The Sunday Edition·Point of View

'I'm the mom with the kid who howls like a wolf'

It's hard enough figuring out how to parent children who have come to be known as neurodiverse. The behaviours can be troubling and hard to fathom and so can the shifting labels. This is the complicated world that Emelia Symington Fedy inhabits, where labels close doors and open them. Her essay is called "All the Little Weirdos."
'Instead of constantly trying to force him into a world that doesn't really want the real, full him — we've decided to create a different one, where we can all have a break,' Emelia Symington Fedy writes about her son. (Submitted by Emelia Symington Fedy)
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I'm the mom with the kid who howls like a wolf.

He'll scratch you if you don't feed him fast enough, as wolves tend to do. 

I'm that mom at the playground whose child is screaming, a high pitched piercing scream. Ya, that's my kid. And no, I'm probably not going to do anything about it. You think this is the first time he's screamed like that today?

If you run into us at a birthday party — which would be highly unusual, because that would mean him keeping his clothes on in public — I'm not going to have time to talk with you about how this is such a hard age. Because I haven't found an easy age yet.

Every single moment is hard. 

I'm the mom with that kid. The one you look at sideways,  the one you're secretly glad isn't yours. The one you can't help but think "with a few more boundaries at home..."

And if you do try and parent my child, if you say "don't be rude" or tell him that he has to share — I will school you — quickly. Because these rules don't pertain to us. We don't live in your world. Do you hear me? We are from another planet.

I know it's hard to understand. You see us for short periods of time. "He's just quirky" you say. Or, "He sure has a lot of energy." Or, "Aggression is normal for boys, right?" I know you say this because I've listened in when you talk about  other parents with kids like mine, parents who are not managing their little hellions very well.  My eyes well up and my throat constricts. 

If there's no space for our child's different way of being in the world then we have no real choice but to stay home.- Emelia Symington Fedy

Because you don't see what goes on at our home. You don't hear us in the middle of the night. 

I wish I wasn't resentful. But I am. 

I know you are trying to be encouraging when you say "he seems like he's doing better" and "he'll grow out of it" but it has the opposite effect. 

What if he doesn't grow out of it? What if it gets worse?  And what is it in the first place? 

I hoped it was autism. We spent thousands of dollars on tests with child psychologists praying for a diagnosis that would make his behaviour make sense. And he failed. She told us the results were inconclusive and to re-test next year. 

'He’s my little weirdo and now that I see that I feel proud of how hard he’s working to figure out what to him is an unnatural world,' writes Emelia Symington Fedy. (Submitted by Emelia Symington Fedy)

I was gutted. Because an autism diagnosis means support and funding and a box we can tick so we're taken seriously.

It's clear — from all the appointments we've had with the OTs and SLPs and BIs and our SCDC — it's clear that he's different. 

But no matter how many specialists we see or behavioural consultants we hire — we don't have a name for his struggle and the stress of this "abnormal" behaviour is testing our marriage and breaking the bank and we need help.

"Hey, I notice you're not around anymore."

"Your life seems really hard right now." Or even, "Can we babysit for the night?" are phrases I long to hear.

Because the hardest thing for me is not having this child — the hardest part is you, not acknowledging it. 

I understand, I was the same. You don't know what to do — so you do nothing. But if there's no space for our child's different way of being in the world then we have no real choice but to stay home. It's easier for us to choose to be isolated, ya know?

One afternoon, a few weeks ago I was having a rare tea date with my social worker friend. I was crying, confiding in her, she said "Em, it's pretty clear to me, you have a WLK." 

"WLK?" I asked. 

"Ya. Weird little kid. They're everywhere."

For the first time in a long time something lifted and I started to laugh. I was so relieved. A WLK. I have a WLK. I found my son a label!

I know WLK isn't a real thing, but it's what we've got and with that lens I've started to advocate for my son a lot more successfully. 

He's my little weirdo, and now that I see that, I feel proud of how hard he's working to figure out what to him is an unnatural world.- Emelia Symington Fedy

He likes to wear noise-cancelling headphones in public, but not much else. 

Now that I know the warning signs, we're able — more often — to dodge a meltdown before it ends in blood.

Life is rough. Everywhere we go he encounters ways he's wrong, bad, or misunderstood. But now I'm telling everyone, the parents, teachers, his classmates, everyone — about my WLK. I tell them to look at his chin when they talk to him, and if he hisses at you it's not personal, he's asking for space and we're working on it. I'm involving people in the process whether they like it or not. 

He's my little weirdo, and now that I see that, I feel proud of how hard he's working to figure out what to him is an unnatural world. It's really hard — for all of us. But instead of constantly trying to force him into a world that doesn't really want the real, full him — we've decided to create a different one, where we can all have a break.

And you are invited to come over anytime. 

It's a comfortable place where you don't have to worry about pretences or fitting in. We'll try to teach you our language but don't worry too much about it, just show up messy and confused, you're fine just the way you are. 

The music will be carefully chosen. 

The food will be exactly the right texture.

We'll make time to rest and calm ourselves with heavy blankets and soft light.

And if you need to cry, we'll be here to hold you with just the right pressure, or maybe instead you'll prefer to run free?

Life is intense and the world is loud and not much makes sense. So we're trying to build a corner over here for all the little weirdos. We think it's a pretty rad place. And everyone's welcome. We'd love to have you.

Click 'listen' above to hear Emelia Symington Fedy's essay.

 

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