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Tiny Tyger, Baby Bear and Me: October 2015

Saturday, 31 October 2015

Where Am I Going Wrong (or Right)?

Edit:  Thank you for all the responses and I have made a few changes accordingly.  If you would still like to comment you can give feedback on the current colours/background.

I was really pleased with last week's post where I interviewed my Aspie sister on what it's like to have ASD and her experience of meltdowns.  I was unsure how to top that this week.  A Halloween themed post?  An interview with my dyspraxic, colour blind sister?  Nah, I've decided to enlist your help instead.

At some future point I might self host my blog but for now I'm sticking with Blogger.  However, I am still a technophobe and still a bit clueless when it comes to this blogging business and I'm also hugely indecisive.  Picking what to have for lunch is often an angst-filled process so deciding on the look and content of my blog is just too much and I generally try to avoid thinking about it lest I have a break down.

It's okay, though, I've thought of a way round this!  I'll do what I often do at lunchtime and ask other people what they're planning to eat...or I'll ask other people what they think I should do with my blog (although, lunchtime is coming up so I'd be open to hearing your lunch options too).

Here we go.  I should warn you I am utterly useless when it comes to terminology for...websitey, bloggy stuff.

The Stripes

So, there should be tiger stripes down the sides of the blog.  You know, the backgroundy bit.  This is an example of my awesome MS Paint skills.  I know, I know, I said I was a technophobe then I drop this bombshell on you but I did indeed make those incredibly artistic and sophisticated stripes all by myself.

I actually quite like the stripes.  They fit with the blog name, they're kind of unpretentious, fun and childlike.  I don't like the fact they're not very symmetrical and sort of cut off at the right hand side but I'm not sure if that's dependent on the device you access the blog from and I'm sure it's fixable if I really put my mind to it.

Anyway, whilst I quite like them I'm open to other suggestions.  Or open to the idea of keeping stripes and making them a little more...realistic.  What are your thoughts?

The Horrid Colour Scheme

It's very...brown.  I think pretty much all other blogs I read have white behind the text and on the side bit where all the stuff about Facebook and Twitter go.  I have brown.

It's left over from when I first made the blog and didn't have the stripes and it looked a bit different (not very different, granted, because...all that stuff I said about decisiveness).  I did ask what people thought of the brown on my Facebook page and a couple of people said they liked it but this was going back to when I only had a few page likes - pretty much exclusively friends and family - as opposed to the still fewer than 100 many, many I have now.  White would mean I wouldn't have that annoying white border around photos and badges and...I want to say widgets or something (the Facebook and Twitter bits on the right...or, at least, on the right on a laptop or computer) but would it be too boring?

Do you like the brown with the off-white text?  This is the one thing I'm most likely to change but if it turns out everyone actually does genuinely love the brown I'd suck it up and keep it.  If not brown then what?  White?  There must be a reason it's the choice of most other bloggers out there!  Or a different colour?


I imagine there's a way to get a photo somewhere here (other than in the actual blog posts).  Lots of other people do it.  I try to stay relatively anonymous on here because I'm writing largely about other people and predominantly about Tyger and Bear's lives so I won't put up a big picture of my face or anything.  However, I did get my lovely mum to take this photo for me to use as a profile picture for Facebook, Twitter and comments on here:

Do you think I should have this photo (or some other photo) somewhere at the top of the blog?


I don't really have any hard and fast rules when it comes to the content of my blog posts.  I tend to write about ASD a lot and Tyger is often my protagonist but I also write about Bear, myself, other issues (like gender stereotypes and breastfeeding in public) and anything that happens to pop into my head.

So, if you have read a few of my posts, which do you prefer?  Is there anything you'd like me to write about more often?  Or something you'd like me to cover that I haven't written about yet?

Other Things I Don't Really Think About

Any other thoughts?  I lazily use the 'default font' on all my blog posts.  Should I pick something else (more decisions!)?  Should I add more photos to my blog posts?  Should I branch out more on social media (I know how to use Facebook and Twitter - everything else scares me but I'll give it a go if I really should)?  Does anything about my writing style really annoy you (I use parenthesis and ellipsis a lot, for one thing)?  Should I try to figure out how to have actual pages like an 'about me' section and all that jazz?  Or are there any other pieces of advice or criticism I haven't covered you'd like to throw my way?

I genuinely am - possibly foolishly - asking for honest opinions so please don't worry about offending me.  I'm not quite happy with the blog as is, which is why I'm addressing this in the first place.  I'd love answers in any form: in the comment section of this post, in the comment section on Facebook, as tweets to me on Twitter or even face to face if you're one of the lucky people who know me in real life.  Whatever's easiest for you!

*Sits back and awaits tumbleweed.*

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Saturday, 24 October 2015

Interview with the Aspie

I use this blog as a platform to raise awareness and understanding of ASD pretty often but - as I covered in my blog post here - I'm not autistic myself.  One of my sisters is, though, and she kindly agreed to let me interview her to allow me to fully communicate the perspective of someone on the spectrum.  My sister is only 16 and was diagnosed with Asperger's Syndrome just two and a half years ago.  On here I call her 'Aspie Sister' (with her full support - she doesn't see 'Aspie' as a negative term) so that's been abbreviated to 'AS' for the interview.


Me:  I wanted to do this interview to give people a slightly better idea of what it's like to have autism and especially to have a meltdown because I think it's quite hard for people to imagine or to empathise with.  You got your diagnosis quite late, which is often the case for girls.  So, did you realised you might be different to your peers before then?

AS:  I think I always realised I was different.  Thinking back to year seven - I don't know why but I was going through a really weird phase - I'd always tell people I was insane and my password was always like 'iaminsane'.

Me:  I remember, actually, getting a text from you once saying, 'Am I normal?'

AS:  That rings a bell.

Me:  And I kind of brushed it off at the time.  I just said, 'Oh well, what is normal anyway?  Is anyone really normal and is being normal really such a good thing?'  Now - knowing - it shows you did have an idea you weren't neurotypical even if you wouldn't have known to phrase it like that.

AS:  Yeah.  I think one of the reasons I would always be like 'I'm insane' and I'd try to make a joke of it was because I was quite scared.  Because, I was like, 'I'm different.  I don't know what this is.  Why am I not like everyone else?'  I just tried to put this front up and I was all, 'Ah, I'm insane!  I'm so funny!'

Me:  Yeah.  'I'm just the crazy one.'  Like...the 'quirky friend' because that's obviously a 'thing' in TV shows so I guess you thought if you could embody that then it was still an accepted role in society?

AS:  Yeah.

Me:  How did you feel about the diagnosis, then?

AS:  I was so relieved.  Most people are like, 'It's not a good thing you've got a diagnosis.  Why are you happy you've got this label?'  But it is such a relief when I've been thinking I'm from a different planet.  I thought no-one was like me.  To have that and know there are other people like me is just such a relief.  It also meant I could get help.

Me:  You've had a lot of various support and it's worked to different degrees depending on how well the person trying to support you understands ASD.  There are some misguided attempts to help.  People quite often think they're helping by telling you to tell them when you're having problems, don't they?

AS:  Yeah.  Also I'm not good at speaking in person and teachers often say, 'I don't like emails much.  Just come up to me and talk to me about it.'  And I'm like, 'No, just let me email you.'  It really annoys me when they don't email back but then they come up to me and just start talking to me about it and I'm like, 'No!  No.'

Me:  Would you like to explain what having ASD actually means for you and your everyday life?

AS:  I don't know because it's quite hard when you have it and...it's just your life.  People always ask me, 'What's it like to be autistic?'  But, I don't know.  It's just how I am, how I see the world.  For me, I can't imagine anyone else seeing it in any other way.  It's like me asking other people, 'What's it like to be normal?'  I don't know.

Me:  The big thing I wanted to cover was meltdowns.  I was wondering if you could talk me through what triggers them.

AS:  For me it's usually something social.  If something goes really wrong in a social situation that can trigger it for me.  Or if something to do with my routine gets wrecked, especially if it's a routine I've had for a long time.  Like when I always used to have to have spaghetti on a Sunday and then I remember coming home one Sunday and Dad said, 'We're going to have a barbecue tonight.'  I was screaming and Mum and Dad didn't seem to understand why.  They were like, 'But you like barbecues.'  I think they struggled to understand why it was such a big thing for me.

Me:  Can you remember from meltdowns how you actually feel?

AS:  I guess you just feel very overwhelmed.  A lot.  It's quite hard to describe and it depends on why you have the meltdown.

Me:  So, it's not always the same feeling?  It varies?

AS:  Yeah.  And when you start to go into a meltdown you do start to lose control.  And there's this part of you that's like, 'No, stop it.'  You can see it's just silly and you shouldn't be doing it but it's just this tiny little voice and the rest of you is like, 'NO!  This is so important.'

Me:  So, there is a bit of you watching yourself from outside?

AS:  Especially if I'm in a group of people it's like, 'Stop it, stop it.  Everyone's going to look at you.  Stop it.'

Me:  But you can't?

AS:  I cannot.

Me:  It's not something you're doing out of choice.

AS:  No.  And I've noticed I have a lot of actions I just cannot control.  They just happen.  I often just randomly shake my head quickly - especially if anyone tries to talk to me.  I'll just shake my head: 'No.'  Obviously, there's that part of you that knows it's bad that then starts to get frustrated and then that comes out so you get angry and upset and everything.

Me:  So, it's like a loop?  It feeds into the meltdown?

AS:  Yeah and that's when, I think, other ASD people can get quite aggressive.  I don't tend to get aggressive but there have been times where I do get a little bit aggressive.

Me:  It's more just anger at yourself for not being able to stop it?

AS:  And then I can't control the anger and it sort of goes into this horrible cycle.

Me:  Do you typically cry?

AS:  I usually cry.  Usually there's lots of grabbing at myself and my hair - that's something I do a lot - and various shaking and tapping.

Me:  And I know you sometimes pace?

AS:  Pacing: definitely.  And then when the anger starts to build up I start to like, 'Argh!' (clenches her fists) And that's when I'm grabbing even more and sometimes I'll just be like...

Me:  And as you work through the meltdown you often collapse, it seems.  Does that happen a lot?

AS:  Yeah.  I think it all gets too much and I just can't seem to function anymore so I just collapse and cry.

Me:  It's interesting because you lose control but there's a part of yourself that says, 'Don't do this.'  When you're coming out of the meltdown does the voice gets louder or is it that you cry yourself out or...how does it end?

AS:  I usually just run out of energy.  When I was in year nine I used to say I'd run out of tears.  I'd just get to the point where I...couldn't anymore.

Me:  So, is there anything that can bring you out of a meltdown once it's started?  Or is that it and it's just going to run its course until you run out of energy?

AS:  I guess it depends on how bad the meltdown is.

Me:  And maybe where you are and who you're with?  Would you be more likely to come out of a meltdown when you're here, somewhere you're comfortable, and with - for instance - Mum?  Or, because you're comfortable, would you be more likely to let go and would you be more likely to hold it back when you're out with people?

AS:  I try to hold it back more when I'm out with people.  You want, so badly, to fit in.  You just hold it all in and that's often when - when I get home - it all comes out.  I used to find especially on Fridays when I'd had the whole week at school I'd often just end up crying.

Me:  So, after you've had a meltdown do you typically feel better than you did before or do you feel worse...or do you just feel numb?

AS:  I think it depends on where I am.  So, if it's out in public or something, I'd feel worse afterwards but if it's at home I usually feel better.  Sometimes it's just nice to let it all out.

Me:  During the meltdown, is there much in the way of thought?  You say there's a small part of yourself that is just thinking, 'Don't do this,' but other than that are you thinking much?

AS:  There aren't many thoughts but it often is a sort of cycle of what sent you into the meltdown but then it can start to reach out to other things so that makes the meltdown even worse because then you're like, 'And there's this wrong, and there's this wrong and this happened.'  I often keep saying, over and over, 'I'm sorry.'  Especially if it's with Mum or my boyfriend.  'I'm sorry.  I'm sorry.'  They'll say, 'Why?'  And I don't say anything other than, 'I'm sorry.'

Me:  Do you think you're sorry because you think you're putting all that on them?

AS:  Yeah.

Me:  Like you're burdening them?

AS:  I always feel like that.  Sometimes when I get upset about something and I'm talking to my boyfriend he says, 'Go and see your mum.'  And I'm like, 'No, I don't want to put another thing on her.  I can't do that to her.'

Me:  Finally, is there anything you wish more people knew about ASD?

AS:  Probably...that we are people as well.  Some people get scared of us.  People know of the ones who are quite aggressive and violent...or just because it's unknown to them so they get a bit scared.  Or some people just get very angry with people who have ASD and they're like, 'They shouldn't be allowed to reproduce.'

Me:  Jesus!

AS:  Just, if you hear one story of an ASD person who's been violent or something then you get so many horrible people.

Me:  (Sarcastic) Yeah, because neurotypical people are never violent!  I guess it's just ignorance, isn't it?

AS:  Yeah.

Me:  Thank you.

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Monday, 19 October 2015

So...What *Is* Autism?

The toddler group we used to go to has finally started back up, which is good when the weather's pretty dreary but the cubs need to get out of the house.

I can't wait 'til they're old enough to enjoy sitting on the sofa with
a cup of tea on days like this.
There was a nice couple at the group whose little boy has now started school but they came along to offer moral support to the woman who's taken over the running of things (and I imagine for the tea, as well - that's at least half the reason I go).  I used to chat with them quite a bit before summer so they knew Tyger was being assessed for ASD and I mentioned the fact he got a diagnosis.

That's when the inevitable happened.  The dad (not so called just because I anonymise everyone on here but because I can't actually remember his name) asked me what having ASD actually meant for Tyger.

I love the fact he asked because he didn't assume he knew, he was genuinely interested and he wanted to hear from someone who had knowledge and experience of ASD.  Great.  Really, really great (no, genuinely great - why do I always read that word in a sarcastic tone??).

I also hate the fact he asked because I never know what to say.  Autism spectrum disorder is a...well, a spectrum and a disorder (ah, I see what they did there!).  It's not one thing and it varies for everyone.  Just thinking about Tyger alone and what ASD means for him is really hard because it's a combination of lots of behaviours and thought processes that all interact and change.  And it affects others on the spectrum completely differently.

I stuttered a bit about his sensory problems, anxiety and social issues but I don't think I really shed much light on what ASD actually is.

So, what is autism?  This question is harder to answer than you might think.  Right now we don't know the cause of autism so it's a term used to cover a collection of certain behaviours (and by 'we', I mean humanity in general  in case you had visions of me conducting studies and looking at brain scans and...other sciency things).  Of course, we don't know whether this collection of behaviours is even always caused by the same thing.  In some families - like mine - there seems to be a very strong genetic element.  When there are many families with many diagnoses of ASD it's hard to imagine it's a coincidence.  However, there are also people with ASD who appear to be the only ones in their family.  There are also many cases of children showing enough 'autistic traits' for a diagnosis where these traits have probably come from the fact they have been deaf or had hearing difficulties for the first few years of life.  Other times it is perhaps an overlap of other conditions or disorders (like dyspraxia or OCD) that present as ASD.

Hopefully, in the future we'll have a way of separating out these similar and/or related conditions and disorders leading to better treatment or support for them all.  For now, though, there are certain diagnostic criteria for ASD but they do seem to vary depending on where you are and even which set of professionals you happen to end up dealing with.

The NHS website breaks down ASD into two main 'symptoms':

  • Problems with social interaction and communication.
  • Restrictive and repetitive patterns of thought, interests and physical behaviours.

You may also have heard of the 'triad of impairments'.  This is not a member of the Chinese mafia who deals with problems and difficulties.  It is three areas in which people with ASD struggle, often demonstrated by a triangle:
What do you think of my incredibly basic awesome Paint skills?
Depending on where you look, the exact wording might be different.  You might find 'flexibility of thought' becomes 'social imagination', for one thing, but generally the three 'impairments' cover the same things regardless of the exact wording.  Does this all sound a bit vague and confusing and like there's a lot of cross-over?  Welcome to my world!

It might help for me to use Tyger as an example to put these terms in context a little (or it might not but if you've made it this far you're about half way so might as well keep going now).

Social Interaction

Tyger struggles with 'appropriate' social interaction.  It's not that he doesn't enjoy talking to people because he does...a lot.  But he'll stand or sit too close to them because he's completely unaware of other people's personal space.  If I find him a bit suffocating then I can imagine it's off putting for other people (and I've seen other children get angry with him 'playing' by pretty much sitting on them so kids pick up on this stuff from a young age).

Whilst I hate the emphasis put on eye contact when discussing ASD, Tyger does have reduced eye contact and he finds it tiring to have to look at people's faces for any length of time (a conclusion I only reached quite recently, as I wrote about here).

He struggles to identify other people's (and, in deed, his own) emotions.  More than once, Baby Bear has cried and Tyger's response has been, 'Look, Bear's happy!'

Language and Communication

This does not mean Tyger is 'behind' in his language.  In fact, as the speech and language therapist (SALT) put it, his language is very 'sophisticated'.  He had over 200 words in his vocabulary when he was 18 months old, which is quite a lot (for anyone who doesn't have kids: the average for this age is something around 20-50 words (and for anyone who does have kids you'll have obsessed over numbers like that until your child was at least two so you'll already know)).

There were some oddities, though.  'Mummy' and 'yes' were not included in those 200+ words!  Two of the very first words children learn and they were nowhere to be seen.

In a similar vein, the SALT said it was interesting to note how - despite Tyger's language being advanced in many ways - the areas of language where he was more average or even slightly below average were connected with social awareness.  For instance, he comes out with amazingly grown-up phrases and has a huge vocabulary but still uses 'he', 'she' and 'it' interchangeably when talking about people.

It's also very common for people with ASD to have trouble processing language.  With Tyger - and with other members of my family - this means he will frequently respond with 'what?' to anything you say.  He's heard the words but needs a moment to actually make sense of them although I wish he would do so without the immediate 'WHAT??'.

Flexibility of Thought

The worst part of this for Tyger right now is the fact he seems to think once he states an idea, it is agreed upon and will happen.  So, 'I know, let's go outside,' in his head is, 'Everyone has agreed we will definitely go outside this instant.'  It's hugely frustrating and no amount of 'no' stops him.  I've tried other tactics like explaining the weather is awful but he'll just come back with, 'I have an idea; let's wear our boots.'
I need to hide these!
He just keeps asking, and telling, and explaining and generally going on and on and on and on and on about going out-smegging-side for hours and hours and hours and hours and...you probably get the picture.

He also struggles with changes to routine and 'the norm'.  He has a biscuit after lunch every day so if he sees a character on TV eating a biscuit before lunch he's utterly incredulous.  The mere suggestion of such blatant disregard for biscuit eating rules is unthinkable to Tyger.  There are also two lanes from the road to his preschool: one big and one small.  My mum dropped us off nearer the big lane the first few times we went so Tyger cannot go down the smaller lane on his way to preschool.  On the way back, yes.  On the way there, don't be so Goram ridiculous.  Going down the small lane on the way to preschool is almost as bizarre as eating a biscuit before lunch.

So, could I have just said all that to the guy at the toddler group?  Even if his eyes didn't glaze over after the mention of eye contact it doesn't mention all his sensory issues, which are a massive daily problem.  It doesn't touch on meltdowns, what causes them and what they're like.  And it's just picking out a few points from the many, many battles and problems and differences Tyger faces every day.

It's a tough one.  I want people to ask because I'd rather they showed an interest than either avoiding the subject or making assumptions and silently judging.

But I don't know what to say when someone actually does ask.  I want to get across everything but I don't want to lecture them until they turn off.

Any suggestions gratefully received.

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Saturday, 10 October 2015

Builders: The Agony

Maybe I'm not normal.  I know: you're shocked by this revelation.  I mentioned in last week's blog post (So Much for a Diagnosis) that there are builders in at the moment doing various...buildery jobs around my parents' house.

I have decided the world is split into two kinds of people: the kind of people who read the last sentence without any reaction and the kind who winced for me.

I hate having the builders in.  I don't hate the builders, themselves.  Sure they have a tendency to leave the baby gates open and are terrible at communicating what job they might work on next but on the whole I imagine they are decent guys doing their job.  I just don't like other people being in or around the house in general.  I can handle guests.  They tend to be people I like, stay in certain guest-appropriate rooms and arrive and leave at pre-arranged or predictable times.

The builders, though, turn up before 8am every morning.  It's not that I'm not up by that time (ha!  I wish; Tyger or Bear have me up well before 6 most mornings) but Bear is...clingy - yeah, we'll go with clingy - in the morning.  He tends to wake up in much the same way you'd expect someone who's passed out whilst being tortured and awakes to find their finger nails are being removed might wake up.  I get him his breakfast, sit with him on my lap whilst feeding him and then have to stay in the room for a good two hours or so because at the first sign I'm so much as looking towards the door you'd think someone was squeezing his fingernailless fingernails (I feel I should point out both my sons do, in fact, have all their fingernails still attached to their fingers).

Despite this, I still have to feed both cubs their breakfasts, let the dogs out and feed all cats and dogs.  Doing all that whilst trying to minimise the screaming from Bear leaves very little chance for getting myself ready.  I tend to just about manage to toast myself a bagel and pour a cup of tea.  Past that, I wait until my mum's back from taking my sisters to their school and college buses before I shower and/or get dressed etc.  This means I'm still unwashed and in pyjamas when the builders arrive every morning.  And we're not talking sexy, silky pyjamas or cute matching fleecy pyjamas.  We're talking a mix of decade old mismatched pyjamas with holes in and the Wolf's old long sleeve tops (often, also with holes).

And just as creased as that, too.

Then there are the practical issues.  It's pretty well known that people with ASD often like routine.  Tyger gets very agitated if I try to give him juice instead of squash at lunch time (juice is for morning, squash for drinking with lunch and water at dinner...obviously).  Having to spend almost entire days shut away in the - pretty small - dining room because the fireplace is being replaced in the living room is quite a big change.  Not only that but between the dining room and living room are sliding doors so they have to be duct taped up to stop Baby Bear just walking through there.  And the lack of space gives Tyger - who's already prone to boredom and agitation - a sort of wild cabin fever.

The builders are also...unpredictable.  Unpredictable means we don't know when they might be doing work on the fireplace in the living room as opposed to putting screed down on the floor in the hall between the old part of the house and the extension or doing...something to the...something outside the bathroom window (seriously, they seem to spend at least 50% of their time up ladders at the bathroom windows and I drink a lot of tea so that's not good) or knocking out a wall in the kitchen.

Did I mention the builders leave the baby gates open?  Well, they also leave the front door open.  Which is fine and sort of necessary when they're going back and forth but the other day I thought Tyger was with my mum in the kitchen and she thought he was with me in the living room.  He had actually put his boots on (he also had other clothes on for once and wasn't in his boots alone because he had nursery that morning so I guess that's something) and was lurking by the builders' van.  Now, before anyone decides to call Social Services - we're talking big driveway with a gate then a quiet lane before your get to a road rather than a main road outside the front door.  Still...not great.

Even 'simple' things like doing laundry has become a whole operation.  Okay, laundry is not normally simple; it's pretty complicated, actually.  The usual challenge is trying to sneak away to actually put the laundry in the machine, hang it up and put it away (I don't do ironing, if you hadn't already deduced that from the creases in the picture above).  If I do it whilst Bear is up and about the chances are he'll climb on something whilst I'm out of the room (have I mentioned Bear climbs?  On everything?  I mean, on smegging everything!  Chairs, tables, toy boxes, radiators, windowsills, desks, shelves, mantelpieces, the backs of sofas, counters...everything!) but if I try to do it whilst he's napping Tyger follows me and talks really loudly right outside Bear's room.

With the builders around this supposedly simple task becomes even more complex.  As evidenced above, Tyger can't be trusted not to wander off after the builders if he's not carefully watched (probably saying, 'Man?  What are you doing, Man?  Are you finished?  What's that?  Are you going to do hoovering? - did I mention the builders have a HENRY HOOVER?  Tyger was overjoyed to find that out).  Plus, the kitchen is often off limits because of all the dust.  Or I can get in the living room but everything's been moved so the washing machine is impossible to get to and even if the washing machine is accessible the tumble drier has been unplugged and moved (the weather has, of course, been awful).

I currently have washing in there...

What might look like a boring old vacuum cleaner to you is a superstar to Tyger.

But even with all of that, the practical component is not the worst part.  The worst part is simply the 'people in the house' part.  I suffer from depression and anxiety.  I also suffer from the arguably worse condition of Quintessential Awkward Britishness (or QAB).  Now, the former conditions make me uneasy about having strangers wandering about the house because they might judge me when Tyger has a meltdown (for instance, when he clawed me - I still have the marks five days later - because I reminded him he'd already had a Babybel that day) or because I feel like I can't actually catch my breath when they're working outside the window of a room I'm sitting in.  I mentioned I was hiding from the builders in my bedroom (with the curtains drawn) on Facebook and was asked why.  It hadn't seemed weird until I couldn't think of a logical response.

I feel like I'm stuck in a real life game of Pac-Man.  The builders are the ghosts and I wakka wakka wakka around the house trying to avoid them.  I guess the white dots are tea.  Or maybe the white dots are items of clothing I pick up as I make my way around the house and the cherries are tea?  There are cherries in Pac-Man, right?  But don't they make the ghosts flash and the builders certainly don't...errr...I believe I've mentioned my problems with creating metaphors and similes in the past.

But the QAB means when I fail to avoid the builders I'm faced with a conundrum.  Should I speak to them?  Is that polite or annoying for them because it stops them doing their job?  Should I at least say 'hi'?  But if they've been in the same house as me for hours it seems weird to say 'hi'.  Ignoring them is surely rude.  I normally settle for a strange smile that involves squishing my lips together.  I do not mean a pouty duck face look.  In fact, imagine almost the exact opposite of pouty duck face where the lips all but disappear and the chin becomes creased.  I tried to take a photo of the lower half of my face whilst doing it for this blog post and decided I did not want such an unflattering photo out there for the world (or the 50 or so people who are likely to read this) to see and I also struggled to angle the phone camera so you couldn't see up my nose.

Anyway, this 'smile' is often accompanied by an apology because, being British, I feel the need to apologise for pretty much everything I ever do.  I a builder is about to walk through a door and waits to let me past, I apologise.  If he's busy working in a room and I have to get something from that room, I apologise.  I also add in an exaggerated and hurried side step at least half the time even when this in no way helps.

Of course, all this QAB makes me feel like a right twat, which makes the anxiety worse, which makes all my QAB more forced and over the top, which raises my anxiety levels even more.  It's a horrible, ugly car crash of contorted facial expressions, muttered apologies and 'thank you's, sides steps, skips, little runs up the hall and sighs of relief as I finally get into a builder-free room.

The very worst part is the builders aren't even British so are probably completely baffled by my behaviour and possibly on the verge of calling an ambulance for fear I'm having some sort of stroke every time I come across them.

I'm feel so flustered by even writing about it all that I can't think of a suitable way of finishing this blog post so:

  • *Weird ugly smile to you*
  • 'Sorry'
  • I'll just scuttle out of your way so you can go about the rest of your day
  • (Argh, awkward unintentional rhyme of 'way' and 'day' sums up this whole painful experience.)

Phew, thank frack that's over.

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Sunday, 4 October 2015

So Much for a Diagnosis

I feel a bit like I'm in a fishbowl at the moment.  I'm not under any illusion that me and my life are so fascinating everyone's crowding round for a peek into the Nym household.  I really don't think anyone's that fussed by watching me killing time on my laptop or telling Tyger not to snatch toys from Baby Bear several hundred times a day.  It's hardly Downton Abbey.  I mean, I haven't actually watched Downton Abbey but even with my limited knowledge I'm pretty sure it doesn't involve green haired women checking Facebook and autistic preschoolers getting irate over younger siblings daring to touch their ride-on fire engine.

I still feel like I'm in a fishbowl, though.  It's no secret I'm not exactly a social butterfly; rather more of a...reclusive moth.  Actually, I really hate caterpillars so this whole metaphor is freaking me out a bit but basically I don't go out much or see many people outside my immediate family.  My parents have had the builders in to do a variety of things to the house over the last couple of weeks.  I don't like other people in the house.  I don't like other people to see me when I'm still in my pyjamas, when I want to relax (as much as is possible with the cubs), when I'm trying to deal with Tyger's meltdowns or Bear's tantrums, and when I'm on the toilet (yeah...I was on the loo when one of the builders appeared at the window - I thought perhaps he wouldn't have known it was me through the net curtain until my sister pointed out I'm the only person in the house with bright green hair).

So, I was already feeling a little sensitive about people watching me and judging me and - in particular - my parenting.

This is fine, right?
Bear isn't quite on the window sill yet...
I wrote a few weeks ago (here) about the fact Tyger now has an ASD diagnosis but how it doesn't really change anything for us right now.  Except, of course, I won't get challenged about his ASD by any professionals because they'll accept he's been officially diagnosed after a thorough assessment.  Right?

I'm guessing you know how this sort of rhetorical set up works and have figured out that's exactly what I'm dealing with.

I have had a few comments from Tyger's preschool about how the staff there haven't seen any of the behaviour mentioned in his reports and diagnosis but they have generally been supportive and proactive and to start with it seemed like honest feedback and nothing more.  But the play leader spoke to my mum last week and the conversation could not be construed as merely honest feedback.

She asked my mum (who used to be a play leader herself) whether Mum was surprised by the fact they hadn't seen anything from Tyger's reports at preschool.  My mum replied that she wasn't surprised at all and it is, in fact, very common for children with ASD to mask their autism whilst at school or preschool.  The play leader seemed surprised.

It is actually a problem many parents face when trying to get a diagnosis because schools or preschool settings can be very uncooperative when a child seems 'fine' to them, even when the parents are telling the school their child is not fine at home.  Having ASD doesn't make someone stupid.  A lot of autistic kids know they're different to their neurotypical peers and attempt to hide it as best as they possibly can.  They try really hard to blend in around other people: watching and mimicking, holding in the anxiety, stopping themselves from stimming (repetitive physical movements or sounds), and gradually becoming overloaded by all the sensory stimuli (noise of the other kids, lights, smells in the lunch hall, itchy tags in school uniforms etc.).  This is exhausting and often means the child will let out this big build up when they get home.  So, the teacher sees a 'normal', quiet, agreeable child...and the parents get the meltdown.

Tyger currently goes to preschool two mornings a week.  The afternoons of these days are hard.  Last week he literally came through the door of the house already verbal stimming and agitated and had a meltdown over something trivial within five minutes of being home.  The preschool don't see this behaviour.

And, it seems, the play leader may have come to her own conclusions as to why.  She didn't just ask whether my mum was surprised by their observations.  She also asked Mum whether Tyger behaved better for the Wolf than for me.

She might as well have said, 'I suspect Tyger is no more autistic than any other child at the preschool and the problem is Nym's parenting.'

This is pretty common view.  Many parents have been battling this notion for years but it's the first time I've been aware of it being directed at me.

It's not nice.

I should point out this is a good preschool with dedicated, kind employees (including the play leader who spoke to my mum; she is not some sort of monster) who care about the children.  It has an outstanding rating from OFSTED.  Tyger loves it there.

But they don't understand ASD.  Not yet, anyway.

If a decent human being with lots of experience of children who has their best interests at heart can fall prey to this cliched opinion, anyone could.  I don't yet know what I'll do or say in terms of Tyger's preschool but I do know I'll keep writing blog posts that talk about ASD in the hope they'll help to educate even one or two people out there.  Because that's a worthwhile cause.

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