A Million Pieces

Today my heart broke
Into a million pieces
As I watched you come last
In your running race

I saw from the start
That things weren't going well
That just like last year
You would come out broken

I could see it written
All over your face
The pain, the disappointment
At finishing last in the race

You tried to hide
The tears in your eyes
You told me to go away
And I was not surprised

It felt like the worst thing
To have put you through
You don't like sports
And it's a challenge to do

I wished I hadn't
Made you come along today
Forced you to perform
In some very unnatural ways

I tried to be positive
When we got dressed
We picked out some clothes
In green we were clad

I told you every point counts
For the house you are in
That you helped your team
Despite how it seemed

But really there were no words
To take away that moment
Because I could see your heart also broke into
A million pieces

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.

Autism burn-out

Today is World Autism Awareness Day. Yesterday I thought I might do something to "celebrate" - paint my face blue or bake some cupcakes topped with blue icing. Even make a badge. But it's the end of a long Easter weekend sprinkled with meltdowns and we're all spent in this household so I'm just going to go with what's on top...

In the same vein that autism looks different for every diagnosed child; every parent will have a different journey with autism. But, I do believe, that behind every child diagnosed with autism, lies a parent or parents with a broken-heart. I don't think this can ever be under-estimated. It is not fair to compare different "shades" of autism and to claim that just because one child is more verbal or appears more social than another child say with classic autism (that the general population is very familiar with) that their journey is easier for them - or their parents. Every parent with a child with autism is devastated - if not by the diagnosis itself - by the journey they went on to get that diagnosis and then of course life post-diagnosis.

Now my daughter is eight and well and truly immersed in school, it is frequently assumed by some that we're done with autism. That actually, she just had it for the first five years of her life and now she's cured.

I do not believe that autism can be cured personally. I do believe it can be controlled, managed and understood. I believe schools and other environments can set things up to make life easier for a child with autism. But it's for life. It may look different as children grow up and mature - but it will always be there, underneath the surface.

I really feel for the families whose children with autism require a lot of intervention and help - perhaps permanently, perhaps for the rest of their lives. My daughter is not one of those children -  her autism is of the invisible variety. The kind that doesn't get funding easily, the kind that is dismissed as not being "true autism." Although she has three different kinds of help at school right now; she spends large parts of her week without extra support in place.

For the first five years of our autism journey I fought, I explained, I justified and I advocated. This in itself was an extra job on top of managing a little person with autism. Last year everything came to a head and I had to give up the fight. I had to accept that not everyone will understand my daughter's autism the way I'd hoped and liked them too. I had to accept that I was burnt out and it was time to retire from advocating for autism. So I stepped down from my four year local position as a committee member with Autism New Zealand and I applied for full-time study for this year.

I am now three months into my study. A lot of my energy and time goes into that now. But autism lives on in our household and we certainly still go through some rocky phases. This Easter was one of them. After eight weeks of attending school full-time plus three afternoons last week at a friends house so I could start my first week of "teaching experience", there were meltdowns a-plenty. My daughter needs downtime and she hasn't had as enough of it as she needs over the last few weeks. Home is her sanctuary - where she can let it all out. 

I read this week about "autism burn-out" which occurs when those with autism try to conform and fit in - and then tire from their efforts. I certainly know this to be very real for my daughter. She is aware of her differences and will try to hide them - she will keep up with her peers and no longer wants extra breaks put in place for her in the classroom. She will ask for breaks at school at times now, when really needed.

But it exhausts her - doing the everyday normal kid stuff. There are so many things we don't do because most weekends are about recovering from her school week. She simply doesn't have the energy a lot of the time to do much except blob in the weekends. Attending a BBQ as a family means leaving early. In fact, social gatherings aren't regular occurrences in our household.

I think in my phase as an advocate for autism, I felt pressured to paint a merry picture of autism - to demonstrate that life can be almost normal with the right strategies put in place. Although this is true in some respects, in many ways our home life isn't normal at all. This is of course the side of autism that no-one sees in our circle of friends and family - the routines, the quiet time, the repetitive DVD watching, the spinning in circles, the flapping of hands, the meltdowns, the sleep disturbances, the nightmares, a child who grapples with both depression and anxiety at times; a child with potential mental health issues.

Not only do I believe the child with autism has autism burn-out - but so do the parents. Eight years of sleepless nights (they may not be every night  now - but there are still phases), living with a child who develops agraphobia at times and will not leave the house (especially during school holidays), and managing friendships that fall over is tiring. 

I love my daughter. Of course I do. But I also suffer from autism burn-out. There isn't much more I have to give at this stage to the cause. So that is why I've taken the year off to study - to have a different focus. But sometimes I have to face reality and address the bigger issues when they arise, as they have this weekend. It is simply my job as my daughter's mother. 

My husband and I went away for our first ever night away together since our daughter was born in February - one night and it was amazing. We haven't had a date since. We have respite care - we need to use it. Sometimes it is tricky to fit it in (especially with full-time study for me) but it is needed. I know behind closed doors there are many parents of autistic children who desperately need a break - to perhaps get out of the house and do something they can't do with their child with autism. Note to self: it's time to book in another date for ourselves.