Managing Autism - A Personal View

We’ve written before on the importance of a person with autism having routine in their life, and today we were reminded of it in no uncertain terms!!!

After a really busy week, this morning we let our guard down a little with schedules and meals, and boy have we paid for it!  We have ’suffered’ with increased anxiety, noise, aggitation, whining, arguing, and aggressive behaviour.

When we are following a strict daily routine and menu plan, we tend to forget what it is like on ‘the other side’.

So we have again decided that ’spontaneous’ is somewhat dangerous and can really send us all a little crazy!

Long live routine!!!

People often ask us the question, “how do you cope?” or “how do you do it?”

Usually they are referring to some issue relating to Jack’s autism spectrum disorder.

It’s funny, but our coping strategies for much of what we face have become such a normal everyday part of life that they no longer seem ‘a big deal’ or ‘autism related’.

Most parents have strategies in place to deal with challenges they face in relation to their child - this could be anything from difficult behaviours, to learning difficulties, to ’childhood fears’.  Parents have methods in place to help their child manage life in the best way they can.

Parents of a child with autism are no different.  Yes, many of the strategies may be more involved and specialised than those used for other children, and they may require more persistent use and focus, but overall they have the same purpose and are put in place for the same reasons - to help the child (and parent) manage life in the best way they can.

We often take for granted what we do on a daily basis.  Occasionally we might overhear a parent describing a tantrum that their child threw in the middle of the supermarket - usually the parent is mortified and completely at a loss as to how to manage such behaviour.  At these times we usually smile and reflect on how life evolves.  It is not our intention to disregard this other parents distress at all, but tantrums have become so ’second nature’ that we don’t stop to think about them much now.

As parents we adapt to what life presents us.  It’s only when we stop and look around us that we realise that everyone has challenges at different levels and that amazingly enough, the strategies that develop to manage and cope with these challenges simply become a way of life.

This post is about gratitude.  I have written before about being grateful for what life has put in front of me, but today I write from a slightly different perspective.

I spoke recently with a very dear friend of mine, who has a dream of being a parent, but who is finding the road to becoming a parent fairly windy and difficult.  I have a couple of friends in this same situation, and over the last few days these friends have been at the forefront of my mind.  I have spent a great deal of time reflecting, and wishing so much that I was able to give them a gift of hope and love.

So often we can get caught up in the ’stuff’ that goes with parenting a child (especially when the child has special needs) that we forget to take the time to appreciate the wonderful gift we have been given.  We have had the opportunity to bring a special life into the world and to share in this life - no matter the struggle that comes with it.

So this post is dedicated to these special friends whom I love very dearly and who have so much to offer the world.  Today, may we be grateful for the wonderful opportunity that we have to parent children and hold in our hearts with love those who dream of this gift.

LOL

Elissa xx

Well, tomorrow is the day - Jack’s first official school transition day.  And in terms of preparation for the event (social stories, role playing etc.), I seem to be turning everything upside down and the wrong way around.  I’ve lost all sense of sequencing and can’t seem to settle into a preparation pattern (My own anxiety coming through?? - yes, definitely, of that I am sure!!).

As I wrote in a previous post, Jack has had plenty of visits to school already.  He has been in classrooms, played in the playground, watched children coming and going from different areas, and spent a great deal of time ‘talking’ about school.  He even has a little friend at the school already who he has spent some time with at school (in the ’safety’ of after school hours).

Over the last few weeks, everything was on track for a smooth run into the day until Jack discovered that there would be ALL the new children there at once and that there would be a teacher who would take them through activities (rather than he just playing).  He was freaked out at the thought of being left alone and without Mum or Dad, but we assured him we would not leave him anywhere until he felt safe.

I guess like always, we will just take one step at a time and take it as it comes tomorrow.  If we are looking like we are headed for a meltdown we can always just take a step back.  Fingers crossed all will go well!

Elissa

Our Son has Autism

He is:

A udacious

U nique

T enacious

I ndividual

S ensitive

M ethodical

He has a special place in this world

We posted recently about literal language and the difficulties that people with autism face trying to negotiate language, and just yesterday, we posted about the struggles that people with autism face navigating their way around social cues.

Jack had a conversation with his Uncle Mike yesterday that we could see left his head spinning - and once we worked out the basis of the conversation, there was no wondering why!  The two of them were discussing Jack’s toy car.

“The car has Hub Flaps” Jack announced as he disected his ‘dismantable’ toy car.

“Hub Flaps or Mud Flaps?” asked Mike.

“Hub Flaps” said Jack with certainty.

“Oh of course!” said Mike, “I forgot that hubs have flaps and and that mud has caps - on the wheel.”

Jack looked at Mike a little unsure.  “Hub Flaps here and Mud Caps here” he said pointing to the different parts of the car.

“Yes, that’s right,” said Mike, “Hub Caps, no I mean Hub Flaps and the Caps Flaps keep the mud off.”

At this point Jack’s head went down with all focus on the car.

“Hub Flaps” he said carefully.  Then for a few moments he said nothing more.  Then he looked up at Mike and said, “I think I’ll just leave those bits off the car.”

Looking on from the outside, it was just too confusing.  Not only had Jack lost all sense of what was happening, but Mike was starting to question his own line of thinking!

We laughed at them both, commented that Mike was being silly, and moved on in conversation.

A total language breakdown, yes, but at least there was no meltdown over it!!!

It is common for people with autism to either struggle with understanding social cues or to be completely oblivious of them altogether.  Social cues usually require interpretation and have the potential to cause a great deal of anxiety for people with autism (where social development is often delayed).  We had a number of experiences today with Jack that reminded us all too clearly of this fact.

We spent some time outside today playing with some of the children in the street who Jack knows quite well, as well as having my brother and his girlfriend call in for a visit.  Jack coped really well with the extra people around (only a few instances of inappropriate language and head butting/physical outbursts), but a number of times we could see the look of total confusion on his face as he struggled to make sense of what was going on around him.

With Jack being relatively relaxed in his environment we were able to stand back and observe him from a distance, and we could see where he literally stopped what he was doing purely out of confusion as to the social happenings around him.  At times remarks and gestures were made and Jack’s face would go blank as he looked from one person to another.  Sometimes we could see the realisation of what had happened come over his face a couple of minutes later, and sometimes he missed the meaning altogether (then taking some time to get back ‘up to speed’ before rejoining the activity or conversation).

Although there were moments that were difficult for Jack, it was a great opportunity for us to be able to pull him aside and explain some of the things that were happening and what different things meant.  (We don’t often get to do this as we are usually caught up with ‘behavioual stuff’ with him.)  In fact, we could almost see him relax once he had an explanation and was able to understand what was going on around him.

We have now set ourselves the task of spending more time with him on this particular area of development - looks like more role playing and social stories are on the way…

Routines are imperative for people with autism - and Jack is no different.

We have routines in our house for most things, and sleeptime is no exception.  This is where routine really is vital - with no room at all (in Jack’s eyes) for error.

When Jack first gets into bed, the sheets are straightened, with the foldover measured perfectly against his chin.  The sheet must cover his bed to exact standards, with no creases, and definitely no gaps at the sides.  Honeybear (who has been with Jack since birth) takes pride of place with his head on the pillow next to Jack’s.

Songtime comes next.  A tune about Jack being loved and ‘the best boy in the world’ (based on the traditional “3 Little Dicky Birds” that Jack came to depend on as a baby), is sung by Mum, verse by verse (5 in total) whilst his hair is being rubbed firmly.  (Sometimes the hair rubbing is replaced with feet holding or pillow pressure on his body, depending on his mood for the day.  And if Mum is away for the night, Dad needs to call Mum so that she can sing the song over the phone.)

After the song, 3 kisses on the cheek follow with another rub on the forehead and “I love you” said back and forth about a 1/2 dozen times.  The light is always left on and a drink of water must be left next to the bed for ‘just in case’.

The whole routine takes about 5 to 10 minutes to complete - and yes, if for some reason Jack has to get out of bed, the routine starts from scratch!

Then, if he wakes during the night… well, that’s a whole different routine again…

Autism often receives much negative ‘press’ (so to speak) so today we want to give gratitude for some of the wonderful things that autism has brought to our lives.

1. Autism has shown us a different view of the world, that we would never have otherwise had the opportunity to experience.
2. Autism has brought us closer together as a family - we have had to overcome struggles together, and learn different ways of communicating and developing with each other.
3. Autism has given us a greater understanding of some of the challenges faced by many people all over the world - we are definitely not alone!
4. Autism has given us the opportunity to develop a greater sense of tolerance, understanding and acceptance of others and ourselves.
5. Through having autism as a part of our lives we have had the opportunity to meet some amazing people and hear and learn about many wonderful things that others give to our world.

We are lucky to have autism in our lives.  We are not disregarding the fact that there are always challenges that come as part of the package, but who we are as people is so much richer because of it.

Lines, lines and more lines.

Lines of toys, lines of books, lines of any object at all.

Lines are a common theme for many people with an autism spectrum disorder.  People with autism generally thrive on order and repetition in their lives (which is why structure is so important to them).

It is common to find that children with autism line up their toys, usually in an order that makes sense to them.  (In our house we have lines according to size, or it may be lines according to colour, or lines according to ‘likeness’ of some sort).

Lines are predictable and ordered. 

Lines can bring a sense of comfort and control - they can bring a sense of calm to the craziness and uncertainty of life.