World Autism Awareness Day

To celebrate World Autism Awareness Day, I’ve always done a Facebook post describing the kids. Today is no different, except I’ll stick it on the blog instead. Talking about my kids is my favourite topic of all time – can you tell?

I’ll start with Penny.  Penelope Catherine – a name I only use when she’s in trouble – is 6 years old. She loves spelling, counting, singing, laughing, going to school, and playing on her beloved “tabby” (tablet). She is partially verbal, and communicates largely by Echolalia (repeating words or phrases). She stims frequently with a mix of yelling, tensing up, and jumping – we barely notice it anymore but it tends to be what strangers notice in public. Her new favourite activity is playing jokes on Shamus and I and she finds it hilarious when she makes us laugh. Shared enjoyment with her has been a long time coming and we’re appreciating it immensely. 

Penny has always had a lot of anxiety around change in routine and unpredictability so every morning we write out a visual schedule for her day and recently she helps me add things to it. We used to have a fancy laminated schedule that I spent a lot of time on, but now I just hand draw one daily in her “schedule book” . She likes to reread previous days frequently – not great when she reminds me that she went swimming and to McDonald’s that one time last month. These schedules have been super helpful during social distancing, even for me, because she keeps track of the date and the day of the week which is something I am definitely not doing myself.

She is very mild and soft-spoken. She tends to be a bit shy, and it’s hard to fully grasp her intelligence because she hides it for some reason. I only learned she knew how to read when I happened to watch her get into the parental controls on her tabby last year by reading the written out numbers. When I wrote out every word we could think of on a white board she was able to read them all. She likes to watch videos in several different languages, and she likes to list things in alphabetical order – including but not limited to: animals, jobs, TV/movie characters, and animals specific to Australia. She is particularly interested in reading street names and numbers recently. This year she also made a few friends at school that she regularly plays with there and some other classmates have been messaging her recently and letting her know they miss her. It’s flipping adorable.

We’re currently working on getting her to try new foods and it’s been going shockingly well – she mainly only eats macaroni and cheese and goldfish, but she’s also gotten super into orange juice and apple juice lately. Our highlights are that she seemed to enjoy bacon (she shared two pieces with me) and when she licked a brownie she uncharacteristically said, “das pretty good!” (she usually hates chocolate – it makes her gag).

Onto the youngest! Rory George is 4 years old. He loves dinkies, The Wiggles, singing, going for drives, and reading. His favourite book of all time is Green Eggs and Ham preferably read by Shamus, and he can recall nearly the whole thing by memory. I would consider him partially verbal as well – while he doesn’t have quite as many words as Penny and only on occasion communicates with Echolalia, he can repeat almost any word we ask and it’s increasing daily. He’s still in a stage of trying to get what he wants by dragging us to the place he needs us instead of using his words. He isn’t a huge fan of PECS (Picture Exchange Communication System – which is when they give a picture of what they want) but he can definitely get his point across! 

He is a super smiley kid and really loves attention (only on his demand, of course). He is in his glee any time he gets any sort of praise at all. Shamus and I describe him as “happy until he’s not” because he is generally an overall incredibly pleasant kid until he intensely freaks out – and when that’s over he’s super happy again. He has an obsession with Shamus and I sitting at the table with him, and we only figured out recently that he is recreating a scene in a Berenstain Bears book that he loves. That’s why we also call him The Director – he often arranges people and objects around the room (mostly adults because kids don’t oblige).

He started full time daycare in September and he has loved every minute of it. He has an inclusion worker in with him and that has eased my mind a lot. My favourite thing is when we walk into a birthday party and the kids excitedly sing out, “RORY!” – he doesn’t often acknowledge them, but I love that he’s still included and loved among the kids. He’ll be ecstatic when he’s able to go back to daycare when this is all over! 

Rory has a sensory issue where he constantly mouths everything. You know that Minister John Haggie comment everyone is laughing at recently about “don’t let them lick the shopping cart”? It didn’t strike me as particularly odd because that’s my kid. My kid is the one licking the shopping cart. He’s also bad for licking door knobs, hinges, loose change, and well, pretty much everything. He will have an immune system built of steel! He is currently struggling with some anxiety around potty training which is proving to be difficult even though he seems to understand it. Fun fact (that is not so fun): my kids, and a lot of others with Autism, struggle with anxiety. Most behaviours that are seen as unfavourable are often, I find, linked back to anxiety.

The kids have a very sweet relationship together. Penny likes to kiss Rory on the cheek a lot and Rory lets her. He will give her a hug or kiss sometimes when we ask him to, and she gets very excited about that. They don’t necessarily interact more than that, but yesterday we were all playing Ring Around the Rosie and when Penny sang it they made eye contact and held it for the first time – a big deal! They don’t necessarily interact with each other, but they complain about the other like, “Rory’s crying!” from Penny, or a scream about “NENNY!” (his word for his sister) from Rory. Penny also woke Rory up yesterday by putting her butt in his face while laughing, so I guess in some ways they are still stereotypical siblings!

Not everything is positive and uplifting all of the time. Constantly trying to keep ahead of issues that the kids deal with can be exhausting for them and for us as parents. I long for the day when they can tell me exactly what they want and need so there is less upset and guess work. But, overall, I think we are raising happy, healthy kids, and I love seeing them learn and grow. I also love that our home is their safe space and the outside world is starting to see how absolutely wonderful they are and how much everyone deserves to be included and accepted in society. There is still so far to go and so many hurdles to overcome – while that is absolutely overwhelming, I’m so happy to go through life with teachers as incredible as them.

(I’d get a picture of us all wearing blue, but Penny isn’t interested in getting dressed today. You win some, you lose some.)