As
I open our life to tell the story, you’re welcome to come inside;
Just
step on in, take a look around, we don’t have anything to hide!
Really; I’d love the distraction!
(chapter 8)...
We are very
friendly, so don’t be afraid; I’ll make you a cuppa, and we’ll relax for a
chat, although don’t expect the ‘royal treatment’; what you see is what you
get.
Our house
is clean, the dishes are done; mostly the washing is too, the beds may not be
tucked in all of the time, but the floors are clear of grime!
I always
say there’s a difference between ‘being dirty’ and ‘being messy’ and here we
have clutter, lots of it! Sometimes there may be a bit of mess with the
continuing long list of unfinished craft projects and my market items ready to
sell piled up in boxes, and crates set up as I need them to be while working on
yet another new idea.
This is ‘my’ distraction and
time-out.
The sign on
the fridge will say it all:
“I’m too busy
to be organised”
Although, even
with all of this mayhem, it will always be overshadowed by the priority of a
loving heart and being ready to share the little things we do together,
enjoying the fun times and silly moments that always make us smile.
Yes there
are so many differences here to compare with other homes.
The first
will be the so obvious ‘Whiteboard’ taking up the entire hallway wall. This is
what holds the key to the existence of normality, for the hope of having a good
day!
The
whiteboard is covered with A.J.’s Rosters and Timetables, this week’s Social
Study story; as well as pictures and stories explaining any involvement to this
finely structured household.
Walking
into A.J.’s room; is so different to any other 10 yr old's room, here too you
will find ‘I must do’ charts and daily rosters. You won’t find a skateboard,
soccer/football lying around, nothing that so many other boys have filling
their corners and walls.
For A.J.
the items of priority you will find so simply hidden underneath his bed or
maybe scattered around his room are boxes of Lego and blocks to build as his
fortress of the ‘Realm’ he so desires to protect his possessions, well at least
for this week.
Tomorrow
they could be the defender of the universe, charging, to hold back an attack
from ‘alien life-forces’.
Remember to
please tread lightly, you must never touch or move a thing as he knows what
goes where and how it should be, the existence of life itself may be altered or
maybe the cause of a major melt-down;
Both are not good!
The bed
itself so strange to see, he has an extra foam mattress bordering between the
wall and bed, this is so very necessary when he snuggles up at night covering
himself in blankets and then squeezing himself tightly against the foam for the
protection he needs to make it through the night.
If sleep
itself actually happens at all then this is greater than you could possibly
know!
The outside
world does not exist so the yard is bland and bare, no bikes or scooters,
swings or toys; it is an unnecessary wasted expense! Although the thought of a
trampoline is on the horizon, as for now that exists and doubles as his bed. Amazingly
precise to how he can do the most unique somersaults and back flips off the
bed, it is his newest form of self-calming tool (‘stimming’ they call it).
It’s the
start of the school holidays……………..
I've arranged for Poppy to be with A.J. while I help out with a family member at
work.
I enjoy the
downtime, being able to regroup my thoughts, to assess any issues that may need
my attention for the week!
At this
moment in time A.J. has his world evolving around the Sony and any of his
favourite games. So! Now the total outcome for how his holiday existed has
evolved completely around the Sony! I can-not believe how anyone would want to
spend hours upon hours staring into a screen, zoned out into the existence of
some silly game!
I have no
idea how A.J. will react when returning to his routine for the new school term,
was it really too much to ask, having him involved with some outdoor
stimulation time or the writing I organised to assist an easier transition back
to school programs!
Yet…………….No! This was too hard to
do……too difficult!!!
How could I
have left them alone, to fend for themselves?
Men are like
little children needing supervision to constantly monitor their every move; if
they had the choice they wouldn't even stop for a substantial meal break, their
focus is so precisely pinpointed in the one direction.
Arghhhhhh so frustrating!!!
So you see
we are just a normal family like so many others, doing all the normal things
while going through an extraordinary set of circumstances.
We have our
ups and downs, highs and lows, joys and sorrows, just like any other normal
family; the only difference, the
addition of Autism!
Back to
school for A.J. with the first week running reasonably smoothly, only a few
little hick-ups, I so need another meeting with his teachers, why is it so
difficult to arrange?
With the
hope of discussing his progress and setting up some ideas for planning new
techniques, helping things to run more smoothly in the classroom, with new suggestions
from his psychologist; I am so frustrated to have nothing set in motion.
How do we
work together to benefit A.J.’s progress if we’re not working on the same page!
I feel like
I’m banging my head against a brick wall hoping for a simple meeting to
actually take place let alone be able to discuss then set the ideas in motion.
I guess I
must remember it’s not all about us.
Yes, I
understand there are more than 20 students the teacher needs to consider.
I also know
that the issues we deal with daily for A.J. would be overwhelming for the
teacher without the knowledge that I have, and still trying to gain myself.
At the
moment I feel like I’m walking through a foggy haze not knowing where I am or what
direction I need to turn to find the correct way out. I feel there is no-one I
can turn to or talk with about what I’m going through, someone that would
really listen to what I’m saying and truly understand the situation I face on a
day-to-day basis.
Sometimes I
wonder if all this is really worth the effort, if only I could go back to time
prior to the diagnosis without all the meetings, appointments, assessments, and
time wasting, and just allow A.J. to be a 10 yr old boy, with all the fun and
excitement of adventure without psycho-analysing everything he says and does.
Maybe if we
see him solely as a boy doing normal boy things!
The
comments have been made to me –
How do you
know when the normal boy behaviour stops and Autism symptoms start?
Honestly sometimes I don’t know how
to answer that one!
I
constantly wonder if all those major issues hadn't been presented that
instigated his first large melt-down, would he have been able to flow through
in his consistent stable routine? Even without his diagnosis we knew he was
different, although we were coping.
Another new
day, another new outlook, why not step back, think, and take a moment;
No……… I don’t have the time;
I have more appointments, more
assessments, IEP plans to arrange.
Another
phone call from the school! Yes I have them on speed dial……. I cringe when I
see the caller ID, ohh no; what has happened now!!
Another
melt-down!!!
All from a
change in routine, and the computer internet being down!
By the time
I arrived a frightened and confused little boy tries to tell me……
- “that boy is
staring at me! Why does he stare?
He is burning
through my soul!
I’m sorry I said
swear words.
He wouldn't stop
staring; I just wanted him to go away! Why are they still there??”
A.J. was
then sent home from school. They can’t understand and they don’t want to
understand his unique language. He just wants to feel he has some control of ‘his’
situation! He wanted the children to stop
staring at him and go away -“move
out of my face!”
He’s only
10; he’s not violent or frightening in any way!
Would this
have happened if they gave more attention to A.J. instead of sitting him
somewhere away from their focus and ‘forgetting’ he was even there.
Would this
have happened if I had the meeting I repeatedly asked for?
I just
wanted to have enough time to discuss his Whole situation without being cut
off, to make a full appointment time, and be heard regarding the whole story!!
I can’t
handle this, it is becoming so overwhelming and I just have to ‘tell’ the story,
………….while
A.J. is actually living it!
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