So... I woke up this morning and couldn't get out of bed. I was suddenly full of stress about this seminar I'm in the middle of preparing, my brain was pumping out various different scenarios about what bit of the work I needed to do the minute I got out of bed, and I just froze.
This happens sometimes, used to happen a lot more, and it's usually when I've been putting unrealistic expectations on myself, e.g. I will do 10 hours work a day for the next 4 days without a break. Then I kind of burn out and anxiety takes its toll.
I eventually got up, and immediately began to eat for England, and compounded that by digging out a library book I hadn't read and completely lost myself in it. (Even though it was really badly written!) I didn't come out of this until 3pm when dh went to do the school run. I finished the book, and looked up, and suddenly realised that the feeling I was feeling was fear. That was what was paralysing me. Quite often I don't go outside myself to look at what's going on, it's something I need to do more of. Once I realised that it was fear of not finishing the work that was paralysing me, I immediately made a cup of tea and went upstairs and sat down on the big computer and started pulling my research together.
Seeing the fear as not based in reality just made it evaporate. I've proved to myself that if I just put my head down and keep doing the next one task and the next one task, I will eventually finish the piece of work, without any panicking or last-minute stress being necessary.
In my first degree (when I was much younger), I had no idea about my Aspergers, and was living in a chaotic, confused, and often drunken state, I struggled to undertake any work at all, and was very unhappy. I had the constant suspicion that I didn't understand what was going on around me (I was right). I was also horrendously bullied, which I hadn't expected at Uni, I thought that was school stuff, and people would be more mature.
Thank god I'm in my forties. Thank god my kids got diagnosed with Aspergers, allowing me to walk the path to self-diagnosis. I love being this age and actually understanding what's going on around me, being able to own my own shit and disown everybody else's.
Life is good.
Friday, 6 January 2012
Thursday, 5 January 2012
Writing - A Very Aspie Obsession
So...been thinking about writing and how important it is for me, I suppose it's a way of making sense of the world, and a way to connect with other people without having to consider their needs overly much (!).
It's just a magic combination, aspie, special interest and keyboard. The need to get stuff out of my brain is on occasion, quite overwhelming. I have always been an obsessive list-writer, and advance planner, and loved creative writing in school. Once I had graduated, I missed the academic writing, and eventually turned to lobbying to get my writing fix, lots of press releases and more strategies, tactics, planning etc.
For me, a lot of writing is about problem-solving, it's not enough to just get my thoughts down on paper, there has to be flow, and plot, and entertainment value. And there is the editing process, which is so vital, and so difficult.
Since the very beginning, this blog has been a start-to-finish writing exercise with no editing allowed, except backspace to correct misspellings. Don't ask me why it's like that, my aspie mind just generates rules sometimes. My last big project was my novel, and that was all about re-reading and editing, and plot control. Now that I'm studying again, my writing isn't so much fun, there are other people's rules to learn, like scientific referencing, and basing everything on research. But there does come a point where it's all about flow, that's my favourite part, where it all comes together and starts to read like there's an argument to be had.
I'm noticing that a lot of the adult aspies that I'm following on Twitter are writers, whether for fun or publishing, there's a big interest in language, correct use of, and language, silliness around. I do so love that aspect of it, as well as the 140 character rule, it's so arbitrary, I can really relate.
What does cause this obsessive interest in language and writing that so many aspies share? Is there an over-development in language areas of the brain that corresponds to damage in other areas? I'm almost over-sensitive to language, if I see an ugly phrase, or a misspelled word, I will mentally shudder. I can spot a misspelled word at 20 paces. I'm also a really fast reader, I seem to read a page of text more as a picture than as a collection of individual words. I don't know if that's what they call eidetic memory. If I read something more than twice, the actual phrase lodges in my brain quite thoroughly.
But I haven't really found the optimal use for these skills, I don't want to do editing work, I'm more creative than that, novel-writing or academic writing is probably the best idea. After I finish my degree, I have a resolution to find ways to use my writing skills productively (and for cash!)
It's just a magic combination, aspie, special interest and keyboard. The need to get stuff out of my brain is on occasion, quite overwhelming. I have always been an obsessive list-writer, and advance planner, and loved creative writing in school. Once I had graduated, I missed the academic writing, and eventually turned to lobbying to get my writing fix, lots of press releases and more strategies, tactics, planning etc.
For me, a lot of writing is about problem-solving, it's not enough to just get my thoughts down on paper, there has to be flow, and plot, and entertainment value. And there is the editing process, which is so vital, and so difficult.
Since the very beginning, this blog has been a start-to-finish writing exercise with no editing allowed, except backspace to correct misspellings. Don't ask me why it's like that, my aspie mind just generates rules sometimes. My last big project was my novel, and that was all about re-reading and editing, and plot control. Now that I'm studying again, my writing isn't so much fun, there are other people's rules to learn, like scientific referencing, and basing everything on research. But there does come a point where it's all about flow, that's my favourite part, where it all comes together and starts to read like there's an argument to be had.
I'm noticing that a lot of the adult aspies that I'm following on Twitter are writers, whether for fun or publishing, there's a big interest in language, correct use of, and language, silliness around. I do so love that aspect of it, as well as the 140 character rule, it's so arbitrary, I can really relate.
What does cause this obsessive interest in language and writing that so many aspies share? Is there an over-development in language areas of the brain that corresponds to damage in other areas? I'm almost over-sensitive to language, if I see an ugly phrase, or a misspelled word, I will mentally shudder. I can spot a misspelled word at 20 paces. I'm also a really fast reader, I seem to read a page of text more as a picture than as a collection of individual words. I don't know if that's what they call eidetic memory. If I read something more than twice, the actual phrase lodges in my brain quite thoroughly.
But I haven't really found the optimal use for these skills, I don't want to do editing work, I'm more creative than that, novel-writing or academic writing is probably the best idea. After I finish my degree, I have a resolution to find ways to use my writing skills productively (and for cash!)
Wednesday, 14 December 2011
Aspie in the closet - unknowable consequences
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.
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.
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!
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