Managing Autism - A Personal View

Elissa has taken Jack out for a play date this morning, which means I have posting duties - so I thought it was about time I introduced one very important member of the family who we haven’t written about before.

So here he is…

meet Max.

Max is who we affectionately know as our ‘other Aspie’.  He and Jack are very similar in personality - they both like to be in charge and run the household.

They both have their moments of being extremely cuddly, but have a bit of a fiesty streak (a little hyper) as well.

They both like to think they are very independent, but at the same time, they like to have everything done for them.

Sometimes they drive each other crazy when one races around the house and the other is on full ’sensory alert’, but most often they are very understanding of each other  - they seem to sense when the other needs cuddles and as such, Jack’s bed is one of Max’s favourite spots to sleep (right next to his head if he can!).

Max is a very much loved member of the family, and at times has been wonderful at helping to calm Jack - who would have thought?

Steve

The last few days have been quite chaotic with Jack, and meltdowns have been running high.  We’ve had tears, we’ve had yelling, and at times we’ve had total out of control behaviours.

Why?  The only thing we can attribute the heightened irritability to is the ‘let down’ following the Christmas / holiday season - or maybe it’s the current heat wave we’re experiencing.  We’re not sure, but we are all very much worn out and looking for a reprieve (from heated behaviours as well as weather)!!!

If we can just make it through one more day…

And to add to Jack’s meltdowns, Annie has developed a sudden fear of not being able to find us - she cries and whines or screams every time she notices one of us has left the room (if we haven’t told her we’re going), and we are battling to get her to sleep during the night.

All combined it doesn’t make for a very calm household at the moment.

So, if we can just make it through one more day…

How is it that we can pick ourselves up and just keep going?

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…

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:

Aspergers traits have been in full swing this week as we rapidly approach the peak of what is often referred to as the ‘Silly Season’ (what we better know as Christmas).  As things have been getting a little more hectic we’ve seen quite a lot of hand waving whilst talking, more intense talking and questioning (as well as the ‘mechanical’ robot voice every now and again), and more intense emotional ups and downs.  We’re also being held to strict timetables with Jack watching the clock continuously and keeping us on our toes with our schedules.  Structured activities have been a must for this week!!!

We’re pleased to say that we learned our lesson from the Kindergarten Christmas Party, and as a result avoided 2 potentially challenging parties this week (Steve took Anna to her creche Christmas Party on her own, and we made the decision that Steve would attend his company Christmas Party without the rest of us - excellent decision making we must say!!!)

We have recovered from the tears of the Kindergarten Goodbye (although Jack is still asking us when the next Kinder day is) and we also welcomed Jack’s new teacher to our home for a visit this week.  We already feel very blessed with having her as Jack’s teacher - she has been really keen to get to know Jack and his interests, and has been working very hard preparing the way for him to start school next year.

We chatted with Jack’s PreSchool Field Worker this week (thankfully we don’t have to say goodbye to her until the end of the first term of school when she has to close Jack’s file) and she is delighted with how he has progressed and in her words she expressed that ”I think Jack might just surprise us next year”.  I’m really hoping he will!  With all the hard work we have done this year in terms of paving his way for the coming few months, it would be lovely to see it all pay off and him thriving in a supportive school environment.

So to finish this week we thought we’d share some pictures of Steve and the kids having ‘drawing’ time.

Hope you all have a lovely week to come!!!

Elissa & Steve

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!

Today we came to the end of one journey, as we looked ahead to the future, and the beginning of another journey.

Jack had his final day of Kindergarten today - a day that I had been anticipating with much trepidation.  Jack first walked through the Kindergarten doors almost 3 years ago now, beginning a journey that at the time we thought would involve 2 ’straight forward’ years of early learning and preparation for school.  Jack’s Kindergarten journey stretched to it’s 3rd year very early on, when the decision was made for him to spend 2 years in the ‘Junior Kinder’ group before moving to the ‘Preschool’ year (due to his ‘needs’ in the area of social and emotional development).  And when he crossed the threshold of the Kindergarten at the beginning of this year we had no idea of the learning curve we were about to embark on, or the challenges we were about to face.

We have made mention in previous posts of our journey to diagnosis, and this journey (taking place over the last 12 months - during Jack’s 3rd year of Kindergarten) was shared very closely with the Kindergarten staff - who for much of the time took the journey with us.  Jack’s teachers shared with us the highs and the lows of a really difficult time in our lives, and they supported us with every ounce they had to give, playing such a significant part in Jack’s growth and success over the last few months - giving him the love and care that he needed to become who he is today.

So I faced today with trepidation… today was the day that we would say goodbye… today was the day that we would step out of the Kindergarten looking to the future…

A ‘Christmas Concert’ had been planned to finish the day at Kindergarten today, and along with all the other parents, I arrived with camera in hand and a very proud smile to watch the singing and dramatic performances.  Jack was a delight, coping extremely well with all the activity, and even managed to take on a special role of ‘putting the toy lions in the cave’ during a singing performance.

The Concert finished with a visit from Santa (who had gifts for the children), and with the children presenting us (the parents) with handmade gifts, paintings and photo memory books of their time at Kindergarten.  It was a really lovely moment, and best of all, Jack was happy and relaxed, and really enjoying himself.

Before I knew it, departure time was upon us, and I prepared to say goodbye… knowing that today was the day that we would step out of the Kindergarten looking to the future… a future at school, and a future with new faces and new experiences…

Brushing the tears aside, there were hugs all around, and Jack even stood still long enough for ‘goodbye’ photos.  We will hold this year of Kindergarten very dear in our hearts.  It was the year that our world was turned upside down, but it was also the year that we discovered Jack, and the year that life began to make a little more sense.

And so we look forward… with the past in our hearts forever… thank you to the wonderful staff who helped us hold it all together… Jack will miss you… and we will miss you…

Jack standing outside Kindergarten as we left for home - saying goodbye and treasuring some wonderful memories!!!

Jack sitting with Santa, having received a gift at the Kindergarten Christmas Concert.

Posted by a Tearful Mum…

“Stick by rules and we can’t go wrong”….. famous last words…..

Last week was the Kindergarten Christmas Party - the much anticipated event of the year at the Preschool, and of course, Jack was excitedly anticipating it as much as any other child at the Preschool.

As many of you would remember from a recent post, we had made the decision this year to ‘re-structure’ our holiday social gatherings around the needs of an ‘autism spectrum disorder’ - translating to; be a little more ‘low key’ with our celebrations, and better plan and structure our outings.  However, with the Kindergarten Party being so high up on the ’social’ calendar for Jack, we relented on the ‘low key’ thing, and made the decision to face it head on.

So the afternoon of the Kindergarten Christmas Party arrives, and we sit down to review our plan for the occasion:

• We have been informed that Jack’s dietary needs (which are similar to some other children at the preschool) will be catered for, so we cross that off our list.
• We are very familiar with the layout of the Kindergarten yard (where the party will be held) so potential exit points are under control - cross this off the list.
• We have a schedule well organised - what time the party guests will arrive, what time food will be served, what time Santa will arrive, and what time we can leave - cross this off the list.
• We are familiar with many of the children at Kindergarten, so the guest list seems fairly manageable (as far as being a ’safe’ crowd) - cross this off the list.
• We have the yard marked out for supervision points - where we will position ourselves in order to have full view of every part of the yard so that if Jack is running (faster than we can keep up) we will still be able to fully supervise him and be by his side in a split second if needed, so we cross this off the list.
• Drinks and chairs are packed up next to Annie’s stroller (the preschool is within walking distance so we decide this will be a better option - takes out the extra issues that come with getting in and out of the car) and we are quietly confident all will go well.

Watching the clock closely, we plan our departure from home precisely to allow for the 5 minutes walking time to Kindergarten (allowing to arrive 15 minutes before the Party kicks off so that we can be settled in place before too many people arrive).

Sparing all the gory details of the Party, 1 1/2 hours later we arrived home, completely worn out and exhausted.  Have we learned our lesson?… hopefully yes (although how often do we forget again over time???).

According to Jack he had had a wonderful time at the party, but with the sensory overload of it all he had become totally hyper, had run nonstop to the point of causing himself nose-bleeds, and we had struggled to get any verbal instuctions though or have him make any form of eye contact.

We saw Santa briefly………. and did we eat?… well if you consider a sausage in bread (an Australian tradition to those of you wondering) on the run….. that was about it before we finally made our ‘well executed’ (considering the mayhem around us) exit, dragging 2 exhausted children home.

Now what was that about “low key”?….. famous last words!!!

Steve