Managing Autism - A Personal View

Oh my goodness… oh my goodness!!!

We’re holding our breath…..

Someone please pick the significance of this moment!!!

A whole day… and no hitting!!!

Wow, we can hardly believe it ourselves!!

After a couple of really productive appointments over the last week (with Jack’s speech pathologist and then with the counsellor from our State Autism Organisation) we feel like we are flying high today.

We have been working really hard on finding ideas and strategies to deal with Jack’s aggression (which stems from his anxiety) and over the last few days we have finally started to try some new things out.  We have also started Jack on a herbal tonic that is used to help calm and balance his moods (more about this at another time if we see some valuable results).

This week started with a couple of really difficult and challenging days (that left us feeling quite stressed out and worried), but we are so excited to report that yesterday Jack only had to be reminded about personal space once at school, and that today at home (and as far as we know at school) he has not physically hit out once!

Early days we know, and things will definitely be up and down… but for today we are celebrating… and giving heaps of praise (and Jack is proudly displaying his special stickers that he earned for his fantastic behaviour).

Hip Hip Hooray… no hitting today!

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!

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!!

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!

We often wonder about Jack’s mind - what it takes in and what it filters out…

… and it seems that whatever it takes in, it does so in fine detail, and in a way that is totally focussed… take lions for example…

We’ve written about Jack’s interest in lions before.  Jack loves lions and he can pick one from anywhere.  Big lions, small lions, lion toys, lion stickers, lion shadows - you name it, if it resembles a lion in any way, he’ll notice, and he’ll stop to look at it and study it in fine detail.

We have a house full of lions (not the real ones thankfully!) and Jack personally knows each and every lion that he has, and how they are alike and how they are different.

Jack will draw pictures of lions over and over again.  (In fact, if Jack draws a picture we can pretty much guarantee it will either be a picture of our family, or a picture of a lion.)  If you sit to draw lions with Jack he will pull you up on your detail if it’s not right, and he will give you blow by blow explanations as to what lions look like, do and have.

We have clay lions and playdough lions.  We have lion caves made from boxes, and lion food made from paper (cut and scrunched up in a very particular way).  Sometimes it seems like lion creations are taking over the house!!

Jack is very particular about the sound of a lions roar.  If you happen to play lion roars with him, he will correct you if you don’t get the tone and balance of the sound just right.  And the lion ‘walk’ is a skill in itself to master - your paws must flex and your back must arch in a certain way, and goodness help you if you just ‘leap’ without mastering a lion’s leaping precision.

‘Lion Boy’ is an affectionate name we have for Jack…

Lions are his thing… his focus…

For Jack, if lions are concerned, you couldn’t get any better attention to detail…

Jack was desperate to share his favourite photo of himself - dressed in his Raphael Ninja Turtle costume.

So here he is - ‘Raph Jack’

Jack says:

I love Raph the best, and my friend loves Leo the best, and my other friend loves Mike the best, and my other friend loves Don the best…

I like singing the Ninja Turtle song.

Mum, Dad and Annie say:

We’re all really glad we have a brave Ninja Turtle in our house to keep us safe!!!

PS - Please understand if you don’t hear from us for a day or two - we are all well but have a bit of a family emergency on our hands…

Yesterday was a fabulous day - one of those days you remember for a long time, with the kids creating the most wonderful delights!

Over the past few weeks, I’ve found that I’ve been treated to some amazing surprises from Jack in terms of his development.  It’s funny, but sometimes I almost feel that his diagnosis of ‘autism spectrum disorder’ has strangely enough given him permission to shine in his own way (or maybe it’s just that Steve and I are viewing him through different eyes, and allowing him to simply ‘be’ who he really is?!?).

Well through the usual ups and downs of a typical day yesterday, Jack really showed me his ability to ’shine’.  It was a day for creating - and with materials that Jack loves.

Jack spent a lot of the morning in his bedroom, at his special table.  We call it his special table, because it’s the place he goes to ‘work’ when he needs some down time (usually when he’s heading towards a ‘meltdown’, or recovering from one!).  He also spends time at his special table before bed as the activity seems to be really calming on him.

Jack’s special table is home to some of his favourite animals and toys, including his Lego.  Quite a while ago we posted on “A Lego Breakthrough” which saw us going from Jack sitting and directing us as to what and how to build for him (not wanting to build with or manipulate the Lego himself) to actually constructing Lego creations himself.  So when Jack set himself up at his special table yesterday morning, it was a sure bet that he would be ‘working’ at his Lego constructions.  And work he did……….

When he finally allowed me in to his room to ’view’ his creations, I was totally blown away - especially when I stopped to think back to a couple of months ago, when ‘Lego play’ was an entirely different story.  I think the Helicopter was the piece that really made me stop in amazement - the detail was incredible, and ’shine’ it did!!

So with spirits high (and the kids starting to get a little wound up because it was too hot to play outside) I decided we would embark on some baking for the afternoon.  I had a fabulous Christmas Cookie recipe from Katherine over at GFCF Mommy (thanks Katherine!!!) that I had tried out previously on my own, but the kids were desperate to do some Christmas baking, so Cookies it would be.

Jack loves baking - I think it’s a combination of the methodical processes that we follow, and the ’sensory’ stuff (he loves using his hands when he can, and smelling both the ingredients and the finished product).  So as we prepared our cookie mixture, we had a few of the usual arguments over who would ‘measure’ and ‘tip’ what and who would mix, but all in all, it was an enjoyable time for us all.  And the results - delicious!!! (to say the least…)  I’m not sure that they will last past today (the kids keep finding reasons to ‘test’ them) but I guess that just gives us an excuse to bake some more!

So create we did, and what a memorable day it was…

….. yes, yesterday was really a day to SHINE!

I read a fabulous article yesterday, titled “Courageous kids on film“.  It caught my attention because the first line of the article made a statement about it taking ’courage’ to face the world with Aspergers Syndrome.

The article then went on to outline the launch of a short film highlighting and celebrating the stories of children with the condition.  The film came as a result of a number of workshops that were held to investigate some of the challenges that Aspergers kids face.

I was delighted to think that such a film had been produced.  I have posted before about the need to highlight and celebrate the wonderful things about our kids with autism spectrum disorders, and this film is definitely a wonderful contribution to raising positive awareness in our society.

On that note, I’d like to share a story of Jack’s courage recently - not a big ground breaking moment for most kids, but for Jack, it was huge…

Jack had his final orientation day at school last week, in preparation for next year.  The first 2 orientation days had been really successful; they had been for around 2 hours a visit, and although there were a few challenging moments, Jack had coped really well with everything going on around him.

The evening before his final orientation day Steve and I had been to a meeting at the school for a final rundown on some of the details for next year.  During this meeting we discovered that although we had requested Jack be placed in a class with his Kinder friend, they had been placed in separate classes (a little boy who he had been very attached to during the ‘getting ready for school’ process, and whose presence we felt would help Jack make a smooth transition to school).  So the trip home for Steve and I was filled with anxiety as we contemplated how we would break the news.

Jack was devastated with news, as we had anticipated.  After the tantrum, and the ’hurt’ and ’sad’ tears, we had ‘angry’ tears, with the question asked continually ”why would they do this to me?”.  I struggled to fight the tears myself and for a while he just let me cuddle him to me like a baby.  He was scared, and I was feeling scared for him.  Steve (thank goodness he is very practical) managed to bring the focus back to the more positive things about the day to come, and finally we got him to sleep.

The next morning went quite quickly, getting ready for school.  We were finally ready to go when I discovered Jack had gone missing.  Annie and I searched the house, only to find him hiding under a table - the news had hit him again, and he didn’t want to go.  So we spent a while talking, and I convinced him that even though he wouldn’t be in the same room as his friend, it might be worth still giving school a go.  Ten minutes later and we were in the car, and off to school.

This is where Jack’s moment of courage comes in.  We arrived at the school, me feeling sick to the stomach with anxiety, and Jack quite subdued.  We got out of the car, and Jack turned to me and said, “It doesn’t matter Mum, it’ll be okay, I can play with …. at our break time”.  My eyes filled with tears under my sunglasses as he let me hug him.  At that moment I was very proud.  As I said above, not a ground breaking moment for most kids, but a huge moment of courage for Jack.

Elissa

PS - We would love to hear about other fabulous moments of ASD courage…..

Oh, and yes, Jack’s day went well - and he did seek out his friend at break time.

Jack’s favourite place (other than in front of the Playstation) would have to be in the garden.  As do many children with an Autism Spectrum Disorder, Jack has sensory likes and dislikes, and it has been important to us to provide spaces where he (and Annie) would feel really comfortable.  Over a number of years we have worked on creating a ’sensory playground’ for the kids.  And we have also created spaces that would provide opportunites to develop motor skills, as well as let off energy and be heaps of fun!

So we thought we’d share with you a little of ‘Jack’s Place’…..

This is Jack’s ‘running track’, his place to throw and kick balls, and his place to just ‘be him’.  Jack likes having wide open space around him (which is quite ironic considering one of the issues we are dealing with at the moment is recognising other people’s need for personal space).  This is the area where Jack can move freely - he most often runs here (we do laps every afternoon) but rolling around on the ground is also a favourite activity.  Jack loves the feel of grass under his feet, so this is the perfect place for lots of games.

This is a place where Jack goes to hide from the world.  If things get too much for him, or he wants a quiet place to sit, this is often where we will find him (sometimes curled up with the cat).

The play equipment in the ‘kids space’ has been wonderful for Jack.  It has helped him learn and experience climbing, balance and motion (there is also the trampoline and swing set that get a constant workout).

And we are very lucky for Gran and Pa’s contributions to the playground area!

These butterflies have a special place in the ‘kids garden’.  Both kids love to sit and watch the wings flap in the breeze - and if the wind isn’t blowing, they pick them up and flutter them around themselves.  This can be a really calming activity.

This is Jack’s strawberry bush.  Over time Jack has shown a real interest in the practical side of gardening.  He loves digging his hands in the dirt, and looking for worms and bugs in the soil (we’ve found this can keep him entertained for hours!!!).  So the strawberry bush is his contribution to the garden, and he waters it and looks after it all by himself.

This photo shows some of Jack’s favourite textures in the garden.  As we’ve already mentioned, Jack loves the feeling of grass under his feet, but he also loves the texture of the tiny little pebbles on the paths, and the bark chips which lie under the play equipment.

This last photo shows one of Jack’s favourite places to sit and ponder life.  He sits himself on the rocks and plays with his plastic frogs in the bird bath.  He really loves the water play, and again this activity can keep him entertained for a long time.  He tips and pours and squirts the water - it’s a very relaxing place for him to be.

So that’s it for the tour of Jack’s favourite place!  We’d love to hear of others’ favourite sensory spaces to be…