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.

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.

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.

Then:

  • 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.

Then:

  • 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.

Then:

  • 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….

 

 

 

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.

 

Welcome Home Weremama

My next post was going to be about me, not my kids, not any kid in particular. I had decided. The whole ridiculous part of my brain that maintains that I should be blogging “properly” has been negotiated with and I/we have reached a compromise where I can do a relatively guilt free “Moan about my kids post” not more than once every other post.

Tonight I am shattered. We had a week away. Mainly good. Mainly busy. Not enough sleep all round. Today we travelled back. In as chilled out a fashion as week could muster. Everyone was tired. Kids were floppy.

We made it home. The boy and I went and got fish and chips for tea (or more accurately fish/sausage/veggie sausage/spring roll and chips/prawn crakers for tea) which gave him chance to run and jump off some of the pent up energy from being on a train. After tea we patiently let him faff around serving pudding (20 mins plus to dole out 4 individual bakewell tarts from a packet, seriously?!) and headed off the screams of his sister after he covered all of them in yoghurt without asking her (by letting her have the two left overs in the packet and him have 2 yoghurt covered ones).

Then we started our bedtime routine, a little later than it should be but earlier than we’ve been managing this week. A long bath for her whilst he faffed some more. A bath for him. Stories. An extra story as he’d missed at least one with his faffing. Into beds. Cuddles, a song for him, lights off, cd on and with a “Night night, see you in the morning” parting shot the remaining parent retreats. For some reason I thought that this thorough, yet fairly relaxed routine, combined with his clear tiredness, would work. I planned to do a little unpacking/sorting, plant his book at the bottom of his bed for him to find in the morning (thereby potentially getting me an extra 20 mins peace) and then go to bed early. Why oh why did I think that Tired Child + Thorough Bedtime Routine would result in Sleeping Child?

Of course it resulted in complainining, whining, argumentative, repeatedly getting out of bed, child. A child who messes about when you’re reasonable with him and shouts when you’re firm with him and gets out of bed the moment you walk away.

And my tiredness, combined with weeks of this merry dance, all caught up with me and I transformed into Wearwolf Mama big style. I shouted, I threatened, I berated. And of course all it did was wind him up further and make poor little sister lying quietly in her bed meekly ask me to tone it down as she was getting a headache.

And then I came downstairs and cried my eyes out. I felt like I was mourning the lost hours from the past couple of months. The hours repeatedly trying to put him back into bed. The hours not being able to concentrate on anything as you are waiting for his next move lost. The hours of kid free sorting out lost. The hours of communicating with husband lost. The hours of my wind down time lost. The hours of my sleep lost as once again I don’t contemplate bed until 11.30pm as I’ve been so busy and then I’m too wound up to sleep. The resultant slippage in the general household demeanour.

Hubby was doing a stonking job at being calm and reasonable. With me and with him. Although even he eventually lost his temper with the boy, albeit less dramatically.

But I wasn’t in the mood for realising my priorities or calming down. I just wanted to sit with my months of frustration, acknowledge it, be with it, I wasn’t ready for more than that. But I couldn’t even do that as all the Helpful Advice people keep giving me kept coming into my head. “Have you tried a reward chart?” “You just need to be firm with him” “Don’t feed him sugary/processed food” “Make sure bedtime is at least 2 hours after he’s eaten” “Have a bedtime routine” “Explain to him why sleep is important”. So now my brain starts regurgitating this unwanted advice on it’s own. And then I feel the need, against my better judgement, to double/triple/n-tuple check that I’ve tried it all (or have a valid reason for not trying it) as what would be worse than Unwanted Advice would be Really Helpful Advice That I Ignored Because I Dismissed it as Unwanted. So then my head is going round in circles again double checking what I do against all the possible things that maybe I should do and searching for the Amazingly Simple Overlooked Thing That I’m Not Doing That Would Solve All My Problems. All this whilst hubby is still putting him back in bed. Again.

Then I turn to the internet and search for Asperger’s Sleep Problems, because, hey the GP’s preferred course of action is treating him as if he has Aspergers and seeing if that works as it can’t hurt. Mistake. As the search basically throws up Mainly Stuff I’ve Tried + Feelings of Inevitability About the Problem + Suggestion to Keep a Sleep Diary – as at least you’ll be able to prove to “them” that when you say your only getting 2 hours sleep a night you’re not exaggerating.

Bitchface loved that last one. I am getting way more than 2 hours sleep a night. I probably get 5 – 7 hours. So How the Hell Can I Complain When There Are People Out There With Real Problems? I just need to get a bit more orgainised, roll my sleeves up and get on with it. Clearly. The fact that I feel that I’m not even treading water with all this disruption but starting to move backwards is nothing. I’m just a big flake.

So, here I once again. Stuck in the Middle. In the Blue Corner, People With “Normal” Lives Whose Kids Go To Bed. In the Red Corner, People with Real Problems and Kids whose Never Sleep. And in the middle, me. Neither. With a kid who drives me nuts but still lets me get nearly enough sleep. Not “Good” enough to not be a problem, but not “Bad” enough to count as a real problem, meaning that it must be My Fault Entirely (not sure why hubby gets to dissolve all responsibility in this “Logic” but seemingly he does).

At the end of the day, now I’m a bit calmer, it’s back to the same old same old. He doesn’t like missing out on anything, he doesn’t want to sleep, he doesn’t want to be left. And no matter how calm/relaxed/gentle your routine, there comes to a point where he has to do his bit and actually try to lie quietly in his bed. I know this is what is needed, as when he does finally lie in his bed without making noise/sitting up/ getting out for 5-10 mins he almost invariably falls asleep. Talking him through relaxation techniques can work, occasionally, but more often than not they are resisted. And if he’s not left alone in bed, then he has an audience and he doesn’t sleep as he feels the need to keep performing. And if he is left alone and doesn’t want to be in bed he doesn’t stay there. And we consistently find in life in general that consequences need to be immediate to be effective (which is why we’ve never got a reward chart to work, once, ever, admittedly we’ve never tried it for sleep, but we have tried it for other things). Which leads to the conundrum “What is an immediate consequence for not staying quiet in bed which does not involve any attention from an adult”, because once he’s in that mood, any kind of attention is sought.

No, don’t tell me, I don’t want to know. I don’t actually want to know the answer. I just want to wallow in self pity at how rubbish I feel. Or I did. Now I’ve written it all out, all I want to do is move on, stop thinking about this, so I can wind down myself and try and get enough sleep so that by bedtime tomorrow I might actually be in a state to deal with it calmly.

Missing the last russian doll

Earlier today I had one of those revelations out of nowhere where your brain clicks and suddenly it all makes sense and the more you twist it round in your head and examine it the more facets you see, the more links you get. Needless to say its faded away now, but I wanted to write down what I can remember before it’s gone altogether. I tried to start earlier but I went to sleep instead.

OK, so the revelation was when I was riding a bike (hmm, think the last time this kind of thing happened was when I was running, brain take note). I was on goodish form earlier. I wasn’t on fire, but it was a good start to the week, I was the first up (at 7.30, the kids lay in, hooray) and I even tried making pancakes (unmitigated disaster) and we got to school on time, ok, there was a little shouting on my part at the last minute to get them out the door but I didn’t “lose it” and I didn’t have to drag any child screaming on the way to school (sadly, this has happened more than once). I had even got a bit done, started a to do list, cleared the now inedible veg from the week of no cooking out of the fridge, checked the home phone messages (a biggie for me, the oldest was 4th June) and the post (but not the unread emails), got organised for tomorrow (when we have a lot on), realised my priority was sorting food out, even realised that I can cook nice food with extras for me, not just to take around to friends. I am allowed to make my life easier too.

Ok, back to the bike, which I was riding to save time doing my shopping. I had just detoured past a mediocre coffee shop that my favourite barista now works at to see if he was working, he wasn’t, so I didn’t stop. (Is that stalking? The owner was in, he’s really boring and the place has no atmosphere when he’s there). To avoid looking really obvious turning around I went on a little experimental detour and that’s when stuff hit me.

It started with a thought that I had after my counseling session, not something we discussed, just something that occurred to me afterwards. OK, bear with me here cos my mind thinks in maths imagery sometimes but don’t worry it’s not complicated.

I think most people have seen a Venn Diagram, those overlapping circles that are used to show what sets/people/ideas/etc have in common and what they don’t have in common, popular in dodgy management/motivation powerpoints. (Ok, now I’m distracting myself looking up pictures of Venn Diagrams, bet you didn’t know they could look like this, I will stop now, if you’re a maths geek check this page out).

Anyway, I kind of have this image of me as a Venn diagram, a big circle for me and lots of overlapping circles, my husbands circle overlaps mine a lot, as do my kids, other peoples less so. Anyway I wondered what was in the bit that was left, the bit of my life that doesn’t overlap the other circles in my family. I mean, my kids lives are pretty simple, they’re either with a parent or at school, well nearly always. And my husband goes to work and has hobbies that he goes off and does regularly. Now I don’t work, so a large portion of my week isn’t in the presence of my kids and my hubby, but quite a lot of that time is filled with family related stuff, housework, shopping, filling out forms related to children, buying presents for them to take to the birthday party they’re going to, that kind of thing. And a small amount is related to my mum, like painting the top 6 inches of her spare room that she couldn’t reach. But I was trying to work out what was left, and I couldn’t. It felt like I’d lost my identity, and just become a background figure in other peoples lives (ok, slightly melodramatic but you get the point). I started trying to think about what I used to do, before I had kids, and I couldn’t remember, I couldn’t think of anything. Artghhh.

So this came to my mind, my lost identity. And I realised that I have my sewing. Now, don’t get me wrong, I’m quite happy sewing, but it’s kind of different to my husbands hobbies. I do it at home. He goes out for the evening and I stay at home sewing. There’s a couple of pertinent things about this. One is, it happens in the house, so it’s not without interruptions and it happens at my main place of work, so in amongst all the guilt inducing piles of laundry/paperwork/dirty dishes. Another is that it doesn’t involve meeting other people, it’s solitary. Sure I get to read lots of sewing blogs, but I’m not out talking to people. And another is that it’s a movable thing, it’s not timetabled in, so it’s the first thing to be dropped when time gets squeezed (ok, maybe not always, I have been known to ignore precariously stacked washing up piles in order to sew etc). Hubby goes out to his hobbies and he needs A Reason to miss them. And he books weekends away (usually for all of us but not always) in the calender. And before I know it all the time is booked up and we’re busy and frantic and there’s nothing left for what I wanted to do, which would be more of a last minute thing.

Still with me, because this is where the favourite barista bit comes in. I like him because he chats. So I realised that basically, I go to the coffee shop for a conversation, that’s what I’m buying with my overpriced coffee. Now, I always used to think I was an extroverted chatty person who loved being around people. More recently I’ve been reevaluating, realising the quiet down time I need and don’t always get around kids which makes me fractious. But, like most people, I’m not that simple and I’d forgotten the chatty bit. I don’t have that in my week. I have my kids, bless them they’re lovely but they’re not the best at sharing a conversation and I have my husband and err, people who work in coffee shops. Eek.

And then I realised that this has changed in the past 18 months or so since my youngest started school. Because before that, my week had children in and that meant meeting up with other adults. Going to groups and chatting with the adults, having a playdate, and chatting with adults. And now I don’t have them around, I don’t have that reason to meet up with my friends (and lets face it, that’s what groups to take pre school children are for, they’re for the adults). And meeting up with friends and their children when yours aren’t there is wierd, I know, I’ve tried it. So this is why I hang out at the playground after drop off seeking out people I know to chat with and don’t get started on my day. Because that might be the only conversation I have with a non family member all day. Eek (again).

Maybe this explains why I’m not apprehensive about the school holidays ahead. It could be that they’re still 4 weeks off. But it could also be because I get to hang out with my mates and have a natter and a cup of tea whilst ignoring the kids as much as possible..

I also realised something else that I used to do before. Maths. Until I reached my level in academia because it got too hard and lonely. But it used my brain. I’m not sure how much I’ve been using my brain recently. Not actually exercising it.

So, I seriously need some things to do. I knew this before, it just makes even more sense why now. Before I went and looked up evening courses and dance classes and the like. The only problem is they all start at that really awkward stressful in the middle of putting the kids time of day. And even I did decide to go anyway, I would probably want to go with a friend the first couple of times, and all my friends have kids and are putting their kids to bed too. And the dance classes I’m interested in I’d want to go to with hubby, but that kind of defeats the point. And I’m not sure what the other class is I’d want to do.

So, I guess my big revelation is, I have lost myself. Sounds like a fairly lame midlife crisis when you put it that way. It made more sense earlier. And it’s not that I’ve lost all of myself, because I don’t want to lose the family bit. I just think there needs to be a balance to that. And I need to figure out what that should be. By which I mean what it should be for me, not what I’m “supposed” to do, because as far as I can tell I’m “supposed” to go to exercise classes (as in that’s what I see other mums doing), and I don’t want to. Or join a book group (I love reading, I hate discussing books, never saw the point in English literature lessons at school). In fact I’ve never been much of one for organised activities, more hanging out with mates, but now my mates all have kids that doesn’t happen.

Right, enough navel gazing for now. I have washing up to keep on top of, an educational psychologists report to re read, and tomorrow I have to accompany hubby to minor surgery and be his responisble adult after, feed my mum lunch inbetween her attending my kids sports day things on my behalf and pick up 3 extra kids from school.

————————————————————————————–

Update:

I have found just found this blog post by Blue Day Beau which neatly sums up how I was feeling, except it’s much more succinct and eloquent, if you got this far you should definitely take a look.

Progress

Did I mention that I was trying to find out from The-Amorphous-Entity-That-Is-School what interaction my son should expect with the Education Psychologist? Probably I did at some point (yes, I know, I should re read entire blog post and comments and check my references. I should also not spend too long on this Internet Enabled Device though as I have Shit To Get On With). And that I was struggling a little with which of the the beasts multiheads I should try and communicate with (Class Teacher A / Class Teacher B / SENCO / Fussy People Who Like Publicly Humiliating Parents Someone from “The Office” / Other) and how best to manage that (email/phone/letter/messenger from another realm) preferrably without ending up in a 10 minute discussion of all my son’s issues in front of him and his sister and whoever else happened to be in the playground.

I think my initial mistake was that I tried to explain why such info was important (namely because It Is To My Son) and reassure them that I am not trying to micromanage the Educational Psychologist. This was interpretted as background info (as in “thank you for the background in your email”) and my actual request was overlooked.

Whilst I was venting my frustration by ranting on my blog musing on what to do next, a form was sent home, stating that the Ed Psych was coming to town and the date and that no parental involvement was reqiured. Great, I thought, but what about the pupil involvment? So yesterday a.m., I sent back said form with a note scrawled on it asking what his involvement would be and that could they either tell me so I could explain, or tell him, but if the former could they tell me in writing to avoid the whole discussing it in front of him thing.

I’m not sure how quick a response I expected. What I didn’t expect was a photocopy of the original form (sans my scrawl) to be sent home again the same day.

So today, back it went again, with a brief and hopefully not too snarky note on the 2nd copy. Something along the lines of “Thank you for sending me a second copy of this form. Please could you let me know what the pupil involvement is. Many thanks”, with the middle sentance highlighted.

So it is to my shame that after checking that he had entered the building and wasn’t listening, Class Teacher B (who teaches 2 days a week) told me that she didn’t know what the format of the Ed Psych visit would take, she hadn’t had chance to find out yet (they did have a class trip yesterday p.m.), but she would do so and make sure he’d been told. Hoorah. Effective Communication.

I rather sheepishly asked her to disregard the note in his book bag then as that answered my query.

Hope Class Teacher B isn’t too pissed off when she sees the note.

Now, to let everyone calm down before asking ever so nicely and yet Very Clearly for a copy of this elusive He-Doesn’t-Need-a-Home-School-Agreement-Plan-Because-We’re-Using
-Alternative-Documentation-That-You-Have-No-Idea-What-Is-In-It-Despite-Us-Having-Told-You-That-You’ve-Already-Seen-All-His-Records Document.

P.S.

Bonus points if you have worked out that I am making myself a big ball of problems by avoiding a bit of admin that I haven’t been doing because I’m worried that I should already have done it and will have let people down and now I’ve been given a deadline and am genuinely in danger of letting people down and dragging my reputation through the gutter but I’m having problems getting started on it as it’s now A Thing so I’m wittering on about this instead.

Monday Morning Rantathon

Today I am resenting my unexpected new position of Person-Most-With-It-In-The-Morning-in-Our-Household.

I am not a natural morning person, not an early riser. I like staying in bed for as long as possible. 9 o’clock? Fine. 10 o’clock? Even better. This has been my inclination for as long as I can remember. Maybe it’s something to do with having Glandular Fever as a teenager, maybe it’s just how I am, maybe I just never grew up and got my act together. Whatever, I am rarely the first person up in my house. Add into that the habit of hiding under the cover because I don’t want to face the day and I’m hardly ever the first person up. Plus my husband struggles to sleep in late, he just wakes up, and my 2 children, well, they are fairly typical, they wake up early and loud.

So it is somewhat a shock to the system when on a Monday morning I am the first out of my room and trying to organise everyone else. Unfortunately this is not due to some amazing leap forward by me finally getting my act together but rather a reflection that everyone else seems to have slipped below my rather minimal standards.

This morning I had to try and persuade my children to stop rolling around on the floor and get dressed, whilst trying to make the grown ups their morning kick start cup of tea. Which I want to happen at the same time, but the kitchen is not near the kids bedroom and the kids are rather reluctant to get their act together (weeks of settling late to bed (despite our deperate best efforts) due to the light hot evenings are starting to take their toll). I sort of manage. Then I have to persuade them to eat some breakfast. This proves tricky. My son is easily distracted and would undoubtedly benefit from living in a minimalist household with everything not currently needed neatly stored away out of site in an elegant cupboard. Whereas our household has piles of unsorted Parent Trap (our very own Cockney Rhyming slang) everywhere ready for him to become fascinated with, pick up and start fiddling with. Then there is the negotiation over who has what bowl. I manage to steamroller him through that, helped by the knowledge that he is so much easier to be around once he’s eaten. Then the incomprehensible complaint about the lack of the right kind of breakfast cereal, except it’s unclear what the right kind of breakfast cereal would be, althought it’s clear we don’t have it. I just about manage to hold it together whilst being shouted at in the manner of someone with a justified complaint who had clearly requested this cereal in a timely and polite fashion and is now at the end of their tether. I resent being shouted at like that the first time an issue is raised.

Finally, they are both sat eating breakfast. I take the cups of tea upstairs hoping to sit in peace and drink half of mine on our bed before geting dressed. Except that it’s starting to become clear that my other half is struggling to make it out from under the covers. I want to find out what’s wrong, is he tired, hayfever, stressed, but an almighty fight breaks out downstairs, I try to ignore it but it migrates onto our rather steep stairs and sounds like it might get violent any minute so I go to intervene.

Turns out one of the things that were in a random pile on the dining table was a sheet of stickers that I had picked of the floor when tidying up last night but had got no further in their journey to where they belong (partly as I’m not even sure where that is). Bought as simple white dots, my son had coloured them in (over a week ago I think) and now they are the most important thing in the world and he has grand plans for what he is going to do next to decorate them. Grand plans that have been dashed by his sister stealing one. Getting her back to the table and breakfast is easy, she likes breakfast. Getting him to move on from Stickergate is harder but I manage it in the end.

Right back to my cup of tea. Except it is now becoming obvious that husband is really not feeling great and it seems to be all his, you know, stuff (gestures to one side). I have no idea what the right thing to do is. After a big hug I coax him upright and give him his tea and mutter something about coming to have some breakfast and seeing how he feels after that.

Then, now half dressed (yippee, progress for me) I make it back downstairs and do some more negotiating with little sister about not leaving breakfast half eaten to strew your box of precious things / small irritating rubbish (we have a difference of opinion on the contents of this particular box) all over the hallway and make husband toast.

Life continues in this vain, with me running from person to person, coaxing/cajoling/bribing/threatening them back on track and trying to get myself ready at the same time. One lowlights is having to rewrite a check for school dinner money as I inadvertendly signed in the amount payable box (the woman in the office who deals with checks appears to take great delight in pointing out errors in how they’re written which really winds me up, she came into the playground recently to tell me in front of as many people as possible that I’d written 2013 rather than 2014 on the check and not for the first time). Another is realising that despite having been brought toast in bed hubby is now hiding under the duvet again and not speaking. He manages to communicate that he plans to stay there and request I phone his work. This is really tough for me. Phone calls are the thing I find hardest when stressed and phoning in sick because you’re feeling stressed brings back some painful memories for me. But I manage it.

Finally we are on track to leave for school. And then my son goes to the toilet. This is his latest habit. Right at the last minute he goes to the toilet. And takes ages. And then more ages. And I get cross and frustrated. And then I feel guilty because bodily functions are not a sign of disobedience. And yet. I know some of the time he’s not doing what he should be in the bathroom. We are in no mans land. No longer in the parent assisted toileting, not actually reliable and trusted either. He shuts the door. I respect him. But sometimes I knock and open it and find him fiddling with the shower curtain having not even started using the toilet yet despite being in there over 5 minutes. Or opening and closing cupboard doors and then it transpires he hasn’t washed his hands yet. So this latest habit, of being a long long time just as we need to leave, is it a case of bad timing, or his infinite ability to distract himself, or a subconcious derailing of the going to school progress.

Today I decide it’s unfair on his sister to be late every day. I take advantage of another parent on site and give him a deadline, then leave without him. Maybe drawing a line in the sand will help. Unfortuantely rather than appreciating my efforts to get her to school on time and valuing some one on one time with her mum, instead she argues at me half the way to school about the contents of the bag of junk modelling stuff we’re taking in (I’d actually sorted that out the night before). When I refuse to argue further she sulks the rest of the way.

So, drop daughter off, explain sulking to her teacher, go and tell his teacher that I’m going back to get him now and he’ll be late, go home, get him, take him to the office to be signed in late, give in the cheque for dinner money and be told that I DATED IT JULY NOT JUNE. Agghhh.

So thank you, inerenet thingy, for listening to my rant. It helped. It made me feel better. For a whole minute and a half. And now Bitchface has started up pointing out how petty and small my problems are compared to real problems and what an insult I am to those really suffering…