Pre and Post Diagnosis

I’ve said a hundred times that I’ve found “pre-diagnosis” the hardest time for me. The space between feeling there’s something developmentally different about your child and the actual seeing of the doctors. Brutal. Particularly with Penny, because she was my first child and it was my first experience.

I was in limbo once the referral forms were sent to Child Development for her. I felt incredibly guilty that I saw some “flaws” in my kid. I was hesitant to mention it to anyone because the automatic reaction is to comfort: “She’ll be fine”, “She’ll grow out of it”. Then there was just massive mom guilt that in my gut I knew there was something there. Plus, my child was struggling with every day life, but I didn’t know what to do and who to turn to and it felt a helluvalot like I was failing. My kid was fairly happy but she would barely hug me and wouldn’t look at me. It killed me. It felt to me like I was floating in the abyss – not quite fitting with neurotypical families, not quite fitting with special needs families. Dark times, b’ys. I kind of hate thinking about it.

Then she was finally diagnosed and that was stressful at first too, but learned a whole new vocabulary, learned about visuals (which changed my life), and met a lot of amazing people I would likely never have connected with otherwise.

I actually had completely different reactions both times our children were diagnosed too.

With Penny, I was relieved but also shocked. I felt vindicated that I was right, but then it also felt weird to have someone with an education in such matters validate my feelings – apparently an unconscious part of me wanted the professionals to say, “Don’t be so foolish, she’s fine.” The label also scared the shit out of me. I knew that it was the same kid coming out of the appointment as going in, but it still threw me. Basically, I wasn’t sure how to react.

I was optimistic and positive, because that tends to be my default, but I was also devoid of emotion for a little bit. I “took to the bed”. I googled literally everything I could find. In a particularly down moment a few days after, Penny was watching TV and flapping her arms, and I thought, “If you would just stop flapping your arms, they wouldn’t think you have autism!”

At the time she was diagnosed, Penny happened to be going to a drop-in playgroup at the Autism Society. The first time we went there post-diagnosis, the lady working in the room asked how our appointment went (we had been speaking about it previously). I said something like, “she got her diagnosis of Autism”. The lady smiled wide, clapped, threw her arms in the air, and yelled, “YAYYYY!”

It took me off guard at the time. I mean, it’s a bit of a stretch for a regular reaction anyways, but at the time almost everyone else was giving us, “I’m sorry”, “that must be so hard”. It was, but the more I thought about it, I thought her reaction was amazing. When I really thought about it, I recognised that Penny was born with Autism. She was going to develop and learn differently from the moment she was born, probably even from the moment she was conceived. The fact that a doctor was able to put a word on why she does things the way she does, opened the door to so many resources. And how lucky we were that she was diagnosed before she even turned 3! (See, positive and optimistic.)

So, in March, 2018, when Rory was diagnosed, I sort of had this, “here we go again” moment. I thought I’d be crushed. I was so anxious and on the fence about him when I was going into the appointment. On the way back from his appointment, Shamus and I just brainstormed how we were going to work another ABA Therapy schedule into our lives.

You would think (and I always thought) that having more than one kid with Autism would be a lot harder. It can be a bit of a juggling act at times to accommodate appointments and therapy, but generally, it’s actually been easier in some ways. I don’t feel like one kid is getting more attention than the other. For a while we actually had both kids in therapy at the same time (with two different ABA therapists) and the house was shockingly quiet. Funny note: I came home for lunch once, didn’t hear anybody, but there were a total of 10 people in my home.

I actually find the hardest part is when I have to tell people I have two kids who have Autism. There are very few people who don’t say some form of, “both?!” and get a look of horror/pity. It’s a natural reaction, but it doesn’t get easier for me. I feel like I have to comfort complete strangers and assure them, “I’m okay, we’re okay. The kids are literally the best thing on this planet (even when they’re being shit disturbers.) I love them dearly.” I often joke that we’re not having any more kids because I’d run out of therapy rooms.

That’s not to say that life isn’t stressful – we have two kids, special needs or not, that shit is hard. In our home (and really in my whole support system) we try to stay positive and keep a sense of humour. I went to a therapist once to talk it all out, and she said something along the lines of, “it seems like you might use humour to cope”… I inadvertently gave her finger guns and a wink.

So, basically, truer words were never spoken.