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. 

While dealing with A.J.’s ‘so-called’ ongoing concerns, the school gained assistance from outside personnel in the direction of CEO personnel and a trained Autism services provider; with what I thought was to hopefully help ‘them’ gain an understanding into Autism behaviours.

Acknowledging any assistance the school gave us and without trying to lay blame or point fingers I tried to express my view to the issue of too many outside influences with different agendas, requesting different directions has caused continual confusion and disorientation to everyone involved.

When addressing A.J.’s emotional and social expression, due to his disability, he can at times struggle with the correct emotional response, especially when confronted with a personal attack from other children.

Always willing to work to assist with the smooth transition within the school environment, I also believed when an “incident” occurred, the school should have investigated from start to finish, regarding how/who had instigated or been involved, without reacting immediately towards A.J.’s ‘outburst’ (melt-down).

Organising his psychologist and paediatrician to help out, they came to realise the issues had been ‘over-played’ by school personnel, and with the involvement of external parties seeking different outcomes, the result was confusion for the school and A.J.

These ongoing issues repeatedly proved how the school had no understanding of the specific requirements needed and were unable to cope. Without catering for or being equipped to assist this level of Autism, A.J. has not receiving the best educational assistance that he personally requires, is entitled to and deserves.

With all documentation given to the school from all the medical areas A.J. has attended I was confused to be confronted by these external CEO’s and other parties requesting I re-gain all the assessments regarding his disability, and more. I understand the ‘duty of care’ requirement, although with everything I have accessed already in the belief it met all the guidelines, I don’t fully understand exactly ‘what’ they are now requesting and what they intend using it for.

All this from a verbal outburst (a protection mechanism)……I cannot understand it.

There are so many other children at this school that would fit the criteria of “uncontrollable” more-so than A.J.

Why is it that just because a child looks at or reacts to things in a different way than everyone else, it means that there has to be a problem??

Why would they immediately believe that they are a danger to themselves or ‘maybe’ to others, with only verbal outbursts being an issue?

How do they justify this when there has never been any evidence to show it?

Why do they have to over-analyse, assess and justify every comment, action or situation?

Even with all that, it somehow doesn’t stop the so called ‘well-meaning know-it-all do-gooders’ from butting in and interfering to justify their existence without a mere thought to the feelings of the family that are left in the wake of their destructive actions.

Why is it that no-one can understand that Autism simply means DIFFERENT!!!!!!

Gaining more assistance, I was informed the documents already received clearly outline his disability and sufficiently explain his needs.

Suddenly we were confronted by a ‘trained Autism services provider’ who should assist the school with any requirements to help with A.J.’s disability, instead they chose to force A.J. under the ‘Public Mental Health Act’ to attend two separate hospitals to gain a full ‘psych assessment’. After being shuffled through two separate hospitals and taking up a whole day, A.J. was discharged with - “No Action Taken” due to Autism!!

The personal response from the Dr. at the psych ward was an extremely embarrassed apology, explaining that A.J. should never had been sent to him or put through the ordeal unnecessarily, stating he had tried to stop the process without success before we left the first hospital.

When I tried to explain to the school CEO’s that no other reports were needed, only those already supplied, their response was - “as we haven’t received any official report stating that, we can only assume you are not taking us seriously”.

‘Seriously’……are they joking….do they not know or care about the process we have already gone through just to get to this point? Do they even understand what Autism really is?

However hard it seems; how can they, or anyone, justify the anguish that has been caused unnecessarily. To anyone let-alone a defenceless and insecure child.

With sensory issues causing a ‘holt’ to A.J.’s focus and concentration, this is all it took!!

A simple action of emotional expression and upset, has been used to force us to home-school our little man, again……and for what???

How can it be that the simplest of ‘differences’ in one single child can come to this?? 

After being in ‘exile’ for almost two terms, A.J.’s psychologist helped him return to minimal school attendance, with restrictions of course, expecting I will provide the proof he’s capable of being at school. That he’s ‘normal’….. But he’s different, unique, special, what is normal anyway?

How do I find something that doesn’t even exist???

Without a thought to how A.J. is falling behind academically, knowing he is capable of doing the work if given the correct consideration, environment, understanding and direction, I then receive his report card, [a report that should never have been graded due to not attending class]

I realised his diagnosed disability had never been acknowledged, instead being ‘labelled’ purely as a “disobedient child that needs to ‘correct’ his behaviour”. 

The emotional stress put on our whole family, due directly to this situation is inexplicable.

A.J. has become upset and distraught, not understanding why he is unable to attend school.

                                                         

Attending school in the remedial room, he is settled and doing all work required; in his classroom he is disoriented by the sounds and distractions, unable to concentrate due to his sensory sensitivity issues. I was then informed that due to A.J. not doing enough of his work in class, although he’s not disruptive, they are unsure if he should be disciplined for ‘non-compliance’.

I couldn’t believe my ears, was I hearing that right? Disciplined for not doing anything wrong?

I have repeatedly tried to explain to all involved how A.J. becomes stressed, and I now know definitely that they have never acknowledged the actual cause.

This is not a ‘Behavioural’ issue and cannot be ‘disciplined’ out of him.

This is where the situation reaches a stalemate as to the direction to take and where I now feel something needs to be done before more damage has been caused regarding his academic level.

With still no clearance given to full time school/class inclusion, feeling hurt and offended to where this issue has come to, realising this has now come to a level of discrimination.

Where do I go? Who do I talk to? How can I gain understanding for him now?? It is so wrong!!

If A.J. had crippled legs, no vision or voice, something showing visually/physically his disability we would not be in this situation and that is so upsetting and stressing to this unnecessary situation.

Having to explain to an innocent child why written reports and documentation proving his disability, isn’t enough to get him back to school.

I’m disgusted to think the school still seems to take the ‘ignore it and it’ll go away’ attitude.

Simple things like, A.J.’s “non-understanding instructions”, is taken as “a refusal to accept the instruction is directed at him”, when in true fact he misunderstood the wording of the request. 

Why is it we repeatedly have to justify our children’s reactions to situations?

Why can’t the issues be understood in the manner that it is?

These children ARE capable if instructed clearly, simply, directly.

It doesn’t hurt to repeat an instruction in different wording to clarify the request.

Constantly trying to do what any person would/should do, by researching, I found the information to help the school understand things more clearly; unfortunately they don’t seem to want my help, leaving me feeling belittled, treated as ‘we’ are the ones that don’t understand our own child -----so hurtful and so disrespectful!!!

It seems that the older our children become the more noticeable their social disabilities and delays become, showing how others are becoming less understanding, compassionate and accommodating to the differences they are dealing with.

One single person can break down months and years of hard work, therapy and progress, all due to their ignorant disbelief that no child should need any more assistance or understanding than any other.

Yet sometimes in the midst of all this mayhem we can surprisingly come in connection with the most beautiful of souls that may lift our child out of the fog and into the light…..we all wish and pray for that special presence to appear.

After all this mayhem, I realise another year has passed by, I wonder have I done enough, and what path do we now take? What journey do we enter into??

Just when we felt we were stepping in a forward direction do we stop so-as not to be disappointed again. This roller-coaster ride is starting to become too rocky, too unstable, the fear of rejection and lack of understanding from others have finally taken its toll and now we are disheartened and have lost faith in the possibility of gaining any assistance. 

For the first time I was the one with the fear of the unknown.

For the first time I was the one unsure where to venture to gain harmony for my child, to gain direction and learning, all the things expected for any child, automatically without requesting it. How can I help A.J. if I have lost the spirit within myself?

Preparing for A.J.’s last year of primary school, the reality of all this is so surreal, I cannot believe we have come this far already.

Being such a crucial period, I am hoping the process will transform past wrongs, while maintaining stability and some understanding from the school for a chance to end this school era on a good note.

When we meet his teacher I was relieved to see we would gain success in the area of understanding and start on a good note. Going straight back to 5 days a week attendance with the option of time-out days if over-sensitivity issues arise that may be best avoided.

Why is it so hard and so difficult to gain the understanding to how children with Autism need and thrive on regularity, familiarity, and so on……………

I’m sure ‘you’ get the picture, I know it took me very ‘little’ time to figure it out, so why then after being at the same school for 8 years do they not get it.

Every year they have placed A.J. in classes with issues by teachers that have multiple duties leaving the class consistently, having different relief teachers, teachers going on long service, two teacher assist classes with differing teaching methods, and the list of struggling issues continued.

Again this year his teacher went on long service, just as he was comfortably fitting into her routine and becoming confident to trust her teaching method and process.

The relief teachers haven’t continued with the same format, setting out their own plan of attack, and then wondering why A.J. wasn’t coping.

Now we have a struggle to start A.J. on the extended transition program for high school.

Although stating they would instigate the transition mid-term one, by the start of term two we haven’t been contacted for the formal meet and greet, with his current school waiting for the other school to set things up. 

All of a sudden another term has past and still no progress so I attempt contact with the response being –“I’m sorry the CEO has advised us that they will be assisting with his transition”.

OMG, what is going on…………….

When I ask why the run around, the teachers finally apologised, stating it had been taken out of their hands; two meetings were arranged, one with A.J.’s current principal and CEO member, and then another with the same CEO and head support teacher at the new school to inform me of the process.

At the first meeting I was bombarded with concerns for A.J.’s transition, -“this school may not be an appropriate fit for A.J.”; and “maybe you should source a more appropriate smaller school environment, one better suited for catering to his needs”.

Umm, what? What smaller school? What is going on?

My response was- “if this is the case, where is this ‘smaller’ school and how do I access it”.

Their reply- “I’m not sure, ‘you’ will have to find that. Oh but we will help in any way we can”.

Huhh……? Right!!

I then asked- “As your school is the ‘smallest school’ in our area, why can’t he attend as my school choice, and how is this showing ‘you helping’.”

Their reply- “A.J. has a lot of special needs and I think if you are to continue on the path of transitioning here then we need a full psych assessment for him”.

OMG…..he’s not crazy, he’s Autistic!!

Attending the second meeting, believing to be a meet+greet, and view the school showing what they had to offer. Every question I asked the support teacher was cut off by the CEO before she could answer, there was no walk around the school, no discussions regarding what they had available to offer A.J. directly.

Their direct comments went straight to- “We don’t have the provisions to properly assist A.J.”, “we can’t guarantee he will cope”, “he will become confused with different subjects in different classes with different teachers”, and “you really need to think if this is the best fit for A.J.”

Realising I was getting nowhere fast I decided to discuss their psych assessment request.

With my question being, “if I need to have a psych assessment, something you are requesting as priority criteria for school inclusion, could you answer these questions for me?”

1/what are the issues that the school are concerned about that warrant the request for a psych assessment?

2/ can you supply a list of questions that the school want answered, during the assessment process?

3/ how, will this assessment benefit A.J.’s academic involvement

4/ what extra assistance and resources will A.J. directly gain and benefit from with the addition of this assessment 

 ---Four simple questions---Questions that should have been covered and have ready before they confronted me with the demands of a psych assessment

Yet these simple questions were too hard for the ‘hierarchy’ to answer.

On attending a meeting with A.J.’s Learning Support coordinator at his current school, she informed me of an email she received from the CEO requesting that she and I get together and brainstorm ideas to suggest some questions and direction needed for A.J. to have added to the listing, required to sign off on his educational progress.

Again the words ‘OMG’ are all I could think of……

Do they think I am stupid too…?

Changing the wording to seem like they’re asking a different set of questions, I told the coordinator to notify the CEO that he will answering my questions and not put this back onto me.

Where do I go from here? This question seems to repeatedly raise its head…….

It’s quite simple they do not want A.J., and for what reason.

He’s never been difficult to the point of harm or uncontrollable danger, he gets disoriented, upset, and confused, and the reason is more to do with their ignorance and neglect.

With this whole year now being a total write-off, every time I try to clarify it in my mind I become so emotional I freeze, words really cannot express how I feel and my disgust of everything that has occurred.

Even now I have a block as to what words I can use to truly describe my feelings and I pause hoping the words will come…………..although I am still blank…………………..