Acceptance, Understanding and Expectations for our child.

A.J. finding the simplest of things to enjoy

Understanding the complexities of our special man can be one thing, coping with the differences at the 'time' of a meltdown or anxiety attack, and then the confusion that follow, is another.

We definitely do sympathise with our kiddies and totally get their mannerisms and behaviour, but that doesn't make us immune emotionally from the aftermath; and 'that' does NOT give anyone else the right to assume to understand, judging us or our child.

They are not living our lives 100% and therefore cannot determine from a single moment or an isolated situation in time how the full events of a single day/week/month can play out.

Understanding how the smallest of details and the littlest thing can upset the harmonious balance they so need and require internally and environmentally,

the results are always going to cause mayhem and upheaval. Although mostly there is no way they are able to fully control the effects, the best solution is time and patience, waiting for the calm to overtake their bodies and emotional being, assuring their personal safety is guarded, while preparing to assist their transition back to normality.

Why does this happen? No-one really knows the extent of WHY, and no-one can really 'fully' change the effects, so any expectations or demands to 'control' their behaviour is somewhat ludacrist when realising the full extent of their diagnosis/disability.

With many now being wary of the wording and usage of terminologies, from both sides of the fence, as I continually hear/see the requests to acknowledge person-first or diagnosis/label-first awareness; we still have to accept, understand and acknowledge their differences and how it will and does cause a struggle on a day-to-day basis when trying to function and attempt to manouver through the maze of what is called their 'LIFE'!

The older A.J. is getting the harder he struggles with certain aspects of life; while trying to help him understand certain concepts of teenage life and the changes that are occurring within himself, and how important the expectations of coping with those changes are, then include the pressure of additional demands from the school and other external sectors, the results can be confusing and confronting for many, we are also aware of how the differences and delays he is experiencing are becoming more evident to others.

With the start of a new school semester, A.J. is facing another set of changes that although we tried to prepare him for, the physical instigation has him overwhelmed and struggling, resulting in him taking a step back from the progress he was making and relying on the additional support again to help him through it.

The outcome of this confusion being a few emotional meltdown moments while trying to find ways to get into his new routine becoming more difficult than previously able to do.

Attempting different things may or may-not work and the realisation that time is still the best answer; even the event of having to rearrange his room, although ever so slightly, became an awkward scenario to be involved in.

Other changes have also occurred in the past few weeks and attending specialist appointments, being random monthly or bi-monthly can upset the day-to-day routine he relies on.

Taking the two hour trip into the city/big-smoke to attend an appointment at the dental clinic, we were informed by A.J. that he can't understand the waste of time having to endure the long car ride only to attend a dentist when we could have seen one at home, as we have so many there, so why would we be bothered.

Trying to explain the difference between a normal dentist, as is available at home, comparing the dental clinic where specially trained technicians attend to help with specialised procedures. This was all too complicated for A.J. and thus he stopped me half sentence to state that I “will” be assuring him we won't be attending another meeting/appointment or other, for a minimum of six plus months and only then with the approval of “his majesty”!

Ohh dear, that won't be happening any time soon, with continual appointments already booked out with different supports.

When the results came back from the dental technician showing his front top teeth and jaw-line 'are' out of alignment, being categorised under the extreme/severe level; and after having a discussion with the Orthodontist we were informed that A.J. will by-pass the 'review' listing stage and has been immediately placed onto the official “priority waiting list” as he more than meets the criteria for BRACES; although that being stated, it may still take up to 7 years before he gets a call-up.

Yes! You heard it right, or at least read it correctly.....................7 years!!!

Interesting! He could be 20 before he gets the help. Very worrying.

Back home and to the following day we have a child refusing to attend school as the previous day of travelling and changing routine had taken its toll resulting in a shut-down mode. Forcing the inevitable will not benefit anyone and so we allow him time to settle and spend the day starting on one of his assignments and any catch-up work needing attention.

I know, I can hear you all now going...... “send him to school”..... “stand firm and be strong”

although the reality is what it is, and we should pick our battles.

What are the real end results we're looking for?

Who are we really trying to please and why?

My answer to that is - my child - he is number 1 priority and his choice does matter, no matter how small, he should be allowed some say and recognition in the things that he's doing and becoming involved in.

Saying that, we do acknowledge that some things have to be addressed and in doing so showing A.J. that while he can have flexibility in some decisions, others have to be addressed no matter what. All part of the growing process.

When looking back to where we were 12 months ago, with A.J. regressing, due to the non-understanding or acceptance from a system that should have been there to support and encourage growth, and yet we were facing the reverse with A.J. placed under a cloud of confusion as the school couldn't or wouldn't accept or understand any part of his disability.

Refusing to acknowledge the continual flow of official documentation forwarded from all areas of medical and professional support systems outside their education system.

Refusing also to realise his need for repetition, regularity, and routine, or any understanding of the effects he has within the environment through sensory imbalances.

The results from continual changes after his regular teacher, on long service leave, had him face a flow of different relief teachers with alternate teaching skills and formats changing daily or weekly, then when he became emotional due to the confusion they refused to allow him down-time to self-regulate resulting in an emotional meltdown, and exclusion from the classroom, followed by a call for me to collect him.

By the time I arrived, having had the down-time they initially refused, he was ready to return to the classroom, although at this point the school refused to accept his external calmness and demanded he “still go home”.

All this from an 'emotional imbalance', with the outcome being days or weeks of forced non-school attendance as they were unable or unwilling to arrange support for him.

Seeing the difference now, after receiving acceptance and the correct support from an understanding school system, providing additional needs within the school when required, having acceptance of his external supports, we can finally see the progress we've all made and understanding of the big picture, with positive results.

The role that all these areas play is so important, it cannot be left to the parent alone to 'control', all areas playing a part in our children's life have to be pro-active in the involvement and responsibility of his progress within their sector.

Discussing and explaining the different scenarios we have experienced with A.J. over the years, is to help others understand the complexity and simplicity of situations, and better comprehend what can happen, while determining what should or shouldn't occur.

These stories can also show others, although our learning experiences were gained later-on, we all have the right to determine what we expect for our child, knowing if those expectations are not being met, we have the right to step in and advocate for the rights of our child.