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!

My Sister is a Plague Bearer

My sister is a plague bearer.  She always seems to get ill and pass it on to everyone else in the house.  Because of her plague bearing the Wolf, Tyger, Baby Bear and I have all had a cold this week.  Add to that the stomach bug she passed on to Tyger, who spent the early morning of Thursday puking, and it hasn't been a very fun week.

Tuesday was a hard day involving Tyger hitting and pushing Baby Bear even more than usual, throwing toys, shouting, crying...all the normal stuff, actually, but just more.  So much more.  The day - finally - ended with a bath.  Tyger was playing with his bath drum, Baby Bear with another bath toy and things actually seemed pretty calm.  Tyger mumbled something I didn't quite catch so I asked him to repeat it and he looked at me sweetly and said, 'I love you.'

Aww.  These are the moments, you know?  I said, 'I love you too.'  We'd had such a tough day and I'd been so frustrated and angry for so much of it but that moment just totally made up for...and then he stabbed me in the eye with the drumstick.  What.  The.  Smeg??

Wednesday was no better (possibly worse, actually, despite the fact it involved no drumsticks whatsoever) and Thursday was the sicky day, which was actually the best day of the week because - firstly - it's much easier to overlook bad behaviour and generally feel more sympathetic towards a child who's been sick and looks all tired and drained and - secondly - I think Tyger was just too tired to be a pain.  After the initial frenzy of cleaning up sofas, the floor, Tyger, his blanket and a towel the day calmed down significantly and mostly involved Tyger demanding food.  Constantly.

On Friday, in between lots of screaming, Tyger managed to get his hands on a tube of my dad's muscle pain cream and a little pot of my lip butter and smear them all over the sofa, table and himself.  I knew something was wrong when I walked into the living room to him saying, 'I dried my hands.'  When I put my cardigan on later in the day it became apparent what he'd 'dried' his hands on...

Baby Bear has also been ill (just a cold - no sick as of yet) and so has been a bit on the clingy/grumpy side.  As well as this, he has been waking up between 3.30-4am every morning and pretty much refusing to go back to sleep or - possibly worse - only going back to sleep about 20 minutes before Tyger wakes up.  After about three hours sleep last night I'm running on tea and chocolate today.  And maybe cake.  Hang on...definitely cake.

Soooo, to remind myself I don't really want to put my boys up for adoption I'm just going to write about a couple of things that are cute but not really worthy of a full blog post.  Let's start with Tyger.

I love when toddlers get to the point where you can have real conversations with them.  They say some funny stuff.  You know that.  There are whole programmes and internet pages devoted to it.  That funny stuff is largely what gets me through the day (you know, other than tea, chocolate and cake...and Peppa Pig and Thomas the Tank Engine).  Tyger's at that point where he can talk in full sentences and have reasonably in depth conversations with you but still trips over some of the pit falls of the English language.  For instance, I was singing the zoo version of 'Happy Birthday to You' a couple of weeks ago.  I assume everyone hears this at some point in their school life but just in case I'm wrong it goes:

Happy Birthday to you.
You live in a zoo.
You look like a monkey,
and you smell like one, too.

Sophisticated stuff, I know.  Every time I sang it, Tyger added 'three!' to the end and I could figure out why until my mum pointed out he obviously heard the last couple of words as 'one, two...' and was just carrying on the random counting.  I don't know what 'one, two, three' smells like but it's probably better than a monkey.

Along a similar line, Tyger has an interactive book with a puppet monster built in to each page.  On one page the reader is instructed to encourage the puppet to open his mouth for cleaning his teeth.  The suggestions for how to go about this end with something along the lines of, 'Or you could try telling him off.'

We have dogs.  One of the commands we use with them is 'off' for when they're on something they shouldn't be (meaning, when the demon husky is on the sofa) or when they jump up.  Tyger hears 'tell him off' as 'tell him, 'off''' and shouts 'Off!' every time we get to that page.  Why he thinks the best way to get a purple monster to open his mouth is to tell him to get off the sofa isn't clear but it makes me laugh all the same.

The last example is when we were eating lunch one day and I asked Tyger if he was going to eat his hot cross bun.  He got very angry with me...because it wasn't a hot cross bun.  I was perplexed by this until he told me it wasn't hot.  I guess it was just a cross bun.  He probably thinks those things have anger issues or something.

On to Baby Bear.  Baby Bear seems to have finally decided on a favourite toy/comforter.  Tyger never really was one for having a favourite toy as such (other than his hoover - which isn't really something that can be taken to bed and cuddled and unfortunately he's not that fussed by the cuddly hoover I got him for that very reason!).  He likes whatever he has received most recently but then moves on to the next thing.  He's very obsessive but - again, other than the hoover - that hasn't really extended to toys in any long term way.

My sisters both had comforter type toys - the older one in particular needed her bunny to get to sleep every night and had to take Bunny everywhere (often resulting in the Gorram thing being lost or misplaced).  It was inconvenient in some ways but also very sweet and helped her to get to sleep at night, which was a huge relief to my mum since my sister pretty much wasn't put down for the first nine months of her life (and still spent most of that time screaming).  So, I was hopeful Baby Bear might develop an attachment to a toy that would help his terrible sleep but after he'd had his first birthday it seemed unlikely...until a few days ago when he started snuggling up to a toy dog every time he went down for a nap.  It was bought by my mum when he was first born and is called Fergus (because I got Baby Bear to hit the keyboard on my laptop and 'F' was the first letter he typed so I went with an 'F' name).  He turns his head so his face is pressed into Fergus, cuddles him and smiles.  As if that weren't enough to make me produce all those soothing 'aw, look at the baby' hormones, he was upset when I got him up from his nap the other day until I handed him Fergus, when he immediately calmed down and spent the next hour snuggled up with the dog on my lap.

He may still be waking at some ungodly time in the morning but Baby Bear is slowly improving with his sleep...and hopefully I'll get lots of cute photos of him and Fergus in the years to come.

Okay.  That should be enough to get me through the next week without calling an adoption agency.  Hopefully, next week's post will be a little more coherent and structured and a little less like the ramblings of a sleep deprived crazy person.

Children Make Liars of Us

If you don't have any kids, I'm sure you at least have a vague idea of some of the things you would/wouldn't do if you did have kids.  You know, like:

'I would never let my child make that sort of racket in a restaurant!'

'I'd never let my child sleep in my bed!'

'If I had children, I wouldn't let them watch cartoons before they're three.'

'Why do parents give kids under two chocolate?  There's no need.  My kids won't be having anything like that until they're teenagers.'

'When I take my kids to Sci Fi conventions, I'll make sure their costumes are more accurate than that!'

You'll have had some sort of thought along these lines at some point.

Now, I'm certainly not claiming all parents fail to do all of the above.  Lots of parents have very quiet children (lucky buggers!), some parents genuinely don't ever co-sleep, some parents are pretty strict when it comes to TV, there are parents who ban all foods with refined sugar from their homes and I'm sure there are parents who take the business of Sci Fi conventions very seriously and make sure their little Jayne Cobb has the right colours on his knitted, earflap hat.

However, there will be something they thought they'd do that they go back on once they have real little people to care for and bring up.

Why?  Well, several reasons.  A big reason for relenting in the earlier days of parenthood is exhaustion.  Everyone knows babies can make you tired and everyone knows when you're tired you're a less efficient human being.  Think Discworld troll in a warm city (and if you don't understand that reference you should immediately find a Terry Pratchett book and read it.  Seriously, I'll wait.  I don't care if you're supposed to be working right now or you need to go and collect the kids from school in five minutes; just find a Discworld book (any - though, I'd prefer you start from the beginning) and start reading.  You'll thank me...and then you'll curse me when you get to the end of the books because we have been robbed of any more Discworld by a skeleton in a black robe who communicates IN CAPITAL LETTERS).  Anyway, as I was saying, sleep deprivation turns you into troll and I don't mean the kind who frequent the comments sections of YouTube (or 'the bottom half of the internet' as a friend calls it) and there is a point where you feel you are going so slowly you'll grind to a halt and turn into solid stone unless you take the baby into bed with you so you can get just half an hour of sleep or turn the TV for an hour so you can have a cup of tea and go to the toilet.

Sometimes you change your mind because you read new research or an interesting article and you simply decide you were wrong before.

A lot of the time it's a case of - and I'd probably have said I'd never use this phrase before I had kids - 'picking your battles'.  Children have this nasty habit of having their own personalities and it's much like a lucky dip where you don't know what you're going to get when you dip...or when your partner...dips...eeeerm...this simile is going to weird places now so I'll stop there.  What I'm trying to say is you might get a laid back sort of child.  An easy-going type.  One who - when you say it's teeth cleaning time - just accepts this, goes with you to the bathroom and stands 'Ahhhhing' and 'Eeeeeing' at the right parts and that's that.  Or one you might get one who's not exactly easy-going but is shy and quiet so will do as their told even if they're unhappy about it.  Or you might get one who - when you say it's time to clean his teeth - replies with, 'No cleeth tean!  No cleath teen!  My no like cleeth tean!' every single day.  And amusing as this cute Spoonerism is, it can grind you down when every morning there's a battle over 'cleeth teaning' regardless of whether you persuade, joke, grab him and march him to the bathroom, try to compromise and bring the toothbrush to the living room, bribe, make it into a game, buy an exciting new toothbrush...

Of course, teeth cleaning is non-negotiable.  It has to be done so I do it despite the battle but there are other similarly wearing daily fights that just aren't as important.  Wearing clothes, for instance.  I've given up making Tyger wear clothes at home unless he's sitting on his booster seat at the table and I worry about the strap chafing him and he complains about the plastic sticking to his skin.  And TV.  I used to only let him watch a specific amount of TV a day.  Now, when it gets to 10am and he's already got bags under his eyes and we've just had the same argument about whether we're going outside when it's blowing a gale and peeing it down out there and Baby Bear is napping so no, of course we're not going out right this moment! five times in a row - resulting in him screaming, throwing things and spitting every time even if I try the good old distraction technique - I will stick an episode of Thomas on the TV and feel no guilt over it.  I don't even cringe at the weird theme tune and lament the disappearance of the old Ringo Starr Thomas theme tune anymore.  I enjoy my cup of tea and know the benefits of not clubbing Tyger to death with the wellies he brought me the third time we had the argument outweigh the detriment 15 extra minutes of TV will have on his development.

There are lots of reasons you end up doing at least some of those things you swore you'd never do but it boils down to the fact - as patronising as it sounds - you honestly do not know what it's like to be a parent until you are one.  Yes, even if you babysat your younger siblings a lot when you still lived with your parents or if you have to look after your niece every week when your brother's at work or if you're a teacher or you really really love your dogs as if they were children.  You just don't.  And when you have them, your children will make a liar of you.