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!!!!!

So the latest appointment with the Paediatrician entailed a discussion in-

“A.J. needs to gain weight”;

“A.J. needs to be assisted to sleep ‘every’ night”;

“A.J. needs to continue with his Psychologist”;

“A.J. needs to try to live in the real world”;

“A.J. needs to limit his Sony games-they seem to be controlling too much of his time”!

And so it goes on……

Ummm….. Arrr!!!  What???  Grrr!!!

I do not believe I just heard all that; what is that Dr Thinking? Do they think I don’t know that?

Do they think I’m stupid?  Now! Explain!!! I thought they were the ones that diagnosed A.J.?

I thought they knew what Autism meant? So how is it that I was just spoken to like that?

I’ll just press a button on his neck that switches him to Normal will I??? 

Yeah right if only it was that easy!!!!!

Again analysing where we have come so far -while looking at what was stated to me-

I must find out how to deal with an issue that no-one else can deal with……

I must solve a situation that has no solution……

Sometimes I wonder how we cope with the effects from issues that A.J. has personally had to deal with, and then adding his involvement of trialling all these interventions and treatments, while wanting to give him the privilege of having the chance to live a somewhat normal life, (as many others with a loved one faced with Autism would understand and desire).

Now facing the latest issue of weight-loss, the effects from his medications, wondering how he may regain his appetite, something that has always been a concerning issue for him.

Also finding a way of describing to others the diagnosis A.J. has been given. There must be a way of explaining this easier, using a more simple description, a form of ‘layman’s terminology’ that can translate easier to his teachers and others that need to understand his world.

Who do I turn to; where do I go? The doctors say to ask his psychologist, they in turn ask to speak directly to the school!

When would that happen???? I’m still waiting for my meeting!!!

All I need is a print-out with the medical terminology; giving the actual symptom descriptions for each of his diagnosed disabilities. Being able to give an explanation, an understanding of what is happening to him personally and ‘why’ it actually occurs; a statement saying that the life he is living is an actual real disability and not just an excuse for his behaviour and lifestyle.

How can it be so hard to gain this information?

Was there never a demand for such a pamphlet, booklet or medical review?  

Yes we have received a review from the Doctor but only stating the diagnosis, not an in-depth explanation to what that diagnosis actually means. Something to give the parent, teacher or any important person that is involved in these children’s lives to better understand what they are dealing with?  

Reminding me how as I personally encountered A.J.’s diagnosis I was never given any form of written medical knowledge or information, upfront, about his disability, other than what I have looked for, researched, or found by myself!!!!!!

Realising, had we been given that back at the first initial assessment we would have gained much needed Early Intervention that may have been so beneficial to all involved.

Now I go back to dealing with the same old, ongoing issue…… Ohh yes! ………School………

A.J. has been for a long time now, comfortable in his world, the world ‘he’ has created, the world that protects him from the unknown.

This is the world that exists inside his bedroom, the world that he calls:-“…the Realm of Fantasy”!

Here A.J. has the power to imagine that even the worst possible scenario can be eliminated by his special world! So carefully protected from the outside world the ‘cursed world of Reality’ he can remain calm, settled, and totally in control of his every movement.

Unfortunately, at school this Realm doesn’t exist and therefore A.J. has no protection against any targets, attacks, or harassing elements that he may encounter throughout the day!

With assistance from his anxiety medication, as well as calm, soothing, gentle tones, he may find it possible to flow through the day without any incident occurring.

Although as the slightest distraction may be the reason for a total breakdown in the barrier that he needs to hold back the un-natural forces sent to curse him, he may easily find himself reeling into the abyss that harms him from something as simple as a glare by a student innocently walking past his protective pathway.

Unfortunately there really is no way to determine what may instigate these feelings and emotions.

Although given the knowledge to understand, there are signs that can be noticed and actions that can be taken to help stop the triggers and therefore any incidents from occurring.

A.J. would be assured he can be kept in a somewhat serene environment.

Simple calming tones, occasional breaks from the environment, even if a trigger has already set off an emotion, when given the key knowledge to assisting with these actions, they will still be able to assist in settling him back down before he escalates further.

Raising the question again…………..

……………….why is it that this information is not readily available? To anyone!

Then the next question,

Why aren't all schools more trained to be Autism Aware!!