Managing Autism - A Personal View

Yes, we survived, and yes, the day was a success.

As Elissa indicated in our previous post, the preparation for the Birthday Party was nothing short of ‘professional’.  We had worked for days with Jack on social behaviours and the natural consequences of any choices he might make (and thanks Bonnie for your suggestions - we added these on the morning of the event just for good measure)!

The Party was scheduled to run for around 3 hours and initially we were prepared to exit at whatever point necessary - even before the party got underway if we needed to!  But Jack handled himself and the environment superbly. 

Taking the safest option, I stayed right by Jack’s side for much of the Birthday Party.  I was constantly planning one step ahead and analysing any potential threats to his state of mind but remarkably he remained calm and clear headed for most of the time.

We actually made it through the full length of the Party - about 10 minutes before the end (naturally at a time of changeover when many of the other children’s parents began arriving to pick them up) his ‘eyes rolled back’ and the behaviour started to become somewhat impulsive but we swiftly made the move towards the door and managed a graceful exit before things got out of control.

During our usual ’post-event debrief’, Elissa and I discussed just how ‘on the ball’ you need to be with a child such as Jack.  There is no room for letting your guard down, and you can’t afford not to prepare yourself well in advance.  But when you can walk away from an occasion such as the ‘Birthday Party’ and feel as proud as I did of how he handled himself, it is definitely worth all the hard work.

Steve

Today was the day.

The decision was made - affirmative.

The alternative food options were prepared and put in place.

Social stories had been rehearsed as required.

Background checks had been done on the venue and guests attending.

Steve had been promoted to the position of Chief of Operations Control.

Objectives had been set and exit strategies were in place.

The vehicle was packed and prepared.

Mum was given a big kiss and a hug goodbye and the Operation was underway.

Steve remarked today about how much he felt like a ‘Secret Service Agent’ preparing for an important mission.  I remarked that his wild fantasy based imagination more than made up for Jack’s reality based imagination!

He did however, have a good point.  The preparation that had gone into ensuring that Jack had every opportunity for success at the Birthday Party he was going to attend was incredible - and not to mention exhausting!

It was worth all the hard work though as the day was hailed a success.

Steve will post all the details tomorrow - he is presently in recovery!!!

We came across this poem written by Wendy Lawson (http://mugsy.org/wendy), and it describes so well the struggle autistic people go through in regard to change.

Change, change and more change,
Of context, place and time.
Why is it that life’s transient stage,
Plays havoc with my mind?

You said, “We’ll go to McDonald’s”
But this was just a thought.
I was set for hours,
But the plan then came to naught.

My tears and confused frustration,
At plans that do not appear,
Are painful beyond recognition,
And push me deeper into fear.

How can life be so determined?
How can change be so complete?
With continuity there is no end,
Security and trust are sweet.

So, who said that change would not hurt me?
Who said my ‘being’ could not be safe?
Change said, “You need continuity”
In order to find your place.

For change makes all things different,
They no longer are the same.
What was it that you really meant?
All I feel is the pain.

It really puts things into perspective!

I have written before on the pro’s and con’s of labels, and this post is far from a debate or discussion on that topic.  It is simply a reminder that words and actions are powerful and have an incredible effect on our children.

So find some ways to ‘free your child’ from what may restrict them in life:

• Find opportunities for your child to see themselves in a positive light - help them to see what they are good at and what is great about them.
• Put your child in an environment, and in situations, where they can succeed.
• Talk positively about your child to others - and let them hear you saying great things!  Having a special person believe in them and speaking proudly of them will do wonders for their self-esteem.

Too often (even without us realising), our children with autism have limits placed on them simply through the language we use and the actions we take around them.

Take the time to create an environment for your child’s life that is full of potential and belief - ‘free your child’.

“We need a spray for the wax in our ears Mum!”

Every ten minutes (consistently) for about an hour yesterday, Jack came to me with this statement, with his arms up beside his head and fingers pointing madly at his ears.

All I could do was look at him in wonder and say, “Yes, Jack”.  I was stumped for a response.

I don’t know if it was the fact that I was surprised he even knew about wax in ears, or that I was surprised with his idea of a spray to get rid of it?

Steve solved the mystery for me later when I was relaying the ‘newest idea’ - there is an advertisement on television for an ear spray.  Jack had obviously seen the advertisment appear every ten minutes and then proceeded to make his announcement.

Today started with yet another comment about ear wax.

I decided to restrict television watching to DVD’s for the time being.  Hopefully he passes over this interest quickly.

Jack has received an invitation to a birthday party for this coming weekend.  The birthday party is for a friend of Jack’s - a little boy he has known for a couple of years.  Whilst excitement is brewing over the idea of a party, there is a lot of nervous energy also building up.

Jack loves the idea of socialising and parties, it’s just the reality of it all that totally freaks him out.  He wants to have friends come to our house to play and he wants to be able to go to other kids houses and parties but when the time comes he struggles to manage - the anxious behaviour kicks in (literally) and he becomes totally overwhelmed.

The last party we ventured to was around 6 months ago and was for a ‘kindergarten friend’.  It was a total disaster - tears, tantrums, kicking other children, and inappropriate language.  The memory of it all is still very fresh in our minds and that makes us uncertain about whether or not we tackle this one.

So after much deliberation, the decision has been made to take the party one step at a time.  We have confirmed that the party is quite small, and that we may leave early without offending anyone.  We will make a choice on the morning of the party as to whether or not we go (depending on the mood of the day) and if we do go, we will take it slowly and without expectation.

Now it’s social stories and role playing until then!

A huge hurdle that we have been working with Jack to overcome is that of using aggression and violence to cope with whatever he faces in day to day life.  With Jack, anything from having a toy taken from him, to having a change take place in his routine that he wasn’t prepared for, to meeting a stranger (or even a familiar person that he wasn’t expecting) can evoke some sort of aggressive behaviour.

When Jack was a small child aggressive outbursts were easier to deal with and brush off as simple tantrums that all kids have.  As he has grown older, the aggressive outbursts are much harder to deal with and a lot less simple to ignore.  A child of nearly 6 years of age can cause an incredible amount of damage and hurt when upset and when violence is the only way he can manage to express himself.

As mentioned in an earlier post, roleplaying has been a strategy that we have used for a long time to practice alternative responses to aggression and violence.  Picture cards are also something that we use regularly.

Recently we have been trying to teach Jack to “tell a grown up” when he feels angry, scared and frustrated (words that we have used with him to describe the feelings he has that make his body feel yucky).  We are hoping that when he begins school next year, whatever about anything else he does, he will at least be able to ‘use words’ to seek help when he feels like his body is about to explode with anger and aggression.  (And hopefully avoid some major fist fights and injured children and property in the process.)

I have survived!

House clean, kids clean, promises all round not to tell Mum about the picnic on the bedroom floor…

Jack thought it was great fun and wants to do it again next week.

Success!!!

(And better still, by the time Elissa reads this it will all be over.)

After a hectic first night, and visits from both kids during the night I finally have the feeling that I am getting on top of everything. I have the kitchen sparkling from the night before, living room now resembles a living room and not a rubbish tip - and the kids have settled down to breakfast with out even a wimper.

At this point I am quite pleased with myself… I have not had to call anyone yet (Elissa, other family, or even emergency services!) have managed to keep the house in a relative clean state with no major spills and most importantly of all the kids behaviour is leaning more towards good than evil!…. I can actually do this!!! A win for all the dads out there.

I knew it couldn’t last…………………………………

As the morning unfolded, I stuck to my cunning plan that would enable me to watch todays game with limited interuptions - run the little guys off their feet so that they were so exhausted that they would fall asleep, or at the very least sit quitely and play. (I know I was dreaming, but I was desperate!!)

We went to the pool, then the play centre, walked to the shops for some lunch ( they were tiring, but not giving up yet) back to the park and they finally decided that they wanted to go home - success!!!! and just in time because the game started in 1 hour.

Both Jack and Anna were being very quiet, and announced to me that they wanted to go to Jack’s room for some quiet games time. What a great idea I thought, and with my blessing the kids trotted off to play in Jack’s room. I turned the game on and settled in for the afternoon quite pleased with myself. About 5 min into the game, I got the munchies - went to the pantry to get the snacks and noticed that something was missing. After searching the entire cupboard, I thought the impossible must have occured…… I walk slowly down to Jacks room, still not quite believing that they could out smart me…… Yep, there they are blanket spread out and picnic in place playing beautifully - who wouldn’t be when your picnic consists of mars bars, jelly babies, and the worst of all an empty packet of cheezels!!!!!

Swear words enter my mind! I clear the food as fast as I can with Elissa’s words ringing in my ears, “Whatever you feed them, avoid cheezels at all costs, Jack will be swinging from the light fittings if he even smells them in the house.”

My attempt to return to the game - no chance… My idea of the kids having a quiet afternoon - disappears faster than I can clear the food from Jack’s bedroom floor… Damage control being the only option now with the effect of the cheezels already kicking in…

One more night…

After a mild panic attack, I gather myself together and focus on what needs to achieved for the evening - Dinner, bath, stories and of course clean up. As I am helping my wife with the last of the packing, I am picturing in my mind how the weekends events will unfold.

After many hugs and kisses, and a handover of a long list of instructions the kids and I wave as my wife drives off into the sunset for her weekend of freedom. As I get the kids back inside the house, I start to plan the strategy for the evening. First thing dinner…….. something easy to prepare like stir-fry, spaghetti and of course take out. Stir-fry it is, and I start to chop the vegies.. ” What you doing Dad?” asked Jack.

“I am making dinner for us mate, do you want to help me?” I reply with a little bit of desperation.

“You are chopping it up all wrong Dad, Mum doesn’t do it like this - Mum chops the carrots like this” as Jack paints a picture in the air.

I didn’t think that my first call to Elissa would be to discuss how to prepare the carrots! The recent episode of apple “boats” is still too fresh in my memory. I decide to scrap the stir-fry, and prepare the foolproof traditional dish of eggs on toast.

Dinner passes the 2 kids test, and we move on to the next challenge…. the bath.

“Dad, I don’t want a bath”

“You have to have one Jack”

“Only if you can catch me, come on Anna lets run!!”

I now have two naked kids running from room to room, working in tandem to avoid capture - After many tears, and screaming out for Mum, (the kids did some crying as well) they finally tire enough for capture, are bathed without any further problems, and are finally put to bed. 

This is going to be a long weekend…….

To be continued. 

  Thanks Casdok for my award, I feel very honoured - even if I can’t chop carrots, at least I’ve made someone smile!