Having… THE TALK

There’s those big important talks we need to have with our kids. The birds and the bees, death, anti-racism….. neurodiversity.

I’ve always been a strong advocate of telling your children their diagnoses. It is a part of them. It is a sense of understanding. It is an explanation for how they see and experience the world it is not a negative to be hidden away. It is not ‘just’ a label. (I’m looking at you, Boomer parents).

In fact. My counsellor asked me today: how would a diagnosis have changed your childhood? Dude. That’s so hard. BUT, if my parents just told me. If they just said “hey, you are this thing they call “autistic”. It means you process everything a bit different”. Then. At least I wouldn’t have felt like an alien. At least I wouldn’t have felt unknown, unseen, like a fake…. At least I would have known their was a legit reason typical society didn’t work for me.

If I knew I was Autistic, maybe my teenage depression wouldn’t have run so deep.

If I knew I was Autistic, maybe I wouldn’t have struggled with weight loss as a way to gain a sense of control over life.

If I knew I was Autistic, maybe I could have given the nurses a heads up that I totally shut down in pain, and they would have believed I was in labour.

If I knew I was Autistic, maybe I could have sought out coping mechanisms instead of being thrown into the depths of infant-induced sensory overload.

So. I do not yet know how my own children’s brains work. I feel they are much more typical than mine. But, I also feel like 14 months into Covid regulations that they are potentially having any Autistic social tendencies forced upon them. Mommy’s brain however…

The girls and myself were all in the washroom. I just wanted to have my 5 minutes of face wash self-care. They were extra hyped up today. One shouted in glee and tried to slam the door. (If your auditory senses are anything like mine, you know how much a washroom reverberates noise. Uhg). I felt my anxiety spiking. And it was only 7am.

“Mommy has to tell you something important. Brains work in different ways. Daddy’s brain is something called ‘neurotypical’. That’s a big word to mean he feels comfortable with most of the world. He is great with people. He hears and feels things at a calm level.

Mommy’s brain is Autistic. That means it works differently. One way is that mommy has super senses. My ears and my eyes and my nose and my touch all work really really well. So I can see things other people can’t. And I can hear things across the house. And I feel things really big. Sometimes this is like a superpower! I can find little bits of glass or hear when you wake up. Sometimes there’s so much happening, my senses go AHHHHHHHH! and I need a quick break.

Now. I do not know how your or your sister’s brains work yet. They might be like Daddy’s or they might be like Mommy’s. Or, they might even be a little bit like both of us. Either way, it’s pretty cool.”

Who knows how much the 4.5 year old took in of that. But, she stayed surprisingly attentive. I’m sure a week or so down the road she’ll spew out some tidbit about mommy’s superpower eyes helping find missing lego pieces. That’s how I’ll know she actually listened.

Until then. I’ll brainstorm other differences to tell her about. Or over analyze where she may fall on the spectrum of all abilities. And keep telling her, “cause Mommy’s Autistic, that’s why”, whenever she asks me, “but WHY?!”

Functional toy play…

When I was a kid, one of my favourite set of toys was a collection of bouncy balls. Yes. There was great satisfaction on the repeated bounce and catch sounds and sensations. And it was totally awesome watching and learning about the different ways they would bounce by how you threw them, what the surface was, how dense they were….

My real play, though, created this huge imaginary world where the bouncy balls had names, roles, relationships, deep personalities, and ever-changing problems to overcome. It was a complicated world that I could happily play in for hours. I am sure there was a relationship that paralleled Rachel and Ross. I know it was a tragedy felt by all when the one brittle ball lost a chunk of himself. (His name was Bubba and he was never the same again).

Looking back on it brings a smile to my face. I can still see myself fully engaged in immense, visual, exciting play. Feeling as disappointed when a storyline ended as when one finishes an enthralling book. But, I had a huge wealth of plots and ideas to choose from. I had been reading since 3, after all, and had been enjoying my older sister’s teen novels and tv dramas for years.

However… Now that I’m an adult and surrounded by these ideas of “functional play”, I wonder what I looked like to an outsider. Sitting in my room alone for hours. Lining up bouncy balls, making them take turns rolling down ramps one at a time, reorganizing them in different locations constantly. It doesn’t look “fun” or “creative” or “normal” or…. “functional” from a neurotypical viewpoint.

Balls are for bouncing.

Balls are not for rescuing their long lost childhood friend from the lair of an evil sorcerer to only discover that the way they touch your hand sends sparks through your body and soul. No. That’s boring, repetitive, unimaginative non-play…..

Parenting suggestion:

Get down-right down- on the floor.

Watch your child play. What are they doing? How are their eyes, their face reacting? Could there be more happening than you are even aware of?

Gently try to join in by mimicking their style. Don’t change the play. Don’t make it ‘right’. Try to see it through their child eyes instead.

Be content to just observe if they do not want you interacting. That’s a great way to build trust and safety.

Disappointment and Frustration merge

When the kids mess around and wreck your awesome plan.

Does this happen to you? You get a fun, heart warming, memory making idea to do with your kids. It’s special. Usually for me it’s cosy and cuddly or it’s creation based. Think: build a fort and cosy up with all the blankets and pillows. Cuddle close and watch Disney on the tablet. Or go to the dollar store and get fun loose piece art supplies and spend the afternoon crafting!

homemade play dough rainbow

But the kids struggle to transition or they get over excited and can’t complete any task or they simply attack each as they do. I try to remind them of the joy we are aiming for. I see it in my mind’s eye and I crave the mommy-daughter moments and connections. I wish I could put my vision into their heads.

Each failed request, every ignored task, I see my image waver. It falters. My heart breaks a little.

I’ve never learned to deal with hurt or disappointment (or many emotions for that matter). I express it in frustration. I get exasperated. I want to yell “come on!!! Just put on your shoes!! We have a PLAN”. I want to cry. I want to throw something. I want to make some noise to block out the difficulties.

rainbow play dough Christmas trees

Sometimes we persevere through and we get to those cosy moments. Or those photo worthy creations. But I often struggle to move on from that disappointment meets frustration.

How do you stop a negative feeling?

How do you move with time to be in the present?

becoming a mom

Is there anything more sensory overload than becoming a mom for the first time? Even spending that first 40 weeks learning to give your body over to another HUMAN that is growing INSIDE you: it does not prepare you for the transition to parenthood. Labour, Caesarean, Epidural, Med-free, Adoption- however you went through the process, you suddenly are in a whole new ballgame.

Snuggles in the car, because they are needed everywhere, all the time.

An infant depends on you for touch, food, warmth, affection, soothing, experience. And there aren’t time-outs. Especially with my first. She had higher needs for being touched or held and could not sleep without that connection. This was quite a change for someone who likes to cuddle on her own terms and then sleep on the edge on the bed.

It was daunting to realize that I would never be completely alone. Even when the baby was with daddy, or I left the house, or eventually went to work or on a ladies trip, weaned.. I always have one line in my brain on her. She is not to be shut off.

Actually. Maybe becoming a mom to a second was the most sensory overlap! Now I had a 2 year old pulling my body in one direction, trying to communicate her needs, while the Wiggles played in the background and a fussing baby in my arms grabbing at my nipples, and the smell of diaper wafting my way. I was about to say that the only thing that was missing was heat. But, I had both my babes in the summer months, and I swear 2.5 years later, I’m still experiencing an elevated body temperature. (Of course, that could also be medication side effects.) I digress. I’m talking sounds, touches, smells, emotional needs, body temperatures, combatting demands, all while “Wake up Lachy!” is happening in the background and my mind just wants to place all the faces of the Wiggles in relation to the original cast.

I am very certain that no parenting book or pre-natal class in the world can prepare you for the sensory changes that come with newborns and new parenthood. Especially if you are at all neurodiverse and perceive input to a different degree that the average writer of those books.

So, it can feel like there is no where to turn. I know there are others out there. I know the 4:1 male:female Autism ratios are bogus. I know a lot of us are struggling in adulthood to determine why we feel so different, why life is so exhausting, why “oh you have Depression” never paints enough of a picture… And, we find ourselves in parenthood with little-to-no resources to support our unique needs. I’d like to create a space of that. Because even if there’s connection with one other parent, that’s a connection. That’s shared support.

I am a mom. I have two amazing children. I would not trade watching them play or sleep or laugh or tackle daddy for anything in the world. But, wow, it can be hard when they both want to win for getting the most mommy contact above the shoulders! There’s only so much of me up there, kids, and much of it is precious for survival!