So... I was having a chat in the staffroom with the only other person present a couple of days ago, and I was talking about my two kids, their autism and the challenges that's causing towards the end of term, with excessive tiredness, and pressure around school plays/carol concerts as well as general Christmas anxiety (am I going to get the present I really really want?). In my defence, the day before had been very tough, and had resulted in a big row between myself and dh, and I was feeling quite vulnerable.
But at some point in the conversation I realised that I was getting carried away and was about to start talking about my own autistic traits. I did mention one before I caught myself and got up and made myself a cup of tea, and changed the subject.
I'm going to blame a cup of caffeinated coffee I'd had in a meeting that morning, caffeine has a very powerful effect on me, making me hyper, sociable and very chatty. This is not a natural state for me, and I find it difficult to control once I get started. I know that when you stop taking any kind of drug and then have a little, it has a disproportionately strong effect, same with alcohol and cigarettes. I've been off the caffeine for a few years now, and generally feel better for it, but visiting people can be difficult. It's hard to bring your own decaf teabags out without looking rude!
For quite long periods of my life now, I forget about my aspie status, and start to believe I'm quite normal, then something suddenly reminds me. My big struggle at the moment is with my self-limiting preference to spend time alone, at the expense of my family, and especially my kids. I feel so guilty when I come home totally peopled out and just want to sink onto the sofa and watch TV without talking to anybody. I am trying harder than ever to do better at being a parent even when I'm shattered.
This is the stuff that's floating around my head when I'm talking about my family, and if somebody asks questions and shows an interest in the autistic side of things, I'm so grateful for the opportunity to actually talk about it in real life, and not on Twitter (lol) that I get carried away. Especially because it's a huge special interest as well!
In the end, I have to remember that not everybody has my best interests at heart. I need to protect myself, because once I get out of that closet, there's no getting back in, and the consequences are unknowable.
Wednesday, 14 December 2011
Tuesday, 13 December 2011
Long may it last...
So...bit of a sad day today at work, a lovely lady that I've been looking after for 5 weeks on and off, had a scan yesterday for possible recurrence of pneumonia, and they found cancer just about everywhere.
She doesn't even know yet, her family is coming in tomorrow once the specialist has had time to review her scan, and they will be all told together. She has absolutely no idea, we just did her home visit recently, with a plan to discharge her soon.
I also heard a really upsetting story today at the team meeting about one of our patients and how they came to be in hospital after an overdose.
I came out of work today in overload with too much running round in my head. I was lucky that I was leaving at the same time as one of my fellow students, and was able to offload slightly with her, it always helps to debrief slightly. I've no idea how the nurses cope with this kind of upsetting news, I had to go in the toilet to cry, and was nearly in tears all afternoon. I know I won't be telling dh about any of this, it doesn't feel right to add to his load of stuff he's carrying around at the moment.
So I'm sharing on here, where I can moan and nobody is going to tell me to shut up (I hope).
When I look at the elderly people on the ward, I think about my parents, and hope that they never end up in hospital. Not that the staff on the ward are bad, in fact I've been impressed by their professionalism and efficiency. But it's so awful to be living long-term in such an impersonal place where you have to adhere to somebody else's routine and live in a clinical setting, with blue paper curtains, and people with dementia in the same bay as you, getting upset and shouting. And while the staff are efficient, they are always thinking about the next job, as they put you on a bedpan or change your sheets. They're always in a hurry, and don't have the time to spend chatting to make people feel more at home.
These may sound like small things, but the great thing about being a student is that I don't have a 'to do' list in my head, and I can find time to chat to people and get to know them, so I can treat them as individuals. The ladies I've been looking after said today that they were sorry I would be finishing on Thursday, because "You're the only one with any patience".
My Mum is 76 and my Dad is going to be 78 in January. They're both currently in pretty good health. Long may it last.
She doesn't even know yet, her family is coming in tomorrow once the specialist has had time to review her scan, and they will be all told together. She has absolutely no idea, we just did her home visit recently, with a plan to discharge her soon.
I also heard a really upsetting story today at the team meeting about one of our patients and how they came to be in hospital after an overdose.
I came out of work today in overload with too much running round in my head. I was lucky that I was leaving at the same time as one of my fellow students, and was able to offload slightly with her, it always helps to debrief slightly. I've no idea how the nurses cope with this kind of upsetting news, I had to go in the toilet to cry, and was nearly in tears all afternoon. I know I won't be telling dh about any of this, it doesn't feel right to add to his load of stuff he's carrying around at the moment.
So I'm sharing on here, where I can moan and nobody is going to tell me to shut up (I hope).
When I look at the elderly people on the ward, I think about my parents, and hope that they never end up in hospital. Not that the staff on the ward are bad, in fact I've been impressed by their professionalism and efficiency. But it's so awful to be living long-term in such an impersonal place where you have to adhere to somebody else's routine and live in a clinical setting, with blue paper curtains, and people with dementia in the same bay as you, getting upset and shouting. And while the staff are efficient, they are always thinking about the next job, as they put you on a bedpan or change your sheets. They're always in a hurry, and don't have the time to spend chatting to make people feel more at home.
These may sound like small things, but the great thing about being a student is that I don't have a 'to do' list in my head, and I can find time to chat to people and get to know them, so I can treat them as individuals. The ladies I've been looking after said today that they were sorry I would be finishing on Thursday, because "You're the only one with any patience".
My Mum is 76 and my Dad is going to be 78 in January. They're both currently in pretty good health. Long may it last.
Wednesday, 23 November 2011
Sorry, bit of a rant tonight! OT has upset me...
So... spent considerable time yesterday with a close friend, whose child has been diagnosed with dyspraxia nearly a year ago. Since then they have moved house, and 'all of a sudden', there are all these social deficits becoming apparent.
She had a Parent's meeting at the new school, he started about 6 weeks ago, and found out he has begun to ask to stay in the classroom during playtime and lunchtime, so that he doesn't have to mix with the other kids. He is having great difficulty making friends, or playing with other children, and she is now looking back with different eyes on earlier experiences that she had considered normal, like the fact he always played with reception age children at school, rather than the kids his age. He's starting having extreme tantrums all evening after school days, over nothing at all. As for obsessive interests, I just had to ask "did he ever line up his toys" to be treated to a rant about how the lines of trains/cars used to go all over the house, and God forbid anybody ever moved one.
Obviously, there was lots of other stuff we talked about, and I gave her the Tony Attwood complete guide to Asperger's, cos it's a good starting point for a parent. But I'm slightly annoyed with her Occupational Therapist, who is telling her that there is no need for her to seek assessment for autism for her son, because his dyspraxia diagnosis already covers all his behavioural problems.
I've heard this song before, and came to the conclusion that there are some issues here about what is best for the child. If he has autistic tendencies, or even may be diagnosed as autistic, will it not help this child to get the best out of his school, if his teachers have a better understanding of the difficulties he is facing? Will it not make it easier for his parents to help him out if they understand why he is having meltdowns left right and centre, and why he has such an idiosyncratic approach to, erm, everything...
Why would anybody advise against assessment for a child who is struggling to such a noticeable extent in areas of functioning which are only touched on in a dyspraxia diagnosis?
I am now wondering if there is a professional issue here, because OTs cannot diagnose autism, and they are seeing lots of kids with coordination problems AND autistic traits, has the diagnosis of dyspraxia/DCD been expanded to include these children? and is this in the best interests of these children? Is it the best way to recognise the complexity of the problems they face?
And with all due deference to OTs, who do amazing work, and have helped my son enormously, they are not doctors, and do not have the understanding of autism that a qualified and specialised doctor can have. They cannot offer therapies which tackle all the aspects of autism, only those which are related to the coordination aspects of it.
OK, I know I'm getting a bit ranty here, but I do feel that we need to be in touch with the right professionals, who understand all the facets of the issues that our children face, whether psychological, social, emotional, physical or otherwise. Obviously OT support is a cheaper alternative than assessment by a paediatrician or other suitably qualified doctor, that doesn't make it a replacement for such an assessment.
She had a Parent's meeting at the new school, he started about 6 weeks ago, and found out he has begun to ask to stay in the classroom during playtime and lunchtime, so that he doesn't have to mix with the other kids. He is having great difficulty making friends, or playing with other children, and she is now looking back with different eyes on earlier experiences that she had considered normal, like the fact he always played with reception age children at school, rather than the kids his age. He's starting having extreme tantrums all evening after school days, over nothing at all. As for obsessive interests, I just had to ask "did he ever line up his toys" to be treated to a rant about how the lines of trains/cars used to go all over the house, and God forbid anybody ever moved one.
Obviously, there was lots of other stuff we talked about, and I gave her the Tony Attwood complete guide to Asperger's, cos it's a good starting point for a parent. But I'm slightly annoyed with her Occupational Therapist, who is telling her that there is no need for her to seek assessment for autism for her son, because his dyspraxia diagnosis already covers all his behavioural problems.
I've heard this song before, and came to the conclusion that there are some issues here about what is best for the child. If he has autistic tendencies, or even may be diagnosed as autistic, will it not help this child to get the best out of his school, if his teachers have a better understanding of the difficulties he is facing? Will it not make it easier for his parents to help him out if they understand why he is having meltdowns left right and centre, and why he has such an idiosyncratic approach to, erm, everything...
Why would anybody advise against assessment for a child who is struggling to such a noticeable extent in areas of functioning which are only touched on in a dyspraxia diagnosis?
I am now wondering if there is a professional issue here, because OTs cannot diagnose autism, and they are seeing lots of kids with coordination problems AND autistic traits, has the diagnosis of dyspraxia/DCD been expanded to include these children? and is this in the best interests of these children? Is it the best way to recognise the complexity of the problems they face?
And with all due deference to OTs, who do amazing work, and have helped my son enormously, they are not doctors, and do not have the understanding of autism that a qualified and specialised doctor can have. They cannot offer therapies which tackle all the aspects of autism, only those which are related to the coordination aspects of it.
OK, I know I'm getting a bit ranty here, but I do feel that we need to be in touch with the right professionals, who understand all the facets of the issues that our children face, whether psychological, social, emotional, physical or otherwise. Obviously OT support is a cheaper alternative than assessment by a paediatrician or other suitably qualified doctor, that doesn't make it a replacement for such an assessment.
Tuesday, 22 November 2011
Worrying about my parents for a change!
So... I remarked to my best friend the other day, we are in a kind of honeymoon state, kids are neither toddlers nor teenagers, and parents are not that elderly (yet).
I didn't mention, although it's in the back of my mind, that my mum has had a spate of forgetting things lately, and my Dad got angry with her the other day for messing up his plans by telling somebody the opposite of what was supposed to be happening. He told her he was getting worried about her and if she didn't improve he was sending her to the Dr!
Today, I saw her briefly, and she was really anxious because she had lost her reading glasses. Not as in simply misplaced, she remembers wearing them, and has no memory of taking them off, and they appear to be nowhere in the house.
I should perhaps explain the background to this, which is that my parents don't do emotion. I haven't seen my Dad angry for 25 years (coincidentally since I was a teenager!) and I rarely see my mother express any emotion other than mild irritation, even though she has her 17-year old granddaughter living in the house, and my sister (with the major mental health problems) is there more often than not. Seeing them both upset to that degree is very unusual.
My mum is usually sharp as a tack, she obtained a first class honours Maths degree through OU while she had 3 kids under 5, and has always retained that analytical ability. I know that they are both aware of the implications, they have lots of friends, who have suffered the usual round of age-related illness, including dementia. I'm sure they don't want to actually acknowledge it and are busy pretending my Dad's outburst last week never happened. I'm also sure my mum just needs me to tell her that this is just a normal part of aging.
I did some reading about dementia last week, because I am now officially the Family Healthcare Professional. Forgetting stuff like glasses is a normal part of aging, frustrating as it may be for my totally and utterly organised and together mother. But if they turn up in the fridge, and she starts mixing her words up, and struggling to do her Sudoku 3 x faster than Dad, then we need to worry.
However, on the NHS site, they say that being anxious about memory loss is an indicator for a visit to the GP. So that means I need to have a chat with them both, probably soon, to see if they think that that's where we're at. Probably separate chats. I did start to have a heart to heart with Mum yesterday, but my sister turned up uninvited and joined in. That's what family's for!
This isn't a conversation I want to have, the implications are huge, Mum holds everything together, like all Mums, but more so, as she's primary carer for my sister and her daughter. Having said that, my sister is finally medicated and acting totally normal, and her daughter is 17 and thinking about applying to University. I don't call on my Mum for support, except the usual chit-chat, which goes both ways. But the idea of needing to be on hand to help her out is kind of nice. I owe her loads, her calmness in a crisis has always been an inspiration! Having spent some time now nursing elderly folk in my general placement, that doesn't freak me out any more.
No idea where any of this is going, as always, no crystal ball on hand. This is part of the journey I suppose, just need to keep on keeping on.
I didn't mention, although it's in the back of my mind, that my mum has had a spate of forgetting things lately, and my Dad got angry with her the other day for messing up his plans by telling somebody the opposite of what was supposed to be happening. He told her he was getting worried about her and if she didn't improve he was sending her to the Dr!
Today, I saw her briefly, and she was really anxious because she had lost her reading glasses. Not as in simply misplaced, she remembers wearing them, and has no memory of taking them off, and they appear to be nowhere in the house.
I should perhaps explain the background to this, which is that my parents don't do emotion. I haven't seen my Dad angry for 25 years (coincidentally since I was a teenager!) and I rarely see my mother express any emotion other than mild irritation, even though she has her 17-year old granddaughter living in the house, and my sister (with the major mental health problems) is there more often than not. Seeing them both upset to that degree is very unusual.
My mum is usually sharp as a tack, she obtained a first class honours Maths degree through OU while she had 3 kids under 5, and has always retained that analytical ability. I know that they are both aware of the implications, they have lots of friends, who have suffered the usual round of age-related illness, including dementia. I'm sure they don't want to actually acknowledge it and are busy pretending my Dad's outburst last week never happened. I'm also sure my mum just needs me to tell her that this is just a normal part of aging.
I did some reading about dementia last week, because I am now officially the Family Healthcare Professional. Forgetting stuff like glasses is a normal part of aging, frustrating as it may be for my totally and utterly organised and together mother. But if they turn up in the fridge, and she starts mixing her words up, and struggling to do her Sudoku 3 x faster than Dad, then we need to worry.
However, on the NHS site, they say that being anxious about memory loss is an indicator for a visit to the GP. So that means I need to have a chat with them both, probably soon, to see if they think that that's where we're at. Probably separate chats. I did start to have a heart to heart with Mum yesterday, but my sister turned up uninvited and joined in. That's what family's for!
This isn't a conversation I want to have, the implications are huge, Mum holds everything together, like all Mums, but more so, as she's primary carer for my sister and her daughter. Having said that, my sister is finally medicated and acting totally normal, and her daughter is 17 and thinking about applying to University. I don't call on my Mum for support, except the usual chit-chat, which goes both ways. But the idea of needing to be on hand to help her out is kind of nice. I owe her loads, her calmness in a crisis has always been an inspiration! Having spent some time now nursing elderly folk in my general placement, that doesn't freak me out any more.
No idea where any of this is going, as always, no crystal ball on hand. This is part of the journey I suppose, just need to keep on keeping on.
Sunday, 30 October 2011
Am I there yet?.... Acceptance
So...the kids were diagnosed 2 weeks apart, 15 months ago, am I starting to come to terms with it yet?
Looking back over the last year or so, I can see a clear pattern of coping behaviour, starting with obsessive research into all aspects of autism, turning into depression and denial, and followed by frustration and anger. I just realised that I'm describing the stages of grief! I keep forgetting that I'm going through a grieving process. Hang on, just going to google to see what I'm in for next.
OK, good news, I still have bargaining and acceptance to come. To be honest, I think acceptance may still be some way off, and I fully expect to be meeting some of the other stages again before long. I certainly got frustrated with my husband again this week, as he continues to completely deny that there's anything different between our kids and the kids they go to school with. I think he believes they've both been falsely diagnosed. But they don't talk to him about their feelings of being left out at school, and of having nobody to play with.
Loneliness is another feeling I have to cope with, but fortunately I have some lovely friends, and lovely tweeple who understand, because they are in the same or similar situation.
That's as far as the kids go, as for my own autistic nature, have I come to an acceptance of who I am? I hope that I am well on my way, I love being who I am, and while I have challenges every day to overcome, I am helped by my special abilities, and my humanity.
I have found a new vocation in midwifery, and it suits me down to the ground, which makes me very lucky!
Looking back over the last year or so, I can see a clear pattern of coping behaviour, starting with obsessive research into all aspects of autism, turning into depression and denial, and followed by frustration and anger. I just realised that I'm describing the stages of grief! I keep forgetting that I'm going through a grieving process. Hang on, just going to google to see what I'm in for next.
OK, good news, I still have bargaining and acceptance to come. To be honest, I think acceptance may still be some way off, and I fully expect to be meeting some of the other stages again before long. I certainly got frustrated with my husband again this week, as he continues to completely deny that there's anything different between our kids and the kids they go to school with. I think he believes they've both been falsely diagnosed. But they don't talk to him about their feelings of being left out at school, and of having nobody to play with.
Loneliness is another feeling I have to cope with, but fortunately I have some lovely friends, and lovely tweeple who understand, because they are in the same or similar situation.
That's as far as the kids go, as for my own autistic nature, have I come to an acceptance of who I am? I hope that I am well on my way, I love being who I am, and while I have challenges every day to overcome, I am helped by my special abilities, and my humanity.
I have found a new vocation in midwifery, and it suits me down to the ground, which makes me very lucky!
Wednesday, 26 October 2011
Undercover Aspergian
So... I've been getting some unwanted attention from the other students on my course. It's meant to be nice attention, but it feels like too much.
I do on occasion try to be funny, and if I do it in small doses, I can be funny. I have a very dry, ironic sense of humour, kind of black, which works well in a healthcare student setting. I have some days where I feel like being funny, but if it then attracts lots of attention, I withdraw a bit into the background, and stay serious for a few days. I know that if I overdo it, I start crossing lines, and stepping over people's personal boundaries. (I know this from personal experience...)
I know somebody I've seen posting on Wrong Planet has a tagline which says something like: "If I have offended you, you can be sure it was an attempt at humour." I can really relate to this, and that's why I tone it down.
But, now I'm finding people inviting me to be funny, expecting me to be funny and encouraging me to be funny, and that's awkward, because I need to be on top form to go there at all, and be sure that I'm not going to hurt anybody's feelings. Some days I just want to coast, stay in the background, and have quiet chats with people next to me, I'm not there to entertain.
Then I get this slightly confused reaction, like I'm not being consistent, and other people can't work me out. I kind of feel like an Undercover Aspergian. They start looking at me kind of hard like they're trying to see through me. These midwives are all working on their communication skills 100% of the time, and they are pretty fly now. I've had a few anxious moments.
But then I remind myself that they aren't psychic either, I just have to raise an eyebrow and they'll leave me alone. I end up coming across as super-confident and extremely knowledgeable. Neither of which is what I'm aiming for, I'm aiming to just pass for normal, and instead, they think I have some kind of a super-brain, but they don't see the disability side of things (cos I haven't told them!) I do have a brilliant memory for anatomy and physiology which is a massive advantage, but I have high anxiety levels every day, not about looking after the pregnant women, that's the best bit, but about mixing with qualified midwives and other health professionals, and getting that interaction right. It requires a huge mental discipline to stay 'in character', and not to be inappropriate.
Just realised that I used an acting term about my approach to work. I suppose there is an element of 'acting professional' for all of us, I think it's a bigger challenge for me, but at the same time, I've been practicing roles my whole life.
I do on occasion try to be funny, and if I do it in small doses, I can be funny. I have a very dry, ironic sense of humour, kind of black, which works well in a healthcare student setting. I have some days where I feel like being funny, but if it then attracts lots of attention, I withdraw a bit into the background, and stay serious for a few days. I know that if I overdo it, I start crossing lines, and stepping over people's personal boundaries. (I know this from personal experience...)
I know somebody I've seen posting on Wrong Planet has a tagline which says something like: "If I have offended you, you can be sure it was an attempt at humour." I can really relate to this, and that's why I tone it down.
But, now I'm finding people inviting me to be funny, expecting me to be funny and encouraging me to be funny, and that's awkward, because I need to be on top form to go there at all, and be sure that I'm not going to hurt anybody's feelings. Some days I just want to coast, stay in the background, and have quiet chats with people next to me, I'm not there to entertain.
Then I get this slightly confused reaction, like I'm not being consistent, and other people can't work me out. I kind of feel like an Undercover Aspergian. They start looking at me kind of hard like they're trying to see through me. These midwives are all working on their communication skills 100% of the time, and they are pretty fly now. I've had a few anxious moments.
But then I remind myself that they aren't psychic either, I just have to raise an eyebrow and they'll leave me alone. I end up coming across as super-confident and extremely knowledgeable. Neither of which is what I'm aiming for, I'm aiming to just pass for normal, and instead, they think I have some kind of a super-brain, but they don't see the disability side of things (cos I haven't told them!) I do have a brilliant memory for anatomy and physiology which is a massive advantage, but I have high anxiety levels every day, not about looking after the pregnant women, that's the best bit, but about mixing with qualified midwives and other health professionals, and getting that interaction right. It requires a huge mental discipline to stay 'in character', and not to be inappropriate.
Just realised that I used an acting term about my approach to work. I suppose there is an element of 'acting professional' for all of us, I think it's a bigger challenge for me, but at the same time, I've been practicing roles my whole life.
Thursday, 13 October 2011
Quality? of care in our hospitals
So... thought I would get down some nursing-related thoughts, as they have been occurring to me lately.
One of the other girls (women) in my class asked me this the other day:
"Should we bring up the poor standard of care we are seeing on the general wards with our tutor?"
It was kind of an aside, not really a question for me, but a question she was asking herself. We've all just started our general nursing placements, and we've all seen things that have made us uncomfortable, here is a partial list:
One of the other girls (women) in my class asked me this the other day:
"Should we bring up the poor standard of care we are seeing on the general wards with our tutor?"
It was kind of an aside, not really a question for me, but a question she was asking herself. We've all just started our general nursing placements, and we've all seen things that have made us uncomfortable, here is a partial list:
- nurses ignoring the call bells
- incontinent patients left without being changed for hours and hours
- cursory bedbaths
- patients' mobility not being a priority - eg use of commodes by bedside instead of helping patients walk to toilets.
- no help with feeding, or drinking for quieter patients.
There's more, but I don't want to depress you. Then yesterday the Care Quality Commission report came out, revealing that this low quality of care is totally par for the course in the NHS at the moment.
The nurses are constantly complaining, not only about lack of resources and the impact of cuts (large numbers of imminent bed closures for example) but also about the bizarre priorities of hospital management, who are busy organising expensive and pointless internal ward moves, and obsessing about foundation trust status. (Honestly, at times it's just like Holby City, (with all of thecynicism and backbiting but none of the hot doctors).
Nurses seem to spend 80%+ of their time filling in documentation, while the healthcare assistants do all the actual, physical nursing work, ie bedbaths, turning bedbound patients, helping with toileting, feeding, and hydration etc.
And lastly, not not leastly, as midwives, we are all about women-focused care, working in partnership, communication. On the general wards, we are seeing very poor or no communication, patronising tone, talking over people, no confidentiality.
So is it our job to blow the whistle on the nurses who are our mentors, for the poor standards of care they are living with? After all, their morale is already at rock bottom. And the Care Quality Commission has already lifted the lid.
I don't know what to tell my friend, I can't answer her question, she has to figure it out for herself.
But I do know that I don't want to get sucked into the system and start believing that the care we are providing to the elderly is all that they deserve.
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