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.

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.

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.

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.

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!

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.

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:
  • 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.

Friday, 29 July 2011

Lovely Day Out. I won't hear different.

So... had a lovely day out yesterday to celebrate passing my end of year exam! (Faint cheers off...) Here is my story of Our Day Out.

It started badly when I came up with the spontaneous, impulsive idea that we would all go and pick up my results together, and then go to a lovely estate with beautiful gardens (and adventure playground) near to my Uni. Funnily enough, it wasn't aspie #1 or aspie #2 who had a problem with my spontaneous idea, it was DH, who immediately claimed to have half a dozen urgent domestic tasks which WOULD NOT WAIT till the afternoon. Strange, as I have never seen him complete any domestic task with any sense of urgency. Or at all. He rarely gets more than half way through any domestic task.

Having used some canny emotional blackmail on him, managed to get everyone in the car, and off to Uni. Got my result, with Pippi sitting on my lap (A15 if you're interested), and on my return to the car, announced it to the rest of the family, expecting rapturous applause. Which did not occur. DH still being sulky about being forced to have fun for the day. A bit of a row ensued, mainly me shouting at him and threatening divorce (under my breath). I know. I'm a bad wife and a worse mum some days.

In my defence, getting a great result doesn't immediately get rid of the stress involved in picking them up.
Still, we continued on to the gardens. I think Lucas had about 3 meltdowns during the course of the afternoon, and Pippi had one. DH and I had a showdown about the cost of getting in, and then called a truce. Lucas also got lost at one point,while I was taking Pippi for a walk to look at the roses, and was running around screaming DH's name, until I intercepted him quite by accident (not yet knowing he was lost), as he was heading for the exit.

Am I crazy to say that I had a wonderful time, and have the most amazing memories of that day? We all did our best, the kids did have a fantastic time on the adventure playground, we had a race round the maze, (the kids won), we had a lovely lunch with no rows, and everybody ate something. The weather was beautiful. I remember how much fun we had together, and how good we all are at looking after each other when things are going south.

Is ridiculous optimism another facet of autism? I seem to remember reading that somewhere....

Tuesday, 19 July 2011

Stress Management for Aspies.

So...have managed to relax a bit finally, it's been a super stressful year and a half, thank god it's coming to an end. First year of Uni now pretty much finished, and I've done well!

Mentioned to husband the other day that next year is supposed to be worse than this year. Same amount of coursework, and an anatomy and physiology exam on top. He looked dismayed. He said 'What???' I take that to mean I have not been the easiest person to live with lately. That's probably an understatement. Even my mum has commented on my stress levels, and we don't do emotions.

Have been taking some Valium overnight in the last week, to ease the muscles in my jaw. It works great, but it's not a longterm solution, as my GP pointed out. She suggested SSRIs, and I pointed out that there's no way I could sustain a midwifery course through cotton wool brain.

So I'm back to stress/anxiety management. I had a massage last week, and another booked for next week. Bliss. So nice to have somebody else forcing me to relax, as it's not a strength of mine. I know what I need to do, once my exam is over this week, I have promised myself (and the dog) that I'm going to start walking her at least 3 times a week. I have completely stopped exercising, and in fact once in the house, feel almost glued to the sofa, paralysed with some kind of fear.

Hoping to overcome the paralysing fear of whatever it is I'm afraid of. Don't know how successful that's going to be, maybe the counselling will help me to work it out. And I need to pick up that knitting again.

Tuesday, 5 July 2011

Kids and name-calling.

So... my gorgeous little girl has been upset the last couple of days, not wanting to go to school, crying when she gets home.

I hate it when this happens. The only response I really have is to keep her out of school. DH tells me that all the kids are shattered, between it being end of summer term and everything. He does most of the school pickups because I'm working long hours with my midwifery course. But it wouldn't occur to him to check in with the teacher, because he's always looking for the answer that will normalise Pippi, and make her not different. I'm going to drop Lucas in tomorrow and ask to talk to Pippi's teacher, see if we can work out what's been going on.

She did tell me something about being called 'loser'. My heart positively breaks when I hear stuff like that. But then she told me that she had called another girl that first. I don't know what's gone on, but I suspect that she's beginning to realise that she is different from the other kids, and her efforts to fit in aren't always successful. Her language has come on loads in her first year at school, but unfortunately her comprehension hasn't caught up with it, so I feel that the gap between the two has expanded.

But there is good news, her sports day was sort of non-competitive this year, and all the kids got different medals depending on how many points they'd gained during PE sessions. Pippi got a proper medal, and insists on wearing it at all times!!  I got a photo of her in mid-air giving a high five to her relay partner, hair blowing in the wind...

Good times!

Saturday, 25 June 2011

DON'T tell me not to worry!

So... my new counsellor made me really mad yesterday. She pointed out that my diagnosis (or not) of Aspergers is not the main issue, as I come across as normal, in comparison with the rest of the flawed public out there.

I think she doesn't want me to obsess over the Aspergers. She may well have a point - see all previous blog posts. But that's where I'm at right now, and telling me to get past it is kind of missing the point.

It's not willingly that I'm undergoing this big reassessment of my personal history, my daily behaviour, my adequacy as a parent (see next blog post). It's like a compulsion I suppose. I'm an analytical person anyway, that's just how my brain works. If something changes the entire way I have seen myself for my whole lifetime, then I'm going to have to spend some time working it all out. Let's call it a hobby! (read 'special interest')

I suppose I do have a sensitivity around the whole self-diagnosis thing, it's the first time I've told a professional about this. It's the first time that I've thought that getting a diagnosis might actually be useful. Her point was that I need to find ways to manage the real anxiety that I'm feeling, which is clearly true. Rather than ratchet up the anxiety worrying about my Aspergian nature. Let's face it, she doesn't know me very well yet.

Was there ever anything less useful than being told 'Don't worry'?

Stimming - Does it really work?

So... I have been reflecting on stimming, as I am trying to figure out what to do about my own troublesome stims.

I clench my teeth in time with my pulse. There. I said it. I've never told anybody that before. I may have mentioned the clenching thing to my dentist, who was not surprised, given the fact that I was seeing him with TMJ - a jaw problem, caused by nighttime grinding and daytime clenching.

It increases along with my anxiety, and I'm not sure what to do about it. I have seen people posting about how trying to prevent children from stimming only makes it worse, or drives it underground. I know that I had various stims as a child, some of which drove my mum crazy, and she banned me from doing them. Although looking back, some of them might have looked more like OCD than stimming, and that makes me wonder what the actual difference between the two. If we're all agreed that both OCD and stimming have anxiety as their cause, then maybe they are both different manifestations of the same thing?

I do see Lucas displaying particular behaviours when he's anxious, he walks along, and every other step he kicks his bottom with his right foot. He can do that for hours in the playground. He also sometimes tips his head over to the side and just leaves it there, and also makes a throaty noise when watching favourite TV programmes, or eating favourite food. Again, not sure whether we are in the realm of tics, stims or OCD here. Or whether it really matters what we call it!!

I went underground with my stims, which are all invisible now. There's the jaw-clenching/tooth-tapping one, then there's the one with my fingers, where I tap them against something in time with my pulse, but out of sight. The teeth one has definitely become unconscious, I have difficulty in stopping it now, although it causes me agonising jaw pain if I get too anxious. I have tried to decrease it by switching to my finger stim when I notice it, but I can't maintain that for long before I return to the unconscious teeth one.

When I consciously try to stop the teeth-tapping, I notice immediate sensations of rising anxiety, so I know that it is working to keep the anxiety suppressed. I guess the problem is that as the anxiety levels rise, so does the damage to my jaw as my body carries out its long-learned suppression technique.

Does it work? I think that the stimming channels my anxiety, and gives me an outlet, allowing a physical release of my anxious feelings. But I think that once it becomes systematic, and unconscious, it only serves to mask and disguise my anxiety levels, until they become intolerable. I suppose it's a type of coping mechanism, but I wouldn't characterise it as helpful.

Maybe it's like self-harming, a learned coping mechanism that can get out of control. As part of my Aspergian self-inventory, I need to decide if I really want to break the habit of a lifetime.

Monday, 20 June 2011

Marriage under pressure - dealing with autism

So... we've been going to the NAS Early Bird Plus course for the last few weeks, I just wanted to let people know how we're getting on.

Out of me and my husband, we have adopted opposite approaches to our kids being diagnosed. I have gone into research hyper-drive (natural aspie response!) and he has opted for the classic NT male 'let's ignore it and pretend it isn't happening' response. It's been a year now, and I try not to get angry with him, and I never beat him over the head with my research, but we are on very different pages. He's still a brilliant and intuitive Dad, and loves our two little conundrums to pieces! So I can't get mad with him too often (just sometimes).

We finally managed to get onto the Early Bird course, and I was so thrilled, as I thought this would be an opportunity for him to ingest some information about autism. I'm not so sure that's what happening though. I'm really enjoying it, getting to know Pippa's Teaching Assistant, (who is not allowed to talk to us at school, all communication has to go through the Teacher.) It's been an excellent opportunity to exchange our experiences of Pippa and Lucas, with other parents/TAs who have had similar experiences. And it's great to be given strategies to use in understanding our kids better, and how best to interact with them.

Some of the most basic advice, is to reduce/simplify language, and give them time to process language before expecting a response. Both of these are really useful, and I'm trying to put them into action on a daily basis now. I haven't noticed my husband using either yet, but I'm ever (idiotically) optimistic. He's still on defensive mode in the classes, 'there's nothing wrong with my kids' kind of attitude, although that's not what he's saying on the surface. I'm not interested in challenging his emotional shit around this, I have my own emotional shit to deal with (see previous post), and I can't be a counsellor for him.

We've been together nearly 20 years, and just having stayed together that long is a strength in itself, I guess you could call it inertia! That's part of the joy of marriage (irony). But it also means that our conversations can be very short and still cover massive amounts, we have verbal shortcuts, when talking about emotions, I have learned the hard way that he can't do long chats about feelings (his or mine), so I have to restrict myself to saying what I want to say, then shutting up (excellent marital tip). Then I give him a couple of days, then I ask him what he thinks, and listen to the answer. (more excellent marital advice! lol)

Anyway, it didn't start out as an essay on communication in marriage, but that's where I ended up! It suddenly occurs to me that I've been applying the Early Bird communication advice in my marriage for years. Hmmm, maybe he's not as NT as I thought. I would be the last one to know...

Need to get back to Aspienormal...

So...I'm back in counselling, spent an hour going through my mental health history, not such a pleasant experience. Especially the fact that it took a whole hour! She did seem impressed however that I had spent 2 years with a Jungian therapist. I guess there's hierarchies in counselling too. (Lol).

It's weird starting in that relationship thing again with a new counsellor. Let me see, this will be number 4. Number 3 was a total bust. Number 2 was great, but as I was pregnant at the time, didn't want me delving too deeply into very painful early history. Number 1 was my lovely Jungian therapist, who did a lot of hard work with me, particularly on my alexythemia.

Therapist number 4 seems nice so far, but I felt embarrassed at my extensive history, and myriad personal issues. It's not easy to open up so far so fast with a new person, it's a bit like being opened with a rusty can-opener.  Leaves jagged edges.

Back there again on Thursday, chance to have a bit of a more relaxed chat hopefully, talk about some more recent stuff. I do kind of like counselling, the feeling when you've finished that you've done some useful work. But it doesn't seem to come round fast enough, seems like a long wait between appointments. This time it's taken months to organise access to some free counselling, been trying to set this up since last October.

In the meantime the anxiety levels have been steadily rising, all the familiar symptoms, teeth-grinding at night, jaw-clenching during the day, no control over either. Meltdowns at home. Anxiety attacks just started last week. At least I know what they are now. Obsessive behaviours, TV watching etc, to hide from the stuff that's going on. Inability to switch off from work, or relax. Unwillingness to be around family, (maybe that's them as well as me!)

There has to come a time where you put yourself out there and really try to get yourself back on track. I need to be functioning at a vaguely normal level allowing for my Aspie nature.

My kids and my husband need me to be aspienormal again.

Tuesday, 24 May 2011

Addicted to books - Hyperlexia

So... i've been thinking about the ways in which autism has affected my life, and the way I look at my life.

At the age of 3, I leaned over my father's shoulder, and began to read the Telegraph out loud. Nobody had taught me to read, I had just figured it out for myself. I believe this is called hyperlexia.  I became a voracious reader. Among my early favourites, were Anne of Green Gables, not surprisingly, as I was an adopted girl with decided opinions, who just didn't seem to fit in, kept dropping things, and getting into trouble for speaking my mind. I loved Enid Blyton, especially the Famous Five, and the Naughtiest Girl in School (see previous). Once I reached the age of 10 or so, the supply of interesting books for my age range dried up, it not being a popular demographic with publishers at the time. I then proceeded to read my way through the library, and my mother's book collection, my father not being a great reader. My mother was fond of historical novels, of the more serious variety, Jean Plaidy rather than Georgette Heyer. She bought quite a few Reader's Digest Concise Collections, as they were good value for money, and leather-bound, looking well on the bookshelf. She bought many works from the Reader's Digest Book Club, all in hardback, and she has them all to this day.  By the age of 11, I had read most of Dickens, all of Austen and Bronte, Thackeray, Tolstoy, Dostoevsky, etc.

Rarely without a book in my hand, I saw school as an interruption to my reading activities, and did my work as quickly as possible so that I could carry on reading. I did not have many friends. To be honest, I didn't miss them. What I wanted was information and advice on LIFE. I struggled to understand what was expected of me in different social situations, or to comprehend the motivations of other people, the Novel was the answer to all my questions, as it allowed access to the stream of consciousness of other minds, and a glimpse into motivations, and social expectations and mores from different eras. It also asked nothing of me, and allowed me to drift into a dream-like state.

I came to understand the emotions of those around me through the medium of the written word, and by direct learning rather than intuition. However, it was a theoretical understanding until I reached my thirties, and went for counselling, which allowed me to identify my own emotions for the first time in my life. (But that's another post.)

I still love to read, it is less of an addiction now, but provides enormous solace when the outside world becomes annoying.

Saturday, 21 May 2011

It's the ignition that's the problem...

So... thinking about some more good news type stories, big news today is that I am actually managing to sit at the computer and do studying, when I plan to do it, in a motivated fashion, and for quite a long time at a stretch.

When I have been studying in the past, I have been a Just In Time student, I used to plan to work and then fail to work, until motivated by sheer panic at looming deadlines. But this time is so different! I have an essay and a poster to hand in, deadline is 10 days away. I finished the poster today, did most of the work over a month ago, and the essay I just have about 250 words left to finish it off. I did most of it before Christmas, and rewrote it last week. I had planned to do about 4 hours study today, along with a full day last Friday for the last 3 weeks, and I've actually done it. This is so unlike me!

I've always had problems with 'executive function', and one of my problems, is the link between planning and carrying out the plans. I can plan, write lists and organise for England, but I have always had great difficulty in actually sitting down to work. In the past, I suffered from excessive stasis, lack of impetus, and problems in changing from one activity to another. I think these things are all going on, but they seem to be affecting smaller parts of my life these days, and they don't appear to be affecting my studying at all.

I wonder why this is, is it just that as I get older I'm getting better at finding ways of overcoming my autistic deficits? Or is it more related to the fact that I'm genuinely passionate about Midwifery, and don't mind looking at the books, or writing stuff down about it. It's still hard to get over that moment of revulsion, where I look at the computer, and just want to run away from the work, curl up in bed and never come out again. But I've found that if I don't think about doing the work, or imagine doing the work, and instead, I sit down at the computer with the intention of going on Twitter, then I can spend 5 minutes on Twitter, and then accidentally start working. Once I've started, I can't stop till the task I've set myself is done.

It's the ignition that's the problem...

Friday, 20 May 2011

Feeling Irish... and the Queen

So... this week has been the Queen's visit to Ireland, and for some reason I found myself crying throughout the coverage. I had to sit down and figure out what was going on.

I lived in Ireland for a long time, although I'm English I feel about half-Irish (married to an Irishman with 2 Irish kids). But, as you may know, the English haven't always been very popular in Ireland, for some very good reasons.

Although I always felt accepted by most Irish people, and lucky enough to be loved by some, there was always a feeling in the back of my mind that I was essentially a foreigner, and would never really Belong. The Irish term for this is 'blow-in', and I could never shake it off.

Seeing the Queen visiting Ireland this week, and seeing Irish people allowing themselves to be so enthusiastic about her visit, has been very moving for me. I'm sure there are plenty of Irish people who aren't really bothered either way (I'm not a monarchist myself), but for the most part, people seem to be happy and excited about the visit, and keen to discuss all the plans and details. Everybody in Ireland was talking about the itinerary, and the fact that each single visit carried a heavy weight of symbolism.

Seeing her lay a wreath in the Garden of Remembrance was just amazing. The British monarch walking the streets of Cork shaking hands with the public was something I never thought I'd see. And her speech felt like a very personal expression of many of my own feelings. The sadness for the tragic history between our two countries, the difficulties of bringing up my children with their shared heritage in its shadow. I didn't even know I felt any of this, I'd never really tried to articulate it, as it just was the way things were. I never talk to my Irish friends about being English in Ireland, some of them have had more difficult experiences being Irish in England.

I have heard so many Irish people criticize the English, part of it being the painful history that there is no denying, and part of it just typical neighbourly stereotyping. (Like we do with the French and Germans). The need for England to lose at the football, no matter who they were playing. I did tell my husband in the end that it made me uncomfortable, and that he should consider the fact that his children are equally half-English.

I do wish the Queen had apologised, but I do feel that she went out of her way to convey her sorrow for all the horrendous events that have occurred in our shared history. For me, it felt like a healing, as if 'we the English' were being officially welcomed onto Irish soil for the first time. That's why I cried.

Sunday, 15 May 2011

Extended Family Bonding - what works?

So... realised that I had been using my blogging to help me deal with some difficult issues, and get some shit out that was causing me anxiety and depression.

But you guys deserve to hear about the good stuff too!! So in my next few blogs I'm going to talk about some of my best moments from the last while. By the way, things are going great right now, and I haven't felt this good since I was on anti-depressants! (I wish that was a joke, but it's not.)

My mum has let me know that they don't see enough of us, even though we live just a few miles away now, after living overseas for years! She said that she didn't want to do big Sunday dinners for all the family any more, as it's too much pressure for Lucas. She said she feels she hardly sees him any more, as we mostly get together for these big dinners, and he has meltdowns and disappears, or sometimes stays in the car and refuses to come in the house. So, upshot is they are going to come over for dinner on Tuesday night, after I finish work, it's going to be low-pressure normal family dinner, without sister and niece. I'm also going to find some things to do with mum and the kids at the weekend from time to time, trips out etc, maybe even join the National Trust (they're already members) so that we can go out to local stately homes and go for walks and stuff.

This might all sound kind of small, but in my life, it's huge! My adoptive mum is a very different character to me, not just down to the lack of aspergers on her side, but she's fairly uptight, growing up there was a big emphasis on the house, and the possessions, and not breaking stuff, I'm kind of the opposite. I think she's learning to be a bit more easygoing as she gets older!

A new approach to family time is on the cards then, I'm looking forward to it, and will let you know if we are successful!

Monday, 11 April 2011

Night terrors and self-care

So... I've been having these weird nighttime experiences, and I didn't realise that they might be connected with the autism, or that they were common enough in people with ASD.

I have these experiences, where I am not awake, but not asleep either. I believe myself to have woken up, and I KNOW that I am living a lie, and that I am pretending to be someone that I am not to everybody in my life. It's hard to describe, but it's an absolute and sudden recognition that this is a fact, and it leaves me feeling completely terrified. It's as though I had been hiding this fact from myself, and have suddenly realised it.

I cannot put into words the horrendous anxiety that I feel during these experiences. I don't seem to wake up properly after the experience, I think I go back to deep sleep. I think that these may be night terrors, although I know that the sufferer is supposed to have amnesia about them. I have partial recall of these experiences, which sometimes come back to me in a vague way when I'm waking up in the morning.

It doesn't take a genius to work out that my unwillingness to 'come out' about my Aspergers at college/work may be connected to these night terrors. I seem to be feeling an increasing level of anxiety, which in fairness, is probably the reason why I'm having the sleep problems, and is related to the Midwifery course I'm doing, which is a high stress experience.

I'm actually coping really well with the course, keeping up to date with course work, and mostly enjoying my time on placement, learning how to blend theory and practice, and developing clinical skills. But I can't ignore the anxiety levels, I need to remember to listen to my body, and deal with emotional crises before they arise.

Self-care is so important for us autistic types, I have learned over the years to recognise the symptoms that my anxiety levels are rising. Here's my checklist:

Jaw clenching/teeth grinding - jaw pain at the end of the working day, and lockjaw when I wake up
Hairtrigger temper - Husband can't do anything right (lol)
Hyperactivity and inappropriate humour - my subconscious way of dealing with anxiety (doesn't help)
A sense of rising panic when I think about my coursework that's due in before end of year

I've found out that I'm entitled to free counselling through the NHS, and I will be calling the service tomorrow to get an appointment. That's another lesson I learned years ago:

Only I can ask for help for me.

Saturday, 9 April 2011

Social Overload and Downtime

So... I'm having my first day off in 12 days, it's very nice. Actually I just realised I spent 4 hours this morning studying, so not so much of a day off. I guess I've reprogrammed my expectations since starting the course.

I still feel guilty when I need time for myself. Since my self-diagnosis I've been giving myself a bit of a break, as I finally realise what the things are that I'm having trouble coping with, and why I seem to need more 'doing nothing' time than other people to recover from my normal week or whatever else I've got going on.

But I do wonder, now that I'm more settled and at peace with myself, I seem to be able to get by with less of my 'downtime'. Is that because before, I was anxious all the time, and depressed some of the time, which would explain the drive I had to hole up in bed for an entire weekend, incapable of dealing with anybody or anything. Or was it just overload?

It's really hard to figure out what was going on in your emotional past, you can't touch it, and those kinds of memories are so unreliable.  I know that I've had and managed with less downtime since I had the kids, because they give me a reason to be more up, give me motivation to do stuff, and anyway, they don't really let me sit down and do nothing for long!

I do know that in my '20s I would frequently have spent whole weekends in bed, talking to nobody, with  phantom 'flu' or whatever else I felt like telling people. I varied between hyper-social and utterly unable to bear human company, mixed in with mostly normal functioning at work.

Has anybody else experienced this kind of social overload?

Tuesday, 5 April 2011

First playdate in over a year!

So... Lucas was invited out on a fun swimming session by a new friend today! we had to cut short our counselling session and rush over to the pool,  but it was SO worth it!

Lucas has been talking about this new friend, James, who seems to be a real boy, while Lucas struggles a bit with rough play, and gets upset when anybody bumps into him. He's come home a few times with stories of things James has said that has upset him. But he still seems to be talking about him, and playing with him quite a bit.

Today, out of the blue, James' mum asked if Lucas could come to a fun swimming session after school tonight, I was so thrilled! It's the first invitation he's had to play with somebody since he started in this school. So we rushed over there, and I got in the pool at first to make sure he was settled in, as soon as James arrived, they started playing together, and were really happy, so I exited to chat up James' mum!

I had a lovely chat with Kate, who's moved here fairly recently after breaking up with her husband. She has a younger daughter a year younger than Pippi, and another daughter a year older than James. She was really lovely, and we had a great chat, she's a laid-back mum like me, as far as I can tell. And she invited Lucas for tea on Friday, and an open invitation for us to drop him off at the weekend any time we want!

This is really unprecedented stuff for us, I was a bit overwhelmed, but of course I acted like this was all everyday stuff. I haven't got into the diagnosis, as we were in quite a public place, but I've arranged to pick Lucas up on Fri, and if the opportunity arises, will have the chat then. It's never caused any problems before, but that was mostly with people who already knew Lucas. I haven't had to do this before, and I'm a bit nervous. Maybe I'll wait a little bit longer. I don't want to wait too long, I know it'll get harder to have the conversation the longer I leave it!

Today is a success story. Actually there's successes every day! But today was really special. I don't really care how well Lucas does in school, as long as he can be around people and be happy, and have friends to play with in the playground. He's so much happier these days, I could almost forget the dark distant days when he didn't have any friends, and played alone every day.

Must remember that strength comes through adversity!

Monday, 4 April 2011

How big a radical am I really?

So... tired but happy, been complaining on Twitter about my job, but I really am so lucky to be doing what I'm doing. There were 20 people who got turned down for my place on this course.

I have had some amazing opportunities over the last few days to remember exactly why I made the decision to study midwifery over 3 years ago, turning our family life upside down in the process! I was at an amazing home birth the other day, which just warmed my soul, and I got to look after one of my friends in labour this week as well, which was a really special experience. I felt needed and able to meet some of her needs at that very vulnerable time. She was looking to me for support, even though I was keeping out of the way of the REAL midwives! She asked me to explain stuff they'd said when they were doing other things, and I know she appreciated having me there. It was the first time I'd properly communicated with a woman in labour, and it was fantastic, being able to explain to her what was going on in her body, and reassuring her.

It was very instructive to see some of the things that midwives do that they think help the woman. The whole directed pushing thing is quite cruel. I think that they made her feel she was doing it wrong, and that there was a deadline she wasn't going to meet. Chanting 'Keep it coming, keep it coming, keep it coming' about a hundred times. But the baby came and was fine in the end - yay! So happy for her.

I suppose what's the most interesting thing for me, with my 'systems focus' is how hard it is to change the way people do things in an organisation the size of the NHS. Directed pushing has been discredited and proven to be counter-productive through serious research. But many midwives are still enthusiastically practicing it - just watch 'One Born Every Minute' for proof.

As a student midwife, it's my responsibility to challenge poor practice when I see it. I'm quite a radical when I see something being done badly, I want to change it, and I've put a lot of energy into campaigning for better maternity services in the past. But it is a totally different thing to swim against the tide in the enormous NHS. As an Aspie, I'm already swimming against the tide by being in a 'caring' role at all. How willing am I to engage with the many things that could be improved in the way we treat women in labour? Can I risk upsetting my senior midwife colleagues with my opinions? Am I going to put my chances of getting a job here when I qualify on the line?

Watch this space...

Sunday, 27 March 2011

Undiagnosed Aspergirls part 2

So... after posting about the various women I have met in the last while who were obviously on the spectrum and not diagnosed, I realised that there was one thing in common with each of these encounters.

These women had an intensity about them, which I found completely seductive. Mainly because it's something I instantly recognise in myself. I spent years of my life in search of intense experiences - not such a good idea, you can imagine where that led me. They were in search of one-to-one conversations with somebody who was interested in what they had to say. They tended to monologue, were bad at listening, and in one case, had rampant echolalia!

But when I say the encounters had something in common,  it was my reaction. In all these cases, I immediately knew these women as I know myself. My former self. I recognised the desire to conform socially, particularly in a work environment.  The anxiety that comes with knowing that you are not quite meeting the grade socially, and you can't seem to fix it. The desperate need to make that connection with somebody else, and explain all about your special interest, and why it's so important and, well, interesting.

In my earlier post, I talked about seeing things going wrong, and wanting to help, but not being able to. But in terms of my own personal response to them, in the end, I backed away. I found their intensity slightly scary, because it was so familiar, and their anxiety set off my own anxious response.

Maybe part of the problem was that I didn't want to be reminded of who I used to be, before I finally gained some meaningful self-awareness, a way of explaining me to myself that made sense to my core. It was like seeing myself through others' eyes, in all my ignorance of what was driving me.

Maybe there are some things we should never see.

Saturday, 26 March 2011

Aspie mum of aspie kids - does it make it easier?

So... just to say up front, I'm not competing for who's got it worst or easiest! That seems to be kind of pointless. But today was the first time that it occurred to me that it might actually be an advantage to have Aspergers if you have kids who are aspies too.

I know every mum gets that feeling sometimes that only they truly understand their child, and nobody else will really 'get' them in the same way. It's why mothers in law have such a bad reputation! I was just thinking today about the ways in which I empathise with Lucas and Pippi. My daughter is 6, but she has significant language delays, and since she started school it's been really hard to know what's going on there, and how she is dealing with it. She doesn't have anything like the language to tell us anything about what happens during the day. We might hear a sentence about one or other child, rarely the same one twice.

She's started wetting the bed lately, despite being dry for the last 3 years, and she's been getting really upset over small things, and then telling us tantalisingly incoherent stories about things that have upset her in school. I feel for her, it's so hard to see her suffering and not to know exactly what's affecting her.

I remember my own experiences of primary school. I'm sure that I was happy a lot of the time, but I remember clearly being different from the other kids, and not understanding what it was about me that was causing problems. Even at that age, the other girls had comparatively sophisticated social understanding that I was completely lacking. I spent most of the time back then either reading, thinking about my favourite books, or imagining myself in my favourite books. I did the academic work in double quick time, with the aim of being allowed to read for the rest of the lesson. I was very quiet, and nervous of the other kids.

But Pippi isn't like that. When I see her around her school friends, she is boisterous, and full of life, jumping around, talking nonsense. She seems to fit in just fine, but then I hear one of them calling her a 'baby', and I know that they have noticed that she doesn't talk like they do, or understand the complexities of their game playing. I suspect that she is starting to feel different from them.

But does my own experience make it easier? Can I find a way to use it to help her? I suppose the answer right now is, I don't know. I think that the emotional side of things is key. I want her to grow up to be a well-adjusted, happy aspie, with a grounded knowledge of what she is capable of, given the right support.  Realistically, all I can do at the moment, is to keep the school posted about things at home, keep those lines of communication open. And prioritise Pippi's emotional wellbeing, make her feel safe, listen to her when she's upset, convey to her that her feelings are important, and she is valued, loved and understood.

Extra cuddles. That I can do.

Thursday, 24 March 2011

Therapy works?

So... some people say that talking therapies are not appropriate for people with autism, and can in fact make their 'symptoms' much worse. Experts recommend Cognitive Behavioural Therapy, which is structured counselling, which focuses on desired outcomes, and strategies for attaining these.

Handling my emotions has always been difficult, I spent quite a few years in therapy, before realising I had Asperger's Syndrome. I started out with Jungian therapy (think Woody Allen!) which was a lot of me talking, and a lot of questions from my therapist. This was useful in coming to understand some of my feelings around being adopted (more about this on a later blog). I can't remember what my therapist looked like, as I never looked at her while I was talking. The stuff we were dealing with was too painful.

I stopped this therapy after 2 years of going every week (and crying for an hour afterwards), and at the end of this period, I at least was able to name all the emotions I was carrying around. Prior to therapy, I was emotionally illiterate, and never understood what I was feeling, or how I was projecting it outwards.

I ended up back in therapy as soon as I became pregnant for the first time. Even though this was planned, and I was 35, I thought I was going crazy. The hormones along with quite a lot of unresolved stuff around my mothers (natural and adoptive) and my own fear of being a bad mother, sent me quite doolally for a while. This time I went for more structured counselling, I wasn't able for the delving into deep-seated and ancient feelings of loss while I was pregnant. Counselling was very helpful, and I was able to put some stuff in the places it belonged, and leave it there permanently.

My son is currently partaking of Cognitive Behavioural Therapy, and it is really helping him to manage his anxiety, but then he has had me to help him with identifying and accepting his difficult emotions since he was tiny, this has been an important role for me since always.

When I finished my last counselling session I felt like a bit of a fraud, because there was something about me that I wasn't managing to communicate, that I was too afraid to voice. Stuff about how I related to people, even my own family. Stuff about my constantly changing obsessive interests, and how everybody in my life took a back seat to them. Stuff about just being generally weird and having to DIAL IT DOWN around other people all the time. I was too ashamed to bring any of that stuff up, and I didn't have the words for it, or any way to communicate any of this as a total experience.

I didn't have the word Asperger's.  What a great word.

Undiagnosed aspergirls

So... I do sometimes wonder about some of the people around me, who display some autistic tendencies. I know that there must be significant numbers of undiagnosed autistic women my age walking around, who have no idea why they have difficulties sometimes getting on with their peers, or why they get in trouble for being too outspoken at work.

I can think of two women I've met in the last 6 months who I've seen getting themselves in trouble. Both of them don't seem able to stop themselves from saying things they really shouldn't have said, when they thought they were being humorous.

It raises a lot of sympathetic feelings to see somebody doing that, because I know the slightly lost feeling when you let yourself go, thinking that you're belonging in a group, then suddenly it all goes wrong, and you know you did something wrong, but you don't know what or why you did it. Worse still is when you go on your merry way, thinking everything is hunky-dory and as soon as you've gone, everything falls apart, and you only hear about it hours or days later, when it's too late to fix it, or explain anything, and you're the baddy.

I see that lost, hurt, uncomprehending look on their faces, and I want to help. I remember some of the things that people have said to me and about me over the years,

"You do know you come across as quite aggressive?" (age 19)
"She's over there crying her eyes out, while you're over here partying." (age 30)
"You're very masculine aren't you." (age 42)
"so now you're writing a novel! I never know what you're going to come up with next." (age 43)

These are all branded on my soul, along with many others similar. Not knowing why things were going so badly wrong was so much worse than knowing. I wish I could fix it for those women, or at least explain to them that they're not alone. If this blog reaches one such woman and helps her to understand herself a little better, that will be more than enough reason to write it!

With thanks to Rudy Simone, for having the courage to write such an amazing book, that tells it how it really is, and helps Aspergirls to reflect on their lives.

Tuesday, 22 March 2011

Married but different

So.... counselling session today, Lucas didn't attend today, usually it's the two of us together, but today it was me and dh.

I think a few comments I passed may just have given the impression that dh and I aren't singing from the same hymnsheet when it comes to how we deal with the Aspieness. I'm all for proactive approaches to help Lucas with his anxiety, Cognitive Behavioural Therapy, followed up with interventions at home to help him feel safe about trying new things, and rules for us to follow around stuff that makes him feel unsafe, like having our friends and their kids round to our house. So if people are coming over, we give him 2 days notice, we help him hide his favourite toys, and we check in with him every so often to check he's OK.

DH loves both our kids and would go to hell and back for them. He thinks they are both tiny geniuses. But he won't open a book about Asperger's syndrome, or read an article on the interweb, and he thinks that counselling is the biggest waste of time ever.

The counsellor asked me to bring DH in, so we could discuss the approaches we are using, and put up a united front. He tried! He gave up in the end, and the best that he could do was to get us to agree that I'm into proactive approaches (as above), and DH doesn't object to this. There was no anger, I have stopped nagging him to be more informed about Asperger's, seeing as he is in the minority in this family! I have given  up on him ever really understanding when I talk about this stuff. That's one of the reasons for this blog, the chance to share with people who get it!

One of the biggest payoffs from our counselling sessions has been that it has freed me up from the angst that I feel when Lucas is overwhelmed with anxiety and shuts down. Now that I know what approach I'm using, I can leave him alone to recover when things get too much, and then later on, talk to him about what triggered the anxiety, and how he managed to get over it, and what we can do to fix whatever is bothering him. Sometimes it's fine just to recognise that he's a bit tired and grumpy that day, and agree that we can't be always happy. Before, it used to upset me so much to see him so much, but now I can see it as just a temporary reaction to a particular situation, that will pass, and that we will learn from and move on.

I'm being much more strategic about trips out of the house, I seem to have internalised the new approach, and I'm automatically consulting with him a few days beforehand, negotiating any difficult areas before they occur, where possible, and coming up with a contingency plan for unforeseeable circumstances. This seems to be allowing Lucas to feel safer about going places, he knows that we won't let his anxiety overwhelm him, that we will listen if he's not happy for some reason, and do what we can to fix it.

Maybe this is the beginning of a brave new Lucas, who will be willing to do more things like going to live concerts! He's signed up for cross-country running after school - his first ever extra-curricular activity, something I never thought I'd see.

He even ate bread yesterday, first time in 3 years. Progress is progress!

Monday, 21 March 2011

Bieber couldn't be better (lol)

So... dragged by Lucas, my aspie son, to see Justin Bieber in Manchester last night, not really my choice of a night out, but I've found that encouraging any kind of special interest can have unexpected payoffs.

Lucas was popping some bieber-style moves, singing along at the top of his voice, and totally having the time of his life! Since this interest in Bieber started, he has shown an interest in the guitars we have always had around the place, and has even picked up the half-size one, and started trying out different ways to get a sound out of it. I think he is finally going to take up dh's offer of teaching him guitar. He's also secured a promise of a set of drums on his birthday!

I know there's a lot of music snobbery around, and a lot of people would look down on Bieber and other teen pop types, (including dh) but we were both so thrilled that Lucas was taking a serious interest in his own choice of music, up until now, he's mostly listened to music that we have put on his iPod, upbeat stuff selected from our own back catalogue mainly, some Beatles/Kinks tracks, ABBA, Simply Red, all kinds of random stuff. But this is the first time he's chosen something for himself, he requested the album for Christmas. I'm so thrilled that he's starting to appreciate music that speaks to him, and belongs to his generation. At his age, I didn't even know that pop music existed, as my parents only listened to classical music on occasion, and didn't approve of any kind of modern music.

I took some precautions, brought ear plugs, which he tried but didn't like, got there quite early to avoid any pre-gig stress, held hands the whole time we were wandering around so we didn't get separated, the crowds weren't too bad, there were always gaps, he went a bit quiet when we were waiting at the entrance, but I kept checking he was OK. We got a huge tub of popcorn which got him through the wait for the support acts to come on, and I explained all the things that were happening, the order the acts were going to come on, where the musicians would be on the stage, and what would happen at the end of Justin's set, the rules about encores! I think all that helped, and I noticed that while we were dancing, he was looking around to see exactly what other people were doing, so he could wave his arms in time with everybody else, and make all the right hand shapes (lol).

It was such a meaningful night for me to be able to bond with him over his first music crush, and take him to his first proper gig! We had lovely cuddles, he wrapped my arm round his head when the screaming got too loud for him, and we held hands and danced together most of the night (we were quite high up, I think he was afraid of falling down). Maybe it sounds too cutesy, but for a 9-year old boy to be so affectionate in public is pretty rare these days! Some of the girls around us thought he was really cute, with his baseball cap and bieber haircut!!

I love him so much, and I was so proud of him yesterday for trying something new and really scary for an Aspie, and doing it with flair!

Thursday, 17 March 2011

Brain Filters

So... today I'm thinking about the stuff I really shouldn't say, but somehow by the time I realise it's a mistake, it's already left my mouth.

Does this ring any bells? The times that I have tend to screw up are in two main categories (what an aspie, categorising my social errors!!) First is when I'm very tired, or stressed, and my brain isn't working fast enough to stop me from saying stuff I should keep to myself.

Second is when I'm relaxed and enjoying myself, and I forget that I can't just say something funny and clever on the spur of the moment, because I end up hurting people's feelings.

Sometimes I do get away with it, and I do have a reputation for having a very dry sense of humour among those who know me well. Those who don't know me well often don't realise I'm joking.

The one time I never screw up verbally is with my kids, I know I can't use adult humour on them, even if my oldest is a sarcasm convert, they can't take it.

Don't dish it out if you can't take it...

So... I had a kind of appraisal meeting today, with my mentor. It mostly went well, she had a couple of comments on things I could improve, nothing major or unexpected. But...

She uses sarcasm a lot, which I struggled with initially, as it took me a while to figure out when she was joking. I had quite a few very embarrassed moments, as she pointed out my failings (this is my first placement). She does it in front of patients, putting down my skills in a jokey way, and sort of encouraging me to join in. I think it's a way for her to have a quick humourous bonding moment with some of the patients. I've educated myself on how and when she does it, so that I'm not taken by surprise, and have mostly just laughed, occasionally I have joined in a bit, mock-defending myself. That's all been fine. She has gained a reputation among former students as very hard work, and a bit of a b****. I imagine they didn't know how to take her sarcastic comments, and found them hurtful. I've tried very hard not to go down that road, and my focus has been on understanding her better. 

But, I made a jokey comment to her the other day in the office about her teaching style, in the spirit of the banter that she has encouraged, and although at the time, she took it as a joke, it was obvious today that she has taken it to heart, and spent quite a bit of time in my appraisal, defending herself from a joke that I never meant her to take seriously. She didn't actually say why she was explaining her learning style in depth, but it was fairly obvious. I didn't mention my original joke, as I didn't want to make things worse. 

Clearly she is quite sensitive, and this has played on her mind, and maybe the sarcasm is a defence mechanism for her. But has it not occurred to her that she is a healthcare professional with 20 years experience, and maybe all her little new students are less able to cope with her sarcasm than she with theirs? She is in a position of power over us after all. 

As an aspie, sarcasm is so difficult. I can join in with sarcastic banter a little, but I do get it wrong sometimes, and on occasion, I get too close to the bone, and this is obviously a case in point. I suppose the lesson is the same one I keep trying to internalise, SHUT UP! Not all the time, but don't do the banter thing. 

Wednesday, 16 March 2011

Aspie - In the Closet

So... in college today, everybody waiting to get their first set of results, major stress all over. I was trying not to get stressed, but when surrounded by all that anxiety - difficult not to join in.

Yesterday I had a very typical, for me, aspergian lapse of manners, there were two of us supposed to have a tutorial straight after work with our personal tutor, she arrived late, and asked if we had figured out who was going first. There was a pause, and my friend looked at me, I immediately jumped in and said "I'll go first, you can go first next time." Completely forgot that her husband works night shifts, and she had to leave early. Went straight into the tutorial, and came out to find her, coat on, face all red, obviously upset. That was the point at which I realised I had screwed up. Apologised in person briefly, and by text later on, twice, and I think that we're OK.

I hate it when I get stuff like that wrong. That's when the word Disability starts looming in my mind. I feel quite helpless. Don't get me wrong, the vast majority of the time, I pass as Normal/Neurotypical, although people think I'm eccentric, they see me as clever, and articulate. I got voted in as class rep on my Nursing course, not my idea at all.  I have been consciously trying to keep a low profile, as I am suddenly aware that doing this course could seriously expose my social deficits. I try not to talk too much in classes, not to answer all the questions I know the answer to, just a proportionate number, like everybody else. I consciously ask other people how they are coping with the stress, and I have banned myself from indulging in special interest monologues. (I don't always manage it, but I have cut down a Lot.)

I've been reading the posts on Social Rules on Wrong Planet, and it's really interesting and helpful. I can see from the posts that lots of us aspies are social anthropologists, learning social rules through observation and bitter experience of getting it wrong. And some people are asking 'should we be doing this?' Should we be trying to pass as N/T? Shouldn't we be proud of being Aspie?

I only have my own answer to that, which is a huge fudge. I am proud to be Aspie at home, and I am totally proud of my Aspie kids, and very public about their status. But when it comes to my new career, I am afraid that if I 'come out', I will be subject to prejudices around my ability to be empathetic, or read body language. In fact, I have had years of experience of watching body language very closely, until my conscious readings are usually as accurate as those of an intuitive N/T. While I don't see any issue in becoming a nurse, I suspect that there may be many people in the NHS who would be very quick to say that my disability disqualifies me from working in that role.

What do other people think about this? Should aspies be working in 'caring' professions? Should we be 'in the closet' at work?

Saturday, 12 March 2011


I've been reading quite a bit of stuff about self-diagnosis, and criticism of people who have identified themselves as self-diagnosed with Aspergers. I think I'm giving myself a free pass on this one, as both my kids are officially diagnosed, and I'm very similar in so many ways to them. I think that part of the problem is that there are many people are out there who don't really know that much about autism, but because they've been hearing about it in the media for years, they believe themselves to be well-informed.

And of course the internet allows people to say anything at all to anybody at all. But social conventions are there for a reason. Take the brakes off, and you're going to have a crash. Some of the people who are spending a lot of time posting on the internet are not people I would want to talk to about these issues in real life. For me, getting on the internet is about sharing my experiences with people who understand me, and possibly clarifying some things for people who are interested, as well as getting more information on how to help myself and how to help my kids, without getting overwhelmed and trying to do it all at once!

Self-diagnosis is not a big deal. Diagnosis wasn't available when I was a kid, and really wouldn't add anything to my life right now. I already have coping strategies well-established, and I'm now consciously reviewing those. Official diagnosis for me wouldn't really add anything to my life or my understanding of who I am. That happened after my kids were diagnosed, as I gradually began to recognise my and their autistic traits more or less simultaneously. It was very freeing, and I am so much happier now than I ever have been. Being able to understand what's going on in my head, and why I react to certain situations the way I do, has been truly a revelation, and has empowered me.

Thursday, 10 March 2011

Parents' evening

 So we went along to parent's evening on Monday, and our aspie son is doing fine really, the handwriting is holding him back, but hopefully that will come in time, he's only 8, he's still got a few years at primary school to get over that. But our aspie daughter is another matter. Her language is about 2+ years behind the other kids in her class. She gets upset sometimes for no apparent reason, and then comes out with stuff that's happened at home that's upset her. Of course, she does the opposite at home. She was the happiest kid ever until she started school, totally oblivious to being different, but since school I think she has started to feel different.

I can remember my own feelings from the same age, I had the aspie thing going on, but not the language delay. I internalised the difference as guilt, and shame. Maybe because I'm a catholic? Not any more, but back then. I can still tap into my feelings from that age of being afraid of doing or saying the wrong thing, I was always trying to cover up my inability to figure out what I was supposed to be doing in various different scenarios. I could never figure out what the rules were, they always changed, and seemed to vary depending on what group of people you were in. I copied others, but this often got me into trouble, as I didn't know which bit of mimicry to use in what situation. I needed a map, and didn't have one. I felt quite lost and I think I have been constantly anxious my whole life.

So what do I tell my daughter. She doesn't even know the difference between in front of and behind. How can I fix her sadness, when I can't even begin to explain what's happening to her? Of course I can't. I know that. Doesn't make me feel any better about it.