Autism is my rabbit hole

My cousin’s wedding couldn’t have come at a better time.

There are these moments, as an autism mom, where I need to just leave. I need to leave Steve, W, and J. I need to leave the high levels of stress (akin to cortisol levels of combat soldiers) that raising an autistic teen triggers and go far away because I need to remember who I am again. Autism is my Wonderland rabbit hole.  I’ve talked to my sister-in-law about this before (she also has a kid with autism) and she has the same sentiments. Unlike other forms of disability, there’s no known “threshold” for kids with autism. No one knows what the emotional, intellectual, physical, or social limits are for a kid with autism (and kids on the spectrum are all so different anyway) that as a parent you are always terrified that you’ll let your child down in some way. What if I push too much? What if I didn’t push enough and she/he never reaches their potential? You ask yourself these questions every single day.

As if that wasn’t enough stress and anxiety, as a parent of a child with autism, you find yourself absorbing everyone else’s anxiety too. The energy of your child’s meltdowns, the energy of a stranger’s uncomfortable reaction, the concern of teachers and family members. Sometimes I can get consumed treading that path and get so lost in it that I start to feel overwhelmed and feel like I can’t get out of it. Then I feel it in the tightness of my muscles. I catch myself holding my breath when I’m folding laundry or doing the dishes. My anxiety likes to settle in my stomach, and so sometimes I feel sick or nauseated and lose my appetite. Because I live with someone with severe anxiety and have taught him how to recognize how anxiety looks in his body, I’m acutely aware of when and where that anxiety starts to shows up in my body. Sure, there’s the day-to-day worries (during the school year, wondering if that text or phone call is from the school; during the summer, making sure J’s mind is constantly being stimulated during the day so he doesn’t just check out and stim all day) that I sort of muddle through and deal with, but maintaining a level head on those daily tasks starts to take its toll. And every four to five months, it seems, I hit a breaking point.

A few weeks ago, I was nearing that breaking point again.

Luckily, Steve and I had already arranged for me to attend my cousin John’s wedding in Toronto a few months ago. The plan was made for a 5 day getaway. I would fly out, stay in Toronto with my other cousin, Jacqueline, and Jacqueline and I would attend the wedding together. That 5 day getaway would be the mental regrouping I needed and it would be a wonderful opportunity to visit with family.

Mental health is an interesting thing. At one point in my life I assumed it was something you were sort of born with. Either you were born an anxious kid, or you were not. You were either born happy, or you weren’t. It’s sort of that messed up notion of mental health that you’re predestined to be “normal” or “not normal,” that idea that you’re either born strong enough to handle tough things or you’re not. But then I had J, and then we started this autism path and I realized that’s not exactly how mental health always works. You can be born, like J, with your brain wired a certain way to misinterpret certain (benign) stimuli as threats. But life can also throw a stimulus at you that, over time, can wire your brain to more become more sensitive to that fight or flight trigger. Like me, and J’s autism. Over twelve years of unpredictable, constant stress, can challenge your mental health too. And it’s just as important to be aware of that.

I had the most amazing time in Toronto. My cousin Jacqueline is one of my best friends. She was a wonderful, kind, and caring host. She got us tickets to the Jays game right behind my cousins, arranged transportation (including the TTC, Uber, and Car Share) around Toronto to show me all of her favourite places and made sure we had a ride up to the wedding (which was a little out of Toronto). We had the best time talking and visiting and she was a great friend to have along at the wedding. I got to visit with my Doan cousins, who are all wonderful guys. I got to meet John’s new wife. I really didn’t think about J or autism at all.

I’m so lucky that I have such supportive friends and family in my life. I’ve had landing places in New Jersey, Austin, Winnipeg, Souix Falls, and Minneapolis and friends and family who have met me in those places and friends, sometimes, who have taken me there. Every visit has been such an important part in helping me stay mentally healthy. I always talk about how grateful I am for J’s village in helping me raise him. I’m also really grateful to my friends and family village who help support me mentally and emotionally too.

Sometimes I can reciprocate that same friendship to others. Sometimes I can’t. It’s taken me a bit to be okay with that last part, and I hope that my friends and family understand those times when I can’t. I just have to accept that “my best is the best” and that others will understand that too.

School starts this week (and J is starting high school!) and so we’re hitting another transition time. I’m hoping for the best, although I know anything can happen! Already the kids have been a little emotional (or acted out) and I can tell they’re a little nervous. J had a rough behaviour day at XC on Thursday (and has told me multiple times since that he’s really worried about the first day of school), and W had a really tearful Friday. For those of you who follow my Instagram, that poor little butterfly didn’t make it 🙁 W found her in the grass later that day being consumed by yellow jackets. It was quite traumatic. I guess it just goes to show that life on planet earth is just hard sometimes!

Wish us luck! And best of luck to all of you who are sending off your kiddos in the next few weeks! Thanks for keeping me company in the trenches!

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