Updated: Apr 11
So last week, we went to talk to the Board of Directors at the organization where Nolan gets his summer and after school services. What I didn’t mention is that our case manager there also has a son with severe autism.. So when she introduced us to the board, she talked about what it’s like to be a parent of a kiddo with special needs-- how it can be lonely and a challenge to relate to other people. At one point she drew the comparison to living on an island on our own, and that’s been stuck in my brain ever since.
She’s entirely right. Though in my head, it’s a bit more like the Island of Misfit Toys. And clearly we (as parents, grandparents, guardians and other caregivers) are the Misfit Toys.
Off of our island, the world is a weird ass place. The lights are too bright and no one thinks about whether the TV is on in the background or not. Parents choose clothing and shoes for their children based on warmth and style instead of whether their kids can tolerate keeping them on their bodies for any length of time. They make one meal for everyone in their family based on things like nutrition and personal preferences with no regard for things like textures, smells or (again) whether their kids can tolerate the way the foods feel in their mouths and look on their plates.
Off of the island, people leave the house to run errands with their families. They help each other shop in crowded grocery stores on weekend afternoons. And sometimes, they even leave their kids at home to go spend time with each other just for fun. Or, they’ll go spend time with other adults, maybe have adult beverage too many and try to sleep off a headache the next morning. It’s a strange concept, I know…
Somewhere in between our island and the mainland are the Mr. Narwhals of the world. Okay, clearly it’s the time of year where I’m seeing too many Christmas movies and specials, but hear me out on this one… Mr. Narwhal’s only line in Elf was, “Bye, Buddy. I hope you find your dad!” He was a supporter-- an on-looker who maybe didn’t understand the complicated nuances of the journey Buddy was about to take. But he clearly was a friend who wanted the best for Buddy, and I like to believe Mr. Narwhal would’ve been as helpful as he was able if Buddy asked.
But there we are on our Island of Misfit Toys. We might have friends on the mainland, but they can be hard to relate to sometimes. I know personally, I’m a hard person to be friends with. That’s not to say I don’t have any friends. But it’s hard to maintain a friendship on a deeper-than-casual level when so much of your life revolves around providing what your kids need. It’s sort of like those first few of years of parenthood where your kids needed you for everything, except for us it doesn’t get easier as they grow up. So while I love to hear about your kids’ witty jokes, the trip you took for a basketball tournament this weekend, a teacher’s unrealistic homework expectations and whatever other stories from your everyday lives that you have to share, I rarely have much to contribute to the conversation. Except sarcasm-- I tend to keep plenty of that on hand, but that doesn’t always help...
On this particular island, the Misfit Toys are all spread out-- you never know where or when you might run into another toy. And when you do find them, the other Misfit Toys are just as busy as we are trying to keep up with their own parental duties. These other Misfit Toys, though… they get it like no one else. We can talk about our everyday lives uncensored without scarring anyone emotionally or feeling like we’re being pitied. They live it just like we do. I mean, we love our Mr. Narwhals for all of the love and support they send our way, but seriously-- the Misfit Toys are our tribe.
So I tell you what-- when I DO find one of the other Misfit Toys, you can bet your ass I’m going to try my hardest to connect with them (it's always awkward) and make them a Misfit Toy Friend (or MTF). Sometimes these MTF’s are social media friends. I love to see what their kids are doing and be there to cheer them on (especially the parents). And the cheering we get from them is invaluable to me.
The local MTF’s can be even better, even though they can be surprisingly hard to find. If I know a local MTF is having a rough time and I want to bring a hotdish over to help (that’s a casserole for any of you non-Wisconsin/Minnesota folks) you know that I’m either going to make sure your kids are ok with what I bring or that it’ll be accompanied by a nice bag of dinosaur shaped chicken nuggets. And I also know that if it takes me 3 months to manage to do it, there is zero judgment. Because we all live it. Plus on rare occasions when kids are in school or otherwise occupied and in capable hands (that’s another subject for another day), we might even get to see each other and have an adult conversation. I mean, we'll probably talk about poop, but it’s still a conversation between two grown-ups.
I guess what I’m trying to say is that having a community of MTF’s is almost essential. Suffer through the awkward “Hey I have a special-needs kiddo too!” moments when they present themselves, and put yourself out there. Over time, you’ll build your tribe of people who understand each other. Knowing you’re not the only one on the island can make relating to the people on the mainland so much easier.
I’m not sure I understand just how yet, but somehow knowing I’m not the only misfit does that. Maybe it just lowers my overall stress level or helps me keep my give-a-damn set at a reasonable level… I may never know why.
But I know that without the other Misfit Toys and Mr. Narwhals of the world, I’d be drowning. So thank you for being my life raft. And don’t hesitate to reach out and make your own life raft bigger--it’s more stable that way.