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.

Although sometimes we may have to endure many different issues that can be experienced, such as being confronted by a teacher/child personality clash, or, with children on the spectrum, being placed with a teacher that quite innocently has no Autism knowledge or experience and therefore no understanding of where to even start or how to react to the day-to-day situations that occur with these children!

So unknown and extreme their symptoms, so limited the access to information, it is very easy to fall in the rut of unknown, unable to find the path of knowledge and falling short of giving the one thing they may need to sustain their so tender lifestyle. We still hope that the limited knowledge and the addition of ‘patience and consideration’ will guide them through this journey!! 

As another week comes to an end, transforming a normal day into a culmination of extreme emotions! A.J. has endured the most confusing of circumstances, when yet again his literal thinking and straight forward expression has given someone the impression that he is being - ‘rude, aggressive, inappropriate’

This, due to being left to play on the computer ‘unattended’ for who knows how long and then when ‘frustrated’ by the non-productive process with the computer programming, he became upset and anxious; yes he knew the computer had frozen; yes he pushed the mouse across the desk ‘aggressively’; yes he knew he did the wrong thing!

Although on the other hand; where was the supervision?

Where was the assistance when he needed it?

Why was that not taken into consideration???

Accepting responsibility for his action is one thing; yet the teacher accepting responsibility for technically being in the wrong also, is another issue. Why is it so hard to see and accept the FULL picture before wanting to easily just push him aside into the ‘too-hard-basket’!!!!!!  

With more medical concerns to be addressed its days like today that frustrates me the most, as I literally have no idea where to start or how to really help. Over the past few months A.J.’s emotions and sensitivity has reached another level with the action of rubbing his face with his clothing and reaching the point where actual ‘friction burns’ have occurred.

We have repeatedly attended Drs and chemists for assistance only to have them aide with settling it down, and then have it flare up again. The treatments are definitely working although unfortunately his repetitive actions are causing the constant re-occurrence. This action of rubbing is done in a subconscious manner, without understanding the long term damaging effect.

Even with all this medical mayhem we are actually off to a great start for the week, both days settled and productive at school. Regardless of the issue with his face he is still calm and relaxed!

He was actually whistling to himself today when I collected him from school, I think it may be his newest ‘calming tool’.

Another new tool A.J. has taken on is requesting a long relaxing bath, it seems to settle him for the remainder of the evening, possibly assisting the medication to help him sleep.

Appointments-interviews-intervention! After going from not being able to gain an interview at school, to now having an abundance of appointment dates thrust upon me!

Parent/Teacher interview; - with both class teachers and his support teacher! This involved discussing his progress with options for settled lessons and integration suggestions for class participation. With new programs being set up to help A.J.’s school routine by incorporating a target goal - reward system; with the use of this roster system they hope he will achieve a level of positive goals each day directed toward his weaknesses, targeting- Focus, Self-Control, Patience, Behaviour, Task Achievement.

Systematically setting out a program that assists A.J. with his behaviour, based on self-control, and worked around a calm, settled environment. With the inclusion of Social Stories; Now/Then charts; Visual programs; all these established and introduced to assist with  future school progress, and designed around a major part of A.J.’s education plan.

Although I was ‘cut off’ as to running out of time I felt that it was a ‘start’ to the forward progress and communicating on the ‘same page’ with many items; ended with a somewhat positive feeling on my behalf!

Now the next meeting……………extended School Intervention!

Being somewhat confused as to the actual reason this next meeting is taking place, especially after having such a positive meeting take place; then being told that there will be additional external members attending, I began to worry to what extent this meeting entailed?

For the first time I was truly concerned, fearful to what this would mean for A.J.

On the list of topics for discussion were:-

            -participation in school life

            -access to mainstream curriculum

            -improve in-class participation

            -cater for ASD needs.

Reading this list in itself may seem positive and directional, although after having the meeting only a week ago I am totally confused, are they wiping the board clean of all discussions and suggestions we covered.

Attending the meeting I was confronted with a group of people including: -

Disability CEO and schools CEO (both behavioural management teams); A.J.’s teachers; remedial support teacher; principal; A.J.’s Psychologist; and myself….

All discussing the options for A.J.’s learning needs.

I was overwhelmed, unable to comprehend what was about to happen.

By the end of the meeting I felt targeted and confused, unsure exactly what was expected!

Noticing that each person had a separate agenda with both CEO’s seeming to be blinkered to the requests and needs suggested by all the others including myself, feeling they couldn’t or wouldn’t view A.J. as being an individual; only a statistic.

I was personally being cut off with my input and dismissed to my knowledge, understanding and suggestions.

How can that be when I myself have personally experienced the ups and downs with A.J. for the past 9 years; the school on a whole have experience for the past 6 years (including 2 Kinder years and then grades 1 to 4); yet these two CEO’s –one having a 1 hour interaction (without my knowledge or permission) and the other having zero interaction with A.J.

How is it, they believe to have more knowledge and understanding with what is ‘Best’ for him?

Since when is taking an A.S.D. child totally out of his comfort zone, without any warning or gradual introduction, being in his best interest?

Presenting him with a program that was designed to be gradually introduced, that will now be forced in a ‘crash bang, here it is, deal with it scenario’; how is this actually a benefit to him?

Then when I asked, why can’t we develop the program as it was meant to be with the involvement of everyone participating in it, allowing an introduction period, in a calm, stable environment?

To be given the response of a direct firm negative “No”; without even asking me why I requested this process, or explaining to us their reasoning for the response!

How do they think this would make me feel?

If this is the response a parent is given, then how do they respond with our children?

If A.J. had been spoken to in the same ‘tone of voice’ and ‘cut off’ attitude; his reaction would be in a manner that they are trying to remove from his behaviour!

More-so if he had responded to them in that manner they would not have appreciated the blunt statement and it would have been dealt with accordingly. The main concerning issue we have with A.J. is his non understanding of verbal expression and they still don’t get it!

How is it that we do all the work and some ‘official’ in their preppy little suits sitting in there glass offices can walk in and stand over us demanding all our hard work and effort be insignificant and then change it without any thought or consideration to the big picture?

These so called people that state they are qualified to be in a behavioural management team, with knowledge of Autism and how it works, and yet they have the audacity to tell me

“This seems more like a behavioural issue not an Autism issue”

…………..”Since when did you get given a medical degree?????”

Thank you for belittling all the hard work and effort I have put into A.J. for the past 9 years; obviously to you it was insignificant and obsolete.

The fact that at 3 years old I taught him to speak for the very first time then began to include visual recognition, working so hard to gain progress in all the other areas.

Without having any understanding to his history in regards to why he is with me in the first place and the overwhelming issues he faced and endured over the past year, let alone the ongoing turmoil he encountered for the majority of his early life.

Did anyone even ask that question or establish a personal history that may have some basis or relevance to the issues he is now dealing with?

Does the fact that he is a person with feelings actually count for something; or is working from a somewhat type of textbook becoming more prevalent?

I cannot believe these people even have feelings or emotions, and now they walk away leaving us to ponder in the wake of their 1 hour meeting what we should be doing next, while they are feeling satisfied they have ticked their little boxes then toddled back off to their superficial world.

Later I decided to discuss the options with A.J.’s remedial support teacher stating I will ‘not’ allow A.J. to be stressed to the point of meltdown and the arrangements we had discussed prior will stand, yes introduce their program if they must, but not in the stand-over manner they requested.

 

Today I am delighted to be focusing on the positive;

……….well I do have to relish in the forward progression whenever I can!

I am able to smile and say that all the hard work, repetition, patience, understanding, time and so much more that I have dedicated to the understanding and instigation of all that A.J. requires, to assist him with his transition back to a normal school routine, working on any little angle that may be the key to keeping him focused, calm and on track with all areas of his educational journey; all this has finally been worthwhile.

This whole week at school has run through smoothly, with not only having A.J. settled and focused, I have been informed also to the fact that A.J. himself requested to join in sporting activities, and outdoor time during breaks.

He also attended School Assembly without too much concern, and on top of that he quite surprisingly coped well with an unexpected ‘fire drill’.

I am so surprised and pleased.

Then I am informed that he volunteered to help clean up the games cupboard and also helped to organise the reading groups.

Wow!! Wow!! Wow!!!!!  A big, big smile is on my face.

So do I have the right to say…………… “I Did This!!”……………….

I believe I deserve the recognition for the hard work and hours of dedication. These so called know-it-all CEO’s and their meetings demanding what they say is ‘best for the child’, well we did it before their interference; yes I did it; and his teacher’s patience and perseverance!!!!!!!

Most of all A.J. did it!!!!!

All we needed was time, I take a deep breath and sigh…..while remembering what the reality is…… but still acknowledging the moment for what it is. While looking at the big picture with all the issues, and realistically we may be starting at the beginning again tomorrow; although this has still been a big hurdle and A.J. himself has been the one to actually achieve this great step!

The end of this busy week sees a very exhausted A.J. saying he really ‘needs’ a break and a big bath! Afterwards I learnt the bubble bath so aptly enjoyed for an hour, also included the total of 3 part bottles of bubble bath! I now question whether the cost of those bottles really was worth the lovely break we both enjoyed??   Oh well!!  I guess in a way it was!!!!!

Ahead will be a nice quiet weekend, relaxed, no pressure, no expectations, A.J. so deserves it!

With the blink of an eye the days passed by and yet another week has ended with the positive progress continuing at school! Interaction in playground activity during break-time and full day involvement in the classroom continued.

Although the obvious signs of overstimulation issues occurring during school-time with A.J. trying to control his emotions have resulted in him letting out his anxiety at home. The main concern is the ever continuing process of shirt sucking and face rubbing causing the continuous rash becoming a concern to keep maintained.

I will continue to find a turning point to contain this too, I am so determined!