Last week I went to Westminster with other families whose loved ones with learning disabilities & challenging behaviour have been supported by Mencap and the Challenging Behaviour Foundation. We told our stories to Norman Lamb MP, Minister for Care.
Another parent has kindly agreed for me to share her blog about the meeting. Please read & support us.
http://www.mencap.org.uk/blogs/my-daughter-s-out-fight-continues
Showing posts with label learning disabilities. Show all posts
Showing posts with label learning disabilities. Show all posts
Tuesday, 25 March 2014
Monday, 29 October 2012
Assessment and treatment units
A wonderful weekend with Chrissy. Her sister, Alex, and her nana were staying, & we made a Halloween pumpkin. Chrissy called it a witch! Her nana hadn't seen Chrissy for a few weeks and was amazed at the transformation in her now all the meds changes have been done.
But would this have taken place if Chrissy hadn't gone into an assessment and treatment unit? These units are getting terrible press with the latest Panorama Winterbourne View investigation on TV tonight. Politicians and learning disability charities are calling for these 'dumping grounds' to be decommissioned without delay - but don't we need robust alternatives in place first? Anyone who's read my previous posts will know that we've had our issues with Chrissy's ATU and I'm sure there are lots of awful ones like Winterbourne View - but you can't lump them all together. The truth is, it was her only lifeline. Community-based services failed her time and time again. People that present with the most challenging behaviours usually have complex needs that can't always be met in the community. Support workers need better pay & training, and don't get me started on communication. Many of Chrissy's support workers in the past have barely been able to speak English. The best learning disability psychiatrist Chrissy has ever had is the one at the ATU. It pains me to admit it, as we haven't always seen eye to eye on every aspect of Chrissy's treatment, but she's pretty impressive! Other psychiatrists that Chrissy's had in the community have been, at best, out of their depth &, at worst, haven't had her best interests at heart. In a nutshell, a vulnerable adult with challenging behaviour & complex needs can be extremely difficult to manage in the community. If community learning disability teams were up to the job, why has it taken SEVEN YEARS from the start of her deterioration for Chrissy to recover & be herself again?
We learned at last week's care planning meeting that Chrissy is due to be discharged from the ATU in the next couple of months. I'm very nervous about her leaving the unit's health-focused environment. Her epilepsy is still unstable but I'm hoping it's just a blip while the last of her previous meds leave her system - she can react strongly & paradoxically to even the smallest meds change.
To end on a very upbeat note - at the meeting, all Chrissy's therapists expressed their delight at her progress since the last lot of meds changes. They reported marked improvements in her cognitive skills, attention span & willingness to engage with others. She thoroughly enjoys going out shopping and on woodland walks and it's hard to remember the last time she disrobed during an outburst. These recent, very marked, improvements strengthen our case that she needed meds changes, not simply changes in her environment, to retrieve her quality of life. How on earth could the meds changes have been done in the community with what it has to offer currently? Badly run ATUs are the tip of the iceberg. Closing them down without suitable tried & tested alternatives in place is not the answer.
I am a SWAN UK (Syndromes without a Name) blogger
Sunday, 21 October 2012
My Life with Autism: The Supermarket - by Debbie Pollard
Debbie, mum of Matthew, aged 10, kindly agreed to guest post for me this week.
Matthew
When those of us who have autism in our families venture outside it can feel like walking through a minefield. We are only too aware of the danger. We just don't know exactly what will cause the explosion. One wrong step: BOOM!
The constant scrutiny is incidental.
Some of us feel like we are on exhibition every time we leave the house. Always on the brink of becoming some sort of grim public entertainment. There's always someone further down the food chain to feel superior to. Who needs Jeremy Kyle?
Matthew and I head for the front. Today we will enter the hostile territory of the supermarket. A logistical failure has left us without vital supplies. We are lucky enough to get a space in the relative safety of a disabled bay – our journey into the shop should present minimal risk.
Already we are attracting some interest. Well, I have parked in a disabled space and both of us can clearly walk.
Tut-tut. Blue badge nothing. She's no right parking there.
Eyes down. Focus on Matthew. I'm not ready for a staring match and I'm saving my energy for when I most need it.
In we go. I grab a basket as we pass. I don't need a trolley. We won't be buying much and, besides, I can't push a trolley and keep hold of Matthew at the same time. I know he will run, scream or lie down. But when? Where? Why? Well, I'll know when it happens.
We're in. Basket in my left hand, Matthews hand in my right. He's jumping up and down, making noises. His hood is up, providing a little sensory protection.
Why's she letting him do that?
“TOILET”.
It's the three minute warning. Matthew may need the toilet. It may just be a tactic to get away from this environment he has found himself in. This environment that I have brought him into. Either way, the toilet is the next place we are headed.
The disabled toilet is occupied.
“TOILET! TOILET!! TOILET!!!”
Heads whip round.
What a racket. Why doesn't she shush him?
Can a head really turn that fast without doing it's owner an injury? If rubbernecking ever becomes an Olympic sport, Team GB is a shoe-in for gold. Matthew is becoming increasingly agitated. How did it get so hot in here? Sweat trickles down the back of my neck. Ladies it is. We're going in, and it might not be pretty.
Horrible blueish lights in here. To stop people injecting drugs by making their veins hard to see? Energy saving? Just because someone liked them? It doesn't really matter.
Now Matthew's hands are clamped to his ears.
What's that laddie doing? He's too big: should be in the gents.
“DRYER”
“No, it's OK, no-one is using the dryer, on we go”
“DRYER”
“No, it's OK......”
Hand dryers are scary. An assault on the senses. The air pressure changes. Any bits of fluff or paper on the floor are flung around by the turbulence. Lets just hope we can get through this without one going off.
We're in, we are out. Hands washed.
“No, it's OK, Matthew, I'm not going to use the dryer”
He takes no chances though. He's been here before. Experience makes him cautious. Hands over ears, one arm linked through mine, we make our way back into the shop. I'm bent over sideways. Do we look strange? I'm sure we do. I know I'm being watched but I've got work to do.
“Good boy, Matthew, it's OK, we're back in the shop, dryer is gone”
Eh? Why doesn't she just make him walk properly?
Shelves and shelves of things to eat and play with. Trolleys and people coming from every direction. Giant freezers hum. A hundred beeps per minute from the scanners, all slightly out of sync. Chatter. Children crying. Dishes clattering and the faintly unpleasant odour of everything with chips being prepared in the café.
We head deep into the shop. It was cold near the freezers but now it's so hot. Milk. Far from the doors. Deeper and deeper. Avoid the sweetie aisle for now. To throw us, the supermarket changes it's layout now and then. I'm sharp enough to take avoiding action when necessary. Almost there. We're here. Basket on the floor. Matthew by the hand. One, two cartons into the basket. Matthew has held up well so far. Time for him to choose a treat.
I relax a little. Rookie error. Matthew slips his hand from mine and he's off. He has carried out his own visual sweep of his surroundings and spotted something I've missed. He's on it like heat-seeking missile. Packets of sweets at the end of an aisle. Of course. A well known tactic of the supermarket. How could I have forgotten? I thought we were relatively safe.
Some people just can't control their children.
Snap decision. Drop the basket and run? Just run? I choose the latter – damage limitation is all I can do now and keeping hold of the goods will make our escape a little quicker. He's at the sweets. Two packets ripped from their hooks.
Check her running in those boots
Trainers! Kit error. Still, I've caught up with Matthew. To be more accurate he has ripped open a packet of sweets and has stopped to eat them. That packet will be written off. I'll take the empty wrapper to be scanned. There's a chance for the other packet though.
“Matthew, give Mum the sweets”
“Sorry” (a word Matthew uses when anxious or unwilling to co-operate)
I only fight battles that I might win. We could carry on this wee stand off all morning. Or at least until the sweets are all gone. It could escalate until Matthew is lying on the floor screaming and I am on the verge of tears. Nothing can be achieved here.
I don't believe it – she's just letting him keep the sweets. No wonder he's so badly behaved!
Plan A was for Matthew to chose a treat. Well he has chosen it. Plan B. Quickly to the nearest or quietest check out. Avoid the ones with eye-level sweets to tempt Matthew. Damn ingenious supermarket. But at least in this one there are actually some check-outs that are sweet-free. Others are more ruthless and we're not ready to tackle those yet.
Empty check-out. I'm so, so glad. I can see the exit. Milk on the conveyor, Matthew's hand still in mine. He'll not try to give me he slip again – he knows I'm back on full alert. And, anyway, he is contentedly munching his sweets.
“Are you enjoying them sweets? Not talking son?”
Ignorant. And look at her. A smile would crack her face.
“Enjoy the rest of your day!”
“Thank you. You too.”
Got the milk. Got Matthew by the hand. The doors are getting closer. Fresh air, I can almost smell it. Out in the open. Daylight. I can see the car. Safely inside. Engine on. And breathe!
Until next time.
Debbie & Matthew
Debbie wrote this post for Act Now For Autism, formerly known as ACT NOW (Autism Campaigners Together). Act Now For Autism http://autismcampaigners.blogspot.co.uk/ is a core group of people passionate about the future and well-being of children and adults with an Autistic Spectrum Disorder in the UK. Act Now For Autism are campaigning against aspects of Welfare Reform, specifically face-to-face assessments and the Work Programme. They are ardently campaigning for advocacy to be offered to anyone who has to attend a benefit assessment.
I am a SWAN UK (Syndromes without a Name) blogger
Matthew
When those of us who have autism in our families venture outside it can feel like walking through a minefield. We are only too aware of the danger. We just don't know exactly what will cause the explosion. One wrong step: BOOM!
The constant scrutiny is incidental.
Some of us feel like we are on exhibition every time we leave the house. Always on the brink of becoming some sort of grim public entertainment. There's always someone further down the food chain to feel superior to. Who needs Jeremy Kyle?
Matthew and I head for the front. Today we will enter the hostile territory of the supermarket. A logistical failure has left us without vital supplies. We are lucky enough to get a space in the relative safety of a disabled bay – our journey into the shop should present minimal risk.
Already we are attracting some interest. Well, I have parked in a disabled space and both of us can clearly walk.
Tut-tut. Blue badge nothing. She's no right parking there.
Eyes down. Focus on Matthew. I'm not ready for a staring match and I'm saving my energy for when I most need it.
In we go. I grab a basket as we pass. I don't need a trolley. We won't be buying much and, besides, I can't push a trolley and keep hold of Matthew at the same time. I know he will run, scream or lie down. But when? Where? Why? Well, I'll know when it happens.
We're in. Basket in my left hand, Matthews hand in my right. He's jumping up and down, making noises. His hood is up, providing a little sensory protection.
Why's she letting him do that?
“TOILET”.
It's the three minute warning. Matthew may need the toilet. It may just be a tactic to get away from this environment he has found himself in. This environment that I have brought him into. Either way, the toilet is the next place we are headed.
The disabled toilet is occupied.
“TOILET! TOILET!! TOILET!!!”
Heads whip round.
What a racket. Why doesn't she shush him?
Can a head really turn that fast without doing it's owner an injury? If rubbernecking ever becomes an Olympic sport, Team GB is a shoe-in for gold. Matthew is becoming increasingly agitated. How did it get so hot in here? Sweat trickles down the back of my neck. Ladies it is. We're going in, and it might not be pretty.
Horrible blueish lights in here. To stop people injecting drugs by making their veins hard to see? Energy saving? Just because someone liked them? It doesn't really matter.
Now Matthew's hands are clamped to his ears.
What's that laddie doing? He's too big: should be in the gents.
“DRYER”
“No, it's OK, no-one is using the dryer, on we go”
“DRYER”
“No, it's OK......”
Hand dryers are scary. An assault on the senses. The air pressure changes. Any bits of fluff or paper on the floor are flung around by the turbulence. Lets just hope we can get through this without one going off.
We're in, we are out. Hands washed.
“No, it's OK, Matthew, I'm not going to use the dryer”
He takes no chances though. He's been here before. Experience makes him cautious. Hands over ears, one arm linked through mine, we make our way back into the shop. I'm bent over sideways. Do we look strange? I'm sure we do. I know I'm being watched but I've got work to do.
“Good boy, Matthew, it's OK, we're back in the shop, dryer is gone”
Eh? Why doesn't she just make him walk properly?
Shelves and shelves of things to eat and play with. Trolleys and people coming from every direction. Giant freezers hum. A hundred beeps per minute from the scanners, all slightly out of sync. Chatter. Children crying. Dishes clattering and the faintly unpleasant odour of everything with chips being prepared in the café.
We head deep into the shop. It was cold near the freezers but now it's so hot. Milk. Far from the doors. Deeper and deeper. Avoid the sweetie aisle for now. To throw us, the supermarket changes it's layout now and then. I'm sharp enough to take avoiding action when necessary. Almost there. We're here. Basket on the floor. Matthew by the hand. One, two cartons into the basket. Matthew has held up well so far. Time for him to choose a treat.
I relax a little. Rookie error. Matthew slips his hand from mine and he's off. He has carried out his own visual sweep of his surroundings and spotted something I've missed. He's on it like heat-seeking missile. Packets of sweets at the end of an aisle. Of course. A well known tactic of the supermarket. How could I have forgotten? I thought we were relatively safe.
Some people just can't control their children.
Snap decision. Drop the basket and run? Just run? I choose the latter – damage limitation is all I can do now and keeping hold of the goods will make our escape a little quicker. He's at the sweets. Two packets ripped from their hooks.
Check her running in those boots
Trainers! Kit error. Still, I've caught up with Matthew. To be more accurate he has ripped open a packet of sweets and has stopped to eat them. That packet will be written off. I'll take the empty wrapper to be scanned. There's a chance for the other packet though.
“Matthew, give Mum the sweets”
“Sorry” (a word Matthew uses when anxious or unwilling to co-operate)
I only fight battles that I might win. We could carry on this wee stand off all morning. Or at least until the sweets are all gone. It could escalate until Matthew is lying on the floor screaming and I am on the verge of tears. Nothing can be achieved here.
I don't believe it – she's just letting him keep the sweets. No wonder he's so badly behaved!
Plan A was for Matthew to chose a treat. Well he has chosen it. Plan B. Quickly to the nearest or quietest check out. Avoid the ones with eye-level sweets to tempt Matthew. Damn ingenious supermarket. But at least in this one there are actually some check-outs that are sweet-free. Others are more ruthless and we're not ready to tackle those yet.
Empty check-out. I'm so, so glad. I can see the exit. Milk on the conveyor, Matthew's hand still in mine. He'll not try to give me he slip again – he knows I'm back on full alert. And, anyway, he is contentedly munching his sweets.
“Are you enjoying them sweets? Not talking son?”
Ignorant. And look at her. A smile would crack her face.
“Enjoy the rest of your day!”
“Thank you. You too.”
Got the milk. Got Matthew by the hand. The doors are getting closer. Fresh air, I can almost smell it. Out in the open. Daylight. I can see the car. Safely inside. Engine on. And breathe!
Until next time.
Debbie & Matthew
Debbie wrote this post for Act Now For Autism, formerly known as ACT NOW (Autism Campaigners Together). Act Now For Autism http://autismcampaigners.blogspot.co.uk/ is a core group of people passionate about the future and well-being of children and adults with an Autistic Spectrum Disorder in the UK. Act Now For Autism are campaigning against aspects of Welfare Reform, specifically face-to-face assessments and the Work Programme. They are ardently campaigning for advocacy to be offered to anyone who has to attend a benefit assessment.
I am a SWAN UK (Syndromes without a Name) blogger
Saturday, 13 October 2012
Living at Home again: An Impossible Dream?
West Meon Church
A magical morning with Chrissy. We walked to the village shop for a newspaper and Maltesers. Chrissy behaved perfectly so we stopped for a photo-call in the churchyard. Later as we looked through the pictures on her laptop, Chrissy's face was wreathed in smiles as I showed her how to move the cursors around. She giggled as she made herself disappear then re-appear on the screen – now you see me, now you don’t!
Having it all - enjoying lunch, Cbeebies and today's photos!
My last post was about taking a stand. I can reveal now that it was over Chrissy's Quetiapine - I was so desperate for her to come off it that I stopped it for three days on holiday. Then I admitted what I'd done to the ATU and begged them not to re-introduce it as we had seen improvements in Chrissy's behaviour and mood. It was a rash decision on my part and I've explained my rationale on here before. I had no concerns about the risks as we had seen similar improvements when the ATU had 'forgotten' to give Chrissy half the prescribed dose for a fortnight. For reasons I completely understand her doctors reinstated the drug but immediately began to 'review it downwards.’ (They need to monitor effects.) Chrissy is now on only 50mg once a day. So far so good, although her ward nurse told me that Chrissy had been slightly more agitated at meal-times lately, bending her fingers back and asking repetitive questions about food. However, her nurses have been able to distract her.
As the weekend's gone on, Chrissy's had her moments but she's been relatively easy to pacify and fully engaged in everything we've been doing. As a general reflection of her improved mood over recent weeks, her hair is growing back and looking more lustrous (she isn't pulling it out), and her body is no longer marked by self-injury.
Now Chrissy's behaviour has settled down, I’m feeling more torn than ever about her future. We’re no closer to finding a way to set up the bricks and mortar part of the single service unit option (where Chrissy lives on her own with 24-hour support). You've seen from previous posts how some issues that crop up in residential care haunt me. Now I’m wondering again if there's any way we could make it work for Chrissy to live with us permanently.
Ian doesn't believe that living with us would be the best thing for Chrissy. He fears we could go back to square one if her condition were to deteriorate again. As there's every chance, given her history, that this could happen, anything that's put in place would need to be watertight to minimise the risks of further traumatic moves. It may sound selfish but we're in our fifties and enjoying more freedom now that our children have grown up. It would serve no one if we were to go backwards to a time when Chrissy's outbursts ruled our lives and I felt like a prisoner in my own home with her too unsettled to take out or leave with a care-worker. We would be setting ourselves up to fail if we were propelled back into the fray of pointless crisis meetings and battles to get effective medical treatment and support. So there would need to be strong contingency plans in place, for example, an immediate return to the ATU for further assessment and, if necessary, treatment - and how enforceable would those plans be? I’ve lost all faith in Chrissy's commissioners, with their endless broken promises and buck-passing.
Another question is whether we could devote the time, energy and patience to manage Chrissy's needs as they should be managed and, the biggie that terrifies all parents of disabled children - what will happen when we're gone? As one of the provisions for her future care, shouldn't we ensure that she is settled somewhere that doesn't depend on us being around?
Anyway, it’s all hypothetical right now and I may have blogged myself out of it! Ian’s far more pragmatic than me – I follow my heart but as my book title says sometimes ‘love isn’t enough.’ It’s early days and I'm jumping the gun – a date for discharge from the ATU has yet to be agreed. Chrissy's epilepsy is still not as controlled as her doctors would like it to be and if another anti-epileptic drug is trialled she will need to stay in the ATU for further monitoring as she's had such nasty reactions to the last two.
At the next care planning meeting on 22 October I propose that we ask commissioners to suggest a support package template if having Chrissy back home is a route that Ian and I could agree to explore.....
Since I published this post I was given more food for thought when another mum of a child with learning disabilities wrote a piece for the Daily Mail that included her take on the residential care dilemma. She questions whether it would be cruel to leave her daughter unprepared and unprotected when her parents die: http://www.dailymail.co.uk/femail/article-2219305/The-daughter-taught-meaning--love-Lady-Astor-pays-moving-tribute-autistic-little-girl.html
I am a SWAN UK (Syndromes without a Name) blogger
Friday, 13 July 2012
Alex: A Sibling's Story
So, for a long while, my mum (a weekly blogger about my sister Chrissy) has wanted me to write a post about what it’s like to be a sibling of someone with autism (and a rare chromosome disorder, learning disabilities, epilepsy and challenging behaviour). As the Special Saturday theme this week is ‘siblings’, she managed to bribe me into writing about my sister Chrissy in exchange for doing my washing (thanks mum!). I can’t quite put my finger on why... but I’ve been very reluctant to write this blog. I guess thinking about my childhood, and even adulthood, with Chrissy would mean me delving into my deepest, and sometimes darkest, emotions and memories. We’ve had (and still have) some extremely difficult times, but we can’t change the past. And we certainly can’t change Chrissy!
I spoke to a researcher/journalist recently who wanted to explore what it’s like to grow up with a sibling with special needs. However, the woman had no interest in all the positive things I was excited to talk about. She was probing to explore the difficulties I experienced as a young child, which got me very frustrated. Yes, I shamefully admit there have been times when Chrissy is having screaming and violent tantrums when I have thought quite honestly and bluntly “I hate you” and even “life would be far less stressful without you...” (but it would probably also be very boring!). I find it painful to remember incidents that prompted those feelings, but what makes me feel the most guilt is that Chrissy can't help the destruction she causes… She was just born that way. I understand now that I am older that this anger in such crisis situations is natural, even between ‘normal’ (I dislike that word) siblings. I hope so anyway! So what I’m trying to say is that I really don’t like to dwell on how having a sister with autism has affected me negatively. This is the life we have, and it is very unhealthy to live one’s life thinking “what if...” If we did this, we wouldn’t be able to appreciate the best of Chrissy.
I find it much more productive and rewarding to focus on the many good things that have come out of having Chrissy as my sister. Her unique way at looking at the world is fascinating, endearing and she can be so hilarious. I have many a funny story to tell of experiences with Chrissy! Most importantly, she is to thank for my most deeply-held values. She has made me grateful of the advantages I have in life, rather than complain “why me?” She has made me learn to appreciate life, make the most of everything I do, and to never waste an opportunity, because I am lucky to have these opportunities available to me. Even just the small things, like going out with my friends... Last week Chrissy was waving at me through the window from inside the house as I left to go on a night out. I got a lump in my throat thinking “poor Chrissy”, practically a prisoner in her own home. I’ve grown up seeing that people with learning disabilities should have equal value to us all, but unfortunately often do not. I will never forget the disappointment and upset (and embarrassment and shame) I sometimes felt as a child as a result of peoples' ignorant and judgmental comments when we have been in the community with Chrissy. These feelings turned to anger when I was a teenager and, luckily, acceptance now I am an adult. But it shouldn't be this way. Why should she be locked away and not allowed to participate in society just because she is ‘different’ and may not fit with 'societal norms'?! My experiences of growing up with a special needs sibling have taught me tolerance and to never judge other people and families, especially parents, as you can never truly understand what someone else has been (or is going) through.
What is most significant for me personally is that due to Chrissy's vulnerabilities, I feel so incredibly passionate about helping others and improving the lives of those who may be less fortunate than myself. I have developed this deep empathy for others with difficulties that has led me to my current career as an Assistant Educational Psychologist for the National Autistic Society. Having a sister with autism has inspired me to do; my degree in Psychology, a range of voluntary work, work as an Applied Behaviour Analysis Tutor and Special Needs Teacher for young people with autism, my current role and I am hoping to get a place on the doctorate course in Educational Psychology this year. I feel lucky to work in a profession I am so emotionally invested in.
Finally, I recently found a letter from one of my closest friends and old next door neighbour, written to me when I was moving away, which ended with "good luck getting your future job as a child psychologist." (Which she definitely didn't spell correctly!) I was in year 9 (14 years old) at the time. Even from a very young age, I was aware of all the professionals that worked with my complicated sister (and brother – but that’s a completely different story!), but I felt so powerless to help. I vowed to myself that when I was older, I would have a job helping children like my siblings, and I would care more than anyone could. I felt tearful reading the letter, as it suddenly hit me that I am doing what I always set out to do. And this is all because of Chrissy.
I think the true reason I’ve put off this blog is because I cannot find the words to describe how much my life has been enriched and fulfilled by having Chrissy in it, and I’m afraid that nothing I write will do her justice.
Chrissy aged 9 and Alex, 5
My wedding in 2003
Xmas 2008
I am also a SWAN UK (Syndromes without a Name) blogger
& this this is part of our #definenormal blogging challenge at http://www.justbringthechocolate.com/define-normal/
Saturday, 23 June 2012
Sunshine Days
Gather Ye Rosebuds While Ye May by John William Waterhouse
Mum pointed out the poignancy of these words, etched in stained glass on the front door of my childhood home in the Lake District when we went back for a visit in 2008. (Pictured in front of the door are me, my husband Ian and Chrissy's younger sister Alex).
The carefree days we'd spent there from 1968-1970 before moving back down south for dad's job, had been some of the happiest of our lives. Then, we'd been blissfuly unaware of the double whammy that lay ahead - dad's early onset Alzheimer's and the problems with his first grandchild.
Being Chrissy's mum and, of course getting older, has highlighted for me the value of seizing the moment and treasuring the good times.
Yesterday was one of those times. Chrissy was having a sunshine day, and lit up the house with her smiles, laughter and funny comments. I banished fleeting thoughts of 'I wish you'd been like this last Friday at the zoo.' With Chrissy, you have to go with the flow.
My book is threaded with references to such sunshine days - Chrissy's doctor noting her 'delightful social manner,' a trip to the circus where her whole body vibrates with joy, her uninhibited exuberance as she conducts a small orchestra at a village fete, her face wreathed in smiles at a school meeting as she shows me her record of achievement book.
Her wonderful times are as unpredictable as her awful ones - but yesterday, whatever it is that robs her of her equilibrium stayed well away. She was so joyful that she even sang to herself as she pottered around the house and, as she watched her new Snowman DVD, which I'd bought to replace one she'd broken, she enthused: 'I love Snowman!' After dinner she made us laugh by asking: 'Mummy can I have something else to eat?' and immediately admonishing herself: 'No, Chrissy, you've already had your tea.' Beaming smiles and social chit-chat replaced last week's moans, groans and outbursts. With encouragement, she was confident enough to carry out several self-help tasks independently, like taking her shoes off and changing into her slippers, and going to her bedroom by herself to choose DVDs to bring down. Normally, she demands: 'you help me!'
I've learned over the years that it doesn't matter where you are or what you're doing when Chrissy has a sunshine day - you simply bask in the warmth of its glow & enjoy it while it lasts.....
I am a SWAN UK (Syndromes without a Name) blogger
Friday, 4 May 2012
Living without a Diagnosis
I wrote this piece for Women's Realm when Chrissy was 12....
Chrissy is mad about music. Last summer the whole family went to our local fete in Hemel Hempstead where a brass band was playing. Before I knew it, Chrissy had barged past the conductor and was conducting the band herself! Fortunately the musicians found it highly amusing.
This eccentric, endearing behaviour is typical of Chrissy, who finds it impossible not to start dancing if we go into a shop with background muusic. She has moderate to severe learning disabilities but I don't know the exact nature of her problems. I've never been told what to expect from her in the future, and, hardest of all for me to come to terms with is the fact that she's never had a diagnosis.
I've battled through some tough years and I know there'll be more obstacles ahead, but I've learned to enjoy Chrissy's cheerful, funny manner and to live with her violent tantrums and obsessive behaviour.
When Chrissy was born, 10 days late, there was no indication that anything was wrong. My husband and I were thrilled with our first-born. We used to call her our 'air-traffic controller' because she waved her arms so vigorously.
The first signs that something might be wrong were feeding difficulties, poor weight gain and a general floppiness. Because I was an inexperienced first-time mum, I wasn't sure what was 'normal,' but I gradually realised that something wasn't right. I was gripped by a terrible anxiety and would be awake at night wondering what it could be. Every time I talked to my husband about it, we argued, and he made me feel that I was wishing problems on Chrissy. My mum agreed that something might be wrong, though she said my sister, brother and I were all late developers. My brother didn't walk until he was 18 months old and went on to read history at Oxford University!
When I look back over the early, bewildering times, I wonder if I would have enjoyed Chrissy more if I had expected less of her. I spent ages coaxing her to do what other babies did naturally - to reach out and touch a toy, or eat something. I couldn't help comparing her to other babies around the same age who were larger and more forward than her.
After a health visitor noticed Chrissy's poor head control, she was referred to a paediatrician. By then she'd started to have epileptic seizures so she was sent for a brain scan. We were told it was normal and that Chrissy was a delayed developer. When I asked questions I felt that I was being dismissed as a neurotic first-time mum.
Whenever Chrissy was admitted to hospital with her uncontrollable seizures, I'd sneak a look at her notes, wondering if they contained clues as to what doctors suspected was wrong. I remember reading one note by Chrissy's paediatrician: 'Mrs Gregory came to see me, worried as usual. Asked again if her daughter was handicapped.'
I went through a sort of grieving process. Sometimes I felt angry; at other times I would cry myself to sleep. I began to read books to try to diagnose Chrissy myself. I read one book about a family coming to terms with having a baby with Down's Syndrome, and began to think how different it must feel to have a label given to your child early on - but then I realised that many children with recognised syndromes don't follow a guaranteed pattern of development. Some children with Down's Syndrome have profound learning disabilities with life-limiting health problems while others are very able and healthy. It was some comfort to learn that, for about 40 per cent of children with learning disabilities there is no known cause or name for their set of symptoms.
After much persistence on my part, Chrissy was referred to the Great Ormond Street Genetics Clinic when she was nearly two. The geneticists tried to answer every question I had and gave the impression that they had all the time in the world for us. Every inch of Chrissy's body was examined, and all abnormalities, such as her weak muscle tone and short stature, were logged into a central computer to see if they were indicative of a certain genetic condition.
Two syndromes were suggested as possibilities but chromosome tests were needed. I looked through medical books and couldn't see how her particular characteristics fitted either syndrome and, in due course, we were were told that Chrissy's chromosomes were normal.
My search for answers continued. We were seen about every four years at the genetics clinic. One geneticist thought Chrissy was similar to children he'd seen with something called Smith-Magenis Syndrome. When I read more about these children I thought I'd finally found out what was wrong - Chrissy shared so many similarities with them, such as prolonged periods of distress and her way of flapping and clasping her hands in a strange manner - but the tests showed that Chrissy didn't have the characteristic deletion on a chromosome that's associated with Smith-Magenis Syndrome.
At this point, I stopped searching for answers. I saw how fruitless it was to be so fixated on the idea of a diagnosis - after all, we'd already learned to accept Chrissy's problems and love her as she is.
Our day-to-day life can sometimes be fraught. It's difficult for us to go out as a family because Chrissy finds new environments unsettling. Sometimes I dread taking her out on a routine outing - say to buy her new shoes - because her behaviour can be so unpredictable, and her siblings get upset when Chrissy barges into their rooms uninvited or breaks their possessions. As she grows older her outbursts become more difficult to manage. She still has prolonged periods of distress with no apparent cause. We call them her 'screamings' and they can last for over two hours. Sometimes she'll have two or three in one day and will deliberately harm herself. No one can tell me why she behaves like this and, although I've dealt with them for years, they still upset me.
Yet, despite the challenges Chrissy's brought us, she has shown us a unique way of looking at the world. I love it when I see Chrissy sitting with Alex or Jamie, singing along to music tapes, or when she copies people's facial expressions or says something to make us laugh. Whatever her problems, we're very lucky to have Chrissy as part of our family.
I am a SWAN UK (Syndromes without a Name) blogger
Saturday, 3 March 2012
Good Care Planning & Changing Needs
We managed a walk to the village shop yesterday:-) There were a few hairy moments when we got there as Chrissy was like the proverbial kid in a sweet shop & got paralysed with indecision, then wanted everything in sight. Giving her a basket to put her goodies in reduced her anxiety (once she'd made it 'symmetrical' by re-arranging the handles). As we got near home I praised her for being a 'good lady' &, as you can see from the photo, she cheered!
I'd been inspired to take Chrissy out again after being told at her CPA (Care Planning Approach) meeting yesterday morning that her carers had taken her to M&S & a couple of other places without any major dramas.
Chrissy has two CPAs a year where the professionals and I sit around a table to discuss and plan her future care needs. Anyone with a range of complex needs like Chrissy's is entitled to have a care plan that's regularly assessed and reviewed. At the meeting everyone agreed that since recent drug changes Chrissy remains much more alert and interested in engaging with activities. The downside of this 'awakening' is that her outbursts are more violent, and she has hit staff and pushed tables over. We haven't seen this degree of aggression at home but she's more diva-ish than ever with a steely determination to get her own way. Last night she refused to go to bed until the early hours. There's no point in trying to force the issue so we turned all the downstairs lights off & left her to it. She soon came up and said 'you put me to bed,' but when we tried, she got caught up in her rituals, moving things around in her room so surfaces were clear and certain items, like her cover, were symmetrical. She kicked off several times but we got there in the end. We had the same rituals this morning at breakfast time. It tried my patience so much that I wanted to throttle her but Ian was amazing with her, & managed to de-escalate several potentially explosive situations by keeping calm and, somehow, just knowing exactly what to say & do at the right moment.
We still have some way to go before Chrissy is stable enough to leave the assessment and treatment unit and I still feel no clearer about what sort of home setup will suit her best. Now she is more alert her needs are changing and we need to look at a range of options. Cluster homes were suggested, which means that Chrissy would have her own space but be able to socialise when she chose. The commissioners can invite tenders from service providers, and we can be part of the interview and selection process. Right now, this seems to be the best way forward but we will have to see what can be provided locally.
I had been feeling very frustrated over how slowly things seemed to be moving, & the feeling that I'd had to drive every step forward, as described in previous blogs - but there's nothing like getting round a table to thrash things out with someone taking a strong lead - in this case Chrissy's impressive new psychiatrist.
Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/
Friday, 24 February 2012
Can children Grow out of Autism?
Did you read the Daily Mail story 'Can some children simply 'grow out of autism?' http://www.dailymail.co.uk/health/article-2103940/Autism-Can-children-simply-grow-One-mother-tells-sons-life-transformed.html I was irritated and perplexed by it, not least because it wasn't made clear whether Josh, the nine-year old in the story, who was diagnosed at three, still had a diagnosis of autism!
I was interested to see a piece on the NHS Choices website describing the Mail's claim as 'misleading' and offering a 'false impression to the parents of children with autism:' http://www.nhs.uk/news/2012/02February/Pages/children-grow-out-of-autism-claim.aspx
I suspect most cases of a child 'growing out' of autism are in fact initial misdiagnosis, perhaps made too early before the picture becomes clearer. Other overlapping conditions, such as developmental delay, can cause similar symptoms and diagnostic overshadowing. I'm not convinced by the early interventions argument. Although early interventions can improve problems associated with autism they can't cure it. In our experience identifying signs of autism can be open to interpretation and its diagnostic criteria has widened over the years. Is it being diagnosed too readily these days?
Far from growing out of autism, Chrissy appeared to grow into it! Autism was first mentioned by her speech therapist when she was four, who said that although she had very few words that she used 'parrot-fashion' like someone with autism, she used imagination when playing with a doll. (I think she brushed the doll's hair or spoke to it.) Another doctor described Chrissy as 'unautistic' because she was social and affectionate - the very opposite of the withdrawn and isolated child in a world of her own that used to be considered 'classic' autism. In fact, a paediatrician told us: 'Your daughter can't be autistic because autistic children don't speak.'
As I've explained here before, years later when Chrissy was 22, her psychologist diagnosed her with a form of autism classified as 'active but odd,' a diagnosis confirmed by Lorna Wing, MD, Psychiatric Consultant at the National Autistic Society, who checked the psychologist's extensive report. In 2010, a consultant psychiatrist from The Maudsley Hopsital's Autism Assessment Clinic confirmed the presence of autism from an early age after reviewing old videos of Chrissy. He noted her odd postures and facial expressions, and how she flapped her hands in front of her face even at six.
Looking back, Chrissy's autistic traits have waxed and waned over the years. When she was little she often appeared to ignore us when we spoke to her, but we put it down to her severe glue ear, then everything was attributed to her developmental delay. She's always had obsessive/compulsive traits - lots of verbal repetition and switching lights on and off - but taken alone they didn't signify an autism spectrum disorder. Her severe outbursts weren't triggered by changes in routine or anything else that seemed particularly autistic, but her problems with small daily transitions appeared to get worse as she grew older.
Around the time the photo on here was taken, she was going through a phase of turning everything round the wrong way and upside down in her bedroom but that's long since passed. Her over-friendliness has confused the picture in the past but it's now on the wide spectrum of socially inappropriate behaviour that people with autism display. I remember watching Rain Man for the first time back in the eighties when it first came out. I enjoyed the film then but didn't associate Raymond's problems with Chrissy's but each time I've seen it since the parallels are so obvious I keep gasping: 'Oh my God - that's Chrissy!'
These days, Chrissy has frequent spells of very autistic jumping up and down, flapping and screeching but not all the time thank God! Maybe some of these behaviours were always there but less noticeable in a small person but I do think Chrissy is less able to adapt to her environment than when she was little. She was more flexible and reslient then. Maybe she had to be because we didn't know what was wrong and expected her to fit in with the rest of the family. As she grew bigger the tables slowly turned and she either grew into autism or we were no longer able to resist its awesome power!
Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/
Friday, 20 January 2012
Person Centred Planning
Person centred planning (PCP) is a way to support people with learning disabilities to plan how they would like to live their life as fully & independently as possible. Anyone with a learning disability can have a PCP, even if their communication is limited, as PCP is done in consultation with people who love them and know them well.
Chrissy has been in a therapeutic unit for two years and, although she's not yet ready to move on, we need to start planning her future now. The Challenging Behaviour Foundation advised that this can take 12-18 months for someone with such complex needs.
A PCP professional visited me on Wednesday and showed me an example PCP. It included gems such as 'When I sing Bohemian Rapsody watch out. I'm not singing happily - it's a sign that I'm about to lose control and I may throw something at you!'
With Chrissy, I follow my instincts, and take so many of her quirks & rituals for granted that it's difficult to convey her support needs to someone else. However, seeing the colourful detail in the example opened the flood gates. I found myself able to take the PCP professional step-by-step through Chrissy's daily routines. I explained that when Chrissy comes downstairs for breakfast she must have the larder and kitchen doors shut, lights switched on, the area around her chair cleared of any objects that she deems shouldn't be there, her two favourite drinks with two straws, a carrier bag with handles tied in a bow containing her chocolate mousse and a banana......
After all that and more, she will only eat her egg on toast, cut up, with two splodges of tomato sauce, when she's good and ready, usually when it's stone cold!
Explaining the detail of Chrissy's daily routines also helped me to gain more insights into her support needs, which I can pass on to professional carers. For example, I instinctively know when to make myself 'invisible' for Chrissy to adjust to transitions and self-calm. It may mean removing myself from view and watching silently from a safe distance, or simply avoiding eye contact and using minimal communication. When Chrissy arrives for her weekly visits home, I try to get her coat off and settle her into my routine, but the penny's dropped that she needs initial time to herself to wander freely from room to room to adjust to her new territory. She will eventually approach me and say something like: 'Mummy, I want to go on my computer.'
PCP reminded me how important carefully managed approaches are to support Chrissy effectively. The daily management aspects of her needs should be sufficiently met in a single service unit close to her family with a team of carers that know her well - but there are other considerations. Key is the proximity, skill and responsiveness of a multi-disciplinary clinical team. Failings in this area contributed to the breakdown of two residential placements, which caused her untold trauma. When it comes to 'what next?' for Chrissy, we must get it right this time.
Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/
Saturday, 14 January 2012
Epilepsy & Behaviour
Since Chrissy's Topiramate has been swapped with Pregabalin, she's had two clusters of night-time seizures, one requiring rectal Diazepam. This is Chrissy's usual pattern but seizures were infrequent on Topiramate - the price she paid was being over-sedated, though not enough to quell her self-injurious outbursts. When her seizures started up again I hoped she'd get a break from her outbursts. They tend to be less severe during seizure cycles but this pattern has got less apparent as she's got older.
The reciprocal relationship between epilepsy and behaviour is recognised among medical professionals. It's like a pressure cooker releasing steam. Chrissy would have a build-up of challenging behaviours then seizures followed by a brief period of calm. When she was little I thought there was even more to it than that, and became convinced there was an epileptic component in the severe self-injurious outbursts. Chrissy's school teachers felt the same, and described the way 'something just came over her' as she sat doing something that she enjoyed. I became increasingly frustrated that health professionals were dismissing these outbursts as purely behavioural - as if they'd cease in a different environment.
When Chrissy was 10 my frustrations boiled over...
She was in Great Ormond Street Hospital for a routine MRI scan. A general anaesthetic was arranged because she wouldn't have co-operated, & she was given a pre-med. It sent her to sleep but she woke up when she was moved from her ward to the scanning room, and exploded into an outburst. She bashed her head repeatedly against the metal bars of her bed and tore at her skin. 'Now at last her neurologist will see one of these & organise investigations to find out what's going on,' I thought. How naive I was!
The hospital nurses were shocked at Chrissy's distress. One nurse, who'd worked in child psychiatry for years, said that she'd seen children with mental health problems in meltdowns before but this went way beyond that. Normally they gave up when they were exhausted but Chrissy appeared to be in the grip of something beyond her control.
The neurologist was called to the ward. He appeared, flanked by junior doctors, took one look at Chrissy, who was thrashing around on the floor by that point, and said: 'That's behaviour.'
As he turned on his heel to walk away, red mist descended & I threw questions at him like darts: 'If it's behavioural then how come she's had these from infancy? Why do they wake her at night? Why are they triggered by general anaesthetics & some medications? Why doesn't any intervention stop them? Why are they self-limiting? Why are they cyclic and worse in late afternoon? (as they were then) What about the strange physical symptoms - complaining about sore eyes, clawing at her face and extremities as if they hurt? What about the reciprocal relationship with the seizures?'
The neurologist insisted: 'What we're seeing now probably isn't the same as those you saw when she was a baby. This doesn't look like any seizure that I've seen. Epileptic episodes don't last as long as this. They're behavioural.'
I stormed off and had a good cry.
When I calmed down and returned to the ward, the neurologist took me into a side room and explained: 'I doubt that what I observed is caused by epileptic activity but I agree that there appears to be a reciprocal relationship between the seizures and behavioural outbursts. We really don't know what they are but behaviour sometimes worsens in children with epilepsy when seizures were well controlled.'
He decided to try a new anticonvulsant - Gabapentin.
Almost immediately Chrissy slept through the night for the first time in weeks. Two days later, the first thing I noticed when she came home from school was her smiley face and pink cheeks. (She looks pale & wretched when she's going through an outburst cycle). I asked her for a kiss. 'Screaming's gone.' she said.
Her teachers reported that she'd been 'brilliant,' amenable and well-behaved at school. I felt ridiculously emotional. Surely it was too early to be Gabapentin? Maybe it was a delayed reaction to all the pre-op sedation & general anaesthetic?
In fact, it was probably Chrissy's emergence from another bad cycle of outbursts but, when she's well, I always feel giddily optimistic that it will last. I rang friends and family to tell them about the change in her. 'Don't count your chickens....' they gently warned me.
Taken from my book: 'Bringing Up a Challenging Child at Home.'
I am a SWAN UK (Syndromes without a Name) blogger
Friday, 9 December 2011
Invisible in the Community
Chrissy (in purple, 2nd from right, at a MENCAP party aged 7)
It hit me when I was searching our family albums for another photo.
So many pictures of Chrissy engaging with people, fully involved in the hurly burly of life. Dressing up for Halloween and making 'witchy' faces with her sister; sitting at a table, eating birthday cake, surrounded by people and chaos; dancing around and introducing me to her peers at her 18th birthday party; giggling with her brother on a fairground ride.
What happened? How did we get to where we are today - in a locked ward on an assessment & treatment unit?
Despite the government's efforts to end social exclusion, people with learning disabilities are still amongst the most marginalised groups in society - but it isn't bullying or prejudice that makes Chrissy invisible in the community. She simply isn't able to function outside her comfort zone. The severity of her autism, stripping & self-injurious behaviours have effectively isolated her from the world.
Chrissy's involvement in family events has dwindled. She came to our wedding in 2003, albeit with two helpers, and a family christening a couple of years later. She managed (again with two helpers) for an hour or two at my 50th birthday party last September, which made my night. Now we can't even take her up the road to the village shop or, God forbid, to a restaurant.
It means that Chrissy's outings are restricted to our garden or the assessment & treatment unit's grounds. Even on good days, we can't risk taking her anywhere other than straight to the car when we take her back to the unit. She's too unpredictable.
Looking back, Chrissy had become increasingly difficult to manage as she'd grown bigger. Holidays together as a family and trips to the supermarket were the first to go. Then we had a few years' reprieve in her teens with the transforming medication regime before the most severe challenging behaviours kicked in again during her twenties. Her autism crept up on us - hand-flapping, turning switches on & off, getting stuck - unable to transition to the next activity, repetitive questions, turning items in her bedroom back-to-front - but, because she was still sociable and affectionate, it went undiagnosed until she was 22.
Have the effects of her chromosome disorder become more marked & pervasive as she's grown? Has her epilepsy, poorly controlled when she was little, caused brain damage? Should she have had the triple vaccines as an infant? Did behaviour management interventions come too late? Is some of her medication making her condition worse? There are no answers and it's a case of trial & error. For now, we make the most of the good days and continue to work on the rest.
Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/
Friday, 25 November 2011
Communication - a #SpecialSaturday post
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.
Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/
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.
Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/
Friday, 18 November 2011
Special Saturday - What I'm thankful for
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!
Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/
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!
Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/
Saturday, 12 November 2011
Antipsychotics
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?
Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/
I’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?
Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/
Friday, 28 October 2011
#Special Saturday - How does having a child with additional needs affect your family?
It all started so well...
I asked my youngest daughter, Alex, how she felt her life had been affected by having Chrissy as a sibling. She shrugged & said: 'I've never known any different.' She agreed that it had forced her and her brother to grow up too quickly and take on responsibilities beyond their years. Many instances that illustrate this are in my book 'Bringing Up a Challenging Child at Home.'
I felt guilty about having two more children when Chrissy was so demanding but I had no idea how severe her needs would be - caring for her got more challenging as she grew older & bigger. You expect toddlers to be a handful but Chrissy never grew out of that stage. Living with her extreme, unpredictable, violent mood swings day after day took its toll on everyone. Her siblings had to take second & third place & no child should have to do that. I've had to dig very deep in order to cope, & I've no doubt her siblings & my husband have too.
We’ve always tried to involve her in family activities and do things that typical families do but it's a gamble. You can't predict how she'll react. Many family outings have been cut short due to Chrissy's unpredictable outbursts but we have had some resounding successes, although admittedly not recently.
What happened at the weekend gives a snapshot of how Chrissy’s needs affect family life. She was in a jolly mood & we’d seen none of the major SIB of the past few weeks. She was engaging with activities we did with her, & was very inquisitive and chatty, delighted to have Alex around, who was home from university. On Friday evening, as I sat holding Chrissy's hand, I felt a gentle caress on my thumb. I looked at her in amazement and she was smiling benevolently at me! Chrissy hugs me but she's never caressed me before. On Saturday morning someone called round selling poppies for Remembrance Day. 'Which one would you like?' the seller asked. ‘A chocolate one,' said Chrissy, making us roar with laughter.
The signs were good and it was such a beautiful autumn morning, I decided to take Chrissy to the village shop, about 1/4 mile away. The photo shows Chrissy just after we'd set off. She seemed happy enough walking alongside me but kept asking 'are we having sandwiches for lunch' & swapping which of my hands she held. Halfway there, she got so obsessed by swapping hands, we got stuck. I tried to turn back but it was already too late - she threw herself on the pavement screaming & rubbing her nose until it bled. My stomach was in knots as I feared she'd strip off. I called Ian & he brought the car round to rescue us.
I shouldn't have risked it really but I still get fooled when Chrissy is calm. If I stopped trying to take her out I’d be giving up on her. Episodes like this remind me of the difficulties of balancing family life with Chrissy’s needs when she lived with us - but, as Alex says, we never knew any different.
Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/
Friday, 21 October 2011
#Special Saturday Post: What My Daughter's Special Needs Are
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.
Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/
Friday, 14 October 2011
#Special Saturday post - Groundhog Day
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.
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.
Friday, 16 September 2011
A #Specialsaturday Post - Uncertain Times & Embarrassing Moments
The meeting we had yesterday to plan Chrissy’s future care was chaotic & disheartening. There was a roll call of apologies for absence – people worked on different days, a ward ‘crisis,’ someone away on a training etc. One of Chrissy’s care managers was present but he has no influence as his authority are not paying for her care. No one from the commissioning authority (funding ‘without prejudice’) attended. The psychiatrist has been unable to get hold of anyone there, which means we can’t plan Chrissy’s future.
I’ve already blogged about the funding dispute that’s leaving Chrissy in limbo. It will take a long time to plan her next placement as we need to get it right this time. A robust healthcare support infrastructure needs to be in place for starters. Another placement breakdown would be disastrous for Chrissy. The appalling state she was in through the latter part of 2009 still haunts me.
The hospital admission in January 2010 has improved Chrissy’s life. She is far more stable than she was 18 months ago but these changes have plateaued over recent months and we fear there will be little or no further improvement because the institutionalised environment isn’t geared up for her autism. There aren’t enough stimulating accessible activities offered. For months we were promised sensory integration therapy (‘The missing piece of the jigsaw,’ Chrissy’s speech therapist had said in March). Yesterday we learned that there had been a U-turn – they can’t supply it as part of the package; extra funding will have to come from the commissioners - the ones they can’t get hold of!
The meds changes took months to start due to all sorts of reasons (including the funding dispute) but we can’t thank Chrissy’s neurologist & psychiatrist enough for flagging up their concerns about one of her anti-epileptic drugs, Topiramate. We marvel over how much she’s ‘woken up’ since it was reduced from 50mg a day to 15mg. She is far more aware of her surroundings, and full of quirky observations & funny comments again. Last night, I was having eyelash extensions done for a special occasion. Chrissy was in the same room, playing quietly on the computer under Ian's watchful eye. Suddenly, she sat bolt upright, & announced: 'I poo myself in the kitchen.' The lady doing the eyelash extensions froze then we both collapsed into giggles as I explained that Chrissy probably felt the urge to go but had her tenses mixed up. There have been many potentially embarrassing moments like this but we just find them endearing, entertaining & funny. It's a good sign as it shows her irrepressible personality is no longer being clouded by too much - or the wrong - medication.
Embarrassing moments are part of what makes Chrissy who she is. We welcome them back!
This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe. Please join the cause by joining the Facebook page - http://www.facebook.com/SpecialSaturday
Following on Twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturday.org/home/
I’ve already blogged about the funding dispute that’s leaving Chrissy in limbo. It will take a long time to plan her next placement as we need to get it right this time. A robust healthcare support infrastructure needs to be in place for starters. Another placement breakdown would be disastrous for Chrissy. The appalling state she was in through the latter part of 2009 still haunts me.
The hospital admission in January 2010 has improved Chrissy’s life. She is far more stable than she was 18 months ago but these changes have plateaued over recent months and we fear there will be little or no further improvement because the institutionalised environment isn’t geared up for her autism. There aren’t enough stimulating accessible activities offered. For months we were promised sensory integration therapy (‘The missing piece of the jigsaw,’ Chrissy’s speech therapist had said in March). Yesterday we learned that there had been a U-turn – they can’t supply it as part of the package; extra funding will have to come from the commissioners - the ones they can’t get hold of!
The meds changes took months to start due to all sorts of reasons (including the funding dispute) but we can’t thank Chrissy’s neurologist & psychiatrist enough for flagging up their concerns about one of her anti-epileptic drugs, Topiramate. We marvel over how much she’s ‘woken up’ since it was reduced from 50mg a day to 15mg. She is far more aware of her surroundings, and full of quirky observations & funny comments again. Last night, I was having eyelash extensions done for a special occasion. Chrissy was in the same room, playing quietly on the computer under Ian's watchful eye. Suddenly, she sat bolt upright, & announced: 'I poo myself in the kitchen.' The lady doing the eyelash extensions froze then we both collapsed into giggles as I explained that Chrissy probably felt the urge to go but had her tenses mixed up. There have been many potentially embarrassing moments like this but we just find them endearing, entertaining & funny. It's a good sign as it shows her irrepressible personality is no longer being clouded by too much - or the wrong - medication.
Embarrassing moments are part of what makes Chrissy who she is. We welcome them back!
This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe. Please join the cause by joining the Facebook page - http://www.facebook.com/SpecialSaturday
Following on Twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturday.org/home/
Friday, 9 September 2011
A #Special Saturday Post - How Having a Special Needs Child has Changed My Life
I've already written extensively on here, & in my book & parent's perspective chapter about the bigger picture of how having a special needs child has changed my life. Here I'll just give you a snapshot....
As soon as she walked through the door yesterday afternoon Chrissy demanded 'mummy's computer.' She then took over my office & nicked my reading glasses. In the photo she's watching Andy Pandy, which she loves. 'Bye mummy!' she called, no doubt hoping I'd go away so she could hack into my laptop. Left to her own devices, she manages to delete programmes and generally cause cyber mayhem.
Cranky spells peppered Chrissy's stay but, just as I thought she was going to kick off, the mood passed & she became jolly & talkative. Yesterday evening, she sat on the settee, sandwiched between Ian & I, with her catalogues & cookery books spread out around her. She nagged us to 'find the girls' in her catalogues. We found pages of them. 'No GIRLS,' Chrissy pressed on querulously, bending her fingers back & twisting her hands together - a bad sign & an ideal time to try out her new big fat weighted blanket.
It did the trick (but we still don't know what sort of 'girls' she wanted).
'Tuck it my knees,' demanded The Diva (our new nickname for Chrissy). 'Make it square.' Then, when she was swaddled in it up to her chest she ordered us: 'Hold my hands.' Remembering how she likes pressure on the outside of her hands, I gripped one of them tightly.
Peace reigned at last. We even caught the last 10 minutes of Outnumbered, which kept Chrissy amused. She smiles with benign indulgence when we laugh & sometimes joins in - but I suspect she finds the sight of us funnier than the object of our mirth. She's very inquisitive & sometimes appears to be as intrigued by our behaviour as we are by hers.
Today, Chrissy kicked off because I wouldn't let her back on my laptop. She had switched it off & done something to our anti-virus software, which Ian had to reload. I videoed her screaming on the floor with one leg up in the air then replayed it to her after she'd calmed down. She watched, transfixed, but without expression. 'What's Chrissy doing?' I asked her. 'Crying,' she said matter-of-factly. So what did I learn from this exercise? Bugger all but it was worth a try. It might have made her realise how silly it was for a grown woman to have a toddler-like paddy....
Subscribe to:
Posts (Atom)