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.

Being sceptical due to all this, not wanting to drop my guard and miss another ‘issue’. Being misled by well-meaning teachers with their “I know what is best for him” attitude, without any understanding or concept of what they had stepped into, only to run-for-the-hills at the first sign of “melt-down mode”, calling me to pick up the pieces.

As I’m left with a rage beyond belief to what we have endured, I wonder how we will gain the strength to take the next step forward and gather the requirements to move to the new phase of A.J.’s educational journey.

Faced with the aftermath, without understanding why,  A.J. wants to fit in ‘somewhere’, at the same time knowing he’s ‘not wanted’, he now wants the rest of this year gone, repeatedly expressing his frustration through his form of verbal anger; while I calmly try to help him understand, I too struggle knowing I cannot comprehend what had occurred.

Now the preparations begin to take A.J. to the only school remaining.

I have no idea of what we will be stepping into.

It’s not that I ‘didn’t’ want this option; it was that I truly and honestly felt the other option of a smaller school environment would have been the better preference.

With only one school term left, I hope upon hope, that we can access this other school with enough time to gain the specific assistance, resources, and funding required to give A.J. the additional support he will definitely need in this new and extensive school environment.

As the weeks go by I slowly gain a clear understanding to the resources that are and should have been available to A.J. all this time. The new school has so quickly arranged personal appointments to view the school and set up requirements, arranging ‘meet and greet’ days, ‘one-on-one transition’ days, separate orientation days, everything required. They had even arranged a few one hour visits to their chess club where A.J. met some students and played chess, something he has enjoyed for many years.

In the final weeks A.J. was invited back for extended visits to join some lesson time and meet other children and his new teachers.

The outlook finally seems clearer; we are definitely ending this year on a true high note.

Many people have questioned why I portray the negative side when posting some comments relating to our Autism journey……..

My response - I am a realist; I state the actual things that happen at any given time, unfortunately a lot is involved around the educational aspect where a high percentage of time and issues occur.

I will not sugar coat anything or highlight the “niceties” of life, when the reality of coping with this side of Autism is repeatedly facing negativity from others and then trying to deal with it in the best way possible.

Sometimes I‘d prefer to run to the hills and hide it out in a cave, letting the world pass us by, although that also is unproductive.

This is my vent area, a place where I let out the frustrations of a world ignorant to the true differences in our children.

When stating these issues I hope others may become aware, and change their view, or help to gain acceptance and understanding for our children and acknowledge this disability.

School preparations are under way, and while psyching myself up for this big step I can’t be blamed for being just a little bit worried and concerned to what may lay ahead.
Knowing that every year we face the changes that regularly occur with the start of a new school year, with different teachers, etc, and now this year we are also facing a new school (high school) with a totally different process, routine, and environment.
Each year as our little man becomes older we also notice how his differences are becoming more obvious, with his social expression, and the perception others have regarding his mannerisms, both being the most relevant areas of concern, as he tries to manoeuvre through the maze of public life.

Preparing for his new school, amazingly enough our first day began with A.J. waking before his alarm and literally ‘jumping’ out of bed requesting what his routine would be; as I settled him down saying he has a little more time, I go to get my first ‘cuppa’ of the day, A.J. was right behind me on my heels so I prepared his breakfast and we both sat down for a chat.

A.J. was nervous and excited, with his main worry being how will he start a ‘chat’, and how will he ‘greet’ people, then he asked me “what are some ways to make money”? -For what reason?

“Oh I just need a steady flow of cash!” …“And Nan why can’t I have coffee?”

-Because you’re too young!

Being his first day of high school, we prepared the day on a low-key level, settling his anxiety levels, to feel like ‘just another day’, no pressure, no expectations, no unexpected demands.

Meeting his support teacher and aide, he questioned what would happen; we explained he didn’t need to worry as his support aide will be there to help. 

At home without getting much done, I waited anxiously to see how his day had gone, only to find him happy and relaxed enjoying every moment.

After only a few days the teacher arranged for A.J. to join a few of the main-stream classes in subjects they felt he would handle, with the only confusion he faced was all the doors and rooms, the aides assuring us they would take him to the different rooms and be there to settle and support him when he needed; although they were pleased with his progress and assured us he will settle in fine.

His response was….”Nan did you know they have “LOTS” of doors everywhere and you have to carry your bag ‘all’ day”

Arriving home he was tired although super-hypo, pacing around the kitchen while chatting and explaining the day’s experience.

By the end of the week he was so settled and happy with his routine, no stress or worries, and even at home he was calm and relaxed.

Normally if he had held it together while experiencing new and different things he would come home all strung up pacing and fidgety, agitated and everything would become unravelled, although there was none of that.

I still worry how he’ll cope if something does go wrong, a moment of emotion, overwhelming without control, how will those around him cope?

Being on edge waiting for ‘the call’, the school, saying ‘take him home’; I’m not used to people being there for him, knowing what to do, to help without saying “it’s all too much”.  

Seeing A.J. happy with the chance of a new start, it seems to have consumed him in positives; I now hope the bubble doesn’t burst.

“So today the wheels fell off the school bus………………….”

After a few short weeks of high-school life and to quote A.J. ……‘And there it is’………..

We faced a meltdown today, the first for the new school year.

Looking at the big picture, he was going really well, progressing and gaining so much in confidence all round, having moments of progress and big steps of achievements.

We knew he was becoming tired but that is expected and in hindsight I could almost feel we were heading for a ‘moment’, the pattern is always there, although the exact time-frame may be hard to determine, you just know!

It’s like watching someone falling but you just can’t reach them in time, and no matter how much you pre-warn them they cannot see the danger.    

Sensory Dysregulation has so much to do with the outbursts and so hard to determine, the warning signs, the melt-down, emotional outburst, the non-understanding.

Moments of progress followed by regression, simple things can seem like a major explosion, taking something as simple as losing a piece of paper, having someone say the wrong thing, losing focus and being distracted by something but nothing, being teased and taunted by others that see his differences, unable to express verbally how he feels, he may lash out with his ‘protection mechanism’ (verbal emotional gibberish expression).

The last few days A.J. has been involved in full-on schooling with additional subjects, moving from class to class, understanding what is happening, learning to accept help, knowing he has support, all this consuming him emotionally.

Noticing he was maintaining a self-soothing regime 

1/- pacing, round and round, to become calmer

2/-jumping on the trampoline, to help settle his nerve ends for sensory release, 

3/- talking, chattering, rambling over and over, to release and decipher the clutter of knowledge and additional input he had accumulated through the day.

I understand the struggles of a non-verbal child, knowing how hard it is to determine what they’re trying to relay; as I too for so long faced the concerns of how to communicate to a child with no voice, and then learning a verbal child with autism can struggle with verbal expression.                               

Being in a really bad “space” when A.J. came to us, thinking he may be deaf, we had no idea where to go, so while waiting for those all-important appointments to take place we spent hour-upon-hour reading to him; showing him flashcard pictures, letters, numbers, colours, shapes and more; teaching him physically how to act out social interactions.

Slowly we watched our 3 year old non-verbal become a reasonably fluent verbal school-aged student; becoming a child that loved to learn, he would absorb knowledge like a sponge, it was amazing to watch, he thrived on it.

With all this, A.J. still struggles to express himself in a manner others feel is acceptable and comparable to his peers, always struggling to fit in; although with all that he has endured over the 12 years of his life, he is still the sweet little innocent that looked into my eyes all those years ago when we took him home to begin this journey together.