Ineffectively met communication needs are triggers for challenging behaviours. We use communication strategies akin to those suggested by The Challenging Behaviour Foundation and Jill Bradshaw at the Tizard Centre, who both kindly allowed me to use their ideas in my book 'Bringing Up a Challenging Child at Home.'
Positive statements about what a child is going to do are much clearer than telling them what they're not going to do. For example, if we say to Chrissy 'You're not going in the car, she only hears 'Chrissy' and 'car,' and gets distressed when she realises she will have to walk. The message would have been clearer to her if we'd told her what she was going to do: "Chrissy, you're going for a walk."
Abstract concepts are particularly difficult to understand. If I ask Chrissy what she's been doing that day she can't tell me. If I ask her what colour top I'm wearing, particularly if I point to it, she answers me correctly. Her verbal communication is misleading. She is able to understand simple phrases and use learned 'parrot fashion' phrases in context - called social masking.
Much of Chrissy's communication is stream of consciousness observations. She was sitting next to me earlier and looking around the room. "It's a mirror," she observed. Then answered herself with: "It certainly is." She began to list what she saw. "It's a yellow flower and trainers and brown. Home. Brilliant." *Thumbs up sign* She then turned to Ian, my husband, and asked: "You fine Ian?" "Say yes!" *Sign for yes.*
Chrissy can follow simple instructions involving up to two named objects, ie 'put your cup on the table.' Her expressive communication is limited. She can’t tell you if she feels hot, cold, hungry or sad, and will use behaviour rather than words to express her emotional needs. We use a combination of verbal, basic Makaton sign language and symbol aids to help her move through her day. Using communication strategies are crucial to help her to stay calm and they have to be adapted according to her mood. It's draining when she repeats the same question endlessly, and demands a specfic response each time - but fantastically rewarding when she deviates from her learned phrases and makes a meaningful attempt to communicate with us.
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Showing posts with label communication. Show all posts
Showing posts with label communication. Show all posts
Friday, 25 November 2011
Friday, 17 June 2011
Animals, Bedtime Rituals and Autism
Just Chrissy & I this evening as Ian, her stepdad, has gone to pick up my youngest child from uni. I managed, by a combination of knowing when to be firm & when to indulge, to keep the peace until 10pm.
Anticipating what Chrissy will do next is exhausting. I left her looking at 'toast & jam' in the kitchen equipment pages of her Argos catalogue to get something from another room. All was quiet. Then she came in & told me she had 'kicked' the cat, 'hurt' the cat, & said something I couldn't grasp about the cat's tail. It didn't bode well.
Our two cats were nowhere to be seen for a while. Then they eventually slunk back into the house looking wary but unharmed. Chrissy either ignores them, notices details about them ('look at cat's necklace' when it had a new collar) or torments them when she gets the chance, sometimes playfully, sometimes suddenly pulling their tails & alarming them. She knows it’s wrong on one level because she grasses herself up – she’s totally guileless – but I suspect that she is also entertained by our reaction. When she's in that mood the cats normally give her a wide berth & she may have been saying she'd hurt them before thought became deed. She sometimes says she's done something, ie wet herself, when she wants to do it, ie go to the toilet. She is confused by tenses & sequences of events.
Chrissy was intent on further mischief by then & went into the kitchen to demand 'grey cup,' which means a glass tumbler. I use plastic cups as she's prone to throwing them when she’s agitated. My refusal to let her anywhere near a glass tumbler resulted in her first outburst of the evening. It was relatively mild, lots of guttural roaring, hair-pulling & hand-biting - it didn’t progress to stripping off & running around the house, as it did last week. She was over-tired I think & undergoing meds changes that may be making her feel strange.
Once she calmed down I managed, aided by symbols for 'clean teeth' & 'sleep' to lure her upstairs to her bedroom. We then had a great fuss over her 'cushions' - she asked me to turn them over several times - & her blanket. I haven't figured out what the issue is with her blanket. She kept saying ' do my cover.’ I pulled it up & tucked it over the top of her duvet so she could hold it, & settled it around her but she kept on. 'What exactly do you want me to do with your blanket?' I demanded in exasperation. 'Make it square,' she said. I did my best to comply but I'd made it square & neat over her anyway. She eventually settled down & I asked her if she was happy with it. 'Yes,' she said, allowing me to kiss her goodnight & leave her room.
Now I can hear her in bed repeating 'do my cover.' This happens during the night too. I’ve just gone through the whole pantomime again with her, tucking it this way & that, & she’s still repeating ‘do my cover/do my blanket.’ Bloody maddening. Need a solution....
Anticipating what Chrissy will do next is exhausting. I left her looking at 'toast & jam' in the kitchen equipment pages of her Argos catalogue to get something from another room. All was quiet. Then she came in & told me she had 'kicked' the cat, 'hurt' the cat, & said something I couldn't grasp about the cat's tail. It didn't bode well.
Our two cats were nowhere to be seen for a while. Then they eventually slunk back into the house looking wary but unharmed. Chrissy either ignores them, notices details about them ('look at cat's necklace' when it had a new collar) or torments them when she gets the chance, sometimes playfully, sometimes suddenly pulling their tails & alarming them. She knows it’s wrong on one level because she grasses herself up – she’s totally guileless – but I suspect that she is also entertained by our reaction. When she's in that mood the cats normally give her a wide berth & she may have been saying she'd hurt them before thought became deed. She sometimes says she's done something, ie wet herself, when she wants to do it, ie go to the toilet. She is confused by tenses & sequences of events.
Chrissy was intent on further mischief by then & went into the kitchen to demand 'grey cup,' which means a glass tumbler. I use plastic cups as she's prone to throwing them when she’s agitated. My refusal to let her anywhere near a glass tumbler resulted in her first outburst of the evening. It was relatively mild, lots of guttural roaring, hair-pulling & hand-biting - it didn’t progress to stripping off & running around the house, as it did last week. She was over-tired I think & undergoing meds changes that may be making her feel strange.
Once she calmed down I managed, aided by symbols for 'clean teeth' & 'sleep' to lure her upstairs to her bedroom. We then had a great fuss over her 'cushions' - she asked me to turn them over several times - & her blanket. I haven't figured out what the issue is with her blanket. She kept saying ' do my cover.’ I pulled it up & tucked it over the top of her duvet so she could hold it, & settled it around her but she kept on. 'What exactly do you want me to do with your blanket?' I demanded in exasperation. 'Make it square,' she said. I did my best to comply but I'd made it square & neat over her anyway. She eventually settled down & I asked her if she was happy with it. 'Yes,' she said, allowing me to kiss her goodnight & leave her room.
Now I can hear her in bed repeating 'do my cover.' This happens during the night too. I’ve just gone through the whole pantomime again with her, tucking it this way & that, & she’s still repeating ‘do my cover/do my blanket.’ Bloody maddening. Need a solution....
Sunday, 12 June 2011
Medication and Autism
Chrissy has been having an unsettled couple of weeks for no obvious reason. I was concerned to see that two Paracetamol three times a day have been added to the long list of medications she's on. Since she's been in hospital there has been an increase in the number of prescribed medications rather than the decrease I'd hoped for. She has been on Movicol, a medication for constipation, for months now. Chrissy has never suffered from constipation at home, but medical professionals have advised us that she has shown symptoms on the ward &, like many of their patients, becomes very irritable when she needs a poo, & Movicol is an exceptionally gentle laxative without unpleasant side-effects. I have asked several times how much longer she needs to be on it but have been advised that it should continue for the forseeable future as stopping it would make her more irritable/cause discomfort. I want further reassurance that this is not a case of medication overuse & will mention my misgivings again.
Chrissy is also on Epilim & Topiramate for epilepsy but Epilim has been increased for withdrawal of Topiramate; her psychiatrist & neurologist don't like giving Topiramate to people with learning disabilities as it can worsen behaviour problems & increase confusion. She is on Quetiapine (an antipsychotic) too. It was started after she had nasty side-effects from Risperidone, the first-line antipsychotic given to treat irritability & behaviour problems in people with autism. Quetiapine initially increased Chrissy's irritability & triggered a period of unmanageably violent & self-injurious behaviour, & I see no evidence of any benefit now. It is on the list of drugs to be reduced or withdrawn. Then Prozac was introduced, which seemed to take the edge off - Prozac had worked well for her in the past alongside Naltrexone, an opiate-blocker that had eliminated Chrissy's self-injurious behaviour. The two together had dramatically transformed Chrissy's life when she was 14. We had been able to take her out & about anywhere, even on holiday to Disneyland (Now I can't even take her to the village shop.) but, ultimately, after several years, this medication regime had led to a life-threatening plunge in platelet levels. Doctors had withdrawn both drugs & only Prozac has been re-introduced, albeit at a lower level than she had been on previously. A further complicating factor is that Epilim can reduce platelet count in susceptible people too. The platelet problem may have been caused by cumulative effects of these drugs over several years. Chrissy also takes Cerazette, the contraceptive pill, as she finds the mess of periods & PMT unbearable, & fish oils, a natural supplement for brain health.
I worry about interactions between medications, as well as their individual side-effects & the fact that Chrissy has a history of adverse drug reactions. Chrissy certainly needs medication - I doubt that 'in the raw' she would survive because her epilepsy naturally occurs in clusters with very little recovery between each seizure. I'm thankful that anti-epileptic drugs ease her epilepsy – they don't work for everyone. As a child, before mood stabilising medications were tried, Chrissy's outbursts also occurred in clusters & could continue for hours, & exhaust her. I am loathe for Chrissy to have medications that aren’t absolutely necessary, as any parent would be. Before I’d learned that Chrissy had a chromosome disorder, I’d hoped dietary interventions could offer an alternative, reducing or even obviating, the need for anything but anti-epileptic medication, but the two we've tried - the gluten-free/casein-free diet & the few foods diet (under Great Ormond Street Hospital's supervision when she was little) had had no effect on Chrissy's behaviour. It goes without saying that behavioural intervention plans were the first approach & have been used for years.
Will we ever manage to stabilise Chrissy's behaviour again without chemically coshing her, or causing life-threatening physical side-effects? Am I chasing rainbows……?
Chrissy is also on Epilim & Topiramate for epilepsy but Epilim has been increased for withdrawal of Topiramate; her psychiatrist & neurologist don't like giving Topiramate to people with learning disabilities as it can worsen behaviour problems & increase confusion. She is on Quetiapine (an antipsychotic) too. It was started after she had nasty side-effects from Risperidone, the first-line antipsychotic given to treat irritability & behaviour problems in people with autism. Quetiapine initially increased Chrissy's irritability & triggered a period of unmanageably violent & self-injurious behaviour, & I see no evidence of any benefit now. It is on the list of drugs to be reduced or withdrawn. Then Prozac was introduced, which seemed to take the edge off - Prozac had worked well for her in the past alongside Naltrexone, an opiate-blocker that had eliminated Chrissy's self-injurious behaviour. The two together had dramatically transformed Chrissy's life when she was 14. We had been able to take her out & about anywhere, even on holiday to Disneyland (Now I can't even take her to the village shop.) but, ultimately, after several years, this medication regime had led to a life-threatening plunge in platelet levels. Doctors had withdrawn both drugs & only Prozac has been re-introduced, albeit at a lower level than she had been on previously. A further complicating factor is that Epilim can reduce platelet count in susceptible people too. The platelet problem may have been caused by cumulative effects of these drugs over several years. Chrissy also takes Cerazette, the contraceptive pill, as she finds the mess of periods & PMT unbearable, & fish oils, a natural supplement for brain health.
I worry about interactions between medications, as well as their individual side-effects & the fact that Chrissy has a history of adverse drug reactions. Chrissy certainly needs medication - I doubt that 'in the raw' she would survive because her epilepsy naturally occurs in clusters with very little recovery between each seizure. I'm thankful that anti-epileptic drugs ease her epilepsy – they don't work for everyone. As a child, before mood stabilising medications were tried, Chrissy's outbursts also occurred in clusters & could continue for hours, & exhaust her. I am loathe for Chrissy to have medications that aren’t absolutely necessary, as any parent would be. Before I’d learned that Chrissy had a chromosome disorder, I’d hoped dietary interventions could offer an alternative, reducing or even obviating, the need for anything but anti-epileptic medication, but the two we've tried - the gluten-free/casein-free diet & the few foods diet (under Great Ormond Street Hospital's supervision when she was little) had had no effect on Chrissy's behaviour. It goes without saying that behavioural intervention plans were the first approach & have been used for years.
Will we ever manage to stabilise Chrissy's behaviour again without chemically coshing her, or causing life-threatening physical side-effects? Am I chasing rainbows……?
Monday, 30 May 2011
A Communication Breakthrough
People with autism rarely use communication to share experiences. Chrissy is no exception & bypassed the pointing-at-objects developmental stage. She has never drawn my attention to a new discovery she's made or engaged with me about something she's observed. Until yesterday.
On the drive home Chrissy spontaneously reached for her symbols book & began leafing through the pages. We use symbols alongside speech & basic signs to explain what's happening next but she has never used them to initiate any form of communication with us. Until now.
Chrissy smiled and made eye contact to get my attention then pointed to a symbol saying 'Chrissy is going home on Saturday.' (Every home-time day is 'Saturday' to Chrissy). She then, in turn, produced the symbol for car, another one with a stick figure labelled 'mummy,' &, finally, a symbol labelled 'football pitch.' The former made sense - she was going home in the car with mummy. The latter puzzled me. I didn't know why the symbol was in her book. It looked more like a TV set than a football pitch....Then I twigged. 'Is it computer?' I asked. 'Yes!' Chrissy beamed.
I was enchanted - by the gentle way that Chrissy had shared her thoughts about what we were doing, & by the way she'd expressed her wishes for what she wanted to do when we got home. Our interactions felt primevally human & bonding, & touched me as deeply as last week's plastic spoon incident, albeit in a different way. Both experiences have given me a rare insight into my daughter's true thoughts & feelings, & inspired me to work even harder to give her the best life possible.
The next day, seeing a new crop of bruises on Chrissy's naked body as I bathed her brought me back down to earth. Self-harm is still a big issue & she is as volatile as ever. She did, however, at one point, remove herself to her room for time out, then emerged declaring: 'I've finished crying mummy.'
Again, on the journey home, Chrissy showed me the car symbol with a smile.
Chrissy usually acts purely on impulse & she must have tried really hard to develop her reasoning & communication skills to this level. I hope it's something that her psychologist, speech therapist & I can continue to build on.
On the drive home Chrissy spontaneously reached for her symbols book & began leafing through the pages. We use symbols alongside speech & basic signs to explain what's happening next but she has never used them to initiate any form of communication with us. Until now.
Chrissy smiled and made eye contact to get my attention then pointed to a symbol saying 'Chrissy is going home on Saturday.' (Every home-time day is 'Saturday' to Chrissy). She then, in turn, produced the symbol for car, another one with a stick figure labelled 'mummy,' &, finally, a symbol labelled 'football pitch.' The former made sense - she was going home in the car with mummy. The latter puzzled me. I didn't know why the symbol was in her book. It looked more like a TV set than a football pitch....Then I twigged. 'Is it computer?' I asked. 'Yes!' Chrissy beamed.
I was enchanted - by the gentle way that Chrissy had shared her thoughts about what we were doing, & by the way she'd expressed her wishes for what she wanted to do when we got home. Our interactions felt primevally human & bonding, & touched me as deeply as last week's plastic spoon incident, albeit in a different way. Both experiences have given me a rare insight into my daughter's true thoughts & feelings, & inspired me to work even harder to give her the best life possible.
The next day, seeing a new crop of bruises on Chrissy's naked body as I bathed her brought me back down to earth. Self-harm is still a big issue & she is as volatile as ever. She did, however, at one point, remove herself to her room for time out, then emerged declaring: 'I've finished crying mummy.'
Again, on the journey home, Chrissy showed me the car symbol with a smile.
Chrissy usually acts purely on impulse & she must have tried really hard to develop her reasoning & communication skills to this level. I hope it's something that her psychologist, speech therapist & I can continue to build on.
Sunday, 22 May 2011
The Uniqueness of Each Person with Autism
I picked Chrissy up earlier than usual on Saturday & was told that she'd had an unsettled morning, kicking off about when I was coming to pick her up. She repeats 'is Mummy coming on Saturday?' whatever day it is, & whether I'm coming or not. Her demands get increasingly loud & shrill until she loses control, & throws herself on the floor in a full-blown outburst. She had fresh bruises on her arm & leg, & dried blood in one nostril from self-harming.
Chrissy enjoyed our drive home, listening to the radio & watching me with a quizzical smile on her face. She is as fascinated by neurotypical people as we are by her!
The weekend passed without event. Chrissy was her usual restless self, plying me with repetitive questions - 'What's for dinner? 'Where are we going later?' 'Can I have a banana?' 'Can I turn the light on?' 'What colour's that car?' (Chrissy is obsessed by colours) She fixates on one person & shadows their every step. We get stuck together in doorways, like the Laurel & Hardy revolving door sketch, & I often trip over her when I turn round suddenly.
There were a couple of outbursts but they didn't last long & there was no stripping or major self-harming episodes. The big one came when we tried to take her back to the hospital. As always, she wanted various things in her bag - a chocolate mousse, her plastic cup & a bottle of watered down diet coke, then we had to tie a bow in the bag. At the last minute she demanded a spoon (a metal one). Chrissy, like many people with autism, is extremely single-minded. Due to what happened last week over the blue plastic spoon, we refused very carefully, following behavioural management guildelines; we didn't say no, we said she could have a spoon next time she came home. We managed to get her into the car then all hell broke loose - Chrissy rubbed her nose until it bled, pulled her hair, bit her hands, all the time roaring 'Wanna spoon!' She then tried to undo her seat belt & climb in the back 'to sit with mummy.' I took her hand instead & the mayhem stopped just like that. I wish that simple technique worked every time...
I'm reading a fascinating book by Charlotte Moore, a mum of two autistic sons called George and Sam. Her boys couldn't be more different from each other, & Chrissy is completely different again. No wonder autism is so hard to diagnose!
Chrissy enjoyed our drive home, listening to the radio & watching me with a quizzical smile on her face. She is as fascinated by neurotypical people as we are by her!
The weekend passed without event. Chrissy was her usual restless self, plying me with repetitive questions - 'What's for dinner? 'Where are we going later?' 'Can I have a banana?' 'Can I turn the light on?' 'What colour's that car?' (Chrissy is obsessed by colours) She fixates on one person & shadows their every step. We get stuck together in doorways, like the Laurel & Hardy revolving door sketch, & I often trip over her when I turn round suddenly.
There were a couple of outbursts but they didn't last long & there was no stripping or major self-harming episodes. The big one came when we tried to take her back to the hospital. As always, she wanted various things in her bag - a chocolate mousse, her plastic cup & a bottle of watered down diet coke, then we had to tie a bow in the bag. At the last minute she demanded a spoon (a metal one). Chrissy, like many people with autism, is extremely single-minded. Due to what happened last week over the blue plastic spoon, we refused very carefully, following behavioural management guildelines; we didn't say no, we said she could have a spoon next time she came home. We managed to get her into the car then all hell broke loose - Chrissy rubbed her nose until it bled, pulled her hair, bit her hands, all the time roaring 'Wanna spoon!' She then tried to undo her seat belt & climb in the back 'to sit with mummy.' I took her hand instead & the mayhem stopped just like that. I wish that simple technique worked every time...
I'm reading a fascinating book by Charlotte Moore, a mum of two autistic sons called George and Sam. Her boys couldn't be more different from each other, & Chrissy is completely different again. No wonder autism is so hard to diagnose!
Sunday, 15 May 2011
Blue Plastic Spoons
My guilt at leaving Chrissy in a 'place like that' gnaws away at me. It started when we first received respite care. It's about institutions & what they represent - the one-size-fits-all approach, strangers paid to look after my child. 'I should be doing it!' my heart cries out. I have frequent dreams about caring for Chrissy as a tiny child again. She is Peter Pan-like, never an adult.
When medical professionals first said that Chrissy would be better off in a residential environment I doggedly refused. When she was 10 they said that we had done 'remarkably well' to cope so far but such extreme challenging behaviour needed a level of structure & consistency that a home environment could never provide. At 10! I sat & wept through so many meetings, knowing that we couldn't go on like we were but desperate not to send my child away.
Time passed & we stumbled on. Chrissy's increasing size was the deciding factor. Descriptions of our struggles to manage extreme, violent prolonged outbursts in an adult-sized person are in my book 'Bringing Up a Challenging Child at Home.'
We were very lucky to find a fantastic termly boarding school about 45 mins drive from our home. Chrissy went there from age 14-19, & loved it. I missed her terribly but never saw the school as institution-like, & she was home during weekends & school holidays. When Chrissy left school, I picked residential places that looked homely, as the hospital wards do where she is now.
But the blue plastic spoon incident was a stark reminder. Chrissy is in an institution.
She developed an obsession for taking metal teaspoons from home back to hospital. I always had to sneak them back with me as, for health & safety reasons, the hospital does not allow metal spoons on wards. I fully understand why but it was hard the first time I saw Chrissy being given a blue plastic spoon when she asked for a spoon for her dessert. She became distressed & rejected it. She has never used metal cutlery to harm herself or anyone else but, like all the other patients, she was being denied it, & her autism made it tougher for her to deal with.
That small blue plastic spoon symbolised how little control Chrissy has in her life, & the numerous small but bruising injustices & inequalities she faces due to her disability. It also highlights how actively Chrissy tries to communicate her needs. If she asks for something unusual, or develops a new obsession or ritual, we should explore what she could be trying to tell us. Although we can't always promise her the outcome she desires!
When medical professionals first said that Chrissy would be better off in a residential environment I doggedly refused. When she was 10 they said that we had done 'remarkably well' to cope so far but such extreme challenging behaviour needed a level of structure & consistency that a home environment could never provide. At 10! I sat & wept through so many meetings, knowing that we couldn't go on like we were but desperate not to send my child away.
Time passed & we stumbled on. Chrissy's increasing size was the deciding factor. Descriptions of our struggles to manage extreme, violent prolonged outbursts in an adult-sized person are in my book 'Bringing Up a Challenging Child at Home.'
We were very lucky to find a fantastic termly boarding school about 45 mins drive from our home. Chrissy went there from age 14-19, & loved it. I missed her terribly but never saw the school as institution-like, & she was home during weekends & school holidays. When Chrissy left school, I picked residential places that looked homely, as the hospital wards do where she is now.
But the blue plastic spoon incident was a stark reminder. Chrissy is in an institution.
She developed an obsession for taking metal teaspoons from home back to hospital. I always had to sneak them back with me as, for health & safety reasons, the hospital does not allow metal spoons on wards. I fully understand why but it was hard the first time I saw Chrissy being given a blue plastic spoon when she asked for a spoon for her dessert. She became distressed & rejected it. She has never used metal cutlery to harm herself or anyone else but, like all the other patients, she was being denied it, & her autism made it tougher for her to deal with.
That small blue plastic spoon symbolised how little control Chrissy has in her life, & the numerous small but bruising injustices & inequalities she faces due to her disability. It also highlights how actively Chrissy tries to communicate her needs. If she asks for something unusual, or develops a new obsession or ritual, we should explore what she could be trying to tell us. Although we can't always promise her the outcome she desires!
Friday, 13 May 2011
Perfect Days
What a fantastic mood Chrissy was in tonight. No outbursts, not even a hint of one. I heard her clapping & cheering when I arrived to pick her up. I was told it was because she'd heard I was coming. When we got home she was chatty & playful, laughing at & interested in the antics of our two cats. Anxiety-related autistic traits were subdued - there were no bedtime rituals & minimal obsessive/compulsive repetitive questioning.....No, not a wonderful dream or wishful thinking. That's the enigma of Chrissy. It's a privilege to share these inexplicably 'perfect' times & they light up our lives.
Chrissy's Epilim has been increased as part of a programme to withdraw another anti-epileptic, with the ultimate aim of reducing the number of different drugs she is on. Could that be why she seems so joyful & relaxed? Experience tells me not....
Chrissy's Epilim has been increased as part of a programme to withdraw another anti-epileptic, with the ultimate aim of reducing the number of different drugs she is on. Could that be why she seems so joyful & relaxed? Experience tells me not....
Sunday, 8 May 2011
Severe autism & social inclusion
Increasingly, we are finding that outbursts occur when Chrissy can't make us understand what she wants. If she sets her mind on something she NEVER gives up!
Problems at mealtimes are a recurring theme. Last night she couldn't wait for her dinner & kicked off for half an hour, screaming & self-harming on the kitchen floor. I wonder if we should change the time we pick her up so that she has dinner almost immediately after we arrive home. I could plan pre-prepared meals.
Bedtime issues have been resolved by us adhering to Chrissy's rituals - these include sleeves, no matter how short, rolled over, 2 pillows with top one being turned over twice, & blanket pulled up so Chrissy can feel it over the top of the duvet....It just took us a while to understand exactly what Chrissy wanted.
This morning Chrissy kicked off because she wanted a 'remote control' for her laptop. In the past, we worked out that 'remote control' meant mouse. This time, we finally figured out that she wanted the remote control for her portable DVD although she soon realised it didn't work with her laptop.
Chrissy has periods of repeatedly asking for something & we struggle to work out what it is, then there are periods of relative calm alongside magical moments - this morning when Chrissy got up she spontaneously asked me for a cuddle & last night she made funny noises that made me laugh, & kept repeating them to amuse me again - a charming, playful side we love.
I felt sad to see how many injuries she had from self-harming. A toe is so black & blue I cringe to look at it yet it doesn't seem to bother her at all, ditto a raw looking scuff mark on her shoulder. Her nurse told me that her behaviour has worsened since the arrival of a new patient on the ward - another severely autistic lady who is also very challenging. I was reassured that Chrissy isn't afraid of the other patient; adapting to another change in her environment could be a trigger but it could be coincidence - Chrissy has also emerged from a cluster of epileptic seizures. Sometimes she is calmer during periods of increased seizures - a pressure cooker effect recognised by epilepsy specialists.
Chrissy's mercurial moods are an integral part of her & massively inhibit social inclusion now she's an adult. Her environment is probably as good as it will ever be & obviously that plays a key role. What's so heart-breaking is that we have seen her much more stable than this for long periods with the addition of an effective drug regime. The question is can this ideal ever be achieved again & how much longer do we have to wait to find out?
Problems at mealtimes are a recurring theme. Last night she couldn't wait for her dinner & kicked off for half an hour, screaming & self-harming on the kitchen floor. I wonder if we should change the time we pick her up so that she has dinner almost immediately after we arrive home. I could plan pre-prepared meals.
Bedtime issues have been resolved by us adhering to Chrissy's rituals - these include sleeves, no matter how short, rolled over, 2 pillows with top one being turned over twice, & blanket pulled up so Chrissy can feel it over the top of the duvet....It just took us a while to understand exactly what Chrissy wanted.
This morning Chrissy kicked off because she wanted a 'remote control' for her laptop. In the past, we worked out that 'remote control' meant mouse. This time, we finally figured out that she wanted the remote control for her portable DVD although she soon realised it didn't work with her laptop.
Chrissy has periods of repeatedly asking for something & we struggle to work out what it is, then there are periods of relative calm alongside magical moments - this morning when Chrissy got up she spontaneously asked me for a cuddle & last night she made funny noises that made me laugh, & kept repeating them to amuse me again - a charming, playful side we love.
I felt sad to see how many injuries she had from self-harming. A toe is so black & blue I cringe to look at it yet it doesn't seem to bother her at all, ditto a raw looking scuff mark on her shoulder. Her nurse told me that her behaviour has worsened since the arrival of a new patient on the ward - another severely autistic lady who is also very challenging. I was reassured that Chrissy isn't afraid of the other patient; adapting to another change in her environment could be a trigger but it could be coincidence - Chrissy has also emerged from a cluster of epileptic seizures. Sometimes she is calmer during periods of increased seizures - a pressure cooker effect recognised by epilepsy specialists.
Chrissy's mercurial moods are an integral part of her & massively inhibit social inclusion now she's an adult. Her environment is probably as good as it will ever be & obviously that plays a key role. What's so heart-breaking is that we have seen her much more stable than this for long periods with the addition of an effective drug regime. The question is can this ideal ever be achieved again & how much longer do we have to wait to find out?
Saturday, 30 April 2011
The Royal Wedding through the eyes of someone with autism
"Is she going to bed?" Chrissy said when I asked what she thought of Kate Middleton's wedding dress! Chrissy watched the royal wedding highlights with me in the evening & stayed reasonably engaged, cuddling up to me on the settee, throughout. She seems drawn to churches & thinks all priests & religious men in robes are called 'John' because Father John was one of her favourite people at St Elizabeth's, Much Hadham, Herts., a fantastic termly boarding school run by nuns that she attended from age 14-19. She enjoyed going to church at St Elizabeth's when she was calm enough to attend.
I found myself in floods of tears watching Kate Middleton's proud dad walk her up the aisle - it hit me anew that Chrissy would never get the opportunity to marry or fall in love. I have another daughter who has those choices in life but my grief wasn't about me, it was about Chrissy & the opportunities denied to her.
At home here yesterday, Chrissy kept remarking on the sound of bells that rang out from our local church. It was hard to tell whether she enjoyed the sound or found them irritating. Chrissy can't express how she feels. She has a wide vocabulary but much of it is learnt, although she can appear to use relevant phrases, such as 'it's sunny outside.' Trouble is, she sometimes says that when it's raining & overcast. If you check her & ask: 'Is it sunny or raining,' she usually gives the right answer - she just trots out repetitive words & phrases without thinking.
We have solved the bedtime problem touch wood :~) The hospital told me that Chrissy has two pillows there. I tried two at home & she was fine. It's interesting that she didn't realise she needed two pillows to feel comfortable, as she will often ask for two of everything else. Such a simple & easily avoidable misunderstanding that had been causing so much aggro! It is very easy to over-estimate Chrissy's abilities to express her needs because she appears to have better communication skills than she actually has. If we had given Chrissy the choice of one or two pillows, she would have chosen two. We just need to become better detectives I guess.
I found myself in floods of tears watching Kate Middleton's proud dad walk her up the aisle - it hit me anew that Chrissy would never get the opportunity to marry or fall in love. I have another daughter who has those choices in life but my grief wasn't about me, it was about Chrissy & the opportunities denied to her.
At home here yesterday, Chrissy kept remarking on the sound of bells that rang out from our local church. It was hard to tell whether she enjoyed the sound or found them irritating. Chrissy can't express how she feels. She has a wide vocabulary but much of it is learnt, although she can appear to use relevant phrases, such as 'it's sunny outside.' Trouble is, she sometimes says that when it's raining & overcast. If you check her & ask: 'Is it sunny or raining,' she usually gives the right answer - she just trots out repetitive words & phrases without thinking.
We have solved the bedtime problem touch wood :~) The hospital told me that Chrissy has two pillows there. I tried two at home & she was fine. It's interesting that she didn't realise she needed two pillows to feel comfortable, as she will often ask for two of everything else. Such a simple & easily avoidable misunderstanding that had been causing so much aggro! It is very easy to over-estimate Chrissy's abilities to express her needs because she appears to have better communication skills than she actually has. If we had given Chrissy the choice of one or two pillows, she would have chosen two. We just need to become better detectives I guess.
Saturday, 15 January 2011
Autism, communication - and a breakthrough
Using effective behavioural strategies are all very well but it's demanding & exhausting caring one:one for an adult with autism. Then sometimes, you get a small breakthrough that lights up your whole day.
This weekend, still treading cautiously after our difficult Xmas, I painstakingly used symbols & planned every word I said. It worked reasonably well until today over breakfast when Chrissy demanded her favourite dessert. I told her that we have 'puddings' at dinner time, not breakfast time but she grew increasingly insistent & agitated. I ran out of diversions & strategies, but didn't believe that giving in was the answer in this situation. As I prepared myself for the inevitable outburst, to my amazement, Chrissy paused for thought & came up with her own ingenious solution - a massive step forward. "Can I take my pudding to Linton?" (the ward she lives on) "Yes," I replied, removing it from the fridge. "Can I have a bag?" she asked, then asked for a spoon, which she insisted on selecting. "Make a bow" she ordered. I tied the bag up, gave it to her & the immediate storm passed....
This weekend, still treading cautiously after our difficult Xmas, I painstakingly used symbols & planned every word I said. It worked reasonably well until today over breakfast when Chrissy demanded her favourite dessert. I told her that we have 'puddings' at dinner time, not breakfast time but she grew increasingly insistent & agitated. I ran out of diversions & strategies, but didn't believe that giving in was the answer in this situation. As I prepared myself for the inevitable outburst, to my amazement, Chrissy paused for thought & came up with her own ingenious solution - a massive step forward. "Can I take my pudding to Linton?" (the ward she lives on) "Yes," I replied, removing it from the fridge. "Can I have a bag?" she asked, then asked for a spoon, which she insisted on selecting. "Make a bow" she ordered. I tied the bag up, gave it to her & the immediate storm passed....
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