Managing Autism - A Personal View

A great mentor of mine taught me that “writing causes thinking.”

(Bob Proctor)

As we look to begin 2008, it is an appropriate time to reflect on the year that has passed - the year that autism became a real part of our lives - and celebrate the wonderful memories that 2007 holds.

This was the year that we discovered Jack for who he really is - we have learned more about him, and about ourselves as a consequence.  2007 has been a huge year for personal growth, and for developing our family relationships.

This was a big year of relief - finding answers… and with this came plenty of tears as well as plenty of joy as we made our way through the emotional battlefield that comes as part of finding a diagnosis.

This was a year to learn about letting go - and to trust that with enough love, our children will find their way in life.

This was a year for courage, and for finding the strength to move forward.

This was a year for questions, and for simply being content that the answers were there.

This was a year for learning, knowing, and living autism - and discovering that labels don’t have any bearing on how much you can love your child… yes, we love autism completely and unconditionally.

This was the year where our lives were turned upside down, but where our lives started to make some sense.

And as the new year begins, we remember that this year, 2007, was most definitely a year to be grateful for.

Elissa & Steve

WISHING EVERYONE A HAPPY AND JOY FILLED 2008 - MAY ALL YOUR DREAMS COME TRUE!

With Steve’s grandfather in hospital recently, and therefore unable to travel for Christmas, we made the journey on Friday to visit Granny and Pop at their home.

Due to the fact that we had planned the visit around the kids’ normal ‘down time’, it was a lovely visit - and with Jack sitting to watch one of his treasured movies and Annie sitting herself in front of a plate of biscuits we were able to have a very relaxing time.  And we were pleased to see Pop doing really well!!

With us still working with Jack on the personal space issues, he had to be closely monitored when it came time to leave so that he didn’t literally ‘knock’ Granny or Pop down with one of his hugs.  (We are also trying to work on the concept of gentle…)  But he managed to sit for a photo before dashing to the car - he was finished with ‘down time’ and ready for action again.

Our next stop was at Steve parents home - Gran and Pa, where the kids were able to have a play in the swimming pool.  Here we saw an amazing breakthrough for Jack where he actually put his head under the water whilst he kicked along with a kickboard.  For a child who has never liked putting his head under the water, this was incredible!  Annie just enjoyed splashing around in the little boat seat.

Jack kicking underwater - we still can’t believe he did it!!!

Annie and Steve enjoying the pool!

With our previous trip to the grandparents being marred with car trouble, it seemed like we were doomed to have car troubles again (extremely frustrating considering the car is only 2 years old and very well maintained by Steve’s company), with the car deciding to stop running for us.

With the roadside mechanical serviceman delivering the bad news that the car would have to be towed the following morning to the nearest dealership to be repaired, we had no choice but to make the day trip an overnight trip.

The kids hit the crazies for a while with the change in plans, but we borrowed Steve’s mums car at this point and drove to Nan and Op’s (Elissa’s parents home, which was to be our final stop for the day).  In typical sibling style, with Annie sensing Jack’s tiredness and aggitation at the change in plans she managed to push a few buttons to get him going, but with separate activites they soon settled.

We returned to Steve’s parents home to sleep (where the car was) and finally got the kids down to bed before midnight with only a few little tantrums.

The next morning the car was fixed and after some more time in the pool for the kids, we were on our way home by lunchtime.

With all the uncertainty since the car breakdown, and sleep deprivation, a meltdown was brewing from Jack (the scorching 40c heat outside didn’t help much either).  But he did very well to survive the 3 hour trip home -where on arrival we all fell in an exhausted heap.

Thankfully after some Playstation time for Jack and some quiet play for Annie things were finally settled.  We were really glad to be home…

How often do we find ourselves in situations with our kids where everything seems to be overwhelming, too hard to cope with and we just don’t know what to do anymore.

I had a moment like this a couple of months ago where no matter which way I turned, I was finding myself sinking further into a situation that I just couldn’t find a way out of, or an answer to.  We were having to make a decision about Jack’s schooling that was causing us a great deal of stress and uncertainty.   It was the most debilitating feeling, and thankfully as I was reaching breaking point, I made the decision to pick up the phone…

The person I called was Jack’s preschool field worker.  At the time I just needed an outlet - someone to talk to and who might provide some hope.  And it turned out she was just the person I needed, providing the most wonderful guidance and support, and easing much of the heartache I was feeling.

Later she sent me a card. The card read “It takes courage to say ‘help’.”

And when I thought about it I realised that I had been courageous that day.

Too often we struggle with things ourselves because it might seem too hard to ask, or we might not know who to ask, or we might not want to burden others.  But the relief that I felt in making the phone call for help was incredible… it just took some courage…

Elissa

Late yesterday afternoon we decided that it was time for a family activity - the kids were quite wound up and needed some focus.

Steve and I looked at the board games and card games, trying to decide what would be best to keep both kids focused and on task when I remembered the bubble mixture that I had bought a number of weeks ago, and had put away in the cupboard.

It is common for people with autism spectrum disorders to have sensory processing difficulties (relating to such things as touch, sight, smell, hearing etc.) as is the case for Jack.  He has a number of difficulties relating to the tactile senses - for example, he has issues with wearing socks and shoes and clothing, and doesn’t like gentle touch (preferring pressure).

With Jack preferring ‘pressured’ touch, the concept of ‘gentle’ has always been difficult to explain to him.  But recently we have used bubble blowing to help us teach the kids (especially Jack) the concept of ‘gentle’ (having to blow gently to make the bubbles, and how the bubbles move gently, and how they touch things gently).

Bubbles have always drawn our kids in - they love the look and the feel of them, how they move and ‘pop’, and how they seem to magically appear and disappear.

So with some sensory play in mind, bubble blowing it would be - I got the mixture out whilst Steve rounded up the kids and herded them outside.

The bubble blowing was a real hit, as it always is, and even though we lost more than half the mixture from being knocked over on the ground (this is pretty normal) the kids had a wonderful time.

At one point in time we had to stop the activity when Jack, curious about the taste and texture on his mouth, tried to eat the bubbles.  He has never done this before, so it came as a bit of a suprise to us, but after we talked about why it’s better not to eat the bubbles, he went back to just catching them again.  (I’ve made a note to try and find a mixture or a recipe for bubbles that is safe if swallowed!)

Activities like this are always good fun - and after yesterday, we reminded ourselves that we should do them more often!

Elissa

Where would we be without Playstation?

Our Christmas celebrations have been hailed a success.  Much to the thanks of the trusty Playstation, and the DVD player - which kept Jack focussed and relaxed for the majority of the time!

(Jack and his cousin Oscar playing on Oscar’s Playstation) 

Learning from our experiences earlier this Holiday season, we deliberately planned to keep Christmas as ‘low key’ as possible.  And thankfully, all went pretty much to plan.  We kept gatherings as small as possible and planned for plenty of ‘quiet space’ for Jack to retreat to if needed.  We encountered a few hiccups socially (to be expected) but Jack coped really well overall.

When we think back to past years and how we battled the Holiday social scene with Jack, we are just so grateful for how much better things have been now that we are aware of his needs, and how best to allow for them.

Since Jack’s diagnosis of ‘Autism Spectrum Disorder’ was made, family gatherings have often provided perfect opportunities to talk casually about the condition, and for family members to learn a little more about it.

Whilst there are many schools of thought as to the cause of autism, we have always been of the belief that Jack’s condition is genetic; that it comes passed through the family - Jack is the first diagnosis that we know of, but there are certainly signs of aspergers traits that can be traced back through a number of family members.

Today we learned a little more about Jack’s great grandfather and some of the similarities between he and Jack.  Whilst the family history has little bearing on Jack’s daily life, in some ways it is comforting to hear these stories - at least we’re able to make some more connections to Jack’s condition.

So as we breathe a sigh of relief having made it through the major Holiday social gatherings, we’ll leave you with some photos - celebrating Christmas:

I have to say I’m a big fan of Donna Williams and the way she so generously shares her wonderful insights into the world of autism.

So I was delighted when I found her video, Autie Christmas Poem.

It brought both tears and laughter to our house - and we especially related to the line where “a guest has left the door unlocked and Jack’s about to bolt” - where she could have been talking about our Jack (we had an incident like this once at a Christmas gathering where a gate was left open!!!)

Enjoy!

Elissa

It’s Christmas Eve and our preparations for the coming 2 days celebrations with family are in full swing.  Thank goodness the shopping is done, and the presents are wrapped.  Now we have some time to enjoy each others company and reflect on all the blessings we are so lucky to have in our lives.

The kids are bubbling over with excitement, and we are doing our best to contain the craziness (we’ve got an afternoon of energy burning activities planned - lots of walking and running involved).

So to everyone, we wish you a wonderful Christmas (or holiday), and a happy and safe time for all.

xx

Here are some photos of the kids from this morning:

Annie finally convinced Jack to put on the Santa hat and stockings… (yes we did bribe him a little just so that he’d do it for her)… but they weren’t on long enough for a photo… no meltdown though!!! Yay!!!

We hope that you can take the opportunity over the next few days to spend some time with your kids, just being grateful for the wonderful people they are…

HAPPY CHRISTMAS and much love to you all!

Elissa, Steve, Jack & Annie.

xxx

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…