I don't profess to be a ‘writer’, to be quite
honest I'm far from it, over the years I’ve fallen on the opposite end of the
scale, although I do like to be systematically organised and find myself
jotting down notes, reminders and the like, to the point of obsession some of
my family will say.
So when it came to gaining care of A.J. due to the nature of our involvement in
our grandson’s life, long before we knew about his diagnosis, or even what the
word ‘Aspergers’ even meant; I was thrown in the deep end having to
file forms, document items, and correlate evidence in many areas to formulate a
case history of events, documenting
everything that was happening, and I finally found my footing in the
world of words.
I felt every piece
of information I could write down to remember would be of benefit, and was
eventually required to help with all the official, legal and medical needs with
the long line of professionals trying to unravel the mystery of his life.
Fighting tooth-and-nail for the best that A.J.
deserves, all this then became a way of life and I suddenly began to enjoy the way
I gathered my notations and reminders, it became a form of de-stress while we
were at the worst of the legal stage, trying to keep myself organised and up to
date with all the official jargon we were dealing with.
Afterwards the growing lists of books, files and
folders I had collected all of a sudden started taking up room that I didn't
have, I had all but decided to burn them when everything began to settle down,
although if you knew me you would definitely understand the reason that never
happened!
Not knowing at the
time how crucial these little bits of notation would become in acknowledging
and piecing together the traits and behaviours A.J. took on, the progression
then regression, and much more, assisting to finally gain the diagnosis we
never wanted to hear, but needed, to gain any help and support. I then found myself beginning to research and document all sorts of
new ideas and tried-and-true therapies and more.
I have found myself with rooms cluttered with
boxes, files, and note books everywhere, along with my sewing items and more.
Being a collector of sorts, I will say I would
definitely love an additional room to allocate all my precious notations and
keepsakes, to minimise the gathering of items in other rooms.
Some may even say borderline hoarder, although
the concept a bit closer than some may like to admit, It is definitely not all
consuming and I can still maintain our household……… omg, I can't believe I am
admitting that.
Regardless of any
personal family dynamic, the fact that when first given the diagnosis, or even
before, while struggling to understand the strange and differing behaviours
your child is displaying, it can be comforting to know you are not alone and
others are also going through the motions of piecing together what they will
also be told is labelled as AUTISM.
Many have said I’m
wrong allowing A.J.’s story to be ‘out there’ for all to see, although I have continued
for 2 reasons-
1/ it became a means
for me to vent, and writing became the way to help me de-stress
2/ knowing the
struggle I had to research and source the appropriate information, I wanted to
help share the same documentation in an easier format others would understand.
I still jot
everything down, systematically taking notes of the ‘progress moments’, the
‘I’d best not go there again moments’, and the ‘ooh I must remember that
moment’, or noting the revealing issues to chuckle about light-heartedly…….
At which
any given time can then become a ‘wow moment’ by others, realising they too
have had that happen and they can gain an understanding with their ‘it’s not
just us, others deal with that too moment’.
I have so much to express and ideas I want to
look into, trying to focus on my blog, arranging the Support Group, and also
the long list of craft ideas and sewing items that I have to do, I’m left with
too little time on my hands.
Wishing I
could work out a better time management plan, I need help, funny how I can do
it for others but when it comes back to me and I'm struggling to organise
everything.
‘Nanna’s Touch’ is based around support and assistance for all
families needing help to find direction and understanding with the diagnosis
that is becoming a part of many people’s lives
Please feel free to contact me by email or on any links shown on the
homepage
Happiness and Calm to all xxxx
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