It’s Been One Year Now
It's been one year now since that terrible time when we were told
that our son needed major brain surgery. Mackenzie will turn 4 in
2 day's time. It's amazing how quickly that year has gone. Equally
amazing that the mind dulls the memory of how agonising it is to
hand your child over to the doctors who are about to cut into his
brain. The same doctors who have said, "We need to point out
the risks, he may be paralysed, he may have a stroke, if we touch
the brain stem he will bleed to death". You gently kiss him
goodbye, not knowing if it is goodbye forever. Thank god it wasn't.
It’s also nearly one year since we discovered the 'A' word
- Autism. A year of learning, for us, as well as him. We have become
amateur experts on the subject. We can talk in technical terms,
quote the incidence, and list the behaviours - talk the talk. But
in the quiet moments when you're alone, the reality hits hard.
Despite all the reading and research, I know nothing about it at
all. I can't be in his head to feel what he feels. What I wouldn't
give if I could say, ‘look at my eyes’ and while he was,
I could look into his and understand. What is it that he hears that
I don't hear? What is it that he sees that I can't see? What simple
thing has happened to upset him so much that he needs to arrange
and rearrange his treasures in order to be calm? What sense is he
trying to make when he is reciting his stories?
Autism Spectrum Disorder (ASD) is the formal diagnosis. The diagnosis
for the rest of the family is disorderly life. This will be caused
by attempting to maintain perfect order for your child. ASD does
have its good points though. Daddy never loses his keys anymore
because Mackenzie knows where everything is. We don't need to read
our daughter stories as Mackenzie can recite any one she chooses,
even though he can't yet read. I don't lose my car in shopping centre
car parks now. Baby sitters beware! He tells us every word you have
uttered while we have been gone - no need for nannycam here.
(Special note to mobile animal farms - if there is a child with
autism in the group, please don't use the words ‘time to pack
up’ whilst they are holding a baby bunny and standing a metre
from the cage. Bunnies can't fly and don't land on their feet.)
ASD - A Special Disorder
A Sudden unexpected Delight in something
that may have gone unnoticed had your son not been autistic. "Mummy,
that's a green tree", stating the obvious to anyone else but
the obvious isn't always visible to our child.
A State of Despair. Why can't he just sit
in any seat? Why can't he use a different cup? Why can't he be just
like everyone else?
Always Something Different. Our lives are
never dull with Mackenzie as our son. Just when you think you have
figured out one of his quirky habits, it changes to something else.
A Story Developing. How will Mackenzie's story
end? What will his future hold? Are we doing all that we can and
is it what he wants? There are still many questions with few answers
but we are just so thankful that we still have our precious son,
that autism seems a small price to pay. I wonder what the next 12
months will hold?
Yvonne Lee
NoticeBoard
May 2001
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