I so do not like modern technology

I discovered a new thing to add up to my Ways in Which I’m Fucked Up List this evening. Video calls. Who’d’ve thunk it. Actually, considering my sporadic issues with answering the phone and  my ongoing inability to watch anything with more personal content than an archaelogy documentary without at some point sticking my fingers in my ears/ shutting my eyes/ leaving the room,  it was kind of predictable with hindsight. Bloody hindsight.

Not sure that would’ve helped anyway.

There I was, on the sofa, merrily using an e reader app on my laptop to read a book, when my laptop made a horrible, insistant, sound that I’d never heard it make before. Slightly freaked I bashed at keys trying to work out what was going on and I realised that my sister-in-law was trying to connect a video call via facebook messenger. The sister in law that never seems to use facebook, is now using it in a function I don’t know existed. I fumble my way through some Grant Your Camera Permission type screen in time to see that she has hung up.

A nice, calm, short, text based interaction confirms that she was in fact trying to see if they could contact us that way. I  let her know I’m going to extract my husband from bedtime and we’ll call back. I know I need my husband for this somehow, anyway, it’s his brother.

I go upstairs and settle a slightly hyper girl and in the middle of some random new ritual involving 17 teddy bears, and then go and try and extract my husband from The Boy’s room. The Boy is feeling clingy and has inveigled The Man into his bed and is lying there wide awake not looking like he’ll settle any time soon. I tell The Man that  I need his help with something and he manages to get away a couple of minutes later.

I explain the situation, press the call back function, suddenly realise I can’t do this. I. Can’t. Do. This. So I mthrust the laptop at him muttering something like “I can’t do a video call, I can’t talk with myself on the screen” and scarper.

It turns out that was not enough of a chat to explain.

He keeps trying to get me to come and sit next to him on the sofa and look at our baby niece and join in the conversation. He tells me he’s changed the view so we can only see there end now.  I have no way of saying to him with my brother in law and his wife listening that I simply cannot do this.  I lurk nervously outside the room, pacing. In answer  to questions thrown my way about a planned trip I grab the calender and throw it around the door at him, then I go and wash up. With the door shut (I nevr shut the kitchen door). Washing up is good. Washing up is calming.

Feeling a bit calmer, I make it back to the living room and sit on the floor, facing my husband, eyes closed, fingers in ears, trying to remember to breathe. I manage to take one hand away from my ear and make a fist and put it on my head, hoping that he knows the symbol I learned as a teenager that means “I’m invisible, behave as if I’m not here” (yup, I did some minor forays into Live Roleplaying in my youth). Surely that has cropped up in our 20 years together. Surely.

I start to relax a little. I open my eyes. I look at him. I reach out my foot so it’s on the edge of the sofa. He squeezes it, not giving my position away. I can do this. I just have to keep breathing. In a minute I’ll be able to take my fingers out of my ears. He turns the laptop screen around, I panic, but he’s just showing them the dog, not me. Still, my anxiety rate has shot back up.

Then he talks to me, and of course they can hear at the other end, asking me to sit next to him and see our niece on the screen. He doesn’t understand after all. I feel paniced, betrayed that he’s given my position away. I know  this is illogical, that nothing bad can happen, but that is knowledge is not taking my panic away, and the thought of my in laws knowing how crazy I’m behaving is making everything worse.

I run from the room. Go up to my room. Lie face down on the bed in the dark, dry sobbing. Goddammit I can’t even cry properly. I can’t distract myself with my book, he has the laptop. Or noodle online.  I check the bedroom, his tablet isn’t here, that’ll be with him downstairs then. I try and think what might calm me down, I could phone my friend, I have a landline phone here, only her number is on my mobile in the living room.

I feel paniced, anxious, stupid, ashamed.

It passes. Of course it passes. I even manage not to yell at him when he’s finished talking and comes to explain how everything was ok, that I needn’t have woried. He explains, like he did downstairs, that he’d minimized the image we were sending, that I wouldn’t have had to see it. I explain that I knew that and it was still a problem. And I manage, somehow, to gently remind him that he knows what a panic attack feels like and logic doesn’t help when you’re having one.

So now, I’m processing my latest crazy. Alone in my room. Wondering what my in-laws think of me. Mulling over how Asperger’s ish this behaviour is.

Happy Fucking Valentine’s Day.

 

 

Facing Facts

This week has been, well, pretty grotty. Not terrible, not dramatic, but not exactly wonderful either. I feel like I’ve been firefighting and I thought I was getting away with it until today when I got the phonecall about a meeting I didn’t show up to. Not a meeting for me, no, that would be too easy.  A meeting where I was supposed to be helping someone else, another parent having a hard time, and I had completely and utterly forgotten about it. And the guilt hit me head on like a truck.

I briefly wallowed in self pity. Then I tried running away (well, into town, chatting to the nice stall holders at the farmers market, same difference). Then I tried justifying to myself why it was not my fault I’d done this. Going over all  the rubbish things that had happened this week that had led to this almighty fuck up. I thought I was being compassionate, not beating myself up for an honest mistake. Then, bam, I got hit again. This time with a phrase I said to my daughter this morning, that can straight back into my mind and reverberated between my ears. When I was trying to talk to her about something she’d done wrong and she was too busy explaining all the things her brother had done wrong to listen to me, I said “if you don’t admit to yourself what you’ve done wrong, you won’t learn to make better choices next time”.

Shit, that was what I was doing. Blaming others, pointing out their mistakes and flaws to myself rather than facing up to my own failings.

I started trying to compose a post in my head, but every which way I tried what was supposed to be about what I had done wrong, started turning into a list of other things that had gone wrong to justify it. However much I tried, the order of the words swapped around (“because of X, I did Y”, “I did Y, because of X”), but the blame shifting continued.

So, I think I have now, finally, got to a point now where I can say, without justification, that my behaviour has been less than stellar this week. My main issue, was downloading an e reader onto my laptop. A fairly harmless crime you might think, but I’ve always been a binge reader and spending a few days obsessively reading a trilogy into the wee small hours has been pretty selfish with knock on effects for everyone. Yes, a bit of escapism is good the soul, especially when things are a bit tough,  but when the morning routine is being a problem for the whole family, struggling to drag yourself out of bed from lack of sleep as you were reading until 3am is not a good place to be in. When tempers are frayed and boundaries are being pushed, having constant background headaches from accumulative lack of sleep is distinctly not a good idea. When the housework is taking longer than usual (one of the issues we have is being without a working boiler at present, and the no hot water aspect of this is a real drag), sitting in bed reading a book rather than cracking on with it doesn’t help. And when you’re feeling frustrated at (fairly minor) communication issues with your partner, turning all your attention to a screen and blocking them out isn’t wise.

In short, I, A is for, have been rather selfish this week.

I’m quite pleased that I have got to the point of admitting that, of being able to write it without a how list of justifications why it’s not my fault. It feels like it has to be the first step to moving on. That I’m finally getting somewhere.

The next step is still proving a little elusive. OK, the “stop reading all the time” step is pretty obvious, but how to discuss this issue with  my other half is a little harder. I think I’m ready to say sorry and fess up, it feels like the right thing to do, but I’m wary that the answer might well be along the lines of “yes, you have been selfish” with a possible extra list of things I’ve done wrong that I’d omitted to mention. That has been known to happen in the past. And I’m pretty sure that will just make me cross and lash out, with my own list of failings for him in return, just like I have in the past.  The thing is, what I want is a “sorry, I’ve been less than stellar too” response of some description, but that’s not how it works is it. It’s not really saying sorry if what you actually want is to trade apologies. Sorry should come with no strings attached.

So, maybe, instead of saying sorry, I just need to say that I’m aware of my failings and that I’m going to try and change them. And maybe I need to say it to the whole family, which will make it less personal than a one on one with my other half.

I haven’t finished working out the details yet, but I do feel that I’m starting to get somewhere. And then maybe I can face that big lurking stack of guilt in my head, rather than shutting it away to lurk in my brain and stoke my anxiety in future.

 

Motorway traffic

My brother has moaned to me more than once about taking time off work. His problem, is that the work keeps coming at the same rate, so when he does go back to work, he has a mountainous backlog to catch up on. Which then cancels out the restfulness of having had a break.

I find a similar issue with trying to get “back to normal” after a period (months, nay years) of mental ill health / not being on top of things / general frazzledom. See, the Stuff I needed to do kept coming even when I wasn’t dealing with it. And now I have piles of post, opened and unopened, around the house. Some of it is junk mail, some of it is now out of date, some of it would’ve been good to deal with at the time and some of it still needs dealing with now. I was, for too long, more often than not in a state where I was hiding in bed in the morning for as long as possible and struggling to do more than get the kids to and from school, fed whilst trying to keep the washing up mountain at bay (which is no mean feat in itself).

I’m now managing those things a bit more reliably and with less effort and, dare I say it, dealing with new stuff reasonably well as it comes in and starting to do things like paint walls and clean kitchen cupboards.

Those piles of stuff, the undealt with paperwork and all it symbolises, still lurks, menancingly in the corners of my house, taunting me.

Dealing with that, is a whole extra level up, facing up to the past, the shame, the mess, the decisions (is this still important, where do I file it, how long do I keep that for). And if I do make a tentative start then life seems to throw more things at me, broken boiler anyone? Nasty cold that won’t go away and makes me tired after walking a mile?

I feel a bit like I’m in a car, a rather clapped out old car, on the slip road, trying to build up enough speed to join a busy motorway, trying to time my acceleration with an approaching gap in the traffic and hoping that I won’t have to brake at the last minute and end up stationary and stuck again.

December To Do List:

  • In Laws visit
  • Husband Ill
  • 3 days of consecutive kids concerts to go to
  • Brother and sister in law visit
  • Nativity play
  • Other Brother visits
  • Visit Brother in law, wife and new baby
  • Christmas

I thought I was doing so well, getting through the list. But last night, I found out that the last item has been altered. My sister in law has invited the in laws at the same time as we’re there. I’m not coping well with this news. I want to yell “I’ve done seeing inlaws, they’re crossed off the list, don’t add them back on! I find them really quite stressful to be around. They treat my husband and I like we’re 14, whisper in corners, and parent over us. My father in law has been known to tell my son off for talking as we’re all sat around for a meal and also for running on a beach. For running on a beach! I feel trapped into either quietly accepting their behaviour or making a scene and potentially causing a rift, I can’t seem to find the middle ground, so I constantly bite my toungue and a little bit more of my self respect dies.

Meeting my brother in law, his wife, and their new baby is something I was looking forward to, and we were trying to manage it carefully so that we don’t make life stressful to them, we’re travelling on day one, staying 2 nights, travelling back on day 3, and we’re staying at a nearby B&B, not with them. Doing this with my in laws there, disapproving, interfering, fills me with dread. I am completely baffled as to why my sister in law has invited them, I know she finds them stressful too. I’m confused, annoyed, and mostly panicked. I lay awake last night wondering if I could get away with pulling a sickie and how/if my husband would cope.

And of course Bitchface is having a field day, telling me to stop being pathetic and get over it. To pull myself together. And to stop moping about (I’m feeling pretty paralised and unable to get on with things).

I know I need to talk to my husband about this, but we don’t seem to be communicating well at the moment and I don’t know where to start. All the guilt pours in, my guilt and finding his family stressful, his guilt and his family being stressful, our combined helplessness in finding effective ways of dealing with it all, and one of us gets cross or upset.

Ransacking Brains is a form of torture

Tonight the boy wasn’t in the best of moods and at bedtime he broke down.

This afternoon was his class teachers afternoon “off” teaching to do his preparation and planning.  So The Boy gets taught by two different members of staff, this week it’s computing and RE (next week RE and French, the week after French and Computing on a 3 week cycle).

The computing isn’t so bad for him, but in RE they had to answer questions. He was too upset when talking to me  to make much sense but they seemed to be about belief and what people think and what he thinks (he even mentioned what his favourite colour is, which seems odd for RE). Anyway, he was upset even contemplating discussing them.  This kind of thing is HARD for him.

So, he didn’t answer the questions. I’m pretty sure he didn’t talk to the teacher about it either. After all, this is the teacher who when standing in for his teacher last year, wouldn’t let him join in a PE lesson because he wouldn’t change into shorts and a t shirt and go outside because he was worried he would be cold (I think this was about Easter time, so it wasn’t even an unreasonable worry).  On this occasion the teacher then sent him to do the work outside the classroom in the corridor whilst the class did something else. But the questions handn’t changed so he still didn’t do them. So he got told off and told he would have to do them another time, he was under the impression this was when the rest of the class would be doing something fun (or maybe I misunderstood here).

I sort of get it. He’s bright, he did no work, he looks lazy or naughty, the teacher is cross. And yet it’s so wrong. Because we know that he really struggles with this kind of thing. There was a review meeting at school last week, with us (his parents), his teacher, the SENCO and a specialist interaction and communication expert. We discussed his ASC diagnosis. We discussed how hard he’d found doing the simple questions the SENCO had asked a TA to go through with him to gather his viewpoint for input and how it’d taken 2 sessions and he’d described it as “brain ransacking”. And yet this teacher doesn’t seem to be part of that we that knows these things, she seems not to know, or not to care. Because she only teaches him for a couple of hours in every 3 weeks they either haven’t tried to get the message to her or she hasn’t listened.

To add insult to injury, he was upset because he followed his class teachers rule (that he always has to be at the front of the line, not sure why, this was the first I heard of it) when other members of staff were in charge and got told off for pushing in. This is inconsistent, he cannot cope.

To top it all, he remembered that he’d left his bear at school, which he feels is because he’s made to keep it in his tray now (to stop him messing around with it), but he thinks it was left on the table and he’s worried it will disappear like the books that are left out do once the cleaners have been around.

So, I had a really upset, tired child to deal with.

We had a discussion about school wide rules, that all the teachers enforce, and the variance in ways of doing things that individual teachers have. A long discussion. And them we talked about how hard he finds this. About how he has to practice (because secondary school in a couple of years, eek).  About how teachers are binary like babies (tell you off/cry when somethings not wrong, quiet when it’s ok) and how he can use this information and his science brain to work out the differences in rules. It took ages. He kept interrupting me and trying to drag the conversation off track, which was frustrating at times. But I appealed to his sense of humour and by the end he was much calmer.

I think he agreed to try. I definitely agreed to work on the other two issues. And so, this evening I sent an email to the SENCO, a nice, balanced, email politely requesting her assistance in figuring out a way of stopping the whole “I can’t answer questions about my feelings” situation escalating. I managed not to say that this teacher comes across as a cold heartless bitch who hates my child. (OK I don’t actually believe that, but she certainly doesn’t “get him”). I did say that I think that his problems in this area need to be addressed in the lesson plan.

And in the morning, I need to find time to get them all up (including my husband who’s not finding mornings so easy at the moment) and ready and get to school in time to talk to the teacher before registration about how to sort out the bear issue. Oh and walk the new dog, complete with all the endless arguments about what would be a fair turn at holding the lead that that entails. And get myself ready to go to a parenting course (aimed at parents of kids on the spectrum, the one I went to half of last year and was scuppered by my in laws). Which means I need to eat to. And get my bike out. And leave the dog for it’s longest period alone yet. And get them to catch up on practice as it’s their music lessons at school tomorrow.

So, the best prep is sleep. But I’m here, at 1am, trying to sort through my thoughts. Again.

It occurs to me that in some ways the best plan might be for me to walk the dog first thing, then deal with them. But that would be new and unexpected and decidedly UNFAIR as I’ve been using walking the dog  with me as an incentive to get them ready earlier.

Oh and my period has just started.

Hey ho, at least I’ll have something to talk about in my training tomorrow.

If I get there.

 

 

Overhearing the Noise

When this blog started, A was for Anxiety, which dominated my life. As time went on, A also became for the suspected Asperger’s/Autism of my son too. Yesterday we were told that he’s officially getting a diagnosis of Autism Spectrum Condition. I wrote about that on my sewing blog. I wrote there so that I so that I could share it far and wide with people I knew. (I know that theory that being open about mental health issues is a Good Thing and I salute those that do it (such as the inspirational Fiona) but boy am I not ready to share these snotty tearstained outpourings of emotion with people I know yet. No where near ready).  But I felt a little like I was betraying this blog, where I normally write about ASC related stuff.

So here, is the post I wrote, which I’m not reposting, cos I don’t want a trace to this blog from the other one (oh the duplicitous webs that we weave)…

Background Noise

Normally this is a sewing blog.  Occasionally I write about knitting or cooking or my cack handed attempts at woodwork instead, cos it’s my blog and I get to choose what I write about (it’s never crochet though, I don’t do crochet).  Just like you get to choose if you read it or not.

Today I choose to write about the phone call we just got, because I want to tell a lot of people without explaining the same things over and over again and it’s a bit long to fit in a facebook status.

The phone call was about my son, known here as The Boy (we’re all feeling our own ways towards how to parent in the shiny new age of everything being on the internet, not mentioning my kids names so they can’t be found by search engines is my current approach). The Boy will coincidentally, turn 10 years old tomorrow, double figures, a decade of parenting for us and all that malarky.

So, a nice man from the Autistic Spectrum Condition/Disorder Team (not sure which term they use, I prefer the former and will use ASC from hereon in) just rang to let us know that they have decided to give him an ASC diagnosis. And my immediate reaction was “Phew”. So here are some answers to a few questions I’m anticipating on encountering.

What is an Autistic Spectrum Condition?

In case you have been sitting under a rock recently, “Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them” (that’s from the National Autistic Society website and there’s loads more information there). Autistic people are often referred to as having a triad of impairments of difficulties with Social Communication, Social Interaction and Social Imagination.

Why not Asperger’s?

Because the rule book, otherwise known as DSM-V, has been redefined, so that there is technically no longer a diagnosis of Asperger’s Syndrome to give.  Obviously that doesn’t mean that all those people who were diagnosed with Asperger’s Syndrome now don’t have it any more, just that they have now come under the umbrella term of Autistic Spectrum Condition. If you want to know more about this then here is probably a good place to start.

The ASC team say that the term Asperger’s is “more or less applicable” to people that they diagnose as being on the spectrum (as they only meet people age 5 and over, and anyone with a more severe form of autism is likely to be picked up before then).  So if it helps you to think of him as having Asperger’s Syndrome, that’s probably a good place to start.

You poor thing

Err, no. See, The Boy is The Boy is The Boy and always will be despite what anyone says. He is no different today than he was yesterday. He is amazing and funny and infuriating and clever and loud and lovely and, well, not exactly average. He’s never been average. His brain is wired up a little differently. That’s been clear for a while, we just have a handle now on what sort of differently it’s wired. For somethings the way his brain works is a distinct advantage, and for other things it makes life trickier, but at the end of the day how his brain works is him and I wouldn’t want to change his brain because then he wouldn’t be him any more. So, no sympathy please, we (my husband, often referred to here as Long Suffering Husband or LSH and I) are happy about this diagnosis.

So why do you want a diagnosis then?

Good question, as I just said a diagnosis doesn’t change who he is. And there is no treatment for ASC, but then we don’t want a cure. What we want is understanding.

We, as parents, want to understand him better so that we can help him cope with the things he finds tricky and develop strategies that help him find them easier. And understanding him better also helps us not get so frustrated at times (and we do get frustrated at times).

And we want The  World to understand him better, which at the moment mainly means school. His current school is pretty good actually and have put things in place to help him already, but we’re hoping a piece of paper with a diagnosis on it will help us get our concerns heard and addressed when we negotiate the whole choosing and starting a secondary school thingy (as opposed to being dismissed as neurotic parents).

And also, we want him to understand himself. The Boy very much likes to know how things work, and he is aware that he is not average, so we hope that understanding why he finds some things tricky will help him, we know that other people on the spectrum have found it helpful.

Why did you want to label him?

We don’t see it as a label, we see it as a signpost, a way to help others understand him. We aren’t going to be making him t shirts and badges announcing this to the world, we’ll tell people when we think it’s appropriate, when it’ll help. And when he’s older, he can choose if he wants to tell people or not.

But I’ve met The Boy and he didn’t seem Autistic to me…

Did he make eye contact with you? Some people on the spectrum find that very hard, some are the opposite and keep making eye contact even when it’s not appropriate. The Boy makes eye contact sometimes and at other times finds it hard to look at our faces. Eye contact on isn’t enough to diagnose someone with ASC.

Did he speak to you? Lots? Not all people on the spectrum find it hard to talk to others. If you’re reading this, you’re probably adult, so ask yourself, is it usual for someone of his age to speak to you quite as much as he did? On the topics that he did?

It is true that there is no blood test for being on the spectrum and it is to some extent a subjective opinion about whether someone meets the criteria or not. But this diagnosis was made by a team of ASC experts, at the request of our GP, and they have considered information from us as parents, from his teachers, from a paedatrician, from an educational psycologist and from a communication and interaction specialist, as well as meeting with both us and  him. They have sifted the evidence, considered it as a group and feel they are “confident in this diagnosis” and have “no major reservations”.

So, you’re opinion isn’t going to change his diagnosis, but maybe his diagnosis could change your opinion of what it means for someone to be on the spectrum?

He’s very bright…

People often say this in relation to The Boy whenever the possibility of him being on the spectrum is discussed. Very lovely people who I’m sure mean well, however I’m never quite sure what their point is. Obviously, they mean he’s very bright, which I know. It’s often fairly obvious that he’s quite bright within 5 minutes of meeting him and, well, I’m his mum, so  yes, I’m aware that he’s bright. Being bright doesn’t stop you being on the Autistic Specturm. Being bright doesn’t place you on the Autistic Spectrum. The two things are completely independent of each other. I sometimes think it’s meant as a sort of consolation prize, like, oh, so he may be on the Autistic Sepectrum but at least he’s bright. The thing is, the two things are so intrinsically part of him, that one isn’t a consolation to the other, they are just who he is. So, if you say this, I shan’t be offended, but don’t expect a reaction much more than “mmmm”, unless you can elucidate a little.

I want to find out more…

Read A Beginners Guide to Autism Spectrum Disorders by Paul G Taylor. It’s excellent, it’s short, it’s a quick read and it really helps you get your head around how people on the spectrum think.  Or hear him talk briefly about what his book’s about here.

What next?

Same old same old really. Including the not so inspiring waiting around indeterminately for Virgin Care and the like whilst they do whatever it is they do whilst you’re on a waiting list (lose files?). Next up (hopefully) a look at his sensory issues (which is baffingly not included in an ASC assessment but is dealt with by a separate team) and we were also recommended today to consider having him assessed for ADHD (apparently a quicker process around here than the ASC assessment at least).

Apart from that, we will continue to look after both our kids as best we can, hoping that the number of times we get things right far outweighs those occasions that we get things wrong. And I will continue to make him weird and wonderful colourful “comfy”trousers because they help him cope a bit better. Like I said, same old same old, it’s just now we’ll have a piece of paper to help us along the way.