The Outcome.

(Chapter 13)…

For the first time in a long I am stumped and motionless…

I have been running on some form of adrenalin for so long, always at the ready to solve the latest in the long line of repeated issues and problems, and when I thought I had a chance of seeing a “light at the end of the tunnel” perspective it all came crashing down and crushed everything we had worked so hard to achieve over the past 10+ years

To be honest I’m amazed that we have actually made it to this point still intact.

Losing the Fighting Spirit.

(chapter12)…

This new-year is the start of A.J.’s 5th grade school year, heading towards the final chapter of primary school life, with two years to go, I felt it important to consider the path into his secondary education.

At the start of A.J.’s educational journey I chose the school specifically for personal and security factors and I definitely choose to stay where we are to gain those needs educationally.

This decision was strengthened due to the high school A.J. will be attending.

Although I now understand this decision put us in the difficult situation of being unable to access the total support services for his needs; I felt the smaller, more personal school environment, would benefit him, believing all schools should have systems in place to cater for the needs of children with Autism Spectrum Disorder or any special needs. 

the High's and Low's.

(chapter 11)…

School holiday time has arrived yet again; facing the prospect of what type of things we could do? I would love so much to plan a great get-away for A.J. and us, although unfortunately the reality is that it’s not possible. So we are hopefully going to arrange a few day outings to break the monotony!

Poppy has planned to set up the new trampoline that we have purchase with the hopes of helping with over-stimulation issues. This was suggested by his O.T.

Planning out each day and working to keep A.J.’s rigid routine in place, as the ‘relaxed state’ he so easily settles into can become a struggle to keep school routine mode.

Connecting Education and Autism.

(chapter 10)…

We cover many experiences in the unchartered pathway that connects education with Autism, as this is where most of the issues arise.

It can be difficult for any child, ready or not, to gain a totally stress-free transition when entering the door to Education, confronting the unknown entity of school life.

After having ushered my own 3 children through the life-path journey of their school experiences, I never once sat down and really looked at the big picture. The fact that as a parent, being solely responsible for raising our children in the secure, nurturing, safe, loving, environment of our home for a total of 5 years we then push them straight out the door into the arms of complete STRANGERS. People that we will take for granted to be of high morale, tender caring, protective giving, that can be trusted to take over the role of educator and so much more to our most precious of possessions, for the next 13 plus years!

Knowing that these people have dedicated a lot to achieve the gift of becoming a teacher and educator, we therefore subconsciously are comfortable with the fact that our children’s journey will go from beginning to end quite smoothly with no issues, worries or concerns.

Reality Sinks In.

Looking back over the past few weeks alone,

(chapter 9)…

All I see is a blur, a haze of existence, floating from one issue to the next, feeling in a way like I’m living a form of ‘Ground Hog’s Day’!

Another Dr’s appointment; I feel like I’m drowning in all this medical intervention!

There always seems to be another situation to deal with, another option to trial, and another assessment to encounter; is all this really going to make a difference, will it really assist A.J. anyway?

It really amazes me how I consistently attend all these appointments, assessment meetings, etc, only to be asked the same repetitive questions, then I again tell them the same repetitive answers, only adding the latest information to the latest issues.

Then at the end feeling as though I have given them all this information and received nothing in return; and this actually costs ‘Me’ money!!!!!

A Normal Family.

As I open our life to tell the story, you’re welcome to come inside;

Just step on in, take a look around, we don’t have anything to hide!

                                                 

Really; I’d love the distraction!

(chapter 8)...

We are very friendly, so don’t be afraid; I’ll make you a cuppa, and we’ll relax for a chat, although don’t expect the ‘royal treatment’; what you see is what you get.

Our house is clean, the dishes are done; mostly the washing is too, the beds may not be tucked in all of the time, but the floors are clear of grime!

I always say there’s a difference between ‘being dirty’ and ‘being messy’ and here we have clutter, lots of it! Sometimes there may be a bit of mess with the continuing long list of unfinished craft projects and my market items ready to sell piled up in boxes, and crates set up as I need them to be while working on yet another new idea.

This is ‘my’ distraction and time-out.

The sign on the fridge will say it all: 

“I’m too busy to be organised”

The Unexpected

The reality is...
(chapter 7)... 
Having to face a life existing of paediatricians appointments, child physiologist assessments, medical reviews, occupational therapies, and other repetitive testings, it would at times become very draining for all of us.

I can totally understand how A.J. would prefer to retreat into ‘his world’!

Sometimes I wish I had an escape myself!   

Unfortunately this was never going to happen.

A new day, new set of priorities, new targets to achieve; and so it goes on!

As most days the priority was School, the target being a settled, progressive day with the focus on achieving a high rate of finished work!

Calm, settled, no triggers, with focus on his routine; anything can distract or upset this tightly scheduled process. A whisper in the wrong direction can squeal through his silence and deafen him, disturbing the balance needed and then he starts pacing around the class room.

This, becoming the self-soothing process needed to settle him back into the harmony required to have him get through the day.

Being able to express his feelings and emotions is very difficult for A.J. knowing the exact word or phrase to express the true meaning of what he wants to say.

Unknowingly he can be constantly misinterpreted by others.

Additional Traits.

Knowing how to cope
(chapter 6)...
with the list of additional traits our little one’s acquire can be very daunting; when one-by-one another symptom seems to appear; with A.J.’s it started with delayed social ability, this is becoming more and more noticeable as A.J. gets older when compared to his peers.

Another ongoing concerning issue is sleeplessness; this constantly worries me, especially when A.J. has no concept to the benefits and importance of sleep.
Subconsciously, to our little man, this is just something that wastes good quality hours that could be better used by playing his Sony, DS, or computer games; or maybe watching his favourite Movie, repeatedly, over and over and over again.
Even something simple like doing the most perfectly unique ‘Grand Summersault’ from the end of his bed!
Although he will try so hard to settle in bed, we notice he can become over-stimulated by anything he’s  involved in or focusing on, then he cannot physically wind down naturally.

The Learning Curve.

So!! Where do we go from here………?

(chapter 5)…

All children are born as a blessing and a gift!

With nurturing, guidance, and encouragement they can grow to find their place in the world.

They are given a choice to learn and develop individual traits

That assists them to gain employment or choose a life path that gives them gratification.

A child on the Autism Spectrum should be allowed this choice also.

Recognition and assistance is needed for all these precious children.

It is not that they cannot do most things;

It’s that they need the assistance and guidance to get there in a different way.

The next step!

I continue writing our true life story with the complexity and simplicity of each single act that is taken within, day by day; as it is lived and interpreted.

Having this chance to tell it, our own way, with the expectations, emotions, frustrations, disappointments, realisations, and understanding into what an Autism diagnosis means to our family, while being able to pass the knowledge and understanding on to others, hopefully helping them to understand and know they’re not alone.

                                   

The misconception others have regarding what Autism is!

Believing it to be a very bland outlook; as a non-verbal, non-responsive, being in a somewhat catatonic state, living life each day not as we know it, just barely existing.

This is so un-true.

A Closer Insight.

(chapter 4)…

Explaining our little man’s thought process is best described as a ‘literal thinker’,

There is no ‘shades of grey’ just black and white, and a simple conversation can become so complex, with the over-analysing of every comment stated to him.

I go through a process, every time remembering to stop and think about how I say things, being 
direct and precise, using the exact words and phrases to be understood.

Using phrases such as - ‘jump over there’ will mean to actually jump, not that he needs to ‘move away’.

Stop,   Listen,   Think,   Do.

These four words have become so important to gain calm and progress while focusing on Consistency, Routine, and Repetition.

Please don’t let this entire process take away from the person!!

Preparing for a new year.

(chapter 3)…

Having dealt with so much uncertainty so far, we were sideswiped again when A.J. was suddenly faced with a series of personal issues, the first being the interfering, confrontational attitude and statements from his mother, while he was still having minimal access with her she constantly undermined all the progress we were making, this time she had stated to him - “I am going to take you far, far away and never coming back and you’ll never see anyone again, just me!”
We immediately arranged for changes with access to assure A.J. had nothing to worry about although the effects were already immerging.
When starting the new school year, taking the big step into grade 3, his first primary year, he faced the concept of Bullying for the first time.