day. Using communication strategies are crucial to help her to stay calm and they have to be adapted according to her mood. It's draining when she repeats the same question endlessly, and demands a specfic response each time - but fantastically rewarding when she deviates from her learned phrases and makes a meaningful attempt to communicate with us.

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Special Saturday - What I'm thankful for

2011-11-18T15:44:00.000-08:00

When Chrissy was little I spotted an ad in my local newspaper inviting mums of children with special needs to get together for regular meet-ups in each others' houses. I grabbed the opportunity like a lifeline and am still in touch with some of the parents I met there. Sadly, over the years some of our children have passed away. When I’m in despair about Chrissy I try to remember how lucky I am that I still have my child. Chrissy is physically healthier than many children with rare chromosome disorders.

We're also very fortunate to have supportive, loving family and friends - and Chrissy’s step-dad of 20 years is our rock.

Another thing I'm grateful for is to have the opportunity to write about what interests me and get paid for it – many of my magazine and newspaper stories are learning disability or health related.

I’m thankful that we weren't born in another time or place where Chrissy would have been ostracised and probably wouldn't have survived childhood. The excellent Channel 4 documentary 'The Queen's Hidden Cousins' http://www.channel4.com/programmes/the-queens-hidden-cousins/4od was a stark reminder of how appallingly people with learning disabilities were treated until very recently.

I also have to remind myself how far we've come as a family. When Chrissy was five I separated from my three children's dad, & lost everything. To cut a long story very short, I ended up homeless & was terrified of getting stuck in a hostel with Chrissy disturbing everyone with her screaming episodes. Thankfully I was housed by the council just before I had to give up my marital home. I was getting no support with Chrissy from outside services & my wider family were also dealing with my dad's premature Alzheimer's. I had no idea that respite care and social workers existed to help families like ours - until I had a breakdown. It was the lowest time of my life.

Back then if I could have peeked into the future and seen how much better our lives are now it would have seemed like a fairytale!

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#Special Saturday - Antipsychotics

2011-11-12T10:19:00.000-08:00

Did anyone see the C4 documentary about children on antipsychotic drugs? http://www.channel4.com/news/numbers-of-children-on-antipsychotic-drugs-doubles
I’m so pleased this scandal is being highlighted. There have been several reports about over-use of antipsychotics in elderly dementia patients but not in children or people with learning disabilities. I blogged about this issue last October:
http://jgregorysharingsstories.blogspot.com/2010/10/autism-industry.html
The story about the little boy on the C4 programme sent chills down my spine. He banged his head against hard surfaces and lay on the floor kicking & screaming – just like Chrissy. Antipsychotics were eventually prescribed when he was five but had no benefit. He was then seen by Professor Chris Oliver http://www.cndd.bham.ac.uk/people/ChrisOliver.shtml who suspected he had reflux (heartburn) but was unable to express physical pain due to his autism. When his reflux was treated his behaviour & self-injurious behaviours improved significantly.

Many children with 1q21.1 microdeletion have been diagnosed with reflux as babies. When I remember how Chrissy used to arch her back, and scream for ages in infancy, then head-bang as a toddler, I wonder if she had undiagnosed reflux. My blood still boils at how I was fobbed off when I sought medical help. I was convinced my child was suffering and in pain but these behaviours, & Chrissy’s prolific vomiting, were dismissed as being ‘normal’ for babies & I was treated as an over-anxious first-time mum.

After seeing the programme, I contacted Chrissy’s doctors & asked them to check for reflux again (sure I’ve done this before!), as it would be helpful to rule it out as a contributing factor in her self-injurious outbursts even now. It may be that they started off as a reaction to pain then became entrenched - but causes are probably more varied & complex. Explosive outbursts, sensory integration issues & poor impulse control are also part of the chromosome disorder. I would also like to discuss the plan for reviewing Quetiapine, an antipsychotic Chrissy is taking now. I am eager to see how she is on a gradual reduction programme as surely there should be good justification for her to be on an antipsychotic? I’m not aware of any, & it’s interesting that the investigation suggests there's no evidence that antipsychotics help self-injurious behaviour. Also, more chillingly, no one knows what harm they do over time – particularly to the developing brain of a child. I’ve seen how they affect every part of the body and have frequently expressed my deep unease at their effects on Chrissy. She was prescribed antipsychotics at 10 and different ones were tried until she was 14 and in such a state that she ended up in hospital where her whole medication regime was overhauled. When she had the platelet reaction six years ago she was put back on antipsychotics – newer ones that allegedly cause less side-effects – but I remain unconvinced that the risk-benefit balance is in Chrissy’s favour.

Here’s a list of the side-effects of Risperidone, the antipsychotic Chrissy was on prior to Quetiapine, as reported to her learning disability psychiatrist in 2008:
• Parkinsonian tremor in right hand, and, more mildly, tremor in head and mouth.
• Noisy breathing, even when sitting quietly.
• Frequent leaning to one side – Pisa Syndrome?
• Poor balance.
• Decreased fine motor co-ordination – problems eating neatly, particularly using a knife and fork, which Chrissy always used to be able to manage with no problems.
• Decreased gross motor co-ordination. Problems climbing into and out of unfamiliar things, like fairground rides, which she would have once managed, albeit with support.
• Increased agitation and shorter concentration span.
• Drooling from mouth. (Non-existent normally)
• Frequent urination and loss of bladder control.
• Reduced cognitive ability – less aware of surroundings and takes more time to process information.
• Weight gain and obsession with eating.

My concerns were initially dismissed, ludicrously, as being ‘part of Chrissy’ but eventually the psychiatrist agreed to reduce the antipsychotic dose, which diminished the side-effects. However, without the doping effect, many self-injurious, challenging behaviours returned, hence the change to Quetiapine. We haven’t seen the same side-effects, just different & even scarier ones. The worst of them settled over time when the dose was tweaked but Chrissy is now obese & still has self-injurious outbursts.

Of course, there are no drugs to ‘cure’ conditions like autism. You can adapt surroundings and use strategies to help someone cope better & improve their functioning. However in certain circumstances medication is necessary, not as a chemical cosh to make carers’ jobs easier, but to improve quality of life by treating symptoms such as extreme anxiety or a compulsion to self-injure. I don’t know why antipsychotics are so widely used in place of other medications to treat such symptoms. Have psychiatrists become too complacent? Is it a case of better the devil you know? Any medications that affect brain functioning in the way antipsychotics do should only be prescribed as a last resort and with strong justification. They should also be subject to careful monitoring.

Surely these are basic medical principles - so what's going wrong?

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#Special Saturday - Christmas Gifts

2011-11-05T07:58:00.000-07:00

Now Chrissy is engaging more with activities I am choosing Xmas gifts with particular care. She can be destructive so needs close supervision with anything breakable, like her laptop & portable DVD player. I have bought her the Snowman DVD again, which she loves. I buy at least one a year because it wears out or gets broken. Chrissy plays it over & over, & never tires of it. This year I'm trying out DVDs that have similar animations - Father Xmas & The Bear. Chrissy loves anything Xmas-themed & DVDs with lots of singing, dancing & colour.

Greatest hits include:
Makaton Nursery Rhymes hosted by Dave Benson Phillips; portable keyboard; a colourful 'speaking' parrot & Teddy Ruxpin - another speaking toy; a personalised video that features your child as the star in a cartoon; a small Xmas tree that dances to music; pop-up books with sounds; Vtech toy laptop; Leapfrog reading system; portable DVD player; CDroms like Reader Rabbit; bubbles; a brand new Argos catalogue!

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

2011-10-28T06:19:00.000-07:00

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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#Special Saturday Post: What My Daughter's Special Needs Are

2011-10-21T15:30:00.000-07:00

Chrissy's magic hands

Chrissy's special needs are complex with moderate to severe learning disabilities, epilepsy, a rare chromsome disorder and challenging behaviour.

These labels gradually crept up on us. There was no defining moment when a doctor sat me down and told me that there was something wrong with my child, let alone what was wrong.

When Chrissy was born weighing 7 lb 6 oz after a straightforward first pregnancy and a long induced labour, I was bursting with pride - awed at the part I'd played in creating something so perfect. Friends and family agreed that she was one of the most flawless and alert-looking newborns they had ever seen. I called her my 'air traffic controller' because her hands waved around energetically whenever she was awake. Her brown eyes were bright and wide open as they gazed into mine.

We spent six days in hospital - standard for first babies then. Chrissy's suck was weak and she didn't feed well. Her weight dropped to under 6 lbs. Medical staff kept an eye on her but they weren't unduly concerned. Once home, Chrissy was a placid, sleepy baby. She failed to thrive and vomited up most of her feeds. She was noticeably floppy compared to other babies of a similar age. Concerned about her poor head control, her health visitor referred her to a paediatrician. I had no idea how significant these early signs were - just a slow, chilling realisation that this wasn't how things should be. I was 23 then and didn't know what had hit me.

Chrissy was late with all her developmental milestones and didn't walk until she was 22 months. Speech came slowly too but we put it down to glue ear - she had recurrent ear infections. I was told that Chrissy had 'developmental delay' but I assumed she'd catch up. She had her first seizure at 10 months, diagnosed as a febrile convulsion, then started having seizures without a temperature. Epilepsy was diagnosed when she was a year old.

Chrissy's behaviour was a big concern from infancy. She was an absolutely delightful, sunny-natured baby, but even then, she had intermittent prolonged screaming outbursts. Our GP put it down to colic, although Chrissy stiffened and arched backwards rather than drawing her knees up to her stomach. These screaming bouts have continued ever since, varying in intensity and nature. As soon as she was mobile, the screaming was accompanied by head-banging, then other types of self-injury as she grew older. She only ate a limited range of foods, and they had to be smooth as she had problems with chewing.

I was desperate for answers and wondered if something had happened during birth - my induced labour was long and difficult but there were no obvious complications. Her doctors weren't able to give me any answers. As of course there was no internet then, I scoured the local library for information, but I drew blanks. Brain scans and, later on, genetic tests, were all clear. Chrissy didn't look as if anything was wrong until she was about six although she was tiny and looked younger than her chronological age. Autism was ruled out. 'Autistic people don't speak,' her doctor said. A speech therapist described her speech as 'parrot-fashion' but said Chrissy was 'unautistic.'

When Chrissy was 15, I started writing my book 'Bringing Up a Challenging Child at Home: When Love Isn't Enough.' http://www.amazon.co.uk/Bringing-Challenging-Child-Home-Enough/dp/1853028746/ref=sr_1_1?ie=UTF8&qid=1319238962&sr=8-1

It helped me to celebrate Chrissy's uniqueness. I gave up my search for answers.

Then, seven years later came a breakthrough. A research project we'd taken part in revealed that Chrissy had a rare chromosome disorder, called 1q21.1 microdeletion. Not much was known about this newly discovered genetic condition but autism, learning disabilities and neuro-developmental disorders are associated with it. Chrissy's microdeletion is de novo, which means it occurred spontaneously. During the same year, purely by coincidence, Chrissy's psychologist was given the go-ahead to do a long-awaited autism assessment. Autism was confirmed. So much about Chrissy is explained by this diagnosis, hence our late learning curve.

Today, Chrissy's self-injurious outbursts blight her life more than ever but she can still be an absolute joy - affectionate, funny and full of endearing quirks, such as the 'magic hands' pictured. Her hands are still quite plump, like a baby's. 'Chrissy, do your magic hands,' we ask, and she's off, grinning like a Cheshire cat and rubbing those flappy hands together until they squeak.

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#Special Saturday post - Groundhog Day

2011-10-14T06:56:00.000-07:00

My life feels like Groundhog Day – we've been here three times in three years. Chrissy’s escalating behaviours, placement not meeting her needs, with the backdrop of the funding dispute. Apart from last Sunday's completely nuts bender, which I think has kept me going through this week, I can still focus on little else. Chrissy's spate of awful impulsive/compulsive self-injurious behaviours (SIB) is continuing. (I'm not going to call them outbursts or meltdowns anymore these have a different, far more intense quality). When I look back at the short phone videos I've been taking to show her doctors, I can't bear to watch or listen for long. She is wretched in them, as if she is being tortured by something outside her control.

These behaviours have fallen into a pattern of going dramatically downhill for several weeks once a year. This year and last there have been meds changes. I can’t remember whether there were the year before but will look into it. How any placement can meet her needs when she's in this state, I don't know. They can only contain her. However, this hospital placement has been promising far more than it delivers for months now & the behaviours have only recently escalated. I don’t attribute them to the environment, which will have remained largely unchanged. As I've said, the Topiramate reduction is likely to be a factor, if not the cause of her unsettled behaviour. However, I would still like her behaviour charts examined to see when she became more unsettled, as a thyroid medication was introduced on 20 September, which correlates with the behaviour changes. I’m told that it’s a tiny dose & wouldn’t cause this sort of problem but, with Chrissy, I always make extra checks as she has such paradoxical & unusual reactions to medications, especially when they are first introduced or changed.

So on Tuesday, Chrissy was at home with my mum and I. It started off ok but, when I was holding her hand, I noticed it was twitching & shaking. She grew increasingly demanding & obsessive about when dinner was ready, what’s for dinner, the computer, DVDs etc. She made her usual ineffectual attempts at spitting & hurting me with slaps on the shoulder. Her obsessions led to three sessions of prolonged, impulsive/compulsive SIB. They were so violent & prolonged I rang the hospital for help – something I’ve never done before. Mum said she hadn’t seen anything this intense for ages, & observed how Chrissy seemed ‘possessed’ by what was happening to her, & wanted to stop but couldn’t.

When Chrissy had recovered she suddenly beamed at me but, even in between outbursts, the smiles were short-lived. She was generally more agitated & demanding than usual. At around 9, Chrissy let me bath her and put her to bed. She then sat silently on the toilet seat in the dark for about 20 minutes, & called me when she was ready to move on. If you intervene before she's ready she will kick off again. She needs to be left alone. I call these her ‘frozen states’ and they often occur between violent SIB. Mum & I were struck by how changeable Chrissy was overall. At one point we asked her what had been the matter; she smiled sweetly & said ‘I had a tantrum’ but wouldn’t be drawn further.

That night, she slept right through until 2pm the following day. We managed to avert any major crises until the car journey home where she became agitated and obsessive again, & kept undoing her seatbelt & trying to climb into the back. The hospital reported that there were further ‘behaviours’ later on and the following day. I also learned that they, too, had seen them occur without any environmental trigger. I was told that while we were away, she had even got out of bed at night, run into other patients' rooms & jumped on top of them - to occupy their beds rather than hurt them. This barging into other people’s rooms is something she's been doing at home. Chrissy then threw & smashed someone’s tv set & radio – first I’d heard of any of this. These problems at night are exactly what happened in her residential placement in West Sussex at the end of 2010. When she’s settled she normally sleeps well.

The compulsive/impulsive nature of Chrissy’s self-harming behaviours has never been examined. One of her psychiatrists put it down to ‘autistic crisis’ and another to ‘attention-seeking!’ Her psychologist put it down to 'jealousy' of another challenging patient! We've never seen any evidence that Chrissy experiences jealousy as such - I can only think it's an unfortunate choice of words. English isn't her doctors' first language. Her previous neurologist wanted her to see a specialist in movement disorders and tics. We’d asked for the referral to go ahead when she was admitted to hospital but, at the time, her psychiatrist felt that the Maudsley (who came out & assessed her) would be able to offer everything she needed. She also said that the medications Chrissy was on would be the ones used for tic or movement disorders.

We can only hope that Chrissy will emerge from this period very soon & that we'll eventually help her to achieve lasting stability again as she did during the last six years of her teens.

A System that Lets us all Down

2011-10-07T07:39:00.000-07:00

Chrissy smiling sweetly after an outburst - loving the feel of my chilli-chopping gloves!

Sorry, this is a long one. I've got quite a story to share...

Last week I called the ward to see how Chrissy was and heard she’d become very challenging, and her sleeping pattern had changed radically for no obvious reason. We were on holiday in Sardinia and I immediately felt guilty, wondering if she was missing us. We’re not sure about Chrissy’s concept of time – but we suspect she pines when she goes longer than a week or so without visiting home.

Last Sunday after our return home, I phoned again to see how she was and was told that she’d spent all day screaming and self-harming. She couldn’t be pacified and there were no obvious triggers. I was due to see her neurologist on the Tuesday and arranged to bring her home afterwards.

After the appointment, I chatted to Chrissy’s nurse about her. She said Chrissy’s behaviour had been really difficult over recent weeks & she hadn’t been able to pinpoint why. We’re hoping her multi-disciplinary team will be able to identify from behaviour monitoring charts what triggered these changes. Chrissy hadn’t been home for a while, which is unusual for her, there had been lots of different staff on the ward. There were also drug changes – the anti-epileptic, Topiramate, has been reduced and thyroid medication introduced. The neurologist explained that behaviour can often worsen after an anti-epileptic is reduced or changed as it can have a sedating effect that wears off when withdrawn. Apparently, the thyroid drug is low dose and would not be expected to cause these side-effects. I’m pleased that the neurologist and psychiatrist are working closely together on meds changes but, despite her being in hospital for 20 months, we still have a long way to go with further changes indicated.

I wondered about the support and autism training ward staff were given, and, importantly, their experience of dealing with patients with autism. I asked about daily activities and the nurse said she tried to do baking with Chrissy but could only do it when regular staff were on shift. Where was the consistency and continuity of care? She said that there had been lots of staff changes and during further discussion, I grew concerned that bank staff weren’t properly (if at all) briefed about the patients. When the nurse is on shift and working with new staff, she advises them on the day about how to bath Chrissy etc., which is nowhere near long enough – anyone that works with someone as complex as Chrissy needs to shadow for a period of time surely? For example, when Chrissy kicks off, if you try to intervene or respond to her, which most people would do naturally, it can make things escalate. We had been told before Chrissy’s admission that all bank staff would be known to her and taken from a regular hospital pool rather than outside agencies. This doesn’t appear to be happening.

When we got back to the ward, it was chaotic. Chrissy was wearing someone else’s pyjamas or clothes – wasn’t sure which – the top had a huge rip across the chest, which I was told she had done herself – very likely – but to leave her in it when they knew I was coming? There were other unfamiliar items of clothing strewn around her room. She was in bed and her carers had got her up when I arrived, instead of getting her ready for her visit home as you’d expect. This could be part and parcel of Chrissy’s poor sleeping pattern and challenging behaviour though I would think she’d have been more compliant due to her excitement at coming home. A carer dressed her in a horrible pair of joggers that had shrunk and faded in the wash. Her carer was lovely and friendly but I tensed when she excused the trousers with ‘She’s only going in the car, isn’t she?’ Chrissy was getting low on some of her clothes because I do her washing & there was a huge bag of laundry waiting for me but there were a nice pair of trousers in her wardrobe. I swapped the trousers, asking the carer to throw the offending ones away. Some clothes were crumpled up in her wardrobe with no attempt to fold them neatly and other people’s clothes were strewn around the room. I never spend much time on the ward – it isn’t encouraged because new faces are disruptive. I was dismayed by what I saw. Sorry, but I strongly believe that we should, as far as possible, treat other people, including those with learning disabilities, the way we like to be treated ourselves. The fact that these carers and nurses were obviously lovely, compassionate people made it worse in a way. Casual, throwaway remarks can reveal volumes about a person’s attitude to disability – or is the hospital’s culture to blame? Do they see people like Chrissy as less than human, and become desensitised? After all, they deal with the most challenging disabled adults out there. Am I expecting too much? Anyway, besides all that, it’s meant to be an autism speciality service with tight structures and routines.

The medication hadn’t been prepared before I’d got there so Chrissy and I had to hang around while it was sorted out – which was agitating her. The Diva waits for no one! Then her symbols book (for communication) couldn't be found. The nurse in charge said ‘it doesn’t matter does it now her communication’s so much better?’ [since the Topiramate reduction] I doubted the psychologist or speech therapist would agree with that view, The symbols are meant to be a consistent part of her care plan and used to move her on between activities and to help her focus, among other things. After some frantic searching, we had to leave without the book. I felt a sense that they were ‘fire-fighting’ on the ward, just dealing with issues as they arose. Other things have been lost on the ward too, which is hard to understand when there are so few places to lose anything!

I fought back tears all the way home and wondered if there was any way that I could keep Chrissy (literally, not take her back) but her extreme behaviour at home soon made me realise how futile that plan would be. Chrissy's volatility and irritability got worse as the evening went on. She alternated between screaming, ferocious self-harming, violent outbursts and loveliness. As always, it’s heart-breaking to watch because she can’t tell us why she’s doing it or how she feels. I noticed hand tremors and bald patches where she is pulling her hair out. The following morning, Chrissy was generally calmer, although she kicked off for a short time after banging her knee on the bath as she tried to climb in. It was interesting to see how she reacted – she smacked the spot that she’d hurt, then banged a nearby mirror several times with her hand, then tried to spit (luckily a skill she hasn’t mastered very well), hit me, pull her hair and throw something all at the same time. Pain has a different effect when it’s not self-inflicted – and it was threatening to drive her into a frenzy of compulsive destructiveness and self-harm – she would have hit me if I hadn’t dodged out of the way, I let her calm down before encouraging her to climb into the bath again. There is nothing else you can do when she gets like that. Offering to kiss it better fuels her rage.

It would be too simplistic to blame all her behaviour changes on the care she’s getting. We suspect the quality of care has been worsening for a while and we have seen behaviours like this through drug changes (and during other times where triggers weren’t obvious) since Chrissy was a baby and still living at home. So, we are, for clarity, looking at them as two separate issues – the third (major) one being the backdrop of the funding dispute holding up future planning and preventing a cohesive, transparent approach to dealing with any problems Chrissy faces.

This dispute now involves three counties again – it had shrunk to two, or so I’d believed. They are all counties that Chrissy has lived in since adulthood. It does seem like poetic justice as the third county had done all they could to avoid being ‘dumped on’ and now it’s come back to haunt them as one of the NHS trusts is ‘seeking to transfer commissioning responsibility.’ I’ve been advised not to get involved in all the ‘politics’ but it’s more than that. Chrissy has been turned down for continuing healthcare funding because her needs, according to the way her assessors have used (some would allege ‘abused’) the assessment criteria, are deemed to be more social than medical. All those I’ve consulted in social and healthcare related industries are flabbergasted by this decision. One of the authorities is appealing against an ‘extra component’ allegedly used in the assessment, the nature of which I can’t go into at this stage. It has huge implications for Chrissy’s future care and may open up a can of worms for other people turned down for CHC by this NHS trust. We now wonder how much of Chrissy’s medical support over the past eight years was driven or at least influenced by this ‘extra component.’

In addition, because no one wants to take financial responsibility we have not been able to plan for where Chrissy goes next, which leaves her in limbo.

As I write, things are escalating behind the scenes. By coincidence, someone commissioned by a local authority involved in Chrissy’s care visited her as part of a review of all out of county health-funded placements (due to the Panorama programme apparently). Her report recommends radical changes to Chrissy’s care and a speedy resolution to the funding dispute. An independent advocate is helping me work towards the same end. I’ve made a complaint to the hospital and against the local authority and two NHS trusts involved in the dispute. I’m appealing against the continuing healthcare decision, and asking it to be back-dated and re-assessed.

This isn’t just about Chrissy anymore. Our story is an exposé of a flawed system that lets down society's most vulnerable.

A #Specialsaturday Post - Uncertain Times & Embarrassing Moments

2011-09-16T07:41:00.001-07:00

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

2011-09-09T12:47:00.000-07:00

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....

The Real Face of a Carer - Guest Post by David McKendrick, Social Work Lecturer

2011-09-08T07:05:00.000-07:00

David sent me this moving piece he wrote for Professional Social Work Magazine, Scotland. He makes a heartfelt plea for social workers to listen to the experts - the carers themselves - when assessing caring situations. His subject, Crawford, became a carer to his wife of 31 years after she was knocked down by a car, & left with life-changing brain injuries. For me, their story highlights how anyone can find themselves plunged into the role of carer.

“What? The true face of carers? This is the theme of Carers Week? Listen, don’t ask. You don’t want to know. If you did have a clue what a carer’s true face is, it would frighten the pants off you!”

This is a quote from Hugh Marriott, a carer and author of The selfish pig’s guide to caring, about Carers Week which ran from 13 to 19 June. If you want to know if this is the truth then ask Crawford Fallon. I did and it is. For the last 10 years Crawford has been the sole carer for his wife Elizabeth, who was brain injured after being involved in a hit and run accident.

Elizabeth’s injury came after a night out. The couple were walking home when she was hit by a car. In an instant their lives changed. There was no warning, they were not consulted and the repercussions of that night have changed their lives completely.

Before the crash, Crawford and Elizabeth were happily married and living in their home town of Shotts in North Lanarkshire. Elizabeth was a nurse specialising in working with infectious diseases and Crawford was developing a career in the mining industry.

Crawford had to give up his job and become a full time carer for Elizabeth. Elizabeth’s injury makes her unpredictable, she can become aggressive and can shout and swear. On occasion she has been violent and has hit Crawford. Elizabeth has hurt herself and talked of suicide. Initially, there were many offers of help from family and friends but these have all stopped. People are embarrassed by Elizabeth’s behaviour and don’t like being seen out with her.

Like many carers, Crawford attends to Elizabeth’s every needs. Over the years Crawford has kept an intimate diary detailing what he has done. He has developed a whole new range of skills, he is an expert and there is quite literally nothing that Crawford does not know about caring for Elizabeth.

Before Elizabeth’s accident Crawford had never cared for anyone, least of all someone with a brain injury, so he has had to learn. This has often been by trial and error. Crawford has made mistakes and each mistake has been costly, resulting in either his or Elizabeth’s distress - or both.

Crawford’s learning has been unsupported with little help. There have been no university tutors, practice educators, senior carers or colleagues to learn from. There has been no safe learning environment and no boundaries. Elizabeth’s personality can change seemingly without warning. But Crawford has become expert at reading the signs - he has to be.

Recently Crawford was visited by a social worker who was completing an assessment. Like all social workers he had a deadline, he had a caseload, he had to complete all the relevant paperwork and had to fill in all the computer screens. Crawford went out to make him a cup of coffee and on his return the social worker was asking Elizabeth how she would feel about someone coming in to help care for her.

Elizabeth became angry. This can happen and when it does Elizabeth can shout and swear or even become aggressive. Crawford knows this, he is the expert. If you read his diaries or ask him to share his expertise he will tell you. Crawford used all of his patience to explain to the social worker that working with Elizabeth requires skill and tact. Elizabeth does not understand the concept of a deadline, or of a report or the need to have your case notes updated.

Crawford has been here before with doctors who have offered diagnosis after diagnosis. He has been there with occupational therapists, dieticians, psychologists and psychiatrists. Amidst all of this Crawford is still engaged in a complex legal battle over the original injury. Losing this could put his home at risk as he and Elizabeth exist on state benefit. Crawford has to care and fight, and balancing both of these is becoming an ever more challenging task.

Crawford needs to be organised - for him this is the key - and his diaries help. He has by now experienced most of the challenges involved in caring for Elizabeth. There is not much he has not dealt with. He has dealt with tantrums, violence, tears, depression, anger and frustration, and understands all of these.

He understands all to well his own burden. Fighting on all fronts is draining and he too is feeling the pressure. Caring for Elizabeth saps his energy and creativity. Like many carers he feels he is the only one who can care for Elizabeth.

He finds it easy to share his knowledge and expertise but hard to give up his role. He worries that someone else won’t care for Elizabeth properly. He worries that the progress they have made will reduce if someone else comes in. He worries that if someone else comes in he will lose his identity.

Crawford likes to keep fit. He finds solace in the solitary pursuit of running. He uses this time to refresh himself, to de-stress, to reflect on what has worked and what he might do differently. Crawford needs re-assurance. He needs patience and understanding and he needs to be involved. Crawford needs to be recognised as the expert.

Crawford and Elizabeth need social workers to understand that their relationship is intimate, that amidst all the frustration and anger there is a bond that has been challenged and strengthened by adversity. Crawford and Elizabeth need each other and they need social workers to understand this.

For Crawford, the important thing is that each professional has an understanding not only of their role but of how all of them work together and understand each other. Co-ordination is the key. If professionals took the time to read up on Elizabeth before they visited her they would understand that change frightens Elizabeth and that when she is frightened the fight or flight instinct takes over. Trying to put together a package of support that will have an impact won’t happen under these circumstances.

Crawford needs social workers to talk to him. He knows the Elizabeth’s behaviour can put people off. He also knows that this can be avoided. New ideas or changes need to move at Elizabeth’s pace, she needs to be consulted and her views sought. Crawford needs to be there to help Elizabeth to understand what is being suggested. After all of these years Elizabeth trusts Crawford implicitly. He knows and she knows he knows.

In Crawford and Elizabeth’s world the professional pressure for social workers matters little. They are sympathetic. They know that social workers work in a busy and demanding environment, that they are often blamed and they get bad a press. All of this is relevant but not important. For Crawford and Elizabeth, these challenges are professional not personal.

Crawford and Elizabeth’s challenges are personal. Their lives are dominated by Elizabeth’s needs and Crawford’s desire to meet them as best as he can. Crawford does so because he loves Elizabeth, their bond is deeply personal and goes beyond any challenge that life has thrown at them.

Crawford has accrued knowledge and expertise. This has been developed in the most pressured and challenging environment and Crawford has retained all of this knowledge. He is desperate to share it. There are no issues of confidentiality - it is theirs and if it helps it is yours.

Yet in helping Elizabeth gain more independence there is a risk for Crawford. If Elizabeth gets the support she needs he needs to re-define himself and there is a risk here. Such a transition will prove difficult. While Crawford and Elizabeth want this, they know that getting it will mean another change. They know this but they still want it.

Crawford has aspirations and wants to go back to university. He sees a future but he needs to know that the present is safe. In order for this to happen, social workers need to listen to Crawford and to learn from him.

Social workers need to ask him about Elizabeth. They need to ask him about him. They need to ask them about them. Social workers need to talk to others such as psychiatrists and dieticians. For Crawford, social workers need to value the uniqueness of his experiences and of his relationship with Elizabeth.

Carers do not feel connected to many of the organisational pressures that are around for social workers. They want a service that meets their needs. The financial pressures of local authorities are not immediate to them. Why should they be? The pressures they are experiencing are just as great. They are personal pressures, everyday challenges to which there is no end in sight. Crawford and Elizabeth need social workers who can listen to and learn from them.

A #Specialsaturday Post - My Special Needs Child's Greatest Achievement

2011-09-03T02:05:00.001-07:00

With exquisite timing, a story was tweeted about the chaos caused by local authorities arguing over funding responsibilities when a disabled person moves to a different area - so called "ordinary residence." I clicked on the link &, to my surprise it was our story. I had emailed various disability organisations about the funding wrangle over responsibility for Chrissy's care so assume it must have come from one of them.

The story, Ordinary-residence; extraordinary-mess, http://www.vodg.org.uk/cgblog/21/105/Ordinary-residence-extraordinary-mess.htm was posted by Graham Faulkner, Chief Executive, Epilepsy Society, Vice Chairman Voluntary Organisations Disability Group. It highlights discrimination against thousands of disabled people who can't move where they need or want to due to funding rows between local authorities. It also links in perfectly with this week's #Specialsaturday theme. One of my special needs child's greatest achievements is raising awareness of failings in the system, sadly by experiencing so many of them herself.

It wasn't simply a case of a wrangle between two local authorities - CHC (continuing healthcare) was also involved & argued that Chrissy's predominant need was social care, not health. Their nurse assessor confided that they'd used 'outdated assessment criteria designed to assess people with dementia.' I am awaiting a response to a complaint I've made about this issue.

Because Chrissy was moved to a 3rd local authority after a sudden, heartless eviction from a residential home, the dispute became even more complicated. It led to delays in Chrissy getting effective care, support & medical treatment, & endless meetings with commissioners, care managers & healthcare professionals. I took legal action three times & went to the local newspaper to resolve the stalemate situations Chrissy was put in. Meanwhile, Chrissy's mental health was deteriorating. She had made herself bald on one side by ripping out chunks of her hair, & spent hours self-injuring, hitting out at others, & screaming for hours. Increasing numbers of carers were being put in to manage her behaviour but Chrissy's quality of life was shit.

Last year, we made a complaint to the three authorities involved & eventually got a joint response from two blaming the third authority for it all. We are awaiting more responses - about the CHC assessment & from the third local authority - before we can proceed further.

Legal action settled the dispute temporarily in order for Chrissy to be funded at an assessment & treatment unit but it hasn't been settled long-term as the funding agreement was 'without prejudice.' The dispute continues with no end in sight as an important meeting to discuss Chrissy's future looms.

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/"> http://www.facebook.com/SpecialSaturday

'How I'd like my Life to be' by Chrissy - A #Specialsaturday Post

2011-08-25T08:41:00.000-07:00

A chance call from the Challenging Behaviour Foundation & a chat with two parents of other adults with complex needs have forced me to think long and hard about the journey we’ve been on with Chrissy over the past few years.

After 27 years of fighting to get Chrissy what I think she needs I’ve become entrenched in trying to sort out failings in the systems designed to support her. Am I failing Chrissy myself because I’m too exhausted and overloaded with information to think clearly anymore? It got me thinking… Have I lost sight of how she would want to live her life?

If she could speak for herself this is what I think she’d say…

Chrissy:
‘I’d like to live in my own home with all my own things around me, including my computer, my DVD’s, my foot spa, multi-coloured hairbands, books and favourite pictures. A garden that I could go and sit in on sunny days would feel very calming. I could blow bubbles and play ball out there too. I’d have my own chair and table outside with a sun umbrella for hot days so I could draw or watch my portable DVD, or sit quietly listening to the birds and looking at flowers with my favourite drink or snack in front of me. It would be fantastic if the garden was big enough for me to ride around in my trike, or close to a safe space where I could ride it with supervision. It musn't be too overlooked because I need my dignity respected when I lose control of my emotions & strip off on the lawn!

My home must be close to my family’s. I stay with them overnight once a week and would love to see them even more often, either at their home or mine for shorter visits. No one else could evict me or take my home away from me - it would be mine for as long as I needed it & furnished with my needs in mind. I wouldn't be forced to move to any more unsuitable places where there's no bath, nothing to do, or a string of strangers to care for me who don't understand my needs.

A wall-chart with removable stick-on symbols to help with my daily routine and planned activities for each day so that I'd have plenty of interesting things to do when I’m feeling up to it would be nice. I'd also like daily home-based activities available as I can’t always get out and about.

A bath with a rail so I could climb in and out more easily is a must. Showers are a definite no-no; the spray on my skin feels horrible. My body reacts to the world around me differently to most people's. Sensations that you don't notice, like a breeze blowing in my face, or sand under my feet feel very uncomfortable but broken bones & missing toenails don't seem to bother me. So you need to keep an eye out for unexplained swellings or hidden injuries. I have problems with balance & spacial awareness, & take my time walking on uneven surfaces, around obstacles or up & down steps. I can’t regulate my own body temperature well but fans on hot days & wearing gloves indoors if my hands are cold help. If I ask to wear a coat, scarf and gloves on a hot summer’s day, indulge me - they won’t stay on for long.

Sometimes I appear to have understood what's said to me but, actually, I may not have done; I need lots of time to process information. I can be helped through difficult times by having pressure applied to the backs of my hands, a cuddle, sitting with my weighted blanket on my lap or a massage. If an outburst threatens, I sometimes respond to tried & tested distraction strategies or basic sign language and symbols to de-escalate my distress. You may find it helpful to try & identify a trigger so it could be avoided or minimised in future. If I lose control, I don’t like other vulnerable learning disabled adults around to witness it & react with their own disgust, fear or anger. I can’t cope with other people’s challenging behaviour around me either. My own problems are more than enough to deal with.

Consistently applied behaviour support approaches are vital for me to remain as stable as possible, along with verbal communication, appropriate symbols and sign language. Any staffing or routine changes must be carefully planned and should only take place if they benefit me, & for no other reason. I need help to dress nicely, take care of my clothes & other possessions, shave my legs, keep my hair untangled and my teeth clean. Like most women, I lap up compliments & love to look nice. I especially need help to ensure that my diet is healthy and that my weight is kept under control because the medicines I'm on make me ravenous & food-obsessed.

On good days, I’d like enough support to go out for a walk, maybe to the local shop, or a drive to a garden centre or park. On bad days, I need space to rest undisturbed in my room, or have a good scream. If I'm hurting myself, I need to be kept as safe as possible, with carefully positioned cushions or sharp edged furniture moved. I'd need a safe area in my home, to which I can be directed or carefully moved with planned physical interventions if necessary as a last resort.

If I say I feel sick or start looking vacant or smacking my lips, look out for an epileptic seizure, & help me sit down somewhere. Even short seizures sometimes wipe me out & leave me confused & disorientated, so I may need a sleep to recover.

The local GP and learning disability team must be fully briefed about my condition and able to respond in emergencies – an appointment several weeks ahead is no good as my condition is very changeable and unpredictable. They'd need to be open-minded about what works for me as I'm extremely sensitive to many medications & they can sometimes induce rare adverse side-effects.

My senses get overloaded by any clutter around me at the table when I’m eating or doing an activity. I’m compelled to have two of just about everything from tissues to dollops of tomato sauce but cutting one slice of toast in half or ripping a tissue in two is fine. If I ask 100 times what’s for dinner, try to be patient & distract me but be firm with me, & please don't overfeed me to sedate me. Oh, just one last piece of advice for now - if you don’t make my bed covers all square and neat around me and turn my pillow (I call it ‘cushion’) over when I ask, I may shout at you and throw a strop.

Yes, I know I'm a diva but I have to be to survive in your world.'

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/"> http://www.facebook.com/SpecialSaturday

#Specialsaturday post - A Spooky Coincidence & an Aborted Visit

2011-08-19T12:33:00.001-07:00

Because I’d had a microdiscectomy on Monday, I wondered if it was wise to have Chrissy home this weekend. After learning from her nurses today that she was relatively settled, I decided to give it a go. My younger daughter, Alex, would be here until their step-dad, Ian, came home, so if things kicked off...

What I hadn’t bargained for was things kicking off immediately Chrissy arrived. As soon as her nurses brought her home this afternoon, she started asking for dinner - then repeating obsessively that she wanted chips. It escalated too quickly for us to prevent her from taking to the ground. For the 2nd time in weeks she stripped off on our front drive & had a meltdown - the most violent I've seen since Xmas. Her nurses said they'd seen meltdowns like this on the ward since her Topiramate had been reduced. They’d obviously passed us by until now.

Spookily, Chrissy had a horrific looking abrasion on her back, exactly where mine is from surgery. As she scraped herself backwards along the gravel on our drive, stones & dirt stuck to the wound. Chrissy continued to thrash about, oblivious to the pain. I marvelled over how she’d never suffered a serious wound infection.

The high-intensity outburst must have lasted about an hour in total and I realised, with a sinking heart, that it would be far too ambitious for me to have her home in such an unpredictable state while I was still recovering from surgery. The three of us shielded Chrissy's nakedness from the busy road outside with a blanket & her coat, & waited it out. It faltered for seconds then started full force again complete with foot-biting, hair-pulling, skin pinching & finger twisting. If we got too near we got kicked & hit out at too. “Go away!!!” she shrieked.

A painter had been working at the back of our house & had now finished. I asked Alex to tell him to wait before he came round the front to his van. He could hear the ear-splitting screams clearly. "It's my sister - she's autistic," Alex explained. What else could she say?

Finally, for no obvious reason, Chrissy stopped, got up & was immediately docile & compliant, chatting away as if nothing had happened. She let us dress her over her dirt-covered body & take her inside to wash her hands. She then hovered excitedly as I packed up some food for her to take back with her. "What was all that about?" Alex asked. "Had a tantrum," Chrissy said matter-of-factly. I then settled her back in the car. As she smiled sweetly at me through the car window, I felt like I'd let her down, & had a little weep in Alex's arms.

Later, her nurse called to say that Chrissy was fine, & had remained settled. She also reminded me that, because Chrissy's concept of time is different to ours, she hadn't realised that her home visit had ended before it had begun. Chrissy was just happy that she'd been home to see mummy.

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/"> http://www.facebook.com/SpecialSaturday

A Strange Genetic Journey

2011-08-14T05:46:00.000-07:00

I’ve just had a long conversation on Skype with a pleasant & well-informed Dutch guy whose wife & son carry the same chromosome deletion as Chrissy. He gave me a potted family history that struck a spooky chord. Although Chrissy’s deletion is de novo (maternal origin), our families share more than a coincidental number of characteristics.

The man's wife was born with a squint – the first sign of a possible genetic problem. I was too, & had corrective surgery. Her dad had one leg about 1½-2 inches shorter than the other, like me. Due to investigations into ongoing back problems, I’ve discovered that I also have subtle ‘skeletal abnormalities’ in my spine that are connected to the leg length discrepancy. There are other similarities in our family history that have made me want to explore this further - maybe with a research scientist who has a particular interest in 1q21.1 anomalies.

It makes me wonder how 'de novo' the effects of some of these rare chromosome disorders really are - or am I reading too much into a series of coincidences?

#Special Saturday Post - One Step Forward Two Steps Back

2011-08-12T08:39:00.000-07:00

Last week I blogged about how much more fluent & alert chrissy was after the recent meds change. Unfortunately there's a downside. Her meltdowns have been more intense & she has ripped a toenail off. Chrissy's nurses can't move her to a safe area when she kicks off because - get this - she isn't under section. She gets herself in awkward spaces sometimes in meltdowns - she has jammed her foot under car seats & all sorts. She doesn't tolerate wound dressings so there is a risk of infection from her injuries. She is on antibiotics, which make her more irritable. It feels like we're going round in circles.

I know I keep banging on about Naltrexone but I wish there was some way another trial could be done with close monitoring of Chrissy's platelet count. It's the only intervention that has EVER stopped Chrissy's self-injurious behaviours. I've asked her medical team to get in touch with the doctor that prescribed Naltrexone 13 years ago for an objective report on its benefits. Medical notes from that time have been lost.

Chrissy's been a joy so far today. When this photo was taken she was in my office ordering meal ingredients online. She was saying what she wanted, ie sausages, baked beans etc., I was writing the word down & she was typing it out then adding it to the shopping basket to see a picture of the item on screen. We played online games then sat in my car listening to my ipod. I'm experimenting with different activities now Chrissy is more engagable because her nurses asked me what she most enjoys doing. I had been trying to find out what activities she was doing after becoming concerned about how she spent her time on the ward.

The need for someone like Chrissy to have a structured daily activity programme is so basic I'm baffled there doesn't appear to be anything in place already. The activities she enjoyed were documented when I completed admission forms & where is an OT in all this?

The hospital does have activities but they are in another area, which Chrissy is still too volatile to visit. Surely if you can't take the mountain to Mohammed.....? If she isn't kept occupied Chrissy will play up. Who wouldn't? I know she won't always be settled enough to partake in everything she's offered but a variety of activities should be available on the ward for when she is. It's a constant frustration that I have to keep on & on to get Chrissy's basic needs met.

This weekend I will continue to try & re-engage Chrissy with old activities that she'd lost interest in.

So far so good. We've had a wonderful time - & no meltdowns!

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/"> http://www.facebook.com/SpecialSaturday

#Specialsaturday post - Meds Changes & getting my Daughter back

2011-08-05T08:56:00.000-07:00

Chrissy’s doctors decided that Topiramate would be the first drug to be reviewed as it can worsen behaviour problems. It’s an anti-epilepsy drug, & was introduced several years ago to augment Epilim as Chrissy’s platelet count had dipped again - thought to be the result of her blood/Epilim levels being too high.

Back then, her neurologist said that Topiramate could cause cognitive side effects in some people, which is a particular concern in someone with learning disabilities.
However, seizure control improved & Chrissy’s platelets rose to normal levels with the lower Epilim dose. Side effects of Topiramate were subtle – Chrissy’s word-finding abilities faltered and her vocabulary shrank. The neurologist told us that these side-effects would probably be temporary and, over time, they did seem less obvious. Now though that Topiramate has been reduced it’s clear that the cognitive deficits were bigger than we’d thought.

More recently, since the Topiramate dose has been reduced by more than a third, Chrissy’s nurses and I have noticed that her vocabulary has expanded. she comes out with longer sentences and speaks more fluently. Last week she amazed me by saying ‘violin’ when she spotted a photo in the newspaper of a girl playing the instrument – I didn’t realise she knew what a violin was! On the way home, we got stuck in slow traffic. Chrissy said ‘We can’t move the trolley, can we mummy?’ then roared with laughter along with me as she realised she’d chosen an incongruous word.

This week Chrissy has been much more settled - it could be due to the meds changes or just one of her flukey 'perfect' days. She didn't wake us during the night and the two outbursts she had were short-lived and less intense than usual. (It's worth noting that the second outburst came out of the blue about 30 mins after being given her morning meds) She occupied herself for short spells & was more interested in what was going on around her. In the evening she came up to me & signed sleep, saying 'It's nearly time for Chrissy to go to bed.' This morning she got into bed with me for the best cuddle ever. She wrapped her arm around me & snuggled up to my back, then stayed perfectly still as we dozed off for about 30 mins. She also appears to have lost a bit of weight as her trousers were looser.

It’s early days but things are looking up. Am I finally starting to get my daughter back?

Pics - Chrissy quietly occupying herself (something she hasn't done for some time) & enjoying my new favourite homemade dessert - white chocolate mousse cake.

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/

#Specialsaturday post - Self-injurious behaviour

2011-07-27T12:33:00.001-07:00

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.

#Specialsaturday - telling it like it is right now

2011-07-23T09:42:00.000-07:00

I started writing positive stuff about what my special child has taught me but we’ve been having a shit time with Chrissy. So instead I’m going against the grain by telling it how it is right now after 27 years of violent outbursts blighting our lives. Chrissy is with me, nagging ‘is it dinner later mummy?’ In her hand is a damp flannel where she has been rubbing at her bloody nose, injured during a screaming outburst. On my lap is a favourite T-shirt I bought Chrissy recently & a needle & thread. I am sewing up a hole that presumably resulted from an outburst – she literally rips off her clothes when she is distressed.

Chrissy started kicking off about dinner half an hour ago, screaming: “I want dinner!” over and over & tearing around the house throwing herself around the floor & self-harming. Now, she is sitting as quiet as a mouse next to me watching me type, battle scars decorating her hands & wrists. Next, she is squeezing me with one arm around my neck, and flapping and signing ‘yes’ with the other hand, asking: “Can I have dinner mummy? Say yes.” The unpredictable Jeckyll and Hyde nature of her behaviour is very hard to describe – and the emotional effects on those of us that have to deal with it are profound. Maybe that’s the downside of the empathy you need to support her by seeing the world through her eyes…

Autism & Saying No

2011-07-15T13:16:00.000-07:00

'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....

The Search for a Diagnosis - A Parent's Tale

2011-07-13T04:23:00.000-07:00

SWAN - Syndromes Without A Name - are serialising my parent's perspective chapter in The Genetics of Mental Retardation, New England Journal of Medicine.

Part One

Part Two

Special Saturday - Music

2011-07-09T14:35:00.000-07:00

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

2011-07-08T08:32:00.001-07:00

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?

2011-07-05T02:00:00.001-07:00

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....

2011-07-01T16:36:00.001-07:00

....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

Link to the Facebook group

Link to the original story of how special saturday came about http://www.savette.com/blog/why-i-started-specialsaturday/

Link to Swan UK (Syndromes Without a Name)

Unsettled Times and the Chocolate Hostage!

2011-06-25T11:19:00.000-07:00

I knew as soon as Chrissy walked through the door that there was going to be trouble. She was wild-eyed, flappy & agitated. Then she took off, running frantically from room to room again as she did last week. Her finale was to plonk herself fully clothed in our (empty) bath. Then off came the clothes & feet went in mouth to be bitten & bent back. (Chrissy is double-jointed.) At this point her younger sister, Alex, walked in to see what all the noise was about. She smiled wryly at the sight that greeted her & tried to distract Chrissy but she couldn't snap her out of it. Chrissy was volatile all evening. At one point she let me take both hands & gently squeeze them. The pressure stilled her & she allowed me to take her through deep breathing exercises. She visibly relaxed for a while. The many bruises & abrasions on her body signal how unsettled Chrissy is at the moment. No one's sure if it's the meds changes, the effects of a new extremely challenging patient on her ward or just another bad patch. We always try to attribute difficult times to something specific, such as too many changes in her routine, but often it's hard to pinpoint.

Bed-time went surprisingly smoothly & Chrissy woke up this morning much calmer. The only outburst came when we were about to take her back to the hospital because she wants to take everything except the kitchen sink with her. Taking favourite foods in a carrier bag, tied with a bow, is a self-soothing ritual she's devised to help her cope with transitions from one place to another.

On the journey back I had to refuel because Alex had borrowed my car and the petrol gauge was on red. I try to avoid stopping on car journeys with Chrissy because she tries to escape to get diet coke, which is her main obsession. Predictably, Chrissy insisted on coming into the petrol station shop to buy diet coke. She also grabbed a big pack of Maltesers. I tried to coax, bribe & trick her into giving up the Maltesers because she's overweight but she ran to the back of the shop with her treasures & started flapping & shouting. I know when I'm beaten. The nurses reported later that they'd used lots of cloak & dagger distraction techniques to hand her four Maltesers from the packet, give her the empty Malteser bag to hold & hide the rest. The diet coke was topped up with lots of water, which Chrissy accepts. Some battles just aren't worth fighting!

Animals, Bedtime Rituals and Autism

2011-06-17T14:23:00.000-07:00

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

2011-06-14T03:46:00.000-07:00

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

blog de Laura deletion 1q21.1: NOTRE HISTOIRENotre histoire commence en 1997 p...

2011-06-14T03:40:00.000-07:00

blog de Laura deletion 1q21.1: NOTRE HISTOIRE

Notre histoire commence en 1997 p...: "NOTRE HISTOIRE Notre histoire commence en 1997 par un jour de printemps. Nous avions alors 20 ans et 22 ans et après 4 années d’amour, no..."

Medication and Autism

2011-06-12T13:36:00.000-07:00

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……?

Feral Outbursts

2011-06-03T14:34:00.000-07:00

Had a horrendous evening with Chrissy. She was simmering all evening, nagging, repetitive & agitated, then she kicked off with a massive outburst like the ones she had at Xmas. No obvious trigger or change in her normal routine. The explosion came when we were sitting on the settee watching TV & she asked for one of her catalogues. Ian helped to her find the one she was after & she started leafing through & commenting on photos in it. Then she started picking at some dry skin on her hand & became increasingly agitated. I tried to hold her hand but she wasn't having any of it. She elbowed me in the face – not deliberately – as she got to her feet, roaring over & over ‘want catalogue!’ & ran from room to room, beside herself. She then ran out of the front door onto the drive (something she's never done before) with me in hot pursuit, & stripped off. I called Ian in a panic, & he heaved her up off the ground. No mean feat. (She’s about 12 ½ stone). He managed to half carry her back into the house before anyone could have seen anything. Chrissy fought against our attempts to cover her up & continued to tear frenziedly around the house. She then threw herself on the lounge floor still roaring ‘want catalogue!’ yanking at her hair, pulling one leg right up over her head so she was virtually doing the splits, biting her hands and feet, yanking at her skin, & slamming her heels down on the wooden boards. (She once broke a heel doing this). A strange musky smell came from her, as it sometimes does in very severe/prolonged outbursts. She behaves like some feral creature, no longer human, as her limbic system takes over. The whole episode lasted about half an hour. They have lasted for two hours or more.

Despair and helplessness are my overriding emotions right now. 18 months in hospital & still so unstable. We never know what to expect from one week ot the next. Her meds changes are on hold because her platelet count has dropped, probably due to an increase in one of her drugs in readiness for the reduction of another. (It’s a drug reaction she’s had before & it once became life-threatening).

I’ve been asked to write a 1,800-word piece for a national newspaper (weaving in my views on the Panorama programme) about the reasons why we put Chrissy into residential care. Where do I start & would it really be a good idea right now?

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

2011-06-01T00:12:00.000-07:00

I watched this shocking programme http://tinyurl.com/3wjjdea 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

2011-05-30T01:45:00.000-07:00

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 Stuff of Life: The impact of a genetic diagnosis

2011-05-23T00:49:00.000-07:00

The Stuff of Life: The impact of a genetic diagnosis: "Deciphering developmental disorders (DDD) is an exciting new project run by the Sanger Institute in partnership with NHS genetics clinics...."

The Uniqueness of Each Person with Autism

2011-05-22T08:19:00.000-07:00

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

2011-05-15T10:36:00.000-07:00

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

2011-05-13T15:39:00.000-07:00

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

2011-05-08T03:00:00.000-07:00

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

2011-04-30T04:44:00.000-07:00

"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

2011-04-22T07:49:00.000-07:00

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....?

2011-04-22T04:54:00.000-07:00

....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....

Sparkly cupcakes & feral rages

2011-04-12T02:45:00.000-07:00

The birthday celebration didn't go to plan - it was like a repeat of Xmas although we tried not to overwhelm Chrissy with new experiences. She kicked off at dinner time as usual as I served her favourite meal, burgers but this was more extreme. Not sure why - over-excited? As she pulled her hair out & writhed around screaming on the floor I wanted to weep. She's been in hospital for 15 months now &, after initial improvements in her behaviour, she has reached a plateau. The long-awaited meds changes still haven't been made. It just all seems far too long drawn-out & I'm having sleepless nights over it again.

Chrissy appeared to get over her first outburst but started again after she'd finished her burger. I'd made cupcakes & decorated them with flowers, glitter & butterflies but Chrissy wasn't impressed. She wanted '2 cakes' & because she's overweight we only gave her one cut in half - a ruse that often works. We couldn't console her by putting one cake in her bag to take back to the hospital either. She went into a violent rage. She threw & smashed a plant pot, & screamed & self-harmed (pulling hair out, banging heels hard on floor, biting & pinching herself) for over half an hour. I looked at her at one point & felt hate - but that was quickly replaced by pity, despair & a whole host of other emotions that these feral, violent rages invoke in me.

Bringing up a Challenging Child at Home: When Love is Not Enough

2011-04-11T06:58:00.000-07:00

27 years ago today my first baby was born. I was 23. My rapture at having such a beautiful 'perfect' baby soon turned to a gradual chilling realisation that something was wrong. Initially, health professionals refused to take my concerns seriously & treated me like a neurotic first-time mum. As I searched for answers and struggled to cope with my daughter's violent cyclic outbursts, epilepsy, general sickliness & bizarre behaviour I felt very alone. Not knowing what is wrong with your child is like being lost in the wilderness without a map. In 1999 I decided to write a book about my experiences with Chrissy called 'Bringing up a Challenging Child at Home: When Love is Not Enough,' published by Jessica Kingsley, London. My book aims to offer practical advice for other parents and to give a unique insight into what it is like to bring up a very complex & unique child, who we now know to have severe autism & an extremely rare chromosome disorder.

The sensory overload of a hospital appointment

2011-04-05T07:26:00.000-07:00

Chrissy appears to have no concept of time but she somehow senses if she hasn't been home for over a week. Last weekend I was away so didn't bring her home as usual. When I phoned the hospital to finalise details of today's appointment with Chrissy's neurologist, a nurse told me that on Saturday, she had donned her hat, coat & gloves & demanded to come home. When her request hadn't been granted she'd become very distressed. So, feeling guilty, I decided to bring her home today after the neurology appointment, instead.

The appointment itself went smoothly. Chrissy veered off into a shop inside the hospital for a diet coke & briefly interrogated a tiny child she was curious about but we didn't have to wait for long to be seen. The neurologist was well-informed & thorough, & I was happy with the meds change she advised. The two nurses that came with us brought the car as close as they could to the entrance so Chrissy didn't have to walk very far with the wind blowing her face - something that makes her react as if she's under attack. She moaned a bit & full-on sobbed at one point but all in all she coped very well.

The reaction came later back at home!

As usual I'd organised everything beforehand so that I could give Chrissy my full attention - I'd even pre-cooked tonight's dinner. Unfortunately, Chrissy wanted her sister's computer even though she now has her own laptop. After screaming & throwing herself & other objects around for 10 minutes she eventually calmed down & played on her laptop at the kitchen table. Another outburst kicked off when her lunch came - meal times & food are often triggers. Eventually, when I added an egg & tomato sauce to her tuna sandwiches, she settled down. Simple solutions but rarely obvious ones....

Sleeping with flowery curtains & the awesome power of autism

2011-03-26T04:13:00.000-07:00

Lively banter between Chrissy & step-dad, Ian, last night. A lion in her DVD cartoon roared, making Chrissy laugh. Ian asked what the sound was. 'Evil' Chrissy said. Breadth of vocabulary astonishes us at times. How did she know that word & relate it to roaring? She will stop in her tracks to point out tiny details in a room that we'd never notice, such as the 'Home' written on my Homepride biscuit tin, or a miniscule spider hanging from a big window, & put the correct name to them.

When we put Chrissy to bed, she said she wanted to change her 'cushion' (pillow). I turned it over a couple of times, which usually does the job, but she wasn't having it. Her eyes darted around her bedroom, and alighted on a pair of her old flowery curtains in a pile in the corner. "Want flower cushion," she said. Ian showed her that they were in fact curtains but Chrissy insisted on having placed around her pillow before she would settle.

This morning it was 'I want two' of everything from tissue to toast. We tear tissue in half & cut toast up, & she's satisfied with that. Light switches went on & off, every door around her was shut until she felt calm enough to take her tablets and eat her breakfast.

During all Chrissy's waking hours her life & the lives of those around her are governed by the powerful force of her autism.

Getting our daughter back..

2011-03-16T10:28:00.000-07:00

After the sudden move, I'd lost confidence in the quality of care Chrissy had been receiving. Doesn't take much. Trust had been shaken so many times by past events pre-hospitalisation. However, today, after a care programme approach meeting, my confidence was restored & my fears allayed. The meeeting was very well-planned & well-attended. I was impressed & moved by the obvious affection hospital staff had for Chrissy. It was clear that all attendees wanted the best for her & several health professionals said how much they enjoy working with her. One of her nurses added that they had all learned so much from Chrissy. I can't tell you how good it felt to hear that. We still learn so much from Chrissy too! I know how exhausting Chrissy can be but it's wonderful to hear that I'm not the only one who sees the rewards. The professionalism & attention to detail by the medical team in preparing their report was second-to-none. It's in stark contrast to all the meetings we used to have pre-hospitalisation with hidden funding agendas where Chrissy's healthcare needs were denied. I won't let it lie. There are too many vulnerable adults out there, with complex needs, like Chrissy, who don't have anyone to fight for them.

After the meeting we met with the CEO to discuss the problematic move. He was open & apologetic about what had gone wrong. I feel reassured that lessons have been learned, & this incident will not be repeated. I was reminded today how far Chrissy has come since she was first admitted in January 2010. We still have blips (xmas!) & there is still lots more work to be done but we are seeing light at the end of the tunnel. Chrissy is coming back to us...

My daughter & I. She has a rare chromosome disorder - 1q21.1 micro-deletion

2011-03-10T06:00:00.000-08:00

My daughter, Chrissy, is 27. She has autism, epilepsy, extreme mood swings, & learning disabilities. For years the cause of her problems was unexplained. Then in 2006 we had a breakthrough. New genetic testing technology revealed that Chrissy had a tiny bit missing from one of her chromosomes - a so-called micro-deletion. It occurred spontaneously (no one else in the family has it). When I still believed Chrissy's condition was unique I wrote about her in my book: Bringing up A Challenging Child at Home: When Love is not Enough, published by Jessica Kingsley. I have also had features published about Chrissy in the Daily Mail, Mirror, Community Care, Disability Now & Woman Magazine.

Dispelling myths: autism and showing affection

2011-03-05T10:18:00.001-08:00

People with autism are not all 'trapped in their own world.' Many do show affection, but may express it atypically and on their terms. They may suffer sensory overload - and find hugs overwhelming - unless they initiate them. When a person with autism does form an attachment to you it can be draining but the rewards are huge. Our daughter loves having her hands massaged and hair gently played with, and being squeezed and squeezing back. She also enjoys horseplay and light rough and tumble. Today when I was clearing away the breakfast things, she approached me out of the blue, smiling with her arms outstretched for a cuddle and said 'I love you much.' When she hasn't seen me for a while and spots me coming, her face flushes with joy and she runs towards me. Yes, she will go to anyone who offers her something she wants - like chocolate - but she will only spontaneously approach a chosen few with such rapture.

Could you be a woman living with undiagnosed autism?

2011-02-26T08:58:00.000-08:00

I blogged about Shona in January. Her story in Essentials Magazine came out today. 32-year old Shona has a 1st class degree in genetics but finds it difficult to hold down even basic admin jobs. She is attractive with a big personality but has problems in her relationships with family, friends & boyfriends. She has always felt alone & at odds with the world. Six years Shona was diagnosed with autism spectrum disorder (ASD). Autism in women is an under-researched area & many women wait years for a diagnosis or are wrongly diagnosed with eating disorders or other problems. 10 males to one female are referred for diagnostic assessment for ASD; females present differently to males, with less obsessional and pedantic traits, which means autism is less likely to be suspected. Many women may be living with undiagnosed autism like Shona was.

How autism widens our view of the world

2011-02-13T07:21:00.000-08:00

I've been agonising over how, for years, before our daughter got her diagnosis, we misunderstood her autistic behaviours as 'naughty.' We acted like parents of typical kids, setting boundaries and refusing to give in to our daughter's 'unreasonable' demands. Our actions resulted in lots of unnecessary frustration and anger on both sides. One way or another our daughter would have to learn that she couldn't get her own way by having tantrums.

Now, I understand that her demands are driven by obsessions and compulsions that she can't control. If thwarted, she becomes overwhelmed by distress & anxiety. The resulting outbursts look like severe temper tantrums. Some of her behaviours may seem totally unreasonable, for example one day when our daughter seemed particularly calm, I took her to a local pub on a sunny Saturday afternoon. It was very quiet and I thought she'd enjoy a coke in the gardens. When the barman poured her diet coke from a tap she started flapping anxiously as she usually has it in a bottle. I try to be one step ahead but you can't think of everything! I explained the situation & the barman unearthed a bottle with a metal cap, different from her usual one with a plastic lid. It was enough to tip her over the edge. She threw herself on the floor, screaming & pulling her hair. I stood by and waited until she was calm enough to be lured into my car with a promise of her usual 'coke-from-a-shop' at home. Her thinking is very literal & concrete, & no alternative would do. I try to keep her environment as consistent & structured as possible. I've learned that any tiny deviation in routine can result in chaos, but by deepening our understanding of how people with autism see the world we widen our own view.

Funding wrangles continue over disabled daughter's care

2011-02-03T10:13:00.000-08:00

I've blogged about this before (see below). Received an update today that the funding dispute remains unresolved and various assessments will be done for a 'high level meeting.' 1st a 'standard' self-directed support questionnaire, then an in-depth 'care funding calculator assessment' to allocate my daughter a 'notional budget.' Scary stuff! I can't help feeling sorry for local authorities, who must really be feeling the pinch now. The system is flawed. Is it fair for one local authority or NHS trust to pick up the bill for people with severe and complex needs? Shouldn't there be a national budget for such cases?

For the last three years I have been fighting to get my 26-year old daughter, who has a rare chromosome abnormality & autism, the expert help and support she needs. Residential homes have said they can't manage her behaviours, expert support services have shunned responsibility and she has been pushed from one local authority to another throughout the south of England. Three times in the last year alone I have had to litigate to try to resolve the situation. Her PCT have said that she needs a fully staffed local supported living single person service – acknowledging that residential services can't provide what she needs. But who will pay? My daughter's funding has been a wrangle between two local authorities – one arguing that her predominant need was social care provision, the other arguing that her predominant need was for health care and, in addition, they couldn't agree which area’s authority was responsible. In January last year, after litigation, one authority was forced to accept 100% responsibility for funding her health care so she could get the hospital treatment she desperately needed. This funding agreement was given 'without prejudice' & the dispute continues. We have been waiting for over 18 months for a continuing care assessment to be completed - it should take about two weeks. These delays and disputes are a means for responsible authorities to delay or avoid paying for care. It means that our daughter has not had any involvement from a care manager for the past few months as the authorities continue to shunt responsibility betweeen them - I have done their job for them. She has suffered so much and we are fearful of the future - what happens when she leaves hospital? Our much-loved, complex & vulnerable daughter has become invisible in the midst of all the funding wrangles. We can only hope that she will regain her quality of life at the end of all this - but what happens to the vulnerable that don't have families to speak for them?

Cuts in services for the disabled

2011-01-27T09:29:00.000-08:00

Attended a Mencap Big Cuts event today. Received loads of useful advice about fighting the cuts. Met other parents, who, like me, are frightened of what the future holds for their disabled children. What's happening already is bad enough - cuts in Mobility component of DLA & Disability Law Service, respite centres being closed down etc. Government plans to make personal budgets compulsory for people with disabilities are the most scary. Disabled people will be allocated a budget based on their support needs then, if they have the capacity, make their own decisions on how it's spent. In many cases the task will be vested to families or, if they have no family able to do it, outsourced to 'brokers.' Essentially, the government would privatise learning disability services like they did pensions - & look what happened there!! Although many charities, including Mencap, support the principles behind personalisation - giving people choice & control - there is concern that personal budgets would be inadequate & used as a 'stealth cut' to reduce the amount of social care provision made. Navigating the system will be be more daunting in some cases than others - hitting the most vulnerable or those with additional complex health needs. Not a prospect I'm looking forward to :(

Sharing stories with mum of Chrissy's genetic 'twin'

2011-01-24T09:51:00.000-08:00

Comparing notes with another parent of a child like Chrissy was something I'd always longed to do. Until her diagnosis 4 years ago that wasn't possible. Recently, the mum of a 6-year old with the same 1q21.1 micro-deletion as Chrissy got in touch through Unique, the support group for families affected by a rare chromosome disorder. Initially, we swapped information by email & exchanged photos. By coincidence, the mum had already read a copy of my book 'Bringing Up a Challenging Child at Home.' So she already knew more about Chrissy than I knew about her daughter, Molly Mai. Today, we spoke on the phone for the first time. We plied each other with questions & shared stories for over an hour & were astonished by how much our families had in common. Their family sound lovely. Molly Mai is more mildly affected than Chrissy but it is so comforting to know that we're not alone in our experiences. We're looking forward to talking again, & maybe one day we & our daughters will meet. Thank you Unique!

Cameron blamed for disabled girl's respite care plight

2011-01-22T03:26:00.000-08:00

I agree with Angela Platell http://tinyurl.com/6699yju. David Cameron is not to blame here. Left-wing smear merchants have exploited this family for their own ends. This family's story should be highlighted but not like this. It's nothing new! Cuts ARE hitting the disabled but this girl's care wasn't cut. When our daughter's respite care was cut by 50% 10 yrs ago because we moved to another county it didn't make headlines! I wrote about it for Community Care Magazine. Here's one of the links: http://tinyurl.com/6k8qljs. When I posted about this news story on Facebook, one mum replied saying that she'd been fighting for more respite care since her disabled children were born 39 years ago! Never thought I'd say anything like this - but here goes! David Cameron's had an unfair mauling in this case.

Autism, communication - and a breakthrough

2011-01-15T08:49:00.000-08:00

Using effective behavioural strategies are all very well but it's demanding & exhausting caring one:one for an adult with autism. Then sometimes, you get a small breakthrough that lights up your whole day.

This weekend, still treading cautiously after our difficult Xmas, I painstakingly used symbols & planned every word I said. It worked reasonably well until today over breakfast when Chrissy demanded her favourite dessert. I told her that we have 'puddings' at dinner time, not breakfast time but she grew increasingly insistent & agitated. I ran out of diversions & strategies, but didn't believe that giving in was the answer in this situation. As I prepared myself for the inevitable outburst, to my amazement, Chrissy paused for thought & came up with her own ingenious solution - a massive step forward. "Can I take my pudding to Linton?" (the ward she lives on) "Yes," I replied, removing it from the fridge. "Can I have a bag?" she asked, then asked for a spoon, which she insisted on selecting. "Make a bow" she ordered. I tied the bag up, gave it to her & the immediate storm passed....

Test to check DNA flaws in prospective parents

2011-01-13T07:50:00.000-08:00

http://www.dailymail.co.uk/sciencetech/article-1346543/Pre-conception-test-flawed-DNA-eliminate-deadly-childhood-diseases.html

It is important to remember that only 600 of the better known conditions would be examined here. The test would miss many rarer chromosomal disorders affecting 1 in 200 of us. Tiny but equally 'catastrophic' genetic variants are being identified as culprits for previously unexplained learning disabilities in individuals. The mystery is that, in some cases, controls can share the same genetic variants without adverse effects. We still have a long way to go before genetic research can explain these differences. Strict guidelines need to be followed so that conditions tested for will definitely result in either very early death or severe suffering.

Women with undiagnosed autism

2011-01-10T00:33:00.000-08:00

Increasingly, more females are being diagnosed with autism but females present differently to males, with less obsessional and pedantic traits. This means autism is less likely to be suspected and many women may be living with undiagnosed ASD like 32-year old Shona was.

I've been writing Shona's heart-breaking, inspirational story for a national newspaper and a women's magazine over the weekend. Throughout her life, Shona hasn't been able to understand why she has never fitted in anywhere. She tried hard to get on with people but she never managed to form lasting close bonds. Six years ago everything fell into place when doctors diagnosed Autism Spectrum Disorder (ASD). Shona was relieved finally to learn that something was wrong with her - she wasn't a failure and a misfit.

I'll blog again when the articles come out.

Autism, communication & flash points

2011-01-04T04:41:00.000-08:00

I was jittery about having Chrissy home this weekend after our Xmas Nightmare but things were much better. She had one outburst lasting 10 minutes, in which she self-harmed & stripped off all her clothes. It kicked off as I was preparing dinner. Meal-times, like transitions from one activity to another, are flash points. We had a near miss over a meal the next day when I served Chrissy nachos & described them as 'corn chips.' She latched on to the word 'chips!' I could have kicked myself - it's so key to use the right words when communicating with Chrissy.

We made a conscious effort to use her symbols more often, & found them very helpful, eg when I gave her her morning medication, she fussed about wanting to go back to sleep. I handed her the picture symbol card, gave her time to take a good look & tried again. Understanding exactly what was expected of her helped & she took her pills calmly.

We try to learn from Chrissy's setbacks but sometimes her threshold for outbursts is so low we can only ride the storm & wish for the umpteenth time that she could tell us what she's feeling.

Autism & Xmas

2010-12-27T08:22:00.000-08:00

Xmas was ruined by our 26-year old autistic daughter's outbursts. We did all we could to minimise changes to her routine but they kicked off on Xmas Eve & reached a peak late Saturday afternoon with one lasting nearly an hour. Total 8 in 24 hours. We still don't know what drives them & triggers are unclear & inconsistent despite exhaustive psychological approaches being used. She's spent a year in hospital now & I feel as though we're no closer to stabilising her. If only she could tell us what she's feeling/thinking :(

How to Sell your Story to the Press video

2010-12-23T05:31:00.000-08:00

How to sell your story to the press

2010-12-23T03:37:00.000-08:00

How do I sell my story to the press?
Ever read a real-life story in a women's magazine or newspaper and thought other people should be reading about you? Well, it’s one thing thinking “Can I sell my story?” It’s quite another actually getting it done!

Sharing your experiences publicly can feel daunting but great stories can elicit high fees and you gain the satisfaction of seeing your story in print, or plugging a charity/deserving cause that you support. You can sell your story yourself by going direct to the press but you could lose out by not getting the going rate and your story may not be told the way that you want it to be. To avoid pitfalls, you are better off going through a freelance journalist or press agency that know how the industry works and can look after you at every step.

Getting your story published
First, the journalist or press agent will take details about you and your story and prepare a synopsis to submit to commissioning editors on your behalf. They will discuss with you where you would like to see your story published and advise you on which publications would be suitable. They should only work on selling your story once you are happy to go ahead. At this stage, you will need to provide a snapshot of yourself and, depending on your story, other relevant photos – don’t worry, they are not for publication. Commissioning editors expect to see photos that illustrate your story with the synopsis. Everything you say at this stage is off the record and your words and pictures will not appear in print. You may then be asked to sign a contract, which confirms that you will, from this point, only work with that particular journalist or press agency.

After receiving your synopsis any interested commissioning editors will offer a fee for your story. If you are happy to proceed with a publication, you will be asked to take part in a more detailed interview, either in person or on the phone. You may also be asked to sign a contract with the publication that your story is appearing in. This confirms your fee and is a guarantee that they will be getting your story as an exclusive.

How will I get paid?
You will receive payment anytime up to about four to six weeks after your story is published. The journalist’s or press agent’s service is free. The magazine or newspaper pays them separately for writing or sourcing your story.

After your story has been published, it can go in another non-competing magazine or newspaper if you want it to – either overseas or in the UK. You may also be asked to go on TV or radio programmes, all of which will mean more money for you. If you decide you don’t want any more publicity, the journalist representing you can ensure that you are left in peace and do not get unwanted press attention.

I don’t have a real-life story but know someone else with an amazing story to tell. Would I get paid for passing their details on to you?
Yes, on top of the money they get for their story, you get paid if their story is published. It means you can earn money for your friends and relatives as well as yourself.

Photos
You may be asked to take part in a photo-shoot, usually at your home or in your local area. Some magazines do photo-shoots, some not, and it may also depend on what photos you have yourself. Most people are a bit nervous before a photo-shoot but everyone enjoys the experience and you often get to keep some of the photos!

For more information about selling your story to the press, contact Jane Gregory on 01730 829379, email jgregory@btinternet.com or visit my website: http//sharingstories.co.uk

davidcameronservicecuts2disabledmovie.wmv

2010-12-20T11:01:00.000-08:00

Legal services for people with disabilities

2010-12-20T08:23:00.000-08:00

On 8 October I blogged about the DLA takeway. The charity, Contact-a-Family were calling for rules stopping the mobility component of disability living allowance after 84 days in hospital to be scrapped. We found ourselves in this situation & appealed against the decision to stop our disabled daughter's DLA because she still needs help with getting around outside the hospital. She is there for psychiatric assesment & treatment, & attends medical appointments outside the hospital, & comes home most weekends - explained in my previous blog: http://jgregorysharingsstories.blogspot.com/2010/10/dla-takeaway-for-disabled-children.html

We sought the Disability Law Service's advice over this & their solicitor advised us how to proceed witih an appeal, & said that he would take it up from there. Today, I received a reply from the DLA asking us to attend a Tribunal to discuss their decision. As advised, I returned to the Disability Law Service for their continued support but they say now that they can't help any further because the Legal Services Commission will not allow them to take on any more cases. They advised me to find a 'local solicitor.' I understand why legal aid should not be granted willy-nilly, but surely people with disabilities, particularly those with autism and complex needs, need specialist representation that is hard to find outside the Disability Law Service. Will we have to pay for our adult daughter's legal representation ourselves or will I have to be my daughter's legal representative? Scary :(

The press & beating autism stories

2010-11-23T03:47:00.000-08:00

I recently read yet another misleading & facile 'beating autism' story in the national press. This time it was about a boy with autism who learned to show love to his mum after getting a cat. The article stopped short of saying he'd been 'cured' but the implication is that by finding a simple key you can 'unlock' someone's autism. If only! I don't want to deny parents hope but unrealistic expections can lead to fruitless & soul-destroying searches for non-existent cures or treatments, & add fuel to the autism industry. (See my previous post about the autism industry.) There is evidence-based help & support out there. Parents should not feel guilty if they can't achieve the happy-ever-after result implied by these fairy stories.

How the system fails vulnerable adults

2010-11-05T04:46:00.000-07:00

For the last three years I have been fighting to get my 26-year old daughter, who has a rare chromosome abnormality & autism, the expert help and support she needs. Residential homes have said they can't manage her behaviours, expert support services have shunned responsibility and she has been pushed from one local authority to another throughout the south of England. Three times in the last year alone I have taken out litigation to try to resolve the situation. Her PCT have said that she needs a fully staffed local supported living single person service – acknowledging that residential services can't provide what she needs. But who will pay? My daughter's funding has been a wrangle between two local authorities – one arguing that her predominant need was social care provision, the other arguing that her predominant need was for health care and, in addition, they couldn't agree which area’s authority was responsible. In January this year, after litigation, one authority was forced to accept 100% responsibility for funding her health care so she could get the hospital treatment she desperately needed. This funding agreement was given 'without prejudice' & the dispute continues. We have been waiting for over 18 months for a continuing care assessment to be completed - it should take about two weeks. These delays and disputes are a means for responsible authorities to delay or avoid paying for care. It means that our daughter has not had any involvement from a care manager for the past few months as the authorities continue to shunt responsibility betweeen them - I have done their job for them. She has suffered so much and we are fearful of the future - what happens when she leaves hospital? Our much-loved, complex & vulnerable daughter has become invisible in the midst of all the funding wrangles. We can only hope that she will regain her quality of life at the end of all this - but what happens to the vulnerable that don't have families to speak for them?

Wesley Gordon, boy who became a rapist. Bad parenting or bad seed?

2010-10-27T03:04:00.000-07:00

The Daily Mail say his mother 'accepts no blame herself' for her son's descent into crime. So where did it all go wrong - what turned that cute little toddler, pictured sucking his dummy, into a violent rapist?

We're told that Wesley Gordon committed his first 'crime' at 4, throwing custard at a school dinner lady. It was downhill from then on. According to his mum, his dad hasn't been around since Wesley was a baby. So is his 'jobless mum of 3' to blame - or could he have been impossible to control, whatever kind of parenting he'd had? Nothing has been said in this report about how his siblings have turned out. His mum blames police and social workers for his inability to accept authority. Aren't those lessons learned early at a parent's knee?

Yet, according to a growing number of scientists, parents like Wesley's may not be to blame. Kids who won't behave, and go wild, may just be born that way. Will genome research ever reveal definitive answers to the age-old nature/nuture debate?

http://abcnews.go.com/GMA/Parenting/good-parents-child-bad-seed/story?id=11235893

Chemical coshes for dementia patients

2010-10-26T07:00:00.000-07:00

Reducing the use of anti-psychotic drugs for dementia patients can only be a good cut to make surely? Yet on ITV News' Facebook wall everyone's complaining about it! They're missing the point. See my previous blog about the autism industry, in which I say that anti-psychotics are used as a one-size-fits-all drug that don't work for everyone & cause nasty side-effects. They can cause early deaths in elderly patients too. Some dementia patients are being given chemical coshes because they wander a bit & there aren't sufficient staff to cope. This happens to other vulnerable people in residential homes too. My daughter was sedated AS A PRECAUTION because another resident kicked off & staff worried they wouldn't be able to cope if my daughter started too! I found out what had happened because I'd come to take my daughter home for a visit. It resulted in a Safeguarding Alert, which is a meeting to discuss what happened & review procedures to protect vulnerable adults. What happens behind closed doors when vulnerable people don't have family or anyone else to watch out for them?

Agency Nurse blamed for switching off patient's life support machine

2010-10-25T05:49:00.001-07:00

I'm not surprised this has happened. The system is failing our most vulnerable people. My daughter has severe learning disabilities & autism, & for basic day-to-day functioning needs skilled carers to use specific & consistent communication strategies. Unfortunately, although they do her best, many of her carers have been immigrants who struggle with basic english. I can't even understand what some of them say. Many vulnerable adults are looked after by fat cat privately run care providers who charge vast sums of money, yet pay their care staff very low wages.

Epilepsy

2010-10-24T07:12:00.000-07:00

How brave Min is for telling me her story about developing epilepsy out of the blue -in today's Sunday Mirror Magazine. I worked hard on this to get my facts right as, you may see from my previous blog, my daughter has epilepsy. I learned a lot by speaking to Min. It gave me an insight into how disorientated my daughter must feel after a seizure - she doesn't have the ability to tell me herself.

The autism industry

2010-10-15T02:44:00.000-07:00

As a mum desperate to help my severely autistic child, headlines such as - ‘How diet cured my son’s autism,’ always grabbed my attention. I felt sceptical. Either the child had been misdiagnosed & wasn't autistic in the first place - or the parents were fooling themselves.

It's easy to get sucked into the huge autism industry that feeds on families like ours. Understandably, parents want to do whatever they can for their child, but some such claims risk giving parents false hope. I constantly felt guilty that I wasn't doing enough to help my daughter, Chrissy. I wasted lots of time researching treatments including vitamin therapies, speical diets & environmental medicine in the hope that it might help her but, as she has a history of adverse reactions to various mainstream medications, I feared alternative therapies could cause more harm than good.

A third of parents of autistic children have tried unproven 'alternative' treatment in their search for a cure and one in ten has used what medical experts class as a 'potentially harmful approach.'

I eventually tried Chrissy, who's now 27, on the gluten & casein free diet for several months. She became anorexic & it had NO effect on her autistic behaviours.

The truth is, there is currently no 'cure' for autism. My view is that we will eventually identify more chromosome anomalies that pre-dispose people to autism. Four years ago, it emerged that Chrissy’s autism and learning disability was caused by a rare chromosome anomaly. No diet or vitamin regime can treat that. You can adapt the environment & use communication strategies to help someone with autism cope better - but you can only go so far with these approaches. I hope one day someone will come up with more effective drug treatments than the one-size-fits-all anti-psychotic drugs that learning disability psychiatrists prescribe now. Anti-psychotics don't work for everyone & can cause nasty side-effects, such as increased agitation & substantial weight gain. Maybe when we know more about the causes of autism & have better treatments, we parents won't waste so much time trying to 'fix' our children.

The DLA Takeaway for disabled children & adults

2010-10-08T02:05:00.000-07:00

Contact a Family are calling for the rules to be scrapped where a child’s DLA is stopped after 84 days in hospital. The charity has submitted a response as part of their 'Stop the DLA Takeaway' campaign to the Department of Work & Pensions.

The mobility component of our daughter, Chrissy's DLA has been stopped because she is in an independent hospital funded by the NHS, having assessment & treatment. She isn't like a usual NHS patient, confined to a ward. I take her out of the hospital for dentist, neurologist, overnight home stays etc & she goes out & about just as she did when in residential care. We have appealed & the hospital has written a letter of support - confirming that she still needs 'help with getting around.' 10 weeks on, we are awaiting a response. We have a Disability Law solicitor standing by keen to act on Chrissy's behalf if the appeal fails.

It makes me mad when there are so many shameless, undeserving people scammning the benefits system, that the most genuinely vulnerable members of our society, lose out...