I have a child with special needs—a child who requires special attention and who asks us, as a family, to make special compromises. We love our little one, and we’re the kind of parents who try as much as possible to lead a nearly normal life despite his autism and its unique challenges. I mean, we still try to get out and do activities with the kids.
We try really hard, but sometimes we have to make compromises for everyone’s well-being—not to mention all the effort it takes from us. Like having to let Antoine know a few days in advance and prepare picture cards for each part of the day. Like having to bring along reinforcers in case he experiences sensory overload followed by a meltdown. Like, we can forget about going to restaurants. Like, going to the zoo in the middle of July? Forget it. We find activities that everyone will enjoy and try to adapt our day as best we can for our little guy. Sure, it takes a huge amount of energy every single day, and no, I’m not the type to want people to feel sorry for me. But………
I really struggle when people with perfectly healthy kids who are developing normally tell me: “I get it—our kid has tantrums too. I get it—potty training took a little longer for us, too. Oh, but you know, we’re all a little autistic. It’s the same for me—my kid refuses to eat macaroni”…
Here, the struggles are a daily reality. It’s not “a little longer” when your 5½-year-old son wants absolutely nothing to do with being potty-trained—it’s damn long. We deal with dozens of tantrums a day, and you’ve never seen tantrums like these, believe me! I’ve had to make sacrifices, like quitting my job and putting my business on hold for six months because of the overwhelming number of appointments. Dealing with food restrictions is pretty stressful when your child refuses to eat anything but bread and is skin and bones.
Or take the moms who have kids with more severe needs or who know someone who’s been through worse, and who tell me things like, “At least he’s alive and healthy,” “At least you only have one with autism—at least he’s healthy.” I totally agree—I’m lucky! At the same time, I also have the right to find this difficult sometimes. And yes, there will always be someone going through a harder time than we are. That doesn’t change the fact that I’d like people to acknowledge what I’m going through.
I know, these comments are meant to be clumsily encouraging. Instead of falling into the trap of comparison, why not ask the mom how she’s feeling about all this? Why not ask her what she might need? Because downplaying what she’s going through doesn’t really help. Come on, moms! We can lift each other up.
With love
Alexe, a first-time mom