Steve and I wanted at least three kids when we were first married. But J came a long and when I was about 6 months pregnant with W, we realized that J was having developmental issues. I don’t remember much of my pregnancy with W –those womb “connection” moments lying still, trying to feel her hiccups and kicks, trying to anticipate her little personality and all of those expectant mother things–because most of the time I was trying to drag a tantruming toddler off the floor–in parking lots, grocery stores, across the apartment. Any spot was a good spot for a meltdown. And then a month before W was born, my body was starting to turn on me. I had severe hip and back pain, and developed an umbilical hernia (which was fixed at the same time as my emergency appendectomy 6 weeks after W arrived). All while I was trying to mother an increasingly difficult child. I wasn’t sure I was able to handle W once she came.
It was a really hard choice for us to say that our family was complete after W. That’s the thing about autism–there’s a lot of “dreams” you’ve got to re-assess. I came to terms with our two kid family a little faster than Steve. I just couldn’t mentally, emotionally, and physically do it. The autism parenting gig and its battles were really hard on me (and still has its really hard moments) and the chances of us having another child with autism were higher than other families since we already had J (between 20-26%). For me, not only having another child seemed overwhelming–but the prospect of having another child with autism was just too much for me. So this is what our family looks like, and I think it looks perfect for us.
I feel like I’m always fighting that battle of having a life outside of autism. It’s something I’m very mindful of everyday. There are some aspects I really love about it, and I’m lucky because I feel that I have a lot of privilege that allows me to have access to time and resources that other parents of autistic children might not have. I get to make a lot of choices about my life and lifestyle to help me manage the stress (although I’m not always that great at it). I love researching about the brain, learning strategies, human development, psychology. I choose to spend a lot of my “free” time reading up on these things, not only because I’m searching for ways to help J, but because I love learning–I love learning about how we as humans tick and why we do the things we do and how we can be better humans. (I think that’s also why I’m so drawn to being a writer). But I have to be careful when I go down that rabbit hole. I can spend a lot of time there, and it can overtake my life. It can take over my time with W and Steve. But I’m grateful that I have that choice–and that I have the time to go there when I need to and want to.
I’m grateful that I have a husband who is supportive when I choose to leave (for a week or weekend) because I need a break from the autism and the stress and I need to remember what this human looks like by herself. I’m grateful that we can squeeze the budget to make that happen (grateful Steve has a job–even though the university is having budget issues), and that I have friends and family who will welcome me for a day or weekend or week. I didn’t always have this option. When the kids were babies/toddlers/preschoolers Steve was getting his was PhD. We were so poor–a family of 4 living on a GTA stipend and student loans. Financially and logistically that wasn’t a possibility.
I’m grateful that I could choose to go back to school when both of the kids started elementary school to earn my master’s degree. I’m glad that I can choose to be a writer–a not very successful one–but a writer all the same. I take on flexible with side-jobs when I can (adjuncting, editing, freelancing, tutoring–whatever is available at the time). Yes, sometimes I wish I could just have a normal 8-5 job, but autism doesn’t allow me do that right now, because sometimes I have to go up to the school or sometimes (like now) I have J for a few hours in the morning to work on some extra things. So I have my side jobs. What would my life look like if I didn’t have to worry about the autism? I wouldn’t have time to be a writer if I had that mom and 8-5 job gig. Autism not only allows me to be a writer but shapes me as a writer. I find autism sneaks into my writing sometimes even when I don’t want it too, not always in full on autism fashion. But it helps me understand character motivations better, it helps me write more complex characters, it helps me write about conflict better. My personal/professional life would look a lot different without the autism.
I look at the week coming up and I look at autism and how that affects my week. J has a dentist appointment on Wednesday. We’ve been preparing a little for that over the past month. We practice at night (when I remember), and I hold a pair of rounded salad tongs in his mouth for a few minutes with an electric toothbrush in his mouth so he will be used to the clamp and equipment they will use on Wednesday. There’s no guarantee that it will work to help the anxiety, and to be honest, I’m really stressed out about Wednesday’s appointment. I feel like much of my parenting life is really weird (salad tongs in your child’s mouth?) and really stressful, especially when we do things like this. But that is what autism brings and I don’t get to really choose what that looks like and what my son’s needs look like.
I also get to choose some things for me this week. I’m meeting with a photography professor today so I can understand the darkroom process for scenes in my novel. Steve and I have the opportunity to see columnist David Brooks speak at Concordia later this week. It’s also the same night where I can choose to drive down to Minneapolis and attend a free mini conference night with a reading comprehension program that I feel might really help J. I’m trying to negotiate a satellite option via the internet so I can make both work. I may have to make a choice between David Brooks and my cultural enrichment for more autism resource options for J. We’ll see. Sometimes I really hate having to make choices because of the autism factor.
But at least I’ve got choices.