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!

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