The Early Days - Babyhood to Expulsion from Gymbaroo

Nobody realises that some people expend tremendous energy merely to be normal
- Albert Camus

At a friend's house yesterday we talked about my blog and I realised that I have talked a lot about Robin, how much we love him and his progress so far, but have avoided or glossed over some of the earlier experiences that we had as parents, our thoughts and feelings as well as those of our immediate family.

In Bridget Jones' Diary, Bridget refers to 'smug marrieds', I will go one further and use the term Smug Mothers. I was one. We were the perfect parents. We had a smiling, happy baby, who turned into a smiling, happy toddler. She always did what you asked her, and always behaved nicely. It was all too easy to look around at other children who weren't all those things and give their poor demented Mother about to tear her hair out a weak smile as if to say 'you poor thing, if only you had a child like mine'. We were in for a wakeup call and 'smug mother' was about to come and bite me later at Gymbaroo.

Robin made his appearance into the world on a very wild and stormy night. I remember Paul dropping me at the Maternity centre in a howling gale and driving off to park the car. I was in tracksuit pants and a dressing gown, holding my overnight bag, hoping that someone would hear the bell and open the door. Robin's birth was uncomplicated and we came home the following day.

He cried a lot and wouldn't settle no matter what we did. Breastfeeding wasn't working, with both of us becoming very tired and stressed and minimal milk appearing despite being attached to a machine that would have looked perfectly at home in a cowshed. Finding me in tears one night my wonderful husband finally said 'enough's enough, you said you wouldn't let the breastfeeding Nazis put us through this again', and went and got some formula and bottles. It was the first time that Robin slept contentedly since he had been born. It didn't last however.

An event that stands out very clearly for me was not long after Robin had been born, we invited some friends over for a BBQ. It was madness looking back. All of us were exhausted, stressed and we were just adding to the mix by trying to put on a lovely meal and appear relaxed and happy parents. Robin would not stop crying. I remember taking him into the study, away from the hubbub and trying to rock him to settle him down. Paul appeared saying 'have you changed his nappy?' 'Yes' I hissed through gritted teeth. 'Well have you burped him?' 'Of course I have!' We hissed and sniped at each other a bit more before sailing back out, smiles pasted onto our faces, trying to appear as if nothing was wrong. Poor Robin was passed around like a parcel while our friends tried to settle him, nothing doing. The evening was a disaster and we felt like total failures.

People who know us well recall the 'the spoon incident' from that night. I was talking to my girlfriend, Robin was still crying and grizzling and Paul asked me a question which I didn't hear. For some bizarre reason in his frustration, cross at being 'ignored' he reached over and tapped me gently on the forehead with a spoon and said 'I'm talking to you.' All the angst, sore boobs, tiredness and exasperation exploded inside my head. I snatched the spoon out of his hand and whacked him on the forehead loud enough to echo around the kitchen and bring conversation to a sudden stop. I was angry and mortified. We can look back at that episode now and laugh. We were both so tired and expected so much from each other. These days if we get into a heated debate, our friends remove the spoons!

Life went on. As do all parents of more than one child, we got used to no sleep and smiling cheerfully at the toddler that wants to go to the park, the beach, read stories when all you want to do is collapse in a heap somewhere with your newborn. Checkups down at the clinic were punctuated by Robin's crying. I was told to 'be more firm, don't let him rule the roost.' I pretty much gave up visits to friends' houses. Most of them were fairly new friends as we hadn't been in the country long, so with no history to speak of we probably weren't too high on the 'must see' list with our screaming, crying baby. Thankfully a few troopers stood by us. That time to me now is like having really bad jet-lag. It's blurred and not terribly clear.

As Robin got older he became stronger and would squirm and wriggle his way out of your arms. He hated being held. He wouldn't hold hands. He would throw things. He wouldn't sit on your knee. He didn't like stories. I tried Gymbaroo. My daughter had loved it and I thought it would be a good way for Robin to find other little toddler friends.

Well he did love the gym equipment, but he absolutely would not do the 'mat work'. He didn't want to do the dances and having to go near the parachute for the end song would send hin wild with terror. Of course we didn't know why, so I persevered for months so that he could enjoy the climbing frames and the mini-assault courses and I would sit him on my hip when it came to the parachute. As long as he wasn't sitting on it or under it he wouldn't cry. Time moved on. The Gymbaroo teacher had mentioned to me that it bothered her that she couldn't get Robin to look her in the eye, but I knew she didn't really like 'naughty' boys that wouldn't follow the rules. Some of the other Mothers would cuddle their 'good' little daughers and roll their eyes at each other when Robin wanted to go back onto the play equipment when it was dance time or whatever.

I can remember seething and thinking 'yeah, yeah I have got one of those at home too - I was also a Smug Mother in danger of thinking that I was a perfect parent, just wait until no. 2!' Twice Robin (and therefore me) were told to go and stand in the corner because he wasn't 'behaving'. The second time I thought 'hang on a minute, I am paying for the two of us to be humiliated for the unforgivable sin of not wanting to dance and hating the parachute.' I went to have a word with the teacher and was told 'I'm not sure that it's worth Robin coming back next term.' I was stunned - were we being expelled? I managed to stammer, 'but I have put his name down.' 'Don't worry, I can take it off for you.' She turned away and that was that. Out. Finished.

All in all my daughter and then Robin and I had been going for nearly 3 years. I couldn't believe it. I had been all geared up to say that I thought there had to be a better way of dealing with Robin's desire to play on the equipment than sending us into the corner and here we were out on our ear. I did meet two of my very dear friends during my time at Gymbaroo, so I guess if nothing else I owe them that.

I heard this song by John Rzeznik just recently which I thought was gorgeous - if you want to listen to it, click on the link at the end of this blog.

"I'm Still Here"

I am a question to the world,
Not an answer to be heard.
All a moment that's held in your arms.
And what do you think you'd ever say?
I won't listen anyway…
You don't know me,
And I’ll never be what you want me to be.

And what do you think you'd understand?
I'm a boy, no, I'm a man..
You can take me and throw me away.
And how can you learn what's never shown?
Yeah, you stand here on your own.
They don't know me 'cause I'm not here.

And I want a moment to be real,
Wanna touch things I don't feel,
Wanna hold on and feel I belong.
And how can the world want me to change,
They’re the ones that stay the same.
The don’t know me,
'Cause I’m not here.

And you see the things they never see
All you wanted, I could be
Now you know me, and I'm not afraid
And I wanna tell you who I am
Can you help me be a man?
They can't break me
As long as I know who I am

And I want a moment to be real,
Wanna touch things I don't feel,
Wanna hold on and feel I belong.
And how can the world want me to change,
They’re the ones that stay the same.
They can’t see me,But I’m still here.

They can’t tell me who to be,
‘Cause I’m not what they see.
And the world is still sleepin’,
While I keep on dreamin’ for me.
And their words are just whispers
And lies that I’ll never believe.

And I want a moment to be real,
Wanna touch things I don't feel,
Wanna hold on and feel I belong.
And how can they say I never change
They’re the ones that stay the same.
I’m the one now,
‘Cause I’m still here.

I’m the one,
‘Cause I’m still here.

I’m still here.
I’m still here.
I’m still here.


I'm still here - John Rzeznik

I Hear Your Smile and Breathe Your Light

And if I listen to the sound of white, sometimes I hear your smile, and breathe your light. Yeah, if I listen to the sound of white ...
You're my mystery. One mystery. My mystery. One mystery.

Missy Higgins

When I first heard that song it took me back to when Robin was very small and we didn't share a common language. I could just sometimes get a glimpse of my son - but then he would be gone behind tears, a tantrum or a wall.

The lyrics still bring a lump to my throat and tears to my eyes every time I hear them. I realise that we are very lucky that Robin can laugh with us and will come and hug us, albeit on his terms, and that many parents with autistic children really do have to listen to the Sound of White to hear the smile and breathe the light of their children. I don't actually know what the lyrics are about, but it just hits home to me.

Not that it's all plain sailing, although we have come along in huge steps with Robin there is still the odd bump in the road. Just recently Robin bit a friend who had come for a play. They were playing rough and tumble and Robin was pinned and couldn't get up. His response was to bite, which we hadn't seen for quite a while. He was upset and knew that it was wrong, but then you have to tell that to his little friend.

Later I explained to Robin that, as he was the older of the two, he should be leading the way in terms of behaviour and that it was never acceptable to bite. It's hard because he said 'Mum, I couldn't move. I didn't like it.' I used to say when he was younger 'use your words not your hands', but now that he is 9, that sounds babyish. Just like when I say 'use you eyes not your fingers', whenever we go anywhere or see anything that catches Robins attention. He is a very tactile person.

I often think that if we were still living in England I am sure we would be going to National Trust places at the weekends. Thank God we aren't, most staff in any of those places would probably need medical assistance if anyone so much as breathed near any precious objects, or maybe we would spend most of our time in the gardens?

Having said all that, I am so proud that despite the dreadful storms, Robin happily survived a week of Cuboree up in the Dandenongs last week. Although they had to spend two nights in the storm shelters and abandon their tents due to the winds, he had a ball and came back full of chatter and covered in mud. I look at this gorgeous boy and think how far he has come. That he could go away for 4 nights under canvas, deal with a storm and the fact that there were 6,000 kids up there, and still come back with a smile and a coin for doing a good turn - shows me how far we have come.

I breathe your light Robin. xxx