Monday, December 22, 2008

People Make A Difference

This is my last post for 2008 and reflectiing over the year I realise what a difference people can make to your autistic child.

We have been exceptionally lucky this year to have had a fantastic teacher who really clicked with Robin. Thank you, you really got to the nuts and bolts of what makes Robin tick and the results show what can be achieved with an enthusiastic and committed teacher. His confidence and social skills have improved out of sight this year and we are thrilled with his progress. The wonderful Mandy who has been with Robin since prep has continued to be a fantastic support to both ourselves and Robin. The team at Scouts have continued with their encouragement to get Robin out there and happening in all sorts of ways, from being part of a team, to handling snakes, camping, canoeing a whole array of experiences which, together with his teachers at school, help Robin grow his ability to adapt and cope with the outside world.

Sadly though we are ending the school year on a less upbeat note. The previous Principal of the school was a great believer in inclusion and giving resources to children who struggle in the normal system, and although we weren't aware of it had allocated part of the overall school budget to top up aide allowances granted by the Department of Education, giving Robin and another autistic boy in his grade an extra 5 hours a week between them. Our new Principal who arrived at the start of the school year has very different views. We had noticed a change in the feel of the school as the year progressed, the heart of the school seemed to have disappeared. There is no longer an open door policy, and the new Principal is rarely seen around the school or at the gate at pick up.

The night before the last day of school by chance we found out unofficially that the hours we have for our aide were being cut. This was such a blow as the reason that both boys have been coping so well and keeping up academically is due to Mandy's guiding hand. Both of us Mothers, having been up all night trawling through websites and composing a letter to the Principal, were outside her office at 8.30 am on the last half day of school. She did agree to see us but the message was very clear. If you cut out all the sweet talk the prevailing message was 'you have been lucky for the last 5 years. You have been getting more than you are entitled to, we are merely cutting back to what you should have been receiving.' What happened to PSG meetings? What happened to common courtesy? Our aide was informed as she was leaving on the Thursday that she would lose 5 hours a week, despite having a contract until 2011. We were apparently going to be told and when I asked 'when?' I was told that we would have been informed that day, the last day of school, a half day. Where was the time for our right to respond? How hard would it have been to have called us in for a meeting and explained the situation and talked us through it and given us time to make other arrangements?

We were told that the figures had only been finalised that week and she had only informed the teachers the day before and therefore she was going to let us know today, the last day of the school year. I cannot believe that schools work in this way. If they do then the management and financial planning must be sadly lacking. Other people I have spoken to who work as teachers and business managers of schools tell me that these decisions are usually made sometime during October.

I made an official complaint to the Department of Education, who with all credit to them did contact me within 2 hours, and were most sympathetic, however the matter is really out of their hands. As long as a school principal does not actually break the law, how they run their school and their budget is up to them. If a principal has that much power, where is the responsibility? We were told that the money for the extra hours was coming directly out of the staff salaries budget and therefore the money could be used to pay for a specialist teacher like PE or Art. What 5 hours a week? I suspect sadly that the money will be wasted, such as the money that was spent having the new Principal's office completely redecorated including new leather seating and a new desk.

I will continue to pursue what I feel is the best for Robin and others like him at the school, as I am sure you other Mothers and Fathers out there are doing. It seems a shame what was deemed necessary 5 years ago for the safety, social, educational and personal development of the children attending this school, and which was clearly expected to continue until 2011, is now to be cut back with no consultation with the parents. The tactics used were ambush tactics which shows poors management and communications on the part of the new principal.

Despite this setback, I know that the teachers at the school and Robin's friends will continue to advocate for his rights and be there with support and encouragement for their future. People DO make a difference, and those in power have the ability and a responsibility to help those children with disabilities in their care.

Happy Christmas and very best wishes for 2009!

Sunday, August 3, 2008

Mummy what's Asperger's Syndrome?

'I know there is strength in the differences between us, I know there is comfort where they overlap.' Ani Difranco

'Mummy what's Asperger's Syndrome?' This is what Robin came home and asked me last week. He had seen 'Asperger's Syndrome' written next to his name at school and said that it was 'his sickness.' He had carefully copied it onto a piece of paper and wanted to Google it straight away and find all about it.

I froze. He had taken me completely by surprise. I always knew that this was a conversation that we would have, but I didn't think that it would come so soon. I wasn't prepared. He was still so young, I wasn't sure how much to say. As it happened I was already on the computer working and so I asked him if we could look later as I had to finish my work. I thought he might get side-tacked and forget about it, but of course he didn't.

Firstly I wasn't sure how he had got to Aspergers as Robin has autism. I called his aide at school and told her what had happened. She apologised profusely and said there was a note in the teacher's records in his desk which was kept locked, but not in the class register. She also was aware that Aspergers was incorrect and had the data amended immediately and also removed the records from the classroom.

This didn't help us much at home however, as Robin is nothing if not persistent. My husband and I had a talk and decided to tell him the truth, which was that he didn't have Aspergers and when he asked again what it was, we told him some of the symptoms that you might see. He thought about that for a while and said 'but I do some of those things.' I agreed but told him that he was different again. We talked about my nephew who has Down's. We regularly see a neighbour's daughter waiting for the bus who also has Down's. Robin had mentioned that her face was 'funny'. I had said at the time that we were all different, just like having blonde hair, brown eyes or being left-handed. We are all different from one another in some way, but the same in so many others.

We told him that there was something called a spectrum and that people with Aspergers were on it, and also some people who were autistic. I said that people with autism might have a bit of trouble reading faces and understanding body languade, or perhaps being able to express emotions easily but that there were other gifts that they might have that others may not. He promptly told me that he didn't have any trouble reading people's faces. I said some people with autism see things in great detail and might be great spotters. He loved this and said 'I'm a great spotter, you are always saying so Mum. Cool', and off he went.

That was that. I wanted to laugh out loud. I don't know what I was expecting, but I was just so relieved that the first talk had been so straightforward. Later that week I asked Robin whether there was anything that he wanted to ask me or Dad? We were there at any time if he wanted to talk. He said 'Ok thanks, not right now.' I will ask him again in a few weeks and see how we go. I had been worrying and half dreading the day that we talked about autism. I just wasn't sure how Robin would react and I was so worried about getting it wrong. I want him to see himself as the wonderful person he is and be positive about who he is. I was concerned that if we didn't get the right approach he might see himself as different but in a negative way, rather than we are all different and all the same. Some people are better at some things, but not so good at others.

Hopefully he will grow to embrace his uniqueness and achieve all he wants out of life. I am just thankful that we can now talk openly as a family if and when the need arises. It's always true that the things you worry and angst about the most are generally the things that when it comes down to it, are the things that just happen and resolve themselves. In a way I am glad that I hadn't got a rehearsed speech ready, I don't think it would have come across in the same way and we might have had a very different result. So I guess what I would say to others is that we all worry about how our loved one might react to being told that they are on the spectrum, but just be honest, talk from your heart and let them know how special they are to you, their family.

'Our greatest strength as a human race is our ability to acknowledge our differences, our greatest weakness is our failure to embrace them.' Judith Henderson

Thursday, April 17, 2008

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

Thursday, April 10, 2008

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

Monday, March 24, 2008

From Thunderbirds to Megalodons

Robin, like many children on the spectrum, has an amazing ability to completely immerse himself in a current passion. Some were things you would expect to see in a small child, like Thomas the Tank Engine and Buzz Lightyear, but from the time Robin first saw Virgil saying 'FAB', we have been on a roller coaster journey and Robin has taken us to places, and with an intensity, that we ourselves would never have experienced.

Once Robin discovered Thunderbirds, I remember having to call him 'Virgil' for at least a week. He did the walk, talked the talk. As with most of Robin's passions it is not always easy to get hold of exactly what it is that has attracted him. Thunderbird videos? No problem, but once you start trying to find, say, a Virgil character things become more complicated. Scott yes, Gordon yes, Virgil no. With many of Robin's subsequent passions, we could rest assured that the things he loved would prove a challenge to find. Once he had seen every possible video, DVD, built the various Thunderbirds with his 'clever sticks' and Lego, he discovered Asterix.

Asterix was a great turning point for all of us because it taught Robin to read. He had never really shown any interest in books, or reading, or even listening to stories. It was as though they had nothing to offer him at all, and perhaps they didn't then. I think that Asterix caught his imagination because of the colour and the visual feedback. Most of his subsequent favourite book characters have been cartoons. As it happened we had most of the Asterix books and he devoured them. Poor Virgil was a thing of the past and now he was Asterix. "By Toutatis! Ye Gods! By Jupiter!' were his new buzz words. We spent ages explaining the puns and jokes and Robin loved it. He was Asterix. Now all his drawings and play revolved around Asterix and Obelix. At school when they had a fancy dress day, Robin went as Asterix, something of a challenge for me with his helmet!

Once he had read all the books, reread them and reread them I suggested that he try Tintin. He was not interested in the slightest and refused to even look at them. However he did discover my husband's Dilbert books. Robin was about 7 or 8 at the time and we found it interesting that he chose this as his new passion, given that the cartoons are all about an engineer and his coworkers outwitting the management. I think it might have been the fact that the characters' faces are so uncomplicated. Dilbert and his pet, Dogbert, became Robin's favourite characters. He created an office in his bedroom complete with a laptop he made. There was a framed picture of Dogbert on his desk, a pot for pens and a toy telephone. He found an email address for Scott Adams, the creator of Dilbert, in one of his books and insisted on sending an email. I was a little nervous because I thought he would be disappointed by not getting a reply. I explained that Mr Adams was probably a very busy man and might not have time to reply to all his fans. Just goes to show how little faith I have compared to Robin! The gorgeous Mr Adams replied overnight and made a small boy (and his Mum) very happy. Our challenge that year was to find a Dogbert plush toy which Robin had put on his Christmas list. It took a lot of time searching the Internet. I found only one about 2 weeks before Christmas which a lovely man in the US posted and he arrived just in time.

Dilbert is still a firm favourite which Robin still reads and Dogbert is still a favoured toy, however nothing prepared us for Titanic. Thankfully there are a lot of books on the subject, and I think we have read them all. Robin drew it, made it with his clever sticks and Lego. He could show you exactly how the ship broke up and when. We lived with the Titanic for a long time and it was fascinating. I thought I knew a fair bit about it, but I realise now how much more there was to the story. Then one day Robin picked up a Tintin book I had brought home from the library, Tintin and the Shooting Star. This story featured a trip across the Arctic Ocean in a passenger liner and obviously caught his eye. We went through all of the Tintin books and he just adored them. Dogbert became Snowy and 'blistering barnacles' and 'thundering typhoons' were the order of the day.

I can't remember how Star Wars came into Robin's life, but it has proved to be one of the most all-consuming. I don't think there's a single character that Robin can't tell you about. He has made the most complex starships and fighters from his clever sticks that are instantly recognisable as X-wing fighters or whatever it is he is making. He has read all the DK Star Wars books and pores over them for hours. He puts together his Star Wars Lego kits into new machines for the rebel force from his own imagination.

It was our inability to find one of the things that Robin had put on his list for Santa that lead to his latest passion. You cannot find rebel fighter helmets anywhere to the best of my knowledge. I can't remember how or why, but my husband suggested a shark's tooth. Not much of a link is there? But Robin had written 'Great White toy' too, (also not an easy thing to come by in plush I have to tell you). We found ourselves in a shop that sold fossils and marine books and toys and saw some fossilised sharks teeth. We bought one, mounted it, and put it in Robin's stocking.

We had no idea of the impact it would have. It turned out that it was the tooth of an extinct mackerel shark, a relative of the Great White and Megalodon (thankfully extinct, enormous creatures that used to eat whales). Sharks for most people my age are associated with 'Jaws', and not something that figures at the top of our 'must save' endangered species list, but if you see them through Robin's eyes, they are beautiful, elegant creatures no more or less so than a lion or tiger. He dreams of swimming in a cage with sharks and to own a megalodon tooth. Looks like that's our next challenge, but perhaps easier to manage than a place with the rebel force at the Battle of Endor.

Wednesday, February 27, 2008

Beauty in Small Things

"Being close to an individual with autism is about celebrating life. It's about finding beauty in small things. It's about overcoming society's stigmas. it's about learning fresh ways to look at things. It does not have to be about tragedy, or pain, or loss." Jasmine Lee O'Neill

Wise words. I would love an opportunity to be able to see the world just for 5 minutes through Robin's eyes. It would be seeing the world from an entirely new dimension. I know he notices things we don't even see and stores away things in his memory that we have filtered out subconsciously and never even notice. We see but don't see. Our brains are wired to filter out information, sights, sounds that aren't necessary. If we took in everything around us we would be overwhelmed.

This is what it is like for some autistic children. Absorbing sights, sounds, smells, data like a sponge, where do you put it all? How do you process it all? This is often the reason why children like Robin deliberately take time out. Take themselves away to somewhere quiet, a favourite hidey hole or den. Another mechanism for blocking out some of this overwhelming amount of information might be to rock, flick things or in Robin's case roll. He's a great roller. Robin can gently roll his way from his bedroom to another room to fetch a book and roll back again, or he can leap into rolls like an acrobat, with us wincing at the thought of a potential broken neck, depending on his mood.

Tight focusing on a toy, holding it every close and looking at it sideways is something that Robin has done since he was very small. I asked him once why? Did it make the toy look different, better? He said, 'it makes it big.' I think it's his way of blocking out excess information allowing hin to concentrate on his toy. Robin is very big on detail. The slightest difference, however small, is glaringly obvious to him. He's a great spotter. He can pick people out in a crowd or in a school photo straightaway.

In the classroom Robin often gets up and moves around quietly at the back of the room, picking things up and 'fiddling'. To begin with his teacher thought that it was because he was not engaged in the topic, but soon realised that he was taking in everything but it was easier for him to do that if he could move around, and by giving his fingers something abstract to do it allowed his brain to focus in on what the teacher was saying.

I often wonder if Robin could see the world through my eyes for 5 minutes, whether he might find it a bit like seeing in black and white when you are used to colour. He might be astounded how much he suddenly understood about people's body language and tone, but I wonder whether he would think that a good enough swap for the detail and texture that he gets from seeing the world as he does? I might see a tree and think it's beautiful. Robin might see a tree and could probably tell you how many birds are in it, that there's a Safeway bag caught on a branch, that there are more bright green leaves than dark green leaves, that there are 26 apples on it, 3 are half-eaten, 6 more on the ground underneath.

So next time you are out, why not spend a couple of minutes to see how much you can actually see if you really look. Try and see beyond the tree, the flower, the view. What else is there? There's so much more there than you think.

Monday, February 25, 2008

Surviving The Tantrums

Question: You are shopping, you turn into an aisle and see a child screaming, crying, kicking and generally throwing a full blown tantrum. The Mother is clearly embarrassed and is trying to calm/control her child, wheel her trolley and keep her handbag from falling off her shoulder. It's a disaster. What do you do? What are you thinking?

I have been on both sides of that equation and if I am completely honest before Robin came into our lives if someone had presented me with that situation and I had to answer those questions truthfully, firstly I probably wouldn't have done anything - Englishness? Wanting to avoid embarrassing situations? Fearful of being rebuffed?. Secondly I would have assumed that the child was probably overindulged or spoilt, maybe a lack of discipline and boundaries at home.

I can look back now and wince at myself, but that's because I have been on the other side and it's not a nice place to be.

From very early on Robin disliked to be held or touched unless he wanted to be. Until he was 3 we didn't know why. It's quite upsetting as your instinct as a Mother is to hold and reassure a crying baby or toddler, but in Robin's case that could sometimes make the situation worse. It was quite a problem crossing roads when he was a bit older as he might not want to hold your hand and you would have to hold his wrist crossing the road while he was twisting away from you, but basically we respected the fact that Robin didn't like to be touched and felt we were being given something pretty special if he did come and sit on our lap.

Loud noises, sirens, bells, balloons were all sources of terror and could send Robin into a complete panic. The inability to process our explanations of why something could not happen now or something he had seen in the shop wasn't going to come home were constant sources of disappointment and tears which could go to a full tantrum. Later after help with our Speech Pathologist we started to speak each other's language and we could deflect this with better use of language and short sentences.

There were several occasions where Robin has had a wowzer of a tantrum in public. I remember two particularly. One was after we had been to the circus. I hadn't been sure whether it was going to be a good thing, there were so many variables. Loud noises, clowns with painted faces it could all potentially go horribly wrong, but my Father really wanted to take the children and Robin was quite certain he wanted to go.

We saw the bouncing castle on the way in and Robin was very excited by it. We were running late and needed to get our seats so we quickly moved along. The circus went well, although it was really hot under the big top. Dad got the children a drink and some glow sticks and it all seemed fine. I did notice that during the trapeze act Robin was not watching the show but rather the play of lights on the big top from the glitter ball and wondered whether he was getting a bit maxed out with all the input.

As we were leaving Robin saw the bouncing castle again, pointed and made it very clear he wanted a go. It had been stifling in the tent, it was hot outside, it was time to go home. I tried to explain to Robin that they had had enough treats for one day, it was time to go home. He wasn't having a bar of it. Once he realised that it really was time to go home he fell apart. He fell on the grass crying and refused to move. He was small enough at that age that I could just about pick him up. He clawed at the grass and was wriggling and kicking in my arms and started screaming. People started to look and stare. I kept telling him that I was sorry, but we had to go home. We managed to get to the car but the tantrum was still at full rage. I half expected someone to come up and accost me for trying to abduct a small child.

Finally we got him in the car but he kept undoing his seat belt. I sat in the driver's seat and said, 'Robin, we have to go home. We will sit here until you stop. You need to calm down.' Finally he stopped undoing his seatbelt and I started to drive home. On the way there he took his shoes off and threw them into the front of the car followed by anything he could get his hands on. There wasn't anywhere for me to pull over so I kept going. Once we got home he went to his room and started throwing everything into the corridor. I thought it best to just let him get it all out of his system and let him do it. Dad went to his room and cried. He had never seen Robin throw a full blown tantrum before. Eventually once he had calmed down Robin came out of his room and said "I'm sorry Mum. I'm a naughty boy.' At that point it was Ok for a hug and an explanation of why we had had to come home and he could accept both.

The other major tantrum that I remember was in the supermarket. Robin had spotted a car in one of the aisles and wanted it. It's not something I had ever encouraged or we would have to buy one every time we went in. I said, 'no, Robin. Maybe we could get one for your birthday?' Off he went. I was almost through my shop and really didn't have the time to just leave and come back at another time, so I thought I would just press on. He was screaming and crying, people were staring and some were tutting. I managed to get to the checkout, paid for the shopping, trying to hold Robin on my hip. Most people in the queues were staring and making comments, when an old lady came up to me and said, 'I think you are doing a great job, would you like me to help you with your things to the car?' It was very humbling and I burst into tears. It was such an accepting and kind thing to do.

Now I NEVER make judgements when I see children throwing a wobbler, and although Robin is older now and more able to understand that you can't just have everything you want when you want it, I never get stressed or embarrassed now if he does. It's Robin, we love him, and other people can go hang!

Survival Tips:

1. Try and stay calm. If you get upset or anxious it will only make things worse.
2. If you can remove yourself and your child away from the situation to somewhere quiet.
3. Remember it really doesn't matter what other people think.
4. Although it seems like forever at the time, usually tantrums don't last that long.