Ah, summer. Lazy days, balmy nights spent around the campfire and vacations spent traipsing from sea to shining sea. Just kidding! When you’re an autism mom, those magical summer moments can feel more like nightmares — or at least require the same amount of planning as a full-fledged military campaign.
Don’t get me wrong. There’s plenty of good about being an autism mom. On the spectrum, my two kids are just as amazing and unique as any other kid, and you won’t find me crying about their differences (most of the time). But the truth is that parenting an autistic child bears little resemblance to parenting a neuro-typical child, and it can take its toll on the best of us. That’s why it’s important to tackle summer vacation from a realistic perspective instead of trying to fit in with the crowd.
You probably won’t be lazing away your summer by the pool, but with a little extra planning, you’ll still be able to create your own kind of magical summer memories.
Lazy days aren’t a thing
My favorite part of summer vacation is lazy days without a single plan in the world. In a perfect world, I would sleep in, enjoy a slow morning while the kids played and then we would all take off on a spontaneous adventure. The reality is that my daughter, like most autistic kids, thrives on structure and needs to know exactly what’s going to happen throughout the day. That means our summer vacation needs to be planned as thoroughly as her school day. Sigh.
To keep things manageable but still fun, one autism mom I know breaks the summer into themed weeks, planning activities and events around each theme. Visual schedules are also a necessary part of every day, even on summer vacation (and especially when we go on vacation!). Providing structured activities for our kids can reduce their stress and help us all get more from our summer vacation.
Therapies don’t take breaks
Most moms look forward to the break from the school-year grind. When you’re an autism mom, that grind never ends. There’s a seemingly endless round of therapies, ranging from OT to ABA, and none of them pause for the summer.
If anything, summer is more hectic than the school year because we have to fit in all these therapies around those memory-building moments we’re sure we need to give our kids. Good luck finding the energy to have a backyard campout after a long week of shuttling your child from therapy to therapy! The good news is that our kids are often much less interested in new adventures than we are, and they don’t mind taking it easy after a long day of therapies.
There are STILL school lunches to pack
I’ll admit that my hatred of packing school lunches is unreasonable. It only takes me a few minutes each morning and it really isn’t THAT bad, yet I can’t shake my excessive dislike of those godforsaken lunch boxes. As the school year came to a close, I consoled myself that at least summer break would put a stop to all those lunches to pack, but I was wrong. My daughter attends a summer ABA therapy camp that runs from 9 a.m. to 3 p.m. all summer, and you guessed it: I STILL have to pack a school lunch. It’s a silly thing, but it’s just another way that autism moms just don’t get a break.
It costs a fortune to get our kids the care they need
I swear by my daughter’s therapies and she loves going to them, but they aren’t cheap. Plus, many autism moms can’t send their kids to any old summer camp; they require special needs summer childcare for their kids so they can work, and all these specialized therapies and camps come at a premium.
As much as we might want to take our kids to exotic destinations or even to the lake for a long weekend, the money we spend on specialized care and therapies can leave us with nothing left to spend on summer fun.
Summer fun isn’t so fun
Most kids love going to water parks or play spaces, but for autistic kids, these places can trigger sensory overload. Heat, noise and crowds are the autism trifecta, and that can leave autism moms scrambling to fill endless summer days. There are few places that appeal to kids that don’t get crowded during the summer, so autism moms often find themselves spending more time at home (even though they’d really rather be out and about).
This is even more challenging when we have neuro-typical kids too. Balancing the needs of kids who are begging to go to the lake or the splash park is always a challenge when the same places they love create anxiety and fear in our autistic kids. There’s no right or wrong answer, but it’s easy to feel like we aren’t meeting anyone’s needs during the summer.
Going on a trip is like a really bad trip to the dentist
I’ve always loved to travel. But for my daughter, going on a trip is extremely anxiety-inducing, even if it’s only for a few days. She relies on her cat for comfort and the familiarity of our home for stability, and being away from them for any period of time is deeply upsetting to her. No matter how much we talk through the details of the trip ahead of time, there’s no predicting how it’ll go. We’ve had terrible meltdowns on airplanes and perfect flights, but the one constant in our travel experiences has been the lack of consistency.
Through the years, I’ve learned to plan the best I can and just ride the wave of whatever happens. My daughter may have meltdowns in public places and people may be huge jerks about it, but she enjoys traveling once she gets used to a new destination. She has every right to go to Disneyland or Hawaii, and the rest of the world can just suck it up and deal with a meltdown once in a while. Part of being an autism mom is learning to accept what you can’t change and letting go of any and all guilt or embarrassment about it.
There’s no break for us
Being with our kids nonstop can leave autism moms at the end of our ropes. Park dates require us to be on high alert in case our kids suddenly bolt, travel can trigger a meltdown at any moment and even a low-key backyard barbecue can turn sour in an instant when our kids hit their limits. Even our time away from our kids is often spent sitting in a therapy waiting room, not taking care of ourselves. None of this means we love our kids any less, but it does add up to what sometimes feels like an overwhelming amount of stress.
It’s important to find ways to take care of ourselves over the summer, and not just our kids. That’s easier said than done when there’s few breaks to be found, but if we don’t prioritize ourselves, we can’t be the moms our kids need us to be — or the women we want to be. Being an autism mom is a huge part of our lives, but it’s important not let our entire identities become consumed by our parenting either.
Most of all, autism moms need to remember that it’s often a tough path, but we’re in this together. Find your support group and share your experiences with moms who get it. Just don’t forget the wine.
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This post originally appeared on BlogHer.
Jody Allard is a writer and mother living in Seattle. Her work has appeared online in The Guardian, The Washington Post, Time and Scary Mommy, among others.