Managing Autism - A Personal View

Today’s thought for the day: 

“When I loved myself enough

I quit wishing my life looked some other way and began to see that as it is, my life serves my evolution.”

Kim McMillen

May we find the beauty and joy in what life is for us!

Elissa & Steve.

With the chaos of yesterday (previous post), we had the unfortunate situation of being without Jack’s usual food.  As part of Jack’s autism management we have been following the GFCF diet suggestions.  That morning before we left home, we had packed sandwiches and snacks to last us through most of the day (aiming to be home in time for dinner), but of course, being held up along the way kind of threw out the idea of Jack staying free from those foods that affect his behaviours.

When the Diet is gone, you really remember why it’s there in the first place.

Having run out of food shortly after our stop at the service station on the outskirts of the city, we had to resort to the take away ‘cafe’ food available at the service station.  For most people it would have simply been a matter of contending with food that could best be described as greasy, cold and rubbery - for Jack, it was a gluten, dairy and artificial colour and preservative heaven!!!

We managed to steer him away from iced donuts and cream cakes, with hot (kind of luke warm) chips seeming the best option.  But with the weather the way it was (scorching hot in the shade), Jack wasn’t having a bar of that idea.  So a sandwich it had to be - and of course, cheese and ham was the only available filling, on wheat bread.  Jack’s eyes lit up when he realised what he was about to be given to eat (yes, we had managed to provide him with gluten, dairy, and hyperactivity causing preservatives), and it wasn’t long before his whole body lit up as well (hence the car and the giant bouncing machine??).

Did I mention that when the Diet is gone, you really remember why it’s there in the first place?!?

All I can say is that thank goodness he slept most of the added hyperactivity off overnight - and the extra sensory agitations should be gone by the end of the day!!!

Little did I know this morning when I jumped out of bed (feeling surprisingly fresh and alive for a Sunday morning) what adventures would lie in store for me today.  Today we were making the 3 hour trek to Steve’s parents home, to collect the kids’ rather large sized birthday present that Gran and Pa had bought for them.

Keeping well to our planned schedule we hit the road mid morning with the trailor on the back of the car, and even after a few toilet stops along the way for the kids (as well as a ’carsick’ stop for Jack about 10 minutes from our destination) we arrived in good time.

After a short stop (Steve’s parents weren’t home, it was simply a collection trip that involved loading the trailor, and more toilet stops of course!!!), we loaded the kids back in the car and headed onwards again.

We were doing so well with time that we decided to make a short detour via my parents home (only about 20 minutes out of our way).  We hadn’t told them we were coming, and unfortunately we discovered they were out for the day, but we had a quick catch up with my brother (and again more toilet stops) before heading on our way again.

Considering the ‘carsickness’ and the multiple stops we had made for the first part of the trip, Jack was coping extremely well with the day.  So we decided to stop for an ice cream and a play in a park - the idea was to give the kids a good run around before we set off for the last 2 1/2 hours of the trip home.

Here is where the day began to ’spice up’ a little.

Steve thought he would make the most of the kids being busy playing at the park, and would take the time to go and put gas in the car.  10 minutes later he arrived back at the park - no gas, but putting it down to the fact that he thought the service station had had a problem with the pumps.

We loaded the kids back into the car, deciding that we would take the freeway, and then stop to get gas at the major service station on the outskirts of the city.

10 minutes down the road, and the first of our many stops home.  Anna told us in no uncertain terms that she had to do a ‘poo’.  Luckily we carry a potty in the boot of the car for roadside emergencies (we live in a regional area and so are quite used to being some distance from a toilet when the urge arises for the kids).  A couple of minutes later we realise we have a false alarm, so we head on our way again - hassle free to the service station on the outskirts of the city.

Arriving safely at the service station we pull up at the gas pump.  Steve jumps out of the car, attaches the pump to the car… no gas……….

“Are you doing it right?” I ask.

Steve works for a gas company, so I get the look from hell, and he tries again… no gas……….

By this time the kids are in the front of the car with me.  It’s either the heat or the uncertainty of ‘what next’ that has finally got them, and I can see the look in Jack’s eyes…  “Please God”, I say to myself, “Please God, let there be gas!!!”

Steve makes the decision that it must be something wrong with our car.  Other people are managing to use the pumps around us with success, so he figures there must be a reason why our car is not ‘letting the gas in’ so to speak.  He calls roadside assistance from his mobile phone and we prepare for a long wait.

So 2 hours from home, in scorching heat, we pull up at the back of the highway service station, with the trailor on the back, surrounded by trucks, and all I can do is breathe deeply and hope like nothing else that this is somehow all a dream.

From here things became a little blury.  As the kids turned the inside of the car into a giant bouncing machine (thankfully anyone from the outside could see ‘little bodies’ or else I’m sure they would have been wondering about the shrieks of delight coming from within), I had visions of being stranded overnight, with 2 possessed children and a ‘huge ugly trailor’ that carried the reason for the trip.

1 hour later and a tow truck arrives.  “No the car is not broken down”, says Steve.  “We don’t need towing, we need someone to fix our gas problem”!

The truck leaves and we continue to wait for the roadside mechanic, who for some reason was skipped in the process (the delightfully helpful person (yes, sarcasm) who Steve had spoken to earlier had obviously just decided to save himself some effort and had jumped straight to the tow truck that was going to tow us to the nearest Ford dealership and leave us and the car and trailor stranded - still 2 hours from home on a Sunday afternoon!!!).

With another 1 hour wait ahead of us, and the sun seemingly getting hotter every minute, Steve decided to try the gas again.  With luck, he was able to somehow get the car to take enough gas to get us back on the road and heading towards home.  I breathed a sigh of relief and was starting to see the light at the end of the tunnel.

Well, another 10 minutes down the road, and what do you know, another toilet stop (like we had only had 6 trips during our wait at the service station).  More deep breathing, a major meltdown brewing, and I climb into the backseat with the kids.  Squished like a sardine I read stories until 2 little bodies start to nod off to sleep.

1 1/2 hours later and home is in sight.  My body is numb by this stage from still being squished in the back seat of the car.  As we travel through a small town, Steve takes a back street and slows down enough to keep the car in motion so that the kids keep sleeping, but to allow me to climb over to the front (a sight in itself!!!).

No luck with the motion thing - the kids wake… and yes another toilet stop…

This time Jack announces, in his usual loud and serious voice, his desperate need to ‘poo’.

All I can do is laugh - a type of delirious laugh.  The flies are swarming, the heat is intensifying, but we make it through the (thankfully) final toilet stop for the day.

As we pull into our driveway, 3 hours later than we had initially planned, I take another deep breath of pure relief… and then I remember the state of the house from this morning.

Oh well, I can clean tomorrow.

Jack is 6 today!!!

Being extremely excited (and of course methodical and consistent in life), Jack has been counting down the days (each morning and evening) for the last 3 weeks.

And as normally happens on ’significant’ days, the first meltdown occured very early on in the day when the idea of it being his birthday all just seemed too overwhelming.

Jack loves people to sing ‘Happy Birthday’ to him, but then it becomes too much for him and he head butts and flaps his arms around (and jerks his face and makes loud noises) whilst the song is in progress.  We haven’t worked out if it’s a happy reaction or if the reason he does it is because he is not able to cope well with the attention on him.

We’re trying to keep most of the day fairly quiet for him.  We have an outing planned later on in the afternoon - swimming followed by fish and chips for dinner (Jack’s favourite).  Jack has invited a friend to join us, but we have steered clear of a birthday party as such (we have enough trouble coping with going to other kids’ birthday parties without having to try and deal with our own!!!).

So another year has passed, and our beautiful boy is a little more grown up.

Happy Birthday, Jack!

We all love you lots.

xxxxxx

What a week!

We had a lovely night away - the kids coped really well away from their normal routine (although at sleep time Anna kept telling us she wanted to go home now!).  The return home was a little more of a challenge though, it was almost as though they crashed after making it through the 24 hours of ‘new’ things.  The kids were both a little unsettled getting back into the normal swing of things, but luckily enough today they have woken fresh and settled.

Jack’s first day of school transition happened this time last week, and was a roaring success - better than we could ever have anticipated.  As do most children with autism, Jack struggles with change, and often finds it difficult meeting new people and getting used to new settings and environments.  Thankfully our months of preparation leading up to the official transition program paid off.

I think I have mentioned before that we had been taking Jack to school regularly for short visits - starting with simply walking around the outside of the school grounds out of school hours, slowly working up to walking through the buildings and classrooms during lesson time, to the ‘big one’ where Steve spent a lunchtime with him sitting in the playground when it was full of kids (and of course, loud, busy, and extremely stimulating!!!).

On arrival at the school for the transition day Jack was very ‘hyped’.  Before we entered the school building I had to grab his hand to slow him down and sure enough this resulted in a ‘minor’ meltdown, but a short time later we were on our way in, and Jack settled very quickly whilst joining the other children in the classroom.

I was very anxious about leaving Jack on his own in the new surroundings, and Steve and I had discussed prior to the day that if he showed any anxiety at all about us leaving we would stay in the room with him for the duration of the session.  But within about 10 minutes he happily said goodbye, knowing that we would be having morning tea with the other parents in the hall across the other side of the playground.  I was absolutely amazed at the way he settled in - perhaps the couple of familiar faces of other children from Kindergarten helped!

I watched the clock for the entire 1 1/2 hours that he was without us, wondering if he was okay, and hoping that if something went wrong the teacher would be able to manage.  But when we arrived back at the classroom, his teacher told us that he had managed extremely well, and hadn’t shown any major signs of being overwhelmed with any of the activities or other people.  Things couldn’t have gone better!  On leaving the school Jack wanted to know if he could go back again the next day, so we also took that as a really good sign!

The next official transition day is in a week’s time, so we will be keeping up our preparation - but so far all is looking well for another good day to come.

Elissa.

We’re packing up and heading off for a night away!

The warm weather has hit, and Steve has to spend today and tomorrow away for work, so the kids and I are going with him to spend some time in the sunshine and by the pool!

(Right now, I’m really wondering if it’s worth the effort of packing!!!… but it will be lovely to be out of the house and spending some fun time with the family.)

Elissa.

Today I feel so very honoured and privileged to receive the Wonder Woman award that has been bestowed upon me by Childlife.

Childlife herself is the epitome of the award - tackling life’s incredible challenges with all the energy and enthusiasm she can muster, and still managing to smile at the end of the day!  Take a visit to her blog, In The Life Of A Child - her stories are delightfully humourous, yet the messages she shares are truly heartfelt and inspirational.

Thanks Childlife - I am truly touched.

xx

I would also like to bestow the honour on fellow bloggers; Casdok (although she has already received this award I think she deserves a double shot of it), Joy and Marla.  All of these women face huge challenges in life, but take it all in their stride and carry on regardless - they are ‘Wonder Women’.

xx

We had our first meeting today with our local organisation that facilitates respite care for families in our area.  Even though Jack was given his official diagnosis quite a few months ago now, it has taken us some time to work our way through the list of ‘to do’s’ in relation to contacting and organising different organisations and specialists who are able to provide us with support for his autism.

The meeting went really well, and hopefully it won’t be too long before we have a carer who is able to provide us with some one on one much needed support.  The organisation has some great programs that we will be able to ease Jack into slowly, starting with a couple of hours a week spent out of the house with his carer.

It will be good to have the couple of hours break, having some time with Anna, and it will be great for Jack to have some time away from us with someone who is fresh and full of energy.  Hopefully the short time apart will leave us all feeling rejuvenated and ready to go again.

It will also be great just to have some moral and emotional support.  For the past few years we have had a Pre-School Field Officer who has been a wonderful support for us (working closely with our whole family), but with Jack starting school next year, she will have to close his file in the next few months - so we are happy knowing that there will be someone to take her place.

I received another flyer for an Autism / Asperger’s Syndrome Workshop, this time with Sue Larkey (an Autism Spectrum Specialist).  She runs workshops for teachers, families, service providers and therapists, and her next workshop is in a couple of weeks.

The school where Jack is enrolled next year has recommended her workshops, and told us that she is well worth going to see and hear.  So I am about to register and hopefully take Jack’s current Kindergarten teacher with me (she is really keen to go as well - she has been a wonderful support to us throughout the year, and I think the year with Jack has really opened her eyes to ‘the life of a child with autism’).

Sometimes I wonder if I cause myself information overload, but I really enjoy attending workshops and information sessions on Autism.  I tend to think that there is always more to learn about Autism Spectrum Disorders, and even if I only take away one thing from each session (or if it is simply a refresher of what I already know), then it is worthwhile.  And of course there is also the benefit of hearing about other people’s experiences - there is so much to learn from these as well.

So stay tuned to hear all about it  - I’m really looking forward to it!

Elissa

Thought for the day:

Never doubt that a small group of concerned citizens can change the world.  Indeed, it is the only thing that ever has.

Margaret Mead

And from us:

Believe in your children, the impact on the world will be enormous.

Elissa & Steve