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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I'm Not Crying...No, Really!

Tyger had a home visit from his key worker and the SENCO (special educational needs coordinator) early this week in preparation for him starting preschool.  It was just a quick visit to see him in his home environment and to let him meet them again before the induction.  It went well.  Tyger even agreed to wear clothes...although he removed all of said clothes in order to change into a Gruffalo onesie part-way through the visit because...it...was...essential...or something.  Also, the 't-shirt' he was wearing was actually a pyjama top because that's what he wanted to wear and he didn't have pants on under his trousers but he agreed to wear clothes, however briefly.

The next day he had his induction.  I had to take Baby Bear along because my mum - who lets us all live with her/my dad/my sisters rent free while we're saving up a deposit, cooks dinner most nights, often watches the cubs whilst I shower/make their dinner etc., and generally leads a pretty selfless existence - had the audacity to be unavailable to babysit Bear due to acting as taxi to my sister.  I know, the absolute cheek of some people!  So, I didn't really get to watch Tyger much because I spent the first half hour trying to stop Bear from scooping sand from the sand tray onto the floor and the second half hour trying to stop Bear from scooping soapy water from the water tray into his mouth (actually, that's a lie; I spent about two minutes trying to stop him and then let him get on with it since it's no different to drinking bath water and both boys have consumed litres of that with no ill effect (I'm pretty sure there's no link between drinking bath water and autism)).

All that's left is for Tyger to start.

And I'm not upset by that.

I've read a lot of very good blog posts in the last few weeks about children starting preschool/nursery/school and the consensus seems to be this is something upsetting.  When I was at the induction, one of the other mums made a joke about trying not to cry on Tyger's first day.

Once again (like in my blog post Babies Don't Care About Birthdays) I'm left feeling like I'm missing something.  I'm not upset about Tyger starting preschool.  At all.  In fact, I'm looking forward to the peace and the opportunity to spend some one-to-one time with Bear.

There are several reasons I can think of for this disparity between other people's emotions on the subject and my own.

It may well be in part because unlike school or some nursery places, he won't be going every day.  He will start off doing only two mornings a week with a view to working up to two mornings plus a full day.  However, the mum who told me to try not to cry knew how often Tyger was going to be attending and her own daughter is doing similar hours.  I also don't think I'll feel any different when it comes time for Tyger to start school.

Perhaps I'm just more heartless?  Or - maybe at least - more practical.  This is simply the next step in parenting.  It should be good for Tyger and learning some independence is a positive step for a child.

It might also be Tyger.  Of course I feel the same unconditional, totally staggering love for the cubs most parents feel for their children...but Tyger is hard work.  Really, really hard work.  Tyger's ASD makes simply being near him completely overwhelming at times.  Whilst he's loving and intelligent and funny and thoughtful he's also a violent, unreasonable, unpredictable wall of sound.  Spending all day, every day, with him is exhausting and I am more than looking forward to having a couple of breaks a week from him.

I think his ASD also highlights something for me that parents of neurotypical children might not get.  The health care professionals who have been assessing Tyger have used words and phrases like 'subtle' and 'end of the spectrum' to describe his ASD and I think it likely he'll end up with a diagnosis of Asperger's (since this is still used in parts of the UK).  So, Tyger's chances of leading a relatively 'normal' life and going on to live independently are reasonably high.

High.  But by no means guaranteed.  I don't know how Tyger will cope with school in a year's time.  I don't know if he'll make it through secondary school with much in the way of qualifications and how often he'll even manage to attend.  I certainly don't know whether he'll be able to hold down a job and move away from me and the Wolf.  So, the fact he's excited about going to preschool and the staff have been so amazingly understanding and proactive about his autism - even without yet having a formal diagnosis - is something I can only see as a good thing.

Or maybe I'll be in floods of tears tomorrow after dropping him off.  I guess we'll find out!

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