We’re on one of those good patches of the rollercoaster ride at the moment, where we’re actually able to look at the view without freaking out about what gut-churning horrors are in store. (I read this sentence back and I think, why in hell am I writing this? There’s a shoe about to drop on my head from a great height, for sure!)
Nonetheless, while we’re breathing at a relatively normal rate and smiling, I thought it was worth taking the time to send a little message to myself, five years ago. I could so have used some advice when I started my journey through autism world.
I’m feeling a lot of sympathy for the woman I was in 2005. Post-odd feeling something was not quite right and pre-diagnosis. The mother who didn’t want to give in to the thought that something might be ‘wrong’ with her perfect little boy. She was a little thinner than me, which I am slightly envious of, but apart from that I feel for her. I want to reach back in time and give her a hug.
I wish I could give her a few hints as well, a bit of reassurance, a few clues for the treasure hunt she was about to embark on…
Read this list, then eat it. You are looking a little too thin.
Clue One: Make a lot of lists
When you go to doctors and talk about your child, prepare for the appointments like it’s a really seriously important exam.
Write notes, make lists, collect previous doctor reports and pathology, think of every possible thing the doctor might ask and write down your answer. I say this because for some reason I am yet to fathom, many doctors find it confronting when a parent expresses emotion when speaking about their child who may or may not have special needs. I was offered counselling, group therapy and anti-depressants from a number of medical professionals. None of them took the time to look at Billy. I’ve been known to be a fairly dramatic type, professionally, but seriously, I don’t see any thing indicating mental illness in a mother who cries while admitting she suspects autism in her toddler.
To avoid discomfort for all, I say, put it all on paper. You won’t miss any details, and the doctor can’t pretend they don’t have the relevant information.
Clue Two: Go with your gut.
I don’t want to scare you, but… you are right. You may not have the details 100% nailed, but your instinct that there’s something going on? That bit’s right on the money. Believe yourself. Back yourself. Because there will be many, many occasions in the near future where it seems like you against the world. As much as people (doctors, therapists, educators) will tell you to stay away from Google, don’t. Anyone who gives you the impression that we know a whole lot about autism is either fooling you, or an expert in one tiny corner of the field. We are in the middle of an extraordinary autistic ‘movement’ – an epidemic, an explosion, call it whatever you want. Whatever’s causing numbers to increase so rapidly, it’s not going to stop until we have more information.
So, inform yourself, girl. You don’t have to believe everything you read. You don’t have to accept everything you read. But what you learn, from your experience and from actively seeking answers, will all contribute to a shared understanding of a truly confusing and increasingly insidious disorder. You have power here. Don’t limit yourself to Google, BTW, books are good, magazines are great, research papers and academics are useful. Most of all, other parents in similar situations to you are invaluable. Which leads me to my final clue.
Clue Three: You are not alone.
As much as it might feel like you are, you are not alone. Nor is your child. You are one among a global community of many. On this journey, you will meet many people just like you. They might not look like you. They might not sound like you. They might not live anywhere near you. But, rest assured, they are on a similar journey to you. They feel what you feel. They love as hard, and cry as hard, and even make that same crunched up, nasty face when they’re loving their kid through a wave of tears and frustration.
You will learn a lot from those other parents, and even more from their kids. You will make friends in a whole new way and on a whole new level. These friends will change the course of your life, far more than autism ever will. They will show you that nothing is more powerful, more change-making, more motivating… than love.
Plus, they will make you laugh. And I know that’s important, because right now, you are thinking you might never crack a smile again.
I want to tell you all these things, 2005-Me, because I want you to know above all, that you are on a treasure hunt.
On your hunt, you will uncover glittery nuggets of language. You will find wooden chests full of motor skills. You will want to lie down and roll around in vast quantities of social skills. You will also find yourself wandering around in dead ends full of ‘magic bullet’ promises. You might uncover a pirate scam or two. You may even chase a couple of mirages – full of promise but ultimately delivering nothing. One day, though, you will scratch the surface, and spot the shiny gold of your kid’s promise – his abilities, his strengths, his future.
The good news is, the treasure hunt goes on and on and on. Along the way, you will come to a point where X really does mark the spot. Because everyone knows that an X stands for a kiss.
And like an episode of Gossip Girl, that’s what I’d end my letter to myself with. You’ll be fine. Your son will be fine. It seems like the end of the world, but it’s so not. XOXO.
Now, dry your tears, eat up, and let the games begin.
Valerie's increasingly random thoughts about autism and life can be found at Jump on the Rollercoaster.