Saturday, 2 April 2016

Why April Is Important.

Please see bottom for my apology and why we will be parting ways with this "Light it up blue/wear blue (unless by chance) & Autism Speaks" - not that we were in any partnership with Autism Speaks and haven't read anything from their site - but I wanted to clarify.

Ask me a few years ago- pre-pregnancy or even before V-Man's diagnosis and I couldn't tell you why April 2nd is kind of a big deal for thousands of families around the world.
Now that I have someone autistic in my life (and recently found out my cousin is on the spectrum too- although not biologically related- so no genetic ties to V-Man at least)- autism has become a huge part of my life.

Of course everyday for us is autism awareness day-both negatively and (recently) positively speaking.
It is especially a "Spread the awareness" kind of day when I have to take the V-Man out to get groceries or even worse- go to the nurse/doctor or hospital. I internally grimace at the sh*t he can cause when in health centre zones and imagine myself with a glass of wine...

So for those that don't know- April is autism awareness month and specifically- today (April 2nd) is autism awareness day. It probably would've been earlier, like on the first but April Fool's Day was booked decades ago.

So why is it actually important to me?
I try not to eat, sleep and breathe autism-related things all the time because I'm a mom of an autistic kiddo, V-Man. But I'm also the mom of two other kids and while they're still young and not quite understanding of what autism is and why their big brother does things the way he does- I still advocate the need to educate people about autism.
That and I have other hobbies and interests beside autism-related things. (I don't mean this in a rude or ignorant manner-I simply want to keep myself happy and my family happy because autism can be a downer sometimes!)

I don't have a science degree or a future career related to autism (I'm in cooking school)- but what I do have is the V-Man.
The first couple of years (pre-diagnosis times)- the V-Man was hitting milestones like any other kid (except speaking) -mostly on time - but hitting so many autism milestones at the same time, we had no idea.
Things like refusing to be bottle fed, refusing a soother, walking on his toes, grinding his teeth, flapping his hands (stimming), being a picky eater (he could tell Chiquita bananas from other brands based on touch and taste), having a hard time adjusting to strangers or new surroundings... The list goes on but man could he jump and climb and had 0 fear about everything he did.

April means to me- the chance for my son's differences to shine.
It means he's just as special as any other kid and just as capable.
It means that autism is a real condition, a real thing and not just a "phase V-Man will grow out of".
It means that those with autism face real life struggles with every day common things (for the neurotypical person) and that they truly need help of all kinds but most importantly-they need patience and understanding.
It means that we can try to stop the stigma that autistic people can't do anything and everything a neurotypical person can do but shine on the fact that they have particular habits and skills that are just as awesome.
It means that if we ever have to move from Finland- the first two things I look at in a potential new country for us is: autism health care services (costs, availability etc) and how safe of a place it is. I cringe and cry every time I hear about innocent autistic (and other disabilities!) people getting hurt because the emergency staff isn't trained to recognize someone with autism. Or because they weren't safe at school or a public setting- the list goes on. Of course no country is perfect but those are the things we have to consider. We can't just pick a place with decent schools and friendly neighbourhoods- there's so much more to it for us.
We happened to be wearing blue.
It means raising awareness that there are people in the world that think so differently from you and I and we should also learn how to embrace it.

Thanks to everyone who has ever asked me questions about what our life is like with an autistic child, shared some autism-related link, offered to give a hand or a cup of tea to cry over, or just listened.

The pre-diagnosis years were super tough but things are getting easier.
I'm working on basic life skill with the V-Man everyday and as simple as the task may be- he's a different child.
He no longer screams out of boredom or feeling useless. He has little chores and tasks to do and that makes him smile and happy. He feels loved, challenged and valued- and he knows (I'm sure) that his participation is appreciated.

And that is why April is important to me.

PS Important update:

Dear everyone:
I just removed anything that has to deal with the "Light it up blue" / Autism Speaks campaign as I had no idea that AS has such a negative view on autism.
I realize that living in Finland- I miss a lot of history on various companies (especially if the news is primarily based in North America) - and after reading SEVERAL comments about how Autism Speaks (which created the wear blue campaign)- I will not be supporting the "Light it up blue" campaign.
The best way to encourage and spread autism awareness is by talking about it.
Answering questions people have, asking your own questions and living your life to the fullest.
I'll let you do your own research but the basics are: nobody autistic is on their advisory board and less than 4% of donations gets used for families with autistic family members. That saddens and disgusts me. They're semi- anti-vaxers as well and we all know that had been debunked repeatedly.

While we deeply appreciate all of our friends who chose to wear blue today (and we did as well unintentionally!) but we will be parting ways with that idea in future- unless of course, it's by chance.
They are also semi anti-vaxxers and for me - that's a no go.  Especially when it involves putting other people's children at risk and their lives.  And we all know that these theories about vaccines "causing autism" has been debunked repeatedly.
Thanks for your understanding,

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