Look into My Eyes

So, this is part two of my updates.  This time I'm covering Tyger (because I mention him sooo rarely...).

Tyger

Tyger had an appointment with a speech and language therapist as part of the diagnostic process recently.  It went pretty well.  She was lovely and told me she 'could see what I see' (i.e. Autism).  She gushed about Tyger quite a bit and about his vocabulary and language skills and said she'd love to work with a child like Tyger.  I suppose there's a chance she does this with every child and parent to put them at ease and get them on side but I - of course - believe Tyger is a child genius so I'm sure she was genuine.

Pretty much the first thing to come up was my old friend 'eye contact'.  Until we saw the paediatrician back in April, every health care professional with whom I brought up ASD trotted out the familiar line of, 'Hmm...well he makes good eye contact...'  This meant it came as surprise to me when the paediatrician mentioned a lack of eye contact in her report.  The speech and language therapist (or 'SALT') picked up on the fact it took Tyger a looong time after entering the room to actually look at her face.  And whilst he did give eye contact after that, it was sporadic and fleeting.  I think of it like trying to force two magnets of the same polarity together.  He'll look but his gaze swings away pretty quickly and it's an effort.  I never thought about how much of an effort until I was trying to cut his fringe the other day (for any non-Brits reading this 'fringe' is what we call 'bangs').

Now, I've cut Tyger's fringe many times and it has always been a struggle.  He won't stay still and trying to get him to look at me so I can make sure it's at least vaguely straight (I think it's unrealistic to aim for poker straight and completely horizontal but I do try to avoid the stairs or ramp across the forehead look as if someone might need access from his ear on one side to his scalp on the other).  It just so happened, whilst I wielded hairdressing scissors and promised a biscuit when we were done, my parents were having a look at the SALT report.  So, I was going through everything the SALT had mentioned at the same time I finally managed to get Tyger to look at my forehead for maybe 15 seconds (it doesn't sound like much but sit and count out 15 seconds - that's a looong time for a three year old to sit still) and suddenly he looked shattered. Honestly, his eyelids drooped, his face went slack and I thought for a moment he might fall asleep there and then.  The revelation hit me: looking at people's faces and especially eye contact are physically draining for him.  I knew it was 'hard' but that's quite an abstract concept and I'd sort of assumed it was hard in the same way it's 'hard' for me to not eat Peanut M&Ms if they're just sitting there.  Realising it actually tired him out was a bit of an 'ah ha' moment (and made me feel a little guilty).

Come the end of the appointment she reassured me she 'saw what I saw' (i.e. ASD)., although said it was 'subtle'.  He'd give a doll a drink (with prompting) but was concerned there wasn't any milk in the cup.  He'd bath the doll (with more prompting and Tyger making excuses about being too busy) but was perturbed by the fact the doll's shoes wouldn't come off (they were painted on).  She thought it was interesting, since Tyger is so advanced with his language and vocabulary, to note the aspects of his language that are not advanced.  Namely, anything social.  He comes out with all sorts of adult sounding language and phrases but still uses 'he', 'she' and 'that' interchangeably.  I didn't disagree with her but Tyger's ASD is not so subtle when he screams for 20 minutes to the point where he makes himself throw up because I mentioned the guy who cut my parents' hedge is on holiday.

The next hospital appointment he had was about a cyst under his eye, which just won't fracking go away.  It's been there for months and is as persistent as Baby Bear when he's decided he wants some chocolate buttons (though, the cyst doesn't keep pointing to the basket with chocolate in and going, 'Ugh, ugh, ugh, ugh,' before crying and crying when I say 'no' then starting all over again - the cyst is just...there).  I hate these appointments because you're triaged as you come in so we tend to end up waiting about an hour before seeing a doctor.  And there are no toys in the waiting room.  And no hot drinks allowed.  And now Bear won't sit nicely in his buggy for the duration so there are TWO of them running around wreaking havoc.

However, Bear running around and wreaking havoc turned out to be a big bonus this time because he was kind enough to trip and sort of smack his forehead off the floor.  He screamed.  I mean, he really SCREAMED.  And he just kept on and on.  Doctors and nurses were trying to call patients in for their appointments but nobody could hear what they were saying.  It would have been horrible...if it wasn't for the fact it got us bumped to the top of the list!  Hooray for Baby Bear!  I am tempted to stick a foot out as Bear runs past at the next appointment...

Anyway, the doctor we saw after Bear's spectacular fall was fine...except he mentioned the hair.  I wrote at length about Tyger's long hair in my blog post Yes, I Bought My Son a Dress.  His hair's even longer now and the comments and confusion have in no way decreased.  The doctor just couldn't seem to help himself.

'I called you in and I was so confused.  I checked the notes here and it definitely said he's a boy.  I thought, 'What's going on here, then!?''

What is going on here?  More Goram sexist bullshit!  I am just astounded a doctor who must see hundreds of patients a week is so utterly baffled by a boy with long hair.  My hair is green at the moment, by the way.  Bright green.  I have not had a single comment from any stranger about my hair.  It is obviously in no way noteworthy (or they realise how rude it is to comment on a stranger's appearance when that stranger is an adult...) but a three year old boy with long hair??  That warrants comments pretty much every time we go out (which, granted, is not often).

There you go.  You can judge for yourself.

Then there was the most recent hospital appointment (seriously, the last two weeks have seen an inordinate number of trips to the hospital, which would be less of an inconvenience if Tyger didn't get car sickness...).  This one was the last assessment for Tyger before his diagnosis and was with a child psychologist.  I was expecting a similar drill to the last two appointments concerning Tyger's diagnosis (questions directed to me about how he behaves in various situations and some play with Tyger whilst observing him).  That's not what happened.  She informed me, as far as she was concerned, she should be there to help with behaviour and asked how she could help.

I was a little taken aback (where were the questions about how he interacted with people and how his diet is and what his interests are and how he reacts to change?...where were the questions for Tyger and getting him to perform certain tasks?).  I put forward some of the problems we're been having and pretty much everything I mentioned was met with, 'Well, all three-year-olds do that...'  I started to panic.  Did she think I was overreacting?  Did she think I'm just a terrible parent who struggles to cope with perfectly 'normal' preschooler behaviour?

This child pyschologist was the one who diagnosed my sister.  My mumcame out of that appointment completely nonplussed.  She didn't know whether my sister had been diagnosed, she didn't really have any idea what had happened.

The child psychologist openly says she suspects herself of being on the spectrum.  I think, perhaps, she doesn't see the point in telling parents their child has ASD when it was the parents who brought it up in the first place.

Whatever the reason, I was unnerved until we were leaving and she explained she'd tell the paediatrician her recommendation was an Asperger's diagnosis.

Then quickly ushered us out of the door!

Now it's a case of waiting...but I'm hopeful.

Linked with:

Am I Labelling My Son?

A couple of conversations I've had recently have made me consider the issue of whether seeking a diagnosis in young children for things like ASD, ADHD, ADD etc. is 'labelling' them and should be avoided if possible.

I think parents worry because there's still such social stigma surrounding autism (I'll talk about this in terms of ASD just because that's what Tyger is being assessed for but it could easily apply to other disorders) and they don't want their kids to be pre-judged.  From my extensive research (by which I mean browsing on parenting forums and reading blogs) I'm guessing there are three types of judgement they're worried about.

Firstly, there's the 'Maybe we won't invite the autistic kid to little Jimmy's birthday party in case he flips out and brains one of the other kid's heads on the slide because that's the sort of thing they do - even though I know they can't help it, bless them - and I also hear they multiply when you get them wet so best not to bother' brand.  Basic ignorance.  Not necessarily malicious but obviously damaging all the same and when it's your kid not getting invited to parties even though you know fine well he's never smacked another kid's head off a slide, I imagine it's heartbreaking.

Secondly, I'm sure parents are worried about other children and how they might treat a kid diagnosed with autism.  Kids pick on each other because they wear glasses, are overweight, have the wrong clothes etc. so why add a shit load of fuel to that already potential bonfire?

Thirdly, there's the king of moron who thinks (or if they're incredibly rude morons - which is a common subset of moron - actually says) something about how diagnoses of autism has risen along with a decline in discipline and nine times out of ten supposed 'autism' is just an excuse for bad parenting.  I won't bother explaining why that's a really stupid and uneducated viewpoint to have because that's a blog for another day and if you have that particular opinion: 1) there's plenty of articles and other people's blogs on the subject on Google, 2) you're probably not open to changing your mind because of pesky 'facts' anyway and 3) why the hell are you reading my blog?  Frack off.

The thing is: getting a diagnosis doesn't make your child autistic.  Sometimes it seems like parents of undiagnosed kids think of them as Schrodinger's Aspie; like until an actual diagnosis they both are and are not autistic.  The truth is if they have ASD, they have it whether or not they actually get diagnosed.  I could decide not to get a diagnosis for Tyger in case it affects the way people see him but he'll still obsess over hoovers to the point where he cries when a hoover advert comes on TV because he 'needs' it (yes, that happened), he'd still give any stranger who walked in the house a hug (whilst naked) and scream when they left because they're his 'best friend', he'd still refuse to eat any food with blemishes, he'd still start up a long wail to drown out other noises he doesn't like, he'd still want plain spaghetti for every meal every day...and people notice these things.  He doesn't have a diagnosis but that doesn't change his behaviour and without an explanation they may write him off as 'weird' or 'naughty'.

And I think the same goes for other children.  Children are not stupid.  They recognise when someone is 'other' and, yes, unfortunately that someone is often punished for it.  But children also aren't necessarily cruel - as much as the saying indicates otherwise - and whilst some will pick on the 'weak' they will do that whether a child has a diagnosis or not and a diagnosis might just make some of the kinder kids more understanding and sympathetic.

That covers other people but I'd guess parents also worry about what the kid will make of it and whether it will make them feel ashamed or upset to know they're autistic.  My sister was a teenager when she was diagnosed with Asperger's so she fully understood having it made her 'different' and may open her up to a load of bigotry and ignorance from other people.  She was - and still is - at an age when social acceptance is a top priority for most people.  But far from being upset by the diagnosis, she was relieved.  She's a smart girl: she already knew she was different to most other people and she found it baffling.  All the diagnosis did was explain why she was different; why she was obsessive and anxious and struggled in social settings.  It also - importantly - meant she received a whole new level of support at school.

I have experienced something similar, if not as pronounced.  I'm not on the spectrum (at least not far enough along it to be diagnosed) but I do suffer from depression.  It's not the same thing but it is afflicted with a lot of the same social stigmas and misunderstandings as ASD.  When I was actually diagnosed with depression I was incredibly relieved.  Relieved because it turned out there was a reason for the way I felt other than because I was the human equivalent of Marvin the paranoid android and it wasn't my fault.  I know one of the big differences between depression and ASD is depression can be treated whereas - as yet - there is no treatment for ASD but there is at least support available (especially for the school years) and simply understanding there is a reason you are the way you are is pretty powerful on its own.

Some people favour the 'wait and see' approach to diagnosis.  If the suspected disorder isn't a current problem or it's at least being managed at the moment they don't see the point in going through the - admittedly often long - diagnostic procedure when it won't actually change anything.  I get that.  And I get that not pursuing a diagnosis isn't the same as not doing anything to support a child's needs.  I guess, after watching my sister go through most of her schooling without anyone realising she was autistic, I'd rather be proactive.  Right now a diagnosis would change nothing for Tyger and even once he goes to preschool after the summer it's unlikely to change anything.  But once he starts at school he may need extra support and that support may only be gotten if he has a diagnosis.  It seems inevitable to me he'll struggle at some point and I want to have already done as much as I can before then so any help he needs can be accessed as soon as possible rather than having to wait for months - or even years - before we even get to the point of discussing what extra support can be put in place.

And nobody needs to know.  There is no onus on a parent (or the child) to tell other parents or friends or family members or strangers in the supermarket about the ASD.  But if you decide things will be easier for your child if certain people do know, that option is still there.  And it's certainly nothing to be ashamed of.  I'm not about to write a Disney song all about accepting yourself for who you are or anything but if you suspected your child was short-sighted you wouldn't avoid getting it looked at just because wearing glasses might get the child teased.  ASD will continue to be viewed as something to be ashamed of if we continue to act like it is.

Starting the Diagnostic Journey...and the Yellow Toaster

Tyger had his first appointment in the long road that is ASD diagnosis at the hospital on Monday.

Of course he was up for two hours in the middle of the night on Sunday because it's an unwritten baby and toddler rule that they must allow you as little sleep as possible for days when you want to be alert and well-rested.

Despite the usual stress of trying to leave the house with Tyger and Baby Bear, plus the added stress of finalising and printing the six page document I'd made about Tyger (no, really), we were in the car and ready to go on time.  Mum drove us there and the traffic wasn't too bad at all considering the time of day (morning rush hour).  It was smooth sailing - or driving - right up until the roundabout practically next to the hospital, where the traffic slowed down considerably.  Have I ever mentioned Tyger gets car sick?  Well, Tyger gets car sick.  Badly.  He tends to get sick about 20 minutes into journeys...the hospital is about 20 minutes away.  All I'll say is it was very unfortunate we got stuck at that roundabout.  Very unfortunate.

We made it to the children's ward with Tyger in a change of clothes and as much of the sick cleaned out of his hair as I could manage with baby wipes (in the glamourous world of motherhood you get used to that sort of thing along with having small people spit things they don't like out into your hand, wipe their runny noses on your clothes, leave bits of fruit and cheese hidden away under sofas/in toy kitchens for you to come across at a (sometimes much) later date - the sick in the hair thing wasn't that bad, really).  Tyger immediately tried to play with a small boy who looked terrified and - with his mother - backed away to the seats.  Tyger tried to follow so I ushered him over to the toy corner away from the poor kid.  Knowing why Tyger was at the hospital meant I was more sensitive than usual as to why other kids might be there and I felt if the poor boy wasn't comfortable with a child he'd never met enthusiastically forcing friendship on him it was important I let him have his space.  The distraction technique worked a little too well, though, and when the nurse came to weigh and measure Tyger he did not want to leave the trucks and cars he'd found in amongst the toys.

Normally, when we're out somewhere, I'm anxious about how Tyger will react and behave.  There's always the worry he'll suddenly start screaming and kicking, that he'll break things or run off, that he'll throw himself on the ground and shout, that he'll try to hurt someone else or himself.  I think it's a worry many parents of children on the spectrum face but the one time they want their child to exhibit these behaviours is when they're being assessed by the professionals.  So, the fact Tyger got angry and upset over being taken away from the toys, the fact he'd been up for two hours during the night and the fact he'd been violently sick - several times - on the way to the hospital were not exactly unwelcome.  The nurse was obviously used to dealing with small children.  We managed - pretty much - to weigh him but she said measuring his height wasn't worth the distress and he could go back to the toys.

However, when the paediatrician called us in Tyger didn't make much of a fuss because the assessment took place in a room he'd already been trying to get in (and the fact the doctor told him he could take a tractor from the toy section helped).  He was thrilled to realise there was a Thomas the Tank Engine wall sticker on the back of the door.  I was thrilled to realise I'd be sitting with my left side towards the paediatrician so she wouldn't see the volcano sized spot on my right cheek.  We have different priorities.

I won't say Tyger was as good as gold.  For one thing, I doubt you could say that about any toddler.  For another...I don't get the simile.  Surely the 'good' we're talking about is in reference to good behaviour.  Gold - being, you know, inanimate and all - doesn't behave in any way.  So, is the comparison to gold being 'good' in the sense it being valuable?  I don't really think the two are alike at all.  Is the phrase simply so popular because of its alliterative quality??  Should we start saying 'as tired as a teapot' and 'as skinny as the sky'?  They both have alliteration going for them and make about as much sense as 'as good as gold'.  I guess I could search it and would probably find out I'm completely missing the point and it does make sense but I feel I've already spent entirely too much time on this already.

Anyway, I have been told it's common for autistic children to decide the one time they'll be on their best behaviour is when they're being assessed.  I also know Tyger tends to love going to new places and meeting new people so despite the lack of sleep, the roundabout incident and his normal behaviour I anticipated him being more genial than usual.  He is still Tyger, though, and the paediatrician did note a few moments of...non-compliance.  He was happy to build a tower with building blocks when she asked him but when she wanted him to try to make a bridge he insisted on lining all the blocks up and making a 'train'.  She tried again...and again.  She tried taking away most of the blocks so he only had the three she wanted him to use and showed him several times how to make a bridge.  He would not make a bridge.  He also refused point-blank to jump when asked.  She even tried tricking him by moving on to other things he was willing to do and then coming back to the jumping and it almost worked but he caught himself just as he bent his legs.  I don't know why this was a sticking point for him.  He was happily jumping along to a song this morning but once he decides he's not doing something it's just not going to happen.

So, the paediatrician and I discussed Tyger in depth.  She was very impressed by my six pages listing all his traits and behaviours (lists FTW - do people say that anymore?  I feel very out of touch, not helped by the fact I asked my 14 year old sister what she meant by 'shipping' recently to be told rather witheringly that 'it's an internet thing') and said it would be a great help to her when she came to write the report.  Whether she meant that or viewed me like that annoying kid in class who actually puts their hand up when asked 'any questions?', I don't know.  I'll tell myself she was being genuine.  The doctor got Tyger to perform various tasks and gave him a physical and he played with the toys whilst we were talking.  There were cars, a Thomas toy, a plane and loads of things he's interested in...so, of course, the one thing he seemed particularly taken with was a yellow toy toaster.  There was no bread to go in the toaster.  In fact, most of the food from the toy kitchen seemed to be missing.  But he loved the toaster all the same and asked - more than once - if he could take it home.  He made the paediatrician and I toast and bagels.  He has also told me several times since that he needs to go back to the doctor to see the yellow toaster.  So, guess who's got a toy toaster sitting in my bedroom ready for his birthday next month?  No doubt, he won't care by then.

We discussed the next steps and the paediatrician agreed there was definitely enough evidence to go ahead with a full assessment.  He'll see two more health care professionals (one is the child psychologist - we already have the appointment through though it's not until July - and the other is likely to be with a speech and language therapist) and then all three of them will discuss their findings and decide on whether to give him a diagnosis.  She said it's rare for a child under four to be given a diagnosis and it's more likely - if they decide he does have ASD traits -  they'll review it again in a year or two, which is fine.  I understand they have to be thorough.  It's hard with toddlers because so many normal toddler behaviours are similar to ASD traits and it might not be clear whether any given behaviour is connected to autism until they're older and you can see whether they grew out of it.

For now we'll go to the appointments, I'll see if it's easier to get travel sickness tablets for Tyger when he turns three and I'll keep you posted on how much he likes his toy toaster.  It even comes with toy toast!