Managing Autism - A Personal View

“Dad, wake up its time for school, its time for school!” Jack shouted. It is about 6.00am, and I am woken from my slumber…. At first I thought I had just watched Nemo one too many times, but soon realised that it was in fact a very excited Jack!

“Come on Dad, I don’t want to be late - get up!”

Here we go, I thought - the emotional rollercoaster that is the first day at school…

First it was the uniform, that we had laid out the night before. Then it was the lunch box, drink bottle, hat, library bag, sandals and finally the school bag. Jack was all dressed, bags packed and ready to go to school…….I looked at the clock in the kitchen - 6.47am!! I did not think that the teachers would appreciate an early arrival at that hour in the morning, so it was time for a little stalling.

“Jack you can’t go to school without breakfast - what will I make for you?”

“I have already had it Dad - see, the bowl is there.”

“Who made that for you mate?” I asked, still a little bleary eyed!

“I did Dad, Mum said yesterday that I could go to school after breakfast, so I got up early and made my own - can we go now?”

I smiled and laughed, and started to explain to Jack that the teachers were only just getting out of bed as well, and that they still needed to get ready - no one would be at school for another couple of hours. Jack laughed, and said that he was really excited, but didn’t want to be at school by himself.

 ”Maybe we should wait for the teachers to arrive before we go,” Jack stated. 

I thought this was a wonderful idea, and explained that I was going to get ready myself, and then we would be ready to go.

I thought that I would have an emotional wreck on my hands with Elissa, but she handled herself extremely well and it was excited smiles all round.

The only time that I detected a tear, was when Annie said ” I will miss you Jackie” - it was a beautiful moment, and hugs all round as we got into the car to go to school.

Of course Jack knew the way, and at one point decided that I was not driving fast enough! We arrived at school and walked in with Jack, and all the other kids with their parents.

Now, being our first child we did not really know what to expect - but you hear all the time about kids are crying and not wanting to leave their parents.

“Love you Mum, Love you Dad, Love you Annie - you go now!” Jack said, as only Jack can say. I knew in that moment that he had really grown up, and was well and truly ready for his adventure at school. Much to his disgust, Elissa, Annie and I did hang around for a little longer watching him settle in.

“I love Ninja Turtles…” were the last words that I heard him say to another little boy as we left.

Elissa contained herself, and the tears didn’t start until we hit the car. “What’s wrong mummy, why are you crying?” asked Annie. A big cuddle from Annie, a few tissues (and coffee and chocolate cake later) and Elissa was feeling better!

Jack had a fantastic day, and according to his teacher did heaps of activities - but if you ask him he says “I can’t remember.” Hopefully in the days, weeks and years ahead, school will be one of the great times for him to remember.

For the record, Jack is excited about going back in the morning, Annie enjoyed her one on one time with Mum, Dad is extremely proud, and Elissa will enjoy a very much deserved glass of wine this evening!

Steve

” I can’t believe my little baby is starting school” - Elissa’s first words to me this morning…. I knew the moment was coming, and she has been very brave until now, but I knew that it was really starting to hit home.

” Do you think he is ready?”

” How will he cope, and will he be ok?”

I have heard all of these questions before, and we have discussed them at length - sometimes with all the answers, sometimes with none. I was just about to launch into one of my famous full of wisdom responses, when the best answer possible arrived in our bedroom.

“Morning! - am I going to school this morning?” Jack asks.

Here stands our beautiful boy, full of happiness, excitment, and adventure - dressed from head to toe in his school uniform, school bag over the shoulder, empty lunch box in hand and a grin from ear to ear.

“You start school tomorrow buddy” I reply without thinking too hard (it was only 6.45am!). The look on Jacks face went from pure joy to disappointment in a heartbeat. (How bad did I feel!)

“I thought you said we were going to see my teacher today?” Jack asked confused.

“We are going to see your teacher, but just for a short time so you can get familiar with your classroom.  You don’t have to wear your uniform if you don’t want to.”

“I want to dad, I can’t wait to get to school and I can’t wait to play with all the other kids - can we go now?”

At this point in time, I glance over at my beautiful wife - one little tear rolling down her cheek, but the biggest grin from ear to ear that I have seen in a long time. I know in that moment that she has had her questions answered, and that they were the answers she was looking for. 

Tomorrow is the big day, and after the success we had with a short visit to school this morning I know Jack will be ok - I will be going to the supermarket shortly to stack up on tissues for Elissa, and I can only hope that she will let him go once we reach the classroom!

I look forward to posting again tommorow as we reach this very exciting emotional time.

Steve.

Sometimes when we’re in the middle of life’s challenges we don’t always see straight, and we don’t always think straight… In fact, in these moments I often don’t even notice what life has become, or what’s in the process of happening to me and those around me until it is all too late.

At the end of last week, I fell in an emotional heap.

As I sit here and write this post I even now find it difficult to pin point just what happened to bring everything crashing around me, but it was more or less a build up of stress, anxiety, fear… and probably a bit of unresolved anger and grief…

I had got to a point where life had become too hard, and it was enough for me to just survive - happiness had seemed to disappear, and I was struggling to find a way out of this.

The main issue I came to realise that I was dealing with was Jack’s aggression - it has been on the increase over the past few weeks (and the long holiday break has certainly been no help here, with our normal routine out the window).  I have been finding it harder and harder to deal with Jack’s physical strength, and have been struggling to cope with the consequences of all of this… the physical attacks when he ‘melts’ usually result in bruised legs, scratches all over my arms, and a general feeling of being totally helpless.  And I’ve also been extremely concerned over his roughness with Annie (just in general play) - there have been times when she has been really scared when he has pushed or hit her… and this has really had my stress levels heading ’sky high’.

Jack has always been intense, and his aggressiveness has been part of this.  Before his autism spectrum diagnosis I used to feel so frustrated with him - constantly… I would do everything I could in terms of behaviour management… I read every book, watched every ‘parenting’ video, and went to every class possible, just to try and find ways to manage what was happening.

And I guess after the autism diagnosis, my heart broke and I felt a complete emptiness inside… not because of the autism itself, but because I knew at that moment that handling Jack’s aggression was never going to be an easy thing… because I knew at that moment that the ‘typical’ way of dealing with his aggression was never going to work…

… and soon after the diagnosis it didn’t take long before the anger started to boil up… I began to feel angry that he was so aggressive, and angry that he couldn’t see how he was making people feel… and angry that he couldn’t control his behaviours… and angry at myself… oh so angry at myself… and then it just became grief…

… I guess I thought I’d dealt with all these feelings, but by the end of last week I realised that I hadn’t.  I was facing a whole lot of hurt… and still that emptiness inside… and the judgement from others who see the aggression still hits me hard ’straight between the eyes’.

I’ve cried rivers of tears, I’ve sunk to the bottom….. but I’ve also now realised that I’m the only person who can get me out of this.  I’m the only person who can change how I feel, and I’m the only person who can pick myself up and find a way to move on.

So I’ve started.

I’m going to find some help - both for me and for Jack… I don’t want to change him, I just want to help him find a way to manage his aggression, and help him find a way to be safe.

The tears will ease soon I am sure, and the sun will start to shine again… I’m hoping time will ease the pain of today…

“… but regardless, today and always, I love you Jacky with all of my heart, you’re my beautiful boy.”

Mum xx

In preparation for Jack beginning school next week, we have been working on some new ‘Bag Tags’.

These bag tags are not just the ordinary variety with the child’s name and contact details printed on them - these bag tags are also ‘reminder’ tags, designed to help Jack organise himself at the beginning and end of each school day.

We have mentioned previously that recently we have been working on ways to help Jack be independent with his day to day routine, and to help ease some of the anxiety and uncertainty in his usual tasks (and help him through times of transition).  It is fairly common for children on the autism spectrum to use some kind of schedule or task board, and over the past week or two we have been updating Jack’s schedule and creating some new task boards.

So on this theme, we were trying to work out a way to help him remember everything that he needed to pack in his school bag in the mornings before leaving for school, and again in the afternoons when he packed his bag at school to come home.  Finally it dawned on us that he needed a small reminder board (or tag) attached to his bag… so we created his new bag tags.

We have 4 different tags that we can use, depending on what day it is (and what he needs to take and bring home from school).  The idea is that we help him work out in the mornings (according to his weekly schedule) what tag he needs for the day, and then he can use the tag to help him organise his bag.

We’ve had a practice run and so far so good, he is pretty excited about using the new tags - time will tell how successful it is!

We travelled to Melbourne last weekend to spend an evening out on our own (Steve and I) and to have a farewell lunch with my brother Mike and his partner Elien who are heading back to Belgium in a few days time.

We left home on Saturday afternoon in the pouring rain (unusual here as we have been in severe drought in our part of Australia for a very long time) and made a slow trip to Melbourne, struggling against the weather along the way.

Thankfully Annie slept in the car, but Jack was too interested in all the rain to even think about resting!

We arrived in Melbourne a little later than we had planned, but Steve and I still managed to head out for a few hours on our own - savouring the quiet and calm around us!

Sunday was spent with my Mum and Dad, and Mike and Elien.  Elien prepared roast lamb for us (her first ever attempt) and the kids spent much of the day playing with Mike (Jack had Mike building Lego creations with him).

Here are a few snapshots of our day together:

Little did we know when we had left 24 hours earlier that the worst of the weather was still to hit our part of Victoria.  We later discovered that the storm had been at it’s heaviest Saturday evening - resulting in flooding to our garage, and water damage to everything in it!!

Now, our garage stores many of the normal things that you would find in garages, but due to the fact that we are in the process of selling our home, we also have quite a bit of furniture stored in the garage, as well as many boxes of books and other items that we have started to pack away in preparation for our move.  So as you can imagine, not a pretty picture to come home to.

The kids hit ‘hyper’ state within moments of being home, simply because of the uncertainty of everything around them, but once darkness hit and we had done all that we could for the time being we managed to quieten things down and they eventually went to sleep.

We have spent the last couple of days mopping up, drying things out, and putting together a list of damaged items for the insurance company.  Certainly not a pleasant task, but at least we can be grateful that it was only the garage that was flooded, and not the house!

So with the storm having passed, the sun shining and the temperature starting to soar yet again… we’re finally returing to normal, and we’re finally back and blogging.

Well, we’re again heading off for a couple of nights - another short break to Elissa’s parents home.  We’re planning an evening out on our own (yes… really without kids!!) and also a farewell lunch tomorrow for Elissa’s brother Mike and his partner Elien who are heading back to Belgium later in the week after spending the last few months here in Australia.

Mike has been in Belgium for the past few years, he initially went to live there having joined a cycling team and then fell madly in love with a Belgian girl!!  Both are looking forward to going back… but this will be the last time we’ll see them for about 2 years…

Have a super weekend everyone!

With the weather getting hotter, and the kids hair getting longer…. today it was time for a visit to the hairdresser…

Haircuts have never been an easy experience for Jack….. okay, to be honest, for a very long time they were a complete nightmare.  Our haircut preparation used to be incredibly focused and there was no room for error - the sanity of the hairdresser and anyone else within distance of hearing ear piercing screams was always at risk.

Often, all it would take was simply a mention of the hairdresser and Jack would start with his intense head rubbing and sobbing.  Bribery would be our only way to coax him into the chair, and someone would have to hold his head whilst simultaneously feeding him an ongoing supply of chocolate frogs - all this whilst the hairdresser worked as fast as she could, trying to keep the sensory irritation to an absolute minimum.

We could never work out the reason as to why Jack hated haircuts so much… of course, post ASD diagnosis and it makes sense, but back then we had no idea as to why we were being thrown into a world of chaos over a haircut.

However, over the past 12 months, our haircut experiences have become somewhat more ‘mellow’.  We can’t work out why this is so, the only thing being is that he now has a family friend (who is a hairdresser) cut his hair… perhaps he feels a little safer, or perhaps he has simply grown through a difficult patch.

But regardless of why, he will now sit for a period of time in order to have his hair cut - yes he still gets a little agitated every now and again… he still jiggles his head or legs at times… but we no longer have the screaming, and we no longer have the fighting to get out of the chair… (we still have to provide him with an ongoing source of food to keep him from whining, but hey - this is totally manageable!!!).

So our trip to the hairdresser today was a success… well, for Jack anyway… and Annie you ask?… well that’s a different story (I’ll tell you about it when I get my hearing back!).

Oh, and if anyone has tips for surviving a haircut, please share!!

Author unknown

There once was a woman who woke up one morning, looked in the mirror, and noticed she had only three hairs on her head. “Well,” she said, “I think I’ll braid my hair today!”

So she did and she had a wonderful day.

The next day she woke up, looked in the mirror and saw that she had only two hairs on her head.

“H-M-M,” she said, “I think I’ll part my hair down the middle today!”

So she did and she had a grand day.

The next day she woke up, looked in the mirror and noticed that she had only one hair on her head.

“Well,” she said, “today I’m going to wear my hair in a pony tail.”

So she did and she had a fun, fun day.

The next day she woke up, looked in the mirror and noticed that there wasn’t a single hair on her head.

“YEA!” she exclaimed, “I don’t have to fix my hair today!”

Attitude is everything.

Be kinder than necessary, for everyone you meet is fighting some kind of battle.

Live simply, love generously, care deeply, speak kindly…..

Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.

From My Daily Insights (As A Man Thinketh)

Our living room floor has been taken over today - by Lions!!!

Well, pictures of lions anyway…

At his last therapy session, Jack’s Speech Pathologist printed out a whole lot of lion pictures for Jack to colour in (she is so lovely!!), so he busied himself this morning with colouring.

I made the mistake of asking if I could see one of his pictures that looked like a ‘real’ lion as opposed to a ‘cartoon’.  At first Jack looked at me blankly, and then of course he wanted a full explanation of what I meant.  Since then we have been trying to talk about the differences between pictures that look like ‘real’ lions, and pictures that are more like ‘cartoons’ (yes, very confusing, but he is starting to get the idea of how there are differences).

At Jack’s latest speech therapy session I asked his Speech Pathologist how I might go about trying to get him to understand different voice tones, and whilst it looks like it will be a very long process, we’re about to start working on it here at home.

Hmmm… now how could we relate voice tones to lions…

Anyway, on the topic of lions, Jack has taken to grouping lately (as opposed to lining up) - here is one of his latest groupings… lions of course, with a tiger and a polar bear thrown in for good measure (and no apparently it’s not a vicious attack on the polar bear even though it looks this way - I was a little worried for the bear!!!).

Oh, it really has been a lion of a day!

Our son’s autism is not an illness or a disease…

It is simply a difference in the way he thinks, processes and responds to the world…

Who is not to argue that perhaps one day, our son’s way of seeing the world may become ‘normal’…

Today is the birth date of the revered Martin Luther King - a man who fought for acceptance and diversity… a man who saw the worth in all people, and fought for their freedom.

Today is a day to reflect on how far we have come in this world, in terms of acceptance and understanding.  Yes, the road we still have to travel will be long and difficult, but there is hope… King saw this hope, and we must too.

There is hope that one day the difference and diversity in our world will be accepted and understood, that all will be free from discrimination and judgement, that all will be equal… “free at last, free at last…”

I HAVE A DREAM

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May we honour diversity, may we honour all people’s worth…