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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