“So what are you up to right now?”
I get this question from friends and family a lot. It’s an absolutely fair question, because my “personal life” outside of autism is always different depending on what day, month, or year we’re having this conversation. Almost every decision I make concerning my everyday life is made with J’s autism in mind, which means (depending on how well we’re doing, or how much we’re struggling with autism) my “personal life” will be a direct reflection of that.
It’s really hard to have a full time job and be a parent of a child with autism. No matter how old your kid is. Just because your autistic kid is in school all day, doesn’t mean that you have the same options to work like everyone else. I don’t have the same experience as everyone else of dropping my kids off for 6 or 7 hours a day and then picking them up after we’ve all put in a good day of hard work. Every day I drop J off at school, there is the very real possibility that I might have to drop everything I’ve planned for the morning or afternoon and deal with an autism emergency or crisis.
I’m not alone in this. Even though there are provisions protected for parents in the Americans with Disabilities Act, (meaning I can’t get fired because my disabled child that may require me to leave work) it’s logistically really hard to make things work. According to this study, more than half of moms report choosing to work less hours because of an autistic child. This study found, “On average, mothers of children with ASD earn 35% ($7189) less than the mothers of children with another health limitation and 56% ($14 755) less than the mothers of children with no health limitation. They are 6% less likely to be employed and work 7 hours less per week, on average, than mothers of children with no health limitation. There were no statistically significant differences in fathers’ labor market outcomes across 3 groups. On average, children with ASD are 9% less likely to have both parents working. Family earnings of children with ASD are 21% ($10 416) less than those of children with another health limitation and 28% ($17 763) less than those of children with no health limitation. Family weekly hours of work are an average of 5 hours less than those of children with no health limitation.”
It’s really hard to be a working mom. It’s even harder being a working mom of an autistic child. And it’s been an interesting experience over the last 5-6 years trying to figure out how my field of work (writing) works into the lifestyle I have. Even the nature of my work can be a hard struggle mentally/emotionally when measured up against my gig as an autism mom.
What my life currently looks like on the autism front (as of February 12, 2018)
- I am currently “unemployed“–and have been for the last 2 years. Right now this has been partly by choice, partly by necessity. Last year, while J was in grade 8, we made the decision for me to home school J in the mornings (until 10:15 am). This was to help with his behaviour and his academics. Part of the behavioural issue was because of hormones and middle school, but another piece of that struggle was J was struggling academically (which made him frustrated and act out). This year, has been MUCH better for J, and so far there’s been no need to home school.
- While J is in school: During the day (while J is at school) I do the autism “house keeping.” I email teachers and check in with any concerns we may be having. I research current issues I suspect J may be having (right now my big research concern involves visual processing issues). I also try to find time in the day to check the daily planner and make sure I can get extra books J may be reading in English class from the teacher (or Amazon). I also usually go online and find resources to refresh my brain on the math J will do when he gets home.
- After school: I meet up with J’s paras and have a quick chat to check to see how the day went. Then I make sure J is ready for Winter Running (which will become track in 2 weeks) and make sure that transition goes well. I no longer run with J!!! He does this on his own, however I still hang out after school and put in my own miles and make sure I’m back as soon as J is done, to make sure the transition home goes well.
- After school at home: We all take showers (post run), I make dinner, and then we start the homework grind from 7:00-9:00
What my life currently looks like on the “career” front (as of February 12, 2018)
- I am currently “unemployed“: (Although I really consider it being self-employed minus the income part). Right now my goal is to get my historical novel revised and good enough to send out to agents by the time the kids are out of school (because writing while the kids are home just doesn’t happen).
- While J is in school: I’m working like crazy to get that novel done. It’s taking a really long time. Because it’s historical fiction, it requires a lot of research–and then integrating that research back into my plot takes some work too. Every day (except Mondays where I try to throw in a blog post) I spend as many hours as I can on this. I’m hoping that when J is in his twenties and a little more settled, I’ll be able to apply for a tenure track position in creative writing at a university somewhere. I need to have publications to do that.
What my employment gigs have looked like over the past 8 years or so:
- Grad school and TA: As soon as W went to kindergarten I started on my MFA. I knew I wanted to go into creative writing and possibly teach, and looking at what our life looks like now, that was my only window of opportunity to do that (considering J’s autism). I’m SO glad the timing worked out on that. Because of that experience, I’ve been able to do other jobs in the last 5 years or so.
- Adjunct teaching: I’ve worked as an adjunct instructor at NDSU for a few semesters. It’s great for extra money and I really like teaching and interacting with students. However, while J was in middle school, I decided I needed to take a hiatus for a while–the autism stuff was really stressful and I couldn’t handle doing both.
- Copy editor: Even though I took a hiatus from adjunct teaching, I was able to pick up a part time job with super flexible hours as a copy editor for an academic journal. This was the perfect job to have while J was really struggling (because I could work on articles at 10 pm if I had to). This job ended up moving (along with my boss) to UNLV the same year I decided to home school J in the mornings, so the timing of that worked out really well!
- Freelance: As a writer, I’ve also freelanced a few articles about autism. This has also been a great opportunity, because it’s so flexible and I make a little extra money every once in a while.
Even though I’ve found a balance between work and autism mom, being a writer has its own struggles too. There are days when Steve comes home and tentatively asks, “how was your day?” And it’s always a loaded question, because as difficult and frustrating autism is, writing can be hard in the exact same ways. As a writer, you face A LOT of rejection. There are so many days, hours, and months spent on writing that seem to not amount to anything. There will be times when I spend weeks stewing on how to fix a problem with my plot or character, much in the same ways I stew over how to figure out some issue J is struggling with.
I love it, and equally hate it, and that’s why I stick with both jobs with such tenacity. I’m grateful for a working lifestyle that lets me do what I need to do as a mom (I know that balance is so hard for lots of people to find and it’s still hard to swing sometimes for me), and I’m even more grateful to a husband who really supports me in both pursuits. Adulting is hard folks!