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 Some of it is junk mail, some of it is now out of date, some of it would’ve been good to deal with at the time and some of it still needs dealing with now.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.

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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.

Mystery pains

Whilst not a daily or probably even a weekly experience, it’s not uncommon for my son to get what we call Mystery Pains. They are a mystery, as as his parents, we can see no cause for them whatsoever. No redness, no lumps, no rashes, no symptoms discernible to us whatsoever. But they are definitely painful to him. And he seems to focus on them and make them worse, a bit like hyperventilating.

So, a couple of weeks ago we were woken by him coming into our bed practically screaming because of the unbearable itchiness that he felt that was so bad he clearly found it excruciatingly painful. We could see nothing.

It is really hard to know what to do at this point. When he was younger he suffered from small amounts of excema, and his sister still has flare ups, so we have a plethora of creams and lotions in the house designed to relieve itchy skin. Sometimes they work on Mystery Pains of an itch based type (which the Mystery Pains usually, but not invariably, are). However, often they provoke a reaction not dissimilar to putting vinegar on a cut (i.e. make things much worse). There seems to be no rhyme nor reason to which cream will do what when. So on that occasion we gave him antihistamine, because it is used for hayfever, insect bites and other such itchiness, so its appropriate, but mainly because it was the middle of the night and we know it also causes drowsiness.

This bedtime he had a flare up of Mystery Pain that had occurred earlier today and was described as a “sore bottom”. As it was the second incidence in a few hours, I thought there might be a physical underlying problem, so I gave him some Bepanthem, the magic cure all cream that I used when my daughter got bad nappy rash to apply himself.

Big mistake. It rendered him nearly hysterical with pain/discomfort and he could think of nothing else, which made it worse. I lay next to him, trying to talk calmly, to rub him, to encourage him to listen to the relaxation cd that was on and it was taking every ounce of my willpower not to get cross with him as he was so clearly winding himself up and making himself feel worse, but not deliberately so.

In the end I administered calpol, told him that it would take a few minutes to work and that if he was still in pain when the cd finished then he could come and find me. I went downstairs. My company did not seem to be helping him and I was afraid I was going to get cross if I stayed there much longer. I ate chocolate buttons and searched the internet for evidence/advice/insight of/about/for hyper sensitivity to pain in children with Autism Spectrum Conditions (the general opinion seems to be that people on the spectrum can be unaware of pain and not know they’re seriously ill (such as this post), but it is kind of mentioned that they can be feel sensory issues as pain too. I started writing this post. Then I got interrupted as he came downstairs.

Initially he seemed fine, then he remembered that he was in pain and started to verge on hysterical again. So I phoned a friend. For my sanity really (my husband is out so we can’t do our usual Tag Team parenting routing, where we swap over when we’re starting to get irritated). To help me not shout in frustration at him. And to distract him. We talked a bit, told her what we’d been doing in the past couple of weeks (lots), he seemed happy, then he remembered the pain (or maybe it came back, he did say it comes and goes, forgive me for being cynical but it’s half past 10 at night) and started looking like he was midlly hyperventilating again, so my friend suggested a heat pad, and I left him discussing if “because” was a suitable answer to a question (hint, he doesn’t think so) with her whilst I heated a wheat pad up and then I have given him antihistimine and tucked him back in bed with the heat pads and put the relaxation cd back on. Fingers crossed.

And it’s half past 10 and I haven’t even washed up after dinner.

I’m going to phone my friend again now and have a proper conversation. Assuming I don’t get interrupted again. If anyone has any experience of hypersensitivity to pain, itchiness, sensory issues, mystery pains, or knows of any resources or actual helpful techniques, I’d be interested to know. But mainly I’m putting this out there so that if someone else does a desperate search for similar reasons, that they might find out they’re not alone. Good luck to you. It will pass. Keep breathing.

 

 

Summer writing challenge update

So, we’re a couple of weeks in to the summer holidays and 10 days of that were spent camping. We haven’t managed the writing challenge every day, but I think we’ve managed it about 2/3rds of the time (I’m not counting) which is pretty good going and they’re still interested in it (albeit a little too focused on “prizes” for my liking). I’m starting to learn what works best for us.  For instance, they both want lots of help/attention all the time and the slightest thing can distract them (which I knew in theory but not the full extent of, I cannot actually count on being able to do anything myself whilst they’re writing). Also, if I’m really specific it doesn’t help, e.g. if I ask  them to write at least 5 sentences, they write exactly 5 sentences and if I specify a subject for each sentence I get really stilted sentences.

I’m trying to train them that the space under the instructions they can use to make notes, so if they’re stuck I have a chat with them and then write down some phrases that came up in conversation there, and maybe draw a picture with them, so they have something to refer back to.

I keep reminding myself not to critique spelling, punctuation, grammar, ideas, the point is not what they write, but to write, and to learn to write more easily, to chip away at the idea that writing is always hard and boring. School spends quite enough time working on those skills, this is supposed to be different. So it amuses me that my daughter starts each challenge by writing her “WALT” (we are learning to), just like at school, e.g. “WALT write a packing list”, but I let her do it that way without comment as that’s what’s comfortable for her.  I guess ultimately I want them to loose the idea that there’s a “right” way to write (although school will tell them otherwise) as I think that idea, that there is a right way, sets them up to think they’re failing and gets them stuck.

The books are starting to fill up and I think it will be really good for them to look back on all they’ve achieved over the summer. We have shown things to interested adults to and they’re proud of things they’ve done. I was pleased that the free story that they wrote, whilst taking more time (two sittings each), was the best bit of writing (in my opinion anyway). It was nice that they could take time, and go back to it later, even though that wasn’t the plan (writing on a camp site with other kids around playing is hard!), without having to move on through the curriculum and get to the next piece of work. I’d like to do more of the free story stuff, so today I bought some story cubes to see how they help. I’m hoping to tread the fine line between the instructions being too specific (and stilted) and too free (so they don’t know where to start).  I’ve printed off a couple of challenges for tomorrow and Sunday (when we might be camping).

Today’s Challenge: Discover story cubes

Before you start:

  • Go out of the front door, run to one end of the street (top or bottom, you choose) and then walk back.
  • Glue this sheet onto the next free left hand page in your book
  • Leave a space for a title on the next page
  • Underneath the space draw three boxes in a line
  • Without looking, take a die from the story cube box, roll it and draw the picture in the first box.
  • Then take another cube without looking, roll it and draw the picture in the second box.
  • Finally, take another cube without looking, roll it and draw the picture in the last box.

Then write down a story, as long as you like (at least one sentence) that links your three images. Then write a title above.

When you’ve finished:

Today’s Challenge: Story cube characters

Before you start:

  • Crouch down as small as you can and start to hum quietly, gradually uncurl and stand up as tall as you go, making your humming go louder as you grow bigger, then slowly go back again with your humming getting quieter as you get smaller.
  • Glue this sheet onto the next free left hand page in your book
  • Draw three boxes on the next page as before.
  • Take three dice without looking and roll them, then draw the images in any order you want in your boxes.

Use the images to think of a character/person/heroine/villain and write down a description of them.

When you’ve finished:

I’ve no idea where the physical activity ideas came from, I’m just making them up as  I go along. I’m trying lots of different things so hopefully they can work out what works for them (and I can feed back to the teacher if we find a good tactic). I’ve already trained them to glue the instructions in, they don’t need telling that now.

So, so far, it’s a bit early to say, but I think it’s going well. Phew.