A tale of two ducks waddling their way to ASD diagnosis
The husband and I spent a merry 8 years performing the courtship of ducks regarding ASD diagnosis. We would take turns waddling to opposing sides of the ‘he’s just quirky, there’s nothing wrong’ debate. Whilst one was convinced Boo was ‘on the spectrum’ or that things weren’t quite, air-quotes, “Normal” the other would be his staunchest defender: “he’s bright, he’s quirky, he’s fine”. It was, as I say, a merry little waddling courtship display.
When our world was rocked with the arrival of Boo, our whirling dervish of sensitivity and chaos, we kinda just sucked it up. It’s what you do, right? We didn’t know any different after all given that this is kiddo Number 1. And don’t forget, we loved this boy to his very bones. Our hearts grew for him, he taught us a depth of love we couldn’t of known before.
So he doesn’t sleep. Pah, Dotty at No. 9’s baby didn’t sleep till she was 38 I tell ya!
So he collects milk cartons. Cheaper than Thomas the Tank figurines.
So he is shy. So what? What’s the digs on being an extrovert anyway?
So he stims with two feathers? All toddlers are weird, right?
The list can go on.
See the thing is, as your amazing, and I do mean amazing, kid grows up a little bit, those idiosyncrasies, those foibles, those social difficulties tend to stick out a bit more. Frankly all toddlers are crazy with a good dollop of madness on top. And yours fits right in there. But when they’re not toddlers or pre-schoolers any more, then what?
As these other neuro-typically-normal kids grow up, those cute little quirks in your own kid? Well they begin to stand out. Now your kid is the only one that has a volume range that rests either on Surly-Silence or Too-Fucking-Loud. Your kid is the only one who has a Physical Proximity Radar that bounces with abandon between Get-Off-That-Hurts and where the heck did he go? Your kid is the only one who is endearingly honest, but also doesn’t quite get it.
So he’s hard-work. He’s bright. Can your kid list all 460 species of shark? So he has meltdowns that mightily represent toddler tantrums. He’s passionate. So he still won’t have his hair washed without the bathroom turning in to a cross between the Niagara Falls and Butchering Live? Normal right?
And then comes the day your waddling little duck courtship dance partner joined you on your side of the debate. Now you’re both asking – is this normal? By now, two further Crazies are in the House, and despite their own unique blend of haphazardness, they’re not this mix. They do Crazy in a normal we’re-just-having-a-great-childhood way, not Boo’s way.
So you do what any self-respecting parent does. Ignore it for a bit. That’s great, we like the ostrich head in the sand look anyway. We’re happy, everyone’s doing ok. With a little bit of love demonstrated in concrete ways (such as 30 hours teaching shoe-lacing or role playing ‘this is how to stop Jack punching you in the face by not pointing out he’s fibbing, darling’) we’ve got it covered.
Until you haven’t. Until, the love bank and the ‘I’d do anything for you’ approach don’t quite cut it any longer. Then what you’re left with is two parents (a.k.a. ducks) sat somewhat morosely with sand all over their heads but both in the same camp.
The Road to Diagnosis is a tale in itself, which is mirrored up and down the country leaving parent’s quivering in its wake sporting a hell of a lot more grey hairs. But one day you get there. You hear that phrase: “we see enough evidence to conclude that your son has high-functioning Autism”.
And BAM. GOTCHA. You thought you were prepared? Wrong.
You thought after 8 years of waddling back and forth in your merry dance prepared you for those words? You thought they couldn’t hurt because they’re not a surprise? Wrong.
By heck they hurt. They hurt because with that diagnosis comes the death of the idea that you could be wrong. And I would give anything to be proven wrong (here, just here, I’m Mrs Right most of the time ok?). I would fight the battle again to know he isn’t Autistic, that he won’t have this fuck-off hindrance holding on to him like some evil sticky goo for the rest of his life. We were so caught up in the battle of diagnosis (which it is, no joke) that we didn’t even question that getting ‘what we wanted’ was the last thing we’d actually want.
Because in that diagnosis we said the final farewell to the Idea of Boo. The Idea of Our Firstborn. The Idea of his perfect childhood that would see him scale the fences from walking to university with only the odd scraped knee along the way. He was, and is, so much more than that. We love him for who he is, yet that diagnosis chucked that last vestige of ‘idea’ out of the window. It didn’t change anything, it didn’t make him ‘wrong’ or ‘abnormal’, it didn’t change this amazing kid from who he is, and who he will be, and who we’ve loved since the moment he nearly broke the hospital scales as one hefty newborn. But it stung.
We needed to take time to recognise that. The diagnosis doesn’t change a great deal, but it does open doors and it does help you to understand even better. But getting it isn’t necessarily the clear cut relief you think it will be. And I wish I’d had someone to warn me of that.
We’re lucky, we waddled our way as a Parenting Team. We’ve navigated the pitfalls of parenting Boo for the last 10 years together, others aren’t so fortunate whether within a relationship or not. But I guess it comes down to the old adage: the truth hurts.
So Boo, yes those early days of diagnosis were tough in ways we didn’t expect. You were wobbling in your own ASD way, bewildered and lost on the rocky sea of diagnosis and we weren’t very good at lighting your way because we’d dropped our own lamps. But know this: we love you even more because of that damn little label that you don’t want and isn’t fair. We love you to your very bones. When you do something that has inherent challenge simply because of the sticky goo of Autism, and try even if you don’t succeed, we’re there, inwardly cheering like a support squad with psychedelic pompoms, but keeping it in so that you can keep calm. We’re your ducks, we’ve waddled together, and we’re here on your side.