This post is dedicated to Roger. He has been moaning at me
to write a blog post, in what is rapidly becoming a ‘post-free wasteland’. I
could go into the ‘in’s-and-out’s’ of why this is happening, but frankly, the
reasons are boring and not worth the Internet space it will be congesting.
(In an attempt at disclosure, please let it be noted that I
am using alcohol as anti-migraine medication. Nothing else is working, so hey…
let’s give this a go).
Yesterday was World Autism Awareness Day. In fact, the whole
of April is Autism Awareness month. As such, there has been a plethora of
Autism articles and TV documentaries.
Today, I had to pick-up my Autistic son from school because
he was having a difficult day with numerous meltdowns.
It could have been the case, that I could have holed up in
my home, with my ‘anti-migraine’ medication and lamented on how my life is shit
and every parent who has ever had a ‘neuro-typical’, (shudder, I still hate
that word), kid, is damn lucky.
Then I stop myself.
The fact is, that this ‘parent’ bashing is just not on. When
my son was diagnosed as Autistic, I didn’t get a prescription for a harder
life. I wasn’t allocated a ‘ton-more-of-extra-crap’ with his paperwork. All
that happened is that he could get more help when I wasn’t around.
That’s not to say my life was hard. Those five years from
birth to diagnosis weren’t a walk in the park. However, my son was talking. My
son could walk. My son had all his senses – even if they were working overtime
most of the time. He was fed, loved and in a protective environment in a
wealthy nation. My son’s quality of life was better than most.
His quality of life was more difficult than most of his
peers, as he found the environment more confusing. He couldn’t understand why
people were saying the words they were and his senses meant everything around
him was like being in a loud 3-D surround sound cinema where they made you
touch every textile on the planet.
Yet, I would still take his behaviours’ over most of his
‘neuro-typical’ (still hate that word) peers. At least D was consistent. I knew
the Mall would cause issues. The swimming pool was a no-go. Giving him Banana
was a recipe for disaster. He was predictable. He didn’t change his mind on a
food/game/tv show/t-shirt because ‘Angelica’ down the road said “it was
‘lame’”. I knew how to stop his tantrums –usually remove the stimuli- unlike my
fellow parent’s who were at a loss when the child freaked in the local
supermarket. I HAD to understand how my child thought. I had to ‘step-up to the
plate’ and ‘do-my-homework’ to understand my child. Consequently, my parenting
skills were quickly taught. I wasn’t a better parent; I was just a parent who
had to learn quicker.
It’s not as if my peers of ‘normal’ (still not any better)
children have their issues. Parents usually have to worry about SAT exams and
report cards. They have to worry about ‘extra-curricular’ activities and
ensuring their child is challenged. They worry about their child fitting in and
having friends. They have to console their child when their friends play
‘mind-games’. There is paying for college and moving-out.
The likelihood is, that I really don’t need to worry about
any of that. D will probably not sit an exam. His report card is an IEP and we
concentrate on more ‘life-skills’ than academic-scores. We don’t worry about
taking him to after-school clubs, because in his head school finishes at the
bell. That’s not a battle I am prepared to fight at the moment. He doesn’t care
what others’ think, so there won’t be any of that. As for college and living
independently, we will cross that bridge when we come to it. However, the
percentage of autistic children living independently is usually very small. I
am lucky that I get to have my quirky, cool and fun kid and home for longer.
My life isn’t any worse, just unique. When my friends say, “your
life must be tough”, I respond, “it’s just different”.
I began thinking that really we should stop this competition
between parents on “how hard your life is…” When we hear a kid screaming in the
shopping aisle that he wants to push the trolley –as I saw today-, we
shouldn’t, as parent’s judge that mother/father/what-ever because their child
is having a difficult day. Until we have lived a minute in their shoes, then
frankly we shouldn’t judge. We should be aware of their ‘unique’ struggles.
As I progress from the wine to the washing-up, I begin
thinking that really this statement should be more ‘blanketing’. You don’t have
to have children to have your own struggles. People across the world have to
deal with being sick. They have to deal with their loved-ones being ill.
Everyone, no matter age, sex, religion, family-setup, is not immune to illness,
death and taxes. There is poverty, sickness and loss everywhere and we
shouldn’t judge people on a sliding scale to ourselves. This isn’t a
competition folks, where we are in it to win, ‘who has the crappiest life’;
Young, old and in-between; Male, female and those ‘in the middle’; Gay,
straight, bi-sexual and trans-gender; Rich, poor and the families who get-by; Disabled
and whole. We all have our own struggles. As I amend the adage. “If you have
met one person with Autism, you have met one person with Autism”, we should
remember, that ‘when we have met one person, we have met one person’. We are
all unique.
So, let’s stop with this ‘Awareness
day/week/month/what-ever’. Why do we need a period of time to stop ourselves
from blurting out whatever is spiteful in our mouths? Why do we have to be
reminded to be thoughtful? How has it come to a point where we only think of
others if our calendar tells us to?
We don’t need an “awareness day”. We need to just be aware.
