Behind Closed Doors

One day I want to write a book with the same name as the title of this post - Behind Closed Doors. It will be about our day to day lives - everything we do (and don't do) so Amy can "fit" into the world out there and maintain an emotional equilibrium as much as possible.

I feel autism is misunderstood by the greater community a lot of the time and that Amy doesn't match with what many perceive as "real autism."

It seems some think she's just a bit autistic, not that far down or up the spectrum (depending on how you view the spectrum), should have been diagnosed with Aspergers or perhaps isn't autistic at all. (Oh really).
These interpretations mean the behind-the-scene stuff is not taken into consideration at all.

The thing is, just like neurotypical children, autistic children grow and change. They reach milestones, mature and simply get older. So the older Amy gets - the more she appears to be just like other children. And she is like other children in many ways of course. But there are differences. Many of them unseen and understood only by her parents.

Some behaviours have dropped off - though not completely. They do seem to be lurking in the background if Amy's day or week isn't managed in the way it needs to be.  She is a lot more self-aware and perhaps internalises her anxiety and many emotions (very typical of autistic girls) more than ever. But her true feelings eventually come out at home; in some shape or form.

Amy's doing well at school and in many ways is a success story as far as inclusion and mainstreaming goes. But Amy's sensory issues and high anxiety levels constantly need to be managed. This means there needs to be a lot of downtime/quiet time and days and weeks cannot be too busy.

Every now I then I mix it up - just to see if we can branch out a bit from what can feel like a very small world. Sometimes that goes fine. We just have to balance it with even more downtime/quiet time. But sometimes it doesn't work at all and plans backfire. Spontaneity doesn't exist in our household at all.

Friends have pretty much become conditioned to not drop round out of the blue. It happens on occasion. But most of the time the few social interactions we have with others are planned.

We went away to Hanmer Springs a few weeks ago as I felt, we did need a shake up in the form of a change of scene. We couldn't have timed it better. We arrived in Hanmer Springs in time of a huge dump of snow. We even woke up to snow falling on the Saturday morning! Amy loved it and wanted to go and play in the snow as much as she could (it can be a challenge to get her outside, away from the safety and familiarity of her screens).

Trips away like this allow us to feel like a "normal" family for a few days - having fun, going on adventures.

Amy has been doing jazz since she was six years old. She started with ballet at the age of five (her idea) but moved on to jazz after seeing the jazz girls on stage at the end of the year production. She's been in three end of year dance concerts all up (one for ballet and two for jazz) and two mid-year dance productions. (one was this week). She's also completed two medal tests. All this is quite remarkable for a child who struggles with sensory overloading every single day. But she continues to want to do it and I've never pushed her - only encouraged. She has the opportunity to do her first jazz exam in September and her dance tutor has recommended she has an "assisted pass" which basically means she will pass regardless of her performance. Amy made the choice to enrol for the exam and the assisted pass has taken some of the pressure off.

She's had the same dance tutor for over three years (minus a couple of terms in which she tried hip hop with another tutor and then volleyball at school) and I trusted her opinion and recommendation around going with the assisted pass. She has been both supported and understood and this has meant she'll keep going with jazz for now.

To have Amy in the dance production earlier this week she needed to have the afternoon off school to decompress before heading off to jazz for two hours of waiting, watching (the rest of the production) and then going on stage towards the end of the production. Amy did great. But she was exhausted and it did throw off her week. I didn't worry about jazz last night as two nights out during the last week of term would have been too much.

It seems to be the way things go around here - when we do something extra outside of the usual school week - a bit of time is taken off. Even this term Amy has had a few mental health days or afternoons. Term Two (the Winter term) is certainly the term in which she gets the most tired.

I have learnt over the last couple of years that although Amy needs the school holidays to rest; she also needs to be kept relatively busy. If I don't put things in place before the holidays start - then she is unlikely to want to go anywhere and we end up being at home a lot. Too much.

So I've used both the local autism holiday school programme (only one morning a week) since last year and her school holiday programme this year. She seems to enjoy both and gets to mix with other children and try new things then comes back home and blobs. I mix with this up with a few quiet days here and there where we might just catch up with one friend or do our own thing. We have extended family coming to stay in the second week of the school holidays and although Amy enjoys these visits; her routine is affected and she doesn't get the downtime she needs to stay on equilibrium.

I've been looking into this whole notion of downtime a bit more recently and came across the term "shutdowns" which is simply another term for what I've described as downtime. It's a way of managing an overload of stress/sensory issues and if not respected or given can lead to meltdowns. It is because we allow the shutdowns to occur at home on a daily basis; that the meltdowns are minimised.

I went to a seminar a few years back with Tony Attwood and he said for many autistic children they need four hours of downtime to every one hour of stimulation!  Which explains why it is that Amy takes so long to unwind after her school day every day. And why the afterschool activities have to be kept to a minimum.

We do okay. But our lives are structured around Amy's "sensory diet". It is not until others come to stay with us or we stay with others that we are able to see just how much goes into keeping Amy's equilibrium maintained behind closed doors.