Aaargh, sympathy.

It’s not maybe the unpalatable truth that I’ve been skirting around thinking about all weekend, but I have realised this morning that I suck at sympathy. I really really suck at it. Not in being sympathetic or giving out sympathy, I think I do pretty well at that. But receiving. I run a mile from receiving sympathy.

The trigger for this revelation?  I got a card in the post. It’s in reply to the card I sent last week when I was trying momentarily to “man” up to my problems and apologise to someone for letting them down and then going all radio silence (my usual modus oporandi).  I put a note in, this little gem, in the card.  So, of course I’m going to get a reply of some sort, unless the person I sent the card to is completely heartless, which they aren’t.

I don’t know what the card says though. I have opened it. I peeked in, upside down, from the back (yes, I am the kind of person who literally hides behind the sofa when Dr Who is on) and confirmed that it is from who I think it is. But I cannot bring myself to read it.

I’m trying to process why. Why is it so hard to hear someone being nice to me.  I keep coming back to how it reminds me of the thing I hated most about being pregnant. It was n’t the tiredness, or the uncomfortableness sleeping. I didn’t really get morning sickness (sorry), I didn’t mind, giving up alcohol, kicking my lame part time smoking habit to the touchline, or being the size of a house. I minded the intrusion. The fact that everyone knew I was pregnant (well, after a certain point) and thought that they could talk to me about this, like they knew me.  I wasn’t ashamed of them knowing I was pregnant, but that didn’t mean I wanted people I barely knew to discuss it with me. The fact that it took over other peoples view of me, reducing me to a mother-to-be and erasing all other parts of my personality. The fact that I was expected to be excited about it and want to talk about it at all times. Sheez, I mean I was excited, just not on a constant state of excitement for nine months solid, that would be exhausting and make me more than a bit unhinged.

So what do I think will be in this card that makes me so reluctant to read it? I’m pretty sure they’re not going to be horrible, so I’m not catastrophising this. But I feel raw and exposed just thinking about reading it. The feels man, I can’t cope with all the feels. It’s too much. Too much fuss as my mum would say. She hates people fussing over her. I’m thinking maybe this is a sensory overload, aspie, type thing going on here. Which is going to lead me down the sidetrack of where to place myself on the spectrum.

But I wonder if also this is part of the problem in talking about all the shit that is going on with other people. Because I have been spectacularly rubbish at talking about all the things I probably need to talk about with other people. I don’t really feel able to tell anyone because I can’t cope with how the conversation will go. Hence this blog. Sometimes I can talk to my husband, but there are complications with that, especially when he’s been ill too.

Which brings me to, I dunno, another side track, a branchline, a conclusion, an action, whatever. I have been thinking about trying to find a counsellor/therapist again. One in the goldilocks zone. Not too Lovely But Just Lets Me Talk About The First Thing On My Mind And This Feels Like There’s No Direction, like the one I paid for. And not too CBT By Numbers Not Listening To My Answers Cos She’s Already Decided What I Will Be Saying, like the one I got through the NHS Anxiety service. Trouble is, I have no idea how to find such a person. So I need to add it to my to do list. Which is in a state of disaray as I have been in full on life avoidance radio silence mode for a while and I’m not sure I can even go there right now.

So. Well.  I have brain dumped. And now I will read another chapter of a book (and that is a story for another day). And then I will sort the washing out. And maybe, while I do all that, my subconsious will work it all out for me.


What do you do when your child just doesn’t get ready in the morning. They don’t scream, or shout, they show no sign of concern about being late, they just ignore you and read a book?

What do you do when your child, finally nearly ready, oh so late,  sits there looking at their shoes and says that putting them on makes them feel cold?

What do you write in the reason column in the “not that late book, that only goes up to a certain time, can I ask you to write in this one” late book, for why your child is at school an hour late?

What do you do when he then sits on your knee in the office, snuggling, holding you, not speaking, not moving, while school life goes on around you?

What is the right thing to do?


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


Only 2 days of school left before the summer holidays and I’ve been doing more planning for the Summer Writing Challenge, to try and get both my kids to do a little writing everyday, structured in an ASC friendly way (with a little help from my I hate to write book), to hopefully help start to break down the blockage that my son seems to have between his brain and his hand.

I have told the kids a little about the challenge (it’s not my natural style to forewarn, but I’m getting used to not springing surprises on people) and after some rather fraught negotiations they now have a notebook each with their name on, waiting in a box with a couple of prizes that I put together (nothing like a bit of bribery to get people motivated). I don’t want to over organise things, as I need to be flexible and see what works and build upon that, after all, I thought that a written version of the word association game was the easiest thing possible and I was proved wrong. However, we are going away on the second day of the holidays, so I also want to be prepared, and with that in mind I have challenges for each day of the holidays (plus a few spare for when we get back). I thought I’d share them here, as if it helps one person with a similar problem, it’s worth it. (And I’ve already typed them up as I intend to print out two copies of each).

Day 1: First day of the holidays, when we’ll be spending a lot of time getting ready to go.

Today’s Challenge:     Write a packing list for our holiday.

Before you start:

  • Check your desk and chair are clear and free of distractions.
  • Glue this sheet onto the first left hand page in your book

Firstly:        Write a title on the right hand page and underline it.


  • Write a list of the things that you need to take on holiday.
  • Don’t include family things like tents and cooking things.
  • Do group things together by theme, for example mum’s list might include (as she has family things are on her list)
    • Cooking things: 2 saucepans, chopping board, knife
    • Food: Breakfast cereal, 3 tins of baked beans, teabags, hot chocolate
  • If you realise later you’ve left something out, it’s ok to go back and squeeze it in, or  you might want to have a “things I nearly forgot” theme at the end

When you’ve finished:    We will go to the shop and buy and icecream to eat, before reading through the lists and starting packing.

Day 2: A travel day, we’ll be setting off in our van for the first destination.

Today’s Challenge:     Describe [our camper van] to someone who’s never seen her.

Before you start:

  • Check your writing space is ready
  • Glue this sheet onto the next free left hand page in your book
  • Do 5 star jumps.

Firstly:        Write a title on the right hand page and underline it.


  • Describe 5 things about [our camper van].
  • Write one or two sentences about each thing you choose.
  • Don’t forget to to start by saying what kind of thing [our camper van] is!

When you’ve finished:        You can watch an episode of Dangermouse on iplayer.

Day 3: We’ll be at a folk festival and see lots of performances, morris dancing, clog, rapper and who knows what else. This days challenge is inspired by a comment from a friend about trying immersive writing “in the field” as she reckoned it would stop him worrying about being perfect as he’d be too busy.

Today’s Challenge:     Take notes on performances

Before you start:

  • Glue this sheet onto the next free left hand page in your book
  • Pack your book and something to write with into your bag

Then when we stop to watch some dancing:

  • Write notes about what you’re seeing
  • Describe the shapes, sounds, colours, movement, how it makes you feel
  • As you’re taking notes you don’t have to write sentences, you can just write a short phrase or even a couple of words for each thing
  • See if you can fill the right hand page

Later:        We will read our notes to each other and see how they compare.

Day 4: The second day at the festival.

Today’s Challenge:     Describe a folk festival to someone who’s never been to one

Before you start:

  • Find somewhere comfortable to write.
  • Glue this sheet onto the next free left hand page in your book
  • Stretch your hands as far open as they’ll go then squeeze them shut 5 times.

Firstly:        Write a title on the right hand page and underline it.


  • Describe 5 things about a folk festival.
  • Write one or two sentences about each thing you choose.

When you’ve finished:       [I’m leaving this blank to fill in nearer the time!]

Day 5: Travelling from the festival to our second destination, camping with friends.

Today’s Challenge:     Describe a mini beast

Before you start:

  • Glue this sheet onto the next free left hand page in your book
  • Find a minibeast on the campsite and observe what it looks like, how it moves, what it’s doing, where it is

Firstly:        Write a title on the right hand page and underline it.

Then write one or two sentences about each of the following things:

  • What mini beast you saw
  • Where you found it
  • What it looks like
  • What it was doing
  • How it moves

When you’ve finished:

Days 6-9 in a flexible order, one requires me to buy postcards first.

Today’s Challenge:  Write a journal (diary) entry about today

Before you start:

  • Find a good place to write
  • Glue this sheet onto the next free left hand page in your book
  • Take 5 deep slow breaths in and out

Firstly:        Write today’s date.

Then write at least 5 sentences about your day. Include

  • Where you went
  • Who you were with
  • What you did
  • Something you saw
  • How you felt

When you’ve finished:

Today’s Challenge:     Describe the picture on a postcard

Before you start:

  • Glue this sheet onto the next free left hand page in your book
  • Choose a postcard
  • Do 5 hand stretch and squeezes followed by 5 deep breaths

Firstly:        Write a title on the right hand page and underline it.

Then describe the scene on the postcard. Start with saying where the picture is. Then write at least 4 sentances, each one should describe a different thing in the picture.

When you’ve finished:
Today’s Challenge:     Write a short story

Before you start:

  • Glue this sheet onto the next free left hand page in your book
  • Find a good place to write
  • Do 5 star jumps and 5 hand stretches

Firstly:        Leave a space for your title.

Then write a short paragraph (2 or 3 sentances is fine) with a story opening introducing the characters.

Then a second short paragraph introducing a problem.

Finally a short paragraph describing the resolution.

When the story is finished, then choose a title and write it in the space you’ve left.

When you’ve finished:

Today’s Challenge:     Write a silly song about camping

Before you start:

  • Glue this sheet onto the next free left hand page in your book
  • Find a good place to write
  • Do 5 star jumps and 5 deep slow breaths

Firstly:    Write your title on the right hand page and underline it.

Then write your song underneath. It needs to have a chorus (that gets repeated) and at least two verses, each having 4 lines.

When you’ve finished:

Day 10, another travel day. We’ll just have spent several days camping with other Quakers, so…

Today’s Challenge: Describe what happens in Meeting For Worship to someone who’s never been.

For each of these words, write a sentence about Meeting for Worship:

  • Where
  • Who
  • How
  • Why
  • What

When you’ve finished:

Day 11, travelling the rest of the way back home after our stopover.

Today’s Challenge: Write a 6 word story

A famous example is “For Sale, Baby Shoes, Never Worn”

When you’ve finished:


So, there we go, there’s my prep. Now it only remains to put it into action in a nice low key way that doesn’t cause tantrums.

Work in progress

I don’t have my new copy of the book yet, but I did look at the handout sheet on their website. Thinking of my idea to include Denis the Menace I have come up with these.

Today’s Challenge: Pretend you are Denis and write a note to pass to Minnie the Minx in class about a prank you want to play.

Your sentences need to include these details in your note: Who you want to play the prank on. What the prank is. Where you are going to do it. When you are going to do it. What you need Minnie to do to help.

You may use one labelled diagram in your note if you want.

When you have finished mum will give you one balloon for each proper sentence that you wrote that can fill with water from the outside tap (no water balloons in the house).


Today’s Challenge: You have been kept in detention by the Headmaster. Write a note for Gnasher to smuggle out to your friends.

Write at least one sentence about each of these: Why you were given detention. What you’re having to do in detention. How it makes you feel. What you would like your friends to do now.

When you have finished Mum will help you set up a target in the garden for catapult practice.



The Writing Problem, continued

So, I went on a lot yesterday about the problems that the Boy has with writing. I feel that I should say that for him it isn’t a problem, at least, left to his own devices it wouldn’t be. He prefers not to write, but if the impulse comes from him, he will write. A note for Daddy whose getting home after he’s in bed, a spontaneous postcard in reply to one he received, a list of things he wants to pack.

The issues start when the outside world gets in and interferes, trying to get him to write when he’d rather not. And almost always that’s school.

So, I suppose one solution would be to take away the issue, to stop asking him to write. Leave him to his own devices. Maybe he’d get to a point where something motivated him to write more and he’d start, or maybe he’d just cope without doing much writing.

However, that’s not going to happen whilst he’s in school, because the older you get, the more writing based school is. Writing down notes in lessons, writing answers to questions, writing essays, writing answers in exams. So that option would be pretty radical and involve taking him out of school. And if he didn’t develop his writing independently, it would mean no qualifications, as to get them you need to take exams which re pretty much all writing based. So I’m not sure how that would prepare him for adult life, how he would fit in with the rest of society (actually, many jobs don’t require so much writing as school, but getting a job without the qualifications could be tricky).

So, I’m left with figuring out a way to help him with his writing, to help reduce his stress.

I guess I need a two pronged approach. One thing I need to do is all I can in my power to get the school to support him, after all, they’re the experts here (as well as in some ways the source of the problem). My progress so far is an email drafted to the SENCO (as I realised that I’m not actually sure after our last meeting what their plan is at present), that needs proof reading as it was written after midnight. Also I have reordered the  I Hate to Write book.  And I plan to try and find time to talk to his teacher this week (ha ha, she wasn’t in today for a start). But with less than 3 weeks left until the summer holidays my main focus will be on getting on top of this in September and building up a relationship with his new teacher.

So my second approach needs to be about how I can help him at home, without adding to the stress and anxiety of every day life (both his and mine). I don’t want to turn be a household where hours of extra work is done after school. A large part of our problems are that school tires him out, so anything done at home needs to be light touch, quick, easy, stress free. Which means obvious place to start seems to be the summer holidays, when we have less school.

So, I have a plan of sorts, for a Summer Writing Challenge (the local libraries do a Summer Reading Challenge but in our household it is not a challenge to read, we’ll still probably take part though). I have bought them both a nice notebook each that I’m going to label “X’s Summer Writing Challenge” (after all, these things need to be fair so one each) and I’m going to try and get them to write a little in it each day. Again that all elusive balance is the key. My idea is little and often, to build up connections between his brain and the page, so that when he’s back at school it won’t be so alien to start writing something down. The quality/amount/type of thing he writes isn’t my goal, school can work on that, they know what they’re doing. I just want to try and build up his ability to get started, to try and chip away at whatever that barrier is that seems to stop him writing. So, no small task I’ve set myself then.

I have had a few ideas of what I can ask them to write, to start with at least I want to give them a challenge each day, with the idea to start small and build it up. And a mix of things to write about, facts, instructions, recounting events, stories maybe. So I wrote a long list of ideas, such as a packing list for going away, the first thing you remember saying this morning, the first thing someone said to you, what you think the cat would tell a visitor if they could talk, directions to Grandma’s house, one thing you learned today. I plan to go through the “I hate to write” book when it comes too. I think it has longer, more structured ideas in, so maybe I’ll try one of those every few days, with shorter bits of writing in between (I want them to still enjoy their summer holidays!)

In the mean time, I had an idea of some fun games to play that don’t even seem like writing, that we could do before the end of term.

The first was just a written version of word association. This was the easiest thing I could imagine. You just look at what the other person wrote, and then write down the first word that comes into your head. Just one word at a time. There is not right or wrong answer. There’s plenty of opportunity to be obscure, silly, pedantic (all things he loves). I congratulated myself on my good idea.

Yup, you guessed it, turns out it wasn’t that simple after all. I told him I wanted to play a game and wrote “Red” on a piece of paper, passed him the paper and pen and asked him to write the first word he thought of under mine. He wrote “Red”. Ok, not what I expected, but I decided not to make a big deal out of it, rather just continue hoping he’d get into the swing of things. So I wrote “Two” (as the word red was written twice) and explained that it was supposed to be a different word. So he wrote “Too” (which he knows full well has a different meaning but sounds the same, there’s nothing wrong with his spelling). Again, I just continued without making a fuss and wrote “many”, which prompted “Manny”, who he explained was a character in a  book, then we continued “nanny”, “granie”(sic), “square” – that prompted questions from him and I had to explain that a granny square was something you make with crochet. Then he drew a triangle. I asked him to write triangle instead, he told me he didn’t know how to (he was starting to get upset at this point), so I said just try and start it, and he wrote it down just fine, so I congratulated him on his spelling and wrote “pyramid”. And there ended our game, with him upset and cross and complaining that I was forcing him to do it (I gently pointed out I wasn’t and now that he’d told me he wanted to stop I wasn’t going to ask him to write anything else) and that when he see’s a word like “red” written down, all he can think of is the word “red” so this is really hard for him.

I was shocked, I know his brain works differently from mine but it never occurred to me that he would find this game hard, I chose it precisely because I couldn’t imagine him finding it hard. Granted he was a bit under the weather at the time, but still.

However, I have tried something else, something that I thought would be harder, but turns out it’s easier. Group story writing, one word at a time, no commenting out loud, you just write a word and pass it on to the next person. We did it as a family, with me and my husband starting.

Once there was seven horses, growling in the pink destoyer spaceships. Soon seven horses with riders found idiocy and called “wooua” and some friends shouted “war-time” very quietly but differently…

Ok, it’s not going to win any prizes, but all 4 of us did it together, there were no arguments, it involved turn taking and we were writing without argument (albeit one word at a time). The next night we managed

A big strong monster with fluffy teddy-bears hugged under his stupid ears and waving he loved a bananna who drove a submarine quickly. (It’s yellow). Well one day they found some idiotic beans with spotty purple skins which loved inhabited submarines. They ate them and then suddenly became idiotically happy “wuerho” said the farting and burping, singing and dancing banana who had to go to the loo. Son he felt much calmer so went to the moon where he ate a lot of cheese.

This time people seemed to want to write more than one word, so we changed it so that in the second sentence you could write two words each, three in the third, etc. Also, we got interrupted by the next door neighbour calling round to ask something and she got involved and I lost track of things. I think that last sentence is all his.

I’m still feeling my way here, I’m no educational expert. I’m not quite sure what the point of this game is, except to somehow make writing fun and take some of the pressure off, as you can’t make a perfect sentence in a group. I noticed that he paused more when he had to start the second sentance (he ended up writing (it’s yellow)) rather than when he was continuing something. So maybe I’m on to something?

Now, to keep this up. To remember to play it some more. And try and work out a version where you write a sentance each. Or even a paragraph. Maybe we could try an entirely written conversation (that might help with interrupting too). Or having beginnings of sentences to finish. And I wonder if there’s a way of bringing Dennis The Menace into it. Hmmm….




Writing – the problem

The Boy does not like writing. In particular his teachers struggle to get him to write. There is no problem with his reading, which is excellent (including his comprehension). There is no problem in his understanding and there is certainly no problem in getting him to talk on a subject, he is very expressive vocally (in fact the problem is getting him to shut up!). However, getting him to write is another matter entirely.

In year 1 (age 6) it his writing was painfully slow and the slightest mistake would make him rub out the whole sentence. His wrote no more than a few words in an assessed piece of writing, a story because he could tell that “biskit” (biscuit) was not a correct spelling so would go no further. His teacher was not allowed to help him (as it was going to be assessed) and the fact that the powers that be think it perfectly acceptable for a 6 year old to write biskit made no difference, he was reading a lot and he knew it was wrong, so he couldn’t proceed until it was fixed, end of story.

In year 2 (age 7) they taught him joined up handwriting. I was so annoyed and frustrated by this, it was the worse thing for him. He focused even more on how his writing looked, which slowed him further and exacerbating his trouble getting any kind of “flow” going in his writing. He reminded me of a medieval monk, huddled over his manuscript, making painstakingly slow progress. The fact that his teacher thought he only needed to practice his writing in his handwriting class and not in his literacy class was frankly irrelevant, to the Boy, if something is important then it’s important, it’s not just important on Thursday afternoon but not on Friday morning. It was around this time that he told me that he didn’t understand why school kept trying to get him to write down things that he already knew when he could use the time better learning new things (after all, school is where you go to learn things right?).  It was also one of his year 2 teachers who first suggested he might have Aspergers and thus started the process of trying to get a diagnosis and lots of reading on my part. He did see a educational psychologist, who suggested that writing tasks were “chunked up” into managable sized pieces for him but I have no idea what was implemented of this at the time as it was nearly at the end of the school year and I simply couldn’t get them to write anything in a plan form.

Year 3 saw a move to the junior school across the road. Despite reassurances from the infant school that they would do lots of things to help him with his transition (which for them seemed to mean familiarisation with the new school building), it soon became apparent that his new teacher was unprepared for him (I’m still cross that no plan was in place to get handed over to her) and my fears were realised, fears that the gap between him and his peers would widen as expectation rose (which had been my worry all along, misinterpreted by the SENCO as fears about the change of schools). I remember his class teacher asking me how I got him to do anything. I said something at the time, but upon later reflection realised that the options are a) get him on side by reasoning, b) decide to give up or postpone the task and c) stand over him repeating what you want him to do over and over again – which works (for simple things anyway) but at a huge cost to both of you in terms of stress and the meltdown will probably follow.

In writing terms, I remember vividly early on in the year collecting him one day to come home for lunch (as he was doing once a week at his request at the time) and having to go and find him in his classroom. The teacher explained that he had written basically nothing all morning in literacy (possibly 3 words or so, I can’t remember exactly, it wouldn’t surprise me if he wasn’t kept in at break time too) and so she asked me to take the work home with me and get him to write at lunchtime. By the time we finished talking and I had signed him out I had 45 mins to get him home, feed him, get him to do some work and get him back to school (only a 5 min walk each way but still!). I did get him to do some writing, but I basically use method c and the cost was enormous, he was in tears and I felt awful. When I got back to school I showed the teacher the 2 lines I’d got out of him and she was disappointed! I pointed out the time restraints, I should’ve pointed out as well that she was a professional and I wasn’t and she’d had him all morning and got far less out of him. After I got home again I felt awful and after that I told them that I would not be doing writing with him at lunchtimes.

At one point I had a circular conversation from the teacher that went along the lines of, he doesn’t need help with his writing because he’s in the top group, but he doesn’t do any writing unless he’s helped, however when he’s helped his writing standard is very good, so therefore he doesn’t need any help.

At some point during year 3 I remembered the Ed Psych report, dug out my copy, photocopied it and gave it to the new SENCO, I don’t think she’d seen it. Anyway, he managed to train his year 3 teacher up a little and she used to agree with him how much writing he was going to do and write in the margins, one table point if you get to here, one house point if you get to here etc. It was also noted that he finds the more factual pieces of work easier and the more free form creative stuff harder.

We toyed with the idea of using speech recognition software to let him dictate, but it would mean taking our tablet to school (which I’m fine with, it’s just complicated) and I worked out it only works when connected to the wifi (which I’m guessing could be an issue at school, as if he had an internet enabled tablet he’d be quite easily distracted) and when we tried it at home he got frustrated that it didn’t understand him properly and also distracted by the software, so that one kind of fizzled out. They also had him dictate to a teaching assistant some of the time.

At the start of year 4 (age 9) he had a young teacher who liked him and seemed to think he was doing fine, would sit to do his writing, would do an ok amount, was now writing his own titles and objectives. Over the summer I’d bought I Hate To Write, but it seemed more appropriate for teachers than parents, so I lent it to her. I have no idea if she looked at it or used it, I never got it back when she left the school either. (I also bought this book, but it seems to be for secondary kids, so it’s sitting on my shelf a while) Then we had the nose dive over Christmas, followed by moving classrooms due to a rebuild and the teacher leaving at Easter and I have no idea what her thoughts were on his writing.

Oh and it was early on in year 4 that he came home with some homework that he really struggled with. It was clearly meant to be fun and engaging and there were several options of things to write about to choose from. That was our first problem (he struggles with choices). I sat there trying to talk through the options with them. Many of them were dismissed (for instance, one about magic, because it’s “not real”). Eventually he conceded he would consider one option if it was altered. But that was a problem (for him) because then he wasn’t doing the homework that had been set. I told him that his teacher would surely prefer some writing to none, and I manage to get him to talk through a plan which I sketched down in as similar manner to the one they used at school as I could. So far, half an hour of intense one on one parent input had produced nothing written by him whatsoever. So I tried to get him to write down a first sentence. I managed, but we fell into good old method c again and he was in tears by the end (and I was nearly too). 45 minutes and a lot of stress for 1 sentence of a piece of homework that was supposed to take 10 minutes. The teacher agreed with me that wasn’t the idea when we explained and we eased off on the homework after that (which was only once a week anyway).

Now we have the second of the temporary teachers since the original year 4 teacher left at Easter. This one already knew him and I have a lot of respect for her. She is no nonsense, fairly strict, but fair, understands what he has difficulties with, doesn’t make him stressed, but does have high expectations of him. We had a review meeting last week, her me and the SENCO, and it was clear that she doesn’t think his writing is up to scratch, he hasn’t completed enough of any of his assessed pieces of work for them to be assess-able. She puts him at Secure Level Three (whatever that means) in maths, reading and science, but still Developing Level Two in literacy, because of his writing (reading wise he’s fine). She talked about him avoiding writing, coming up with excuses, talking to the group she’s helping instead of doing his own work.

So now I’m not sure what to believe. Well, I kind of am, I know that his writing lags behind the other areas of the curriculum, it has done for the 4 years he’s been expected to write much more than his name at school. That is clear. It’s also clear that there is a problem there. There seems to be some sort of block in his brain between the ideas and the page. He can think things, he can talk about them, but writing them down is clearly very hard and stressful for him. Part of the problem is motivation, he just simply doesn’t see the point of writing something down to prove that he knows it, he knows he knows it. Part of the problem is not knowing where to start, so he avoids getting started, so he’s not started, etc. Another part seems to be that he sets the standard so very high. I’m pretty sure half the time at school the teacher doesn’t care what kind of boring “the cat sat on the hat” type sentence they write, they just want them to write something that meets today’s learning objective, be it correct use of speech marks or subjunctive clauses or whatever. But he simply cannot write just any old thing, if he’s going to write something down then it has to be a perfectly formed, interesting sentence, of a standard a booker award winning novelist might write. Which of course ups the pressure and makes the whole thing more complicated, which makes it harder to start. And then there’s the contrary (oppositional defiance was mentioned last week) part of him that simply will not use an idea suggested to him by someone else. Making it very hard to help him, as when you try and narrow things down you’re actually crossing things off the potentials list.

But what about the discrpancy between the teacher at the beginning of the year who was happy with his writing and the teacher now, who isn’t. Have his standards dropped? Does he write less for this teacher? Or are their expectations different? If so, who do I believe?

I must admit I’m quite worried at the moment about how his writing is going to impact on him at secondary school, where there is a lot of writing expected across the curriculum.  Currently, I cannot envisage him getting a grade C at GCSE English, which is needed for pretty much anything. I’m pretty sure he’d be alright in maths and probably science, but I’m less convinced I can see him managing essay questions for history or geography say.

I’m frustrated at the way our school system is set up, where you’re either “bright” or “struggling” (my words, not theirs), and the help is focused at getting the struggling kids up to scratch. The system just doesn’t seem to cope with a bright kid who needs help in one area.

I’m also unclear what their current strategy is to help him. Or what it should be. Because I’m not an education specialist. I also don’t know what I can do to help that might actually work and not just make the two of us both more stressed.

Anyway, that doesn’t stop me thinking. I might not be an expert in education but I am a world expert in him. I’ve had a couple of small ideas, and that was what this post was going to be about, but I seem to need to thresh out the extent of the problem tonight, so I shall write more about my ideas soon.


Post assessment limbo

Well, the boy has been assessed. More precisely he’s had an Autism Diagnostic Observation Schedule (ADOS) whilst someone else went through the 3di assessment tool with us.

This all happened despite the fact that they didn’t have us down on their list of people to see today. Yup, we were sent a letter telling us to be there at 12.30 today and the people there had a completely different persons name on their list for the 12.30 slot. But that person  didn’t turn up, so after a short wait while the staff had a conflab about the situation, they saw us instead.

I must say the two people I met (I didn’t see the third who was taking notes in the ADOS) seemed very nice.

The 2 year wait, the having to chase to get them to find the letter from the paedatrician recommending us for the waiting list, the lack of info to talk through with the boy about what was happening as promised, indeed suggested by them (despite me having chased both by phone and email), the stress I’ve been feeling for the past few weeks, the stress the boy had last night (which rendered him speechless) and the heartsinking moment when I thought we were going to be sent back home and we’d have to go through more bureaucracy to rearrange and then go this all again – all  those things I could well and truly have done without.

So now we wait. Wait for them to take his case to panel. Which is likely to take longer than the usual 2 weeks as they didn’t have any of his files prepared because they weren’t expecting them. So we wait 3-4 weeks until they discuss it at a panel meeting. Some unspecified period of time after that, they will contact us, either because they think more tests are needed, or to arrange a meeting to discuss their findings.

And in the meantime we kick our heels some more, wait to find out what they’ve decided, go over the questions they asked in our head, wondering if we gave accurate and informative enough answers, trying to find out what happened in his ADOS, wondering if he has accumulated enough ticks in enough columns to get a piece of paper.


The tantrum effect

This is not the post I was going to write today. But I was overtaken by events.

I tried to collect my child from school. Hands up, I was running a bit late and had for once picked him up first so was trying to get him ready so we could go get his sister.

He was not playing ball (excuse the analogy). Things were not going well and before long he was cross.

I must admit, so was I when he threw his bag at me so the contents I’d just struggled to get in it (whilst it was on his back and he was not staying still) fell out.

I walked out of the classroom before I got really angry and told the teacher (on the steps outside) I would get his sister first.

She sent me back in as she had a meeting to go to.

I can see her point, but honestly, at that point, ignoring was what he needed. A little help would have been appreciated (after all, I get him to school, surely they can help him leave). Would it really have been the end of the world if I’d had to get him from the office as the teacher was busy?

Anyway, I went back in and got him out and he shouted, yelled, screamed at me all the way across the road to his sisters class, all the time I talked to his sisters teacher and his sister (trying to give her attention instead of him), all the way to the mobile shop and all the way inside. I mostly ignored him. I did stop him hitting me (unusual), kicking a drainpipe, kicking the bike shelter, yanking things on the mobile shop. I did acknowledge a couple of times as he was poking me “I know you’re there, I’m ignoring you right now”. I removed him from the shop van a couple of times as his behaviour wasn’t appropriate and explained he wouldn’t get to choose a snack if he couldn’t behave.

I don’t know if this was the “right” way to deal with him. I haven’t had any training*. I just know that engaging with him in any way makes him worse, ignoring him makes him worse, but I stay calmer if I ignore him and surely that’s better.

I think it lasted about 15 minutes. Needless to say, at some point, he flipped out of it and has been fine since. (Well, not as calm as I might like, story of my day, but not actually cross anymore). I, on the other hand, am still suffering from the after effects.

mood over time graph

mood over time graph

I tried to draw a graph, to show how his tantrum effects us differently. The rise from calm to meltdown is fast for him, and so, with a few wobbles, is the descent. For me, I can stay fairly calm at first, I can even act calm when I’m not (that spike is me walking out of the classroom as I’m about to lose it with him), but then I’m still agitated well after he’s not. I ran out paper at that point, the graph loses accuracy, my raised anxiety levels last much longer than his tantrum did. Three hours later I’m still not quite down.

*School, with the exception of one teacher, seem interested only in managing his behaviour at school. When I mention his behaviour at home they are polite butseem only interested in how home behaviour impacts at school. To be fair, I have been invited (by a leaflet sent in his book bag, nothing addressed to me) on a “Solihull parenting course”. I have read a lot of parenting books – they mainly contain common sense, the things I try and do and act as reminders rather than giving much in the way of “new” tricks and tips. I strongly suspect this parenting course would be the same. If I thought it had specific help for kids on the Autistic Spectrum, that might be different, but no-one has said it does.