I'm a mom of two beautiful boys. My youngest has autism. Parenting them both comes with many challenges, and like most parents, I try my best. While I have an amazing support system to help me along the way — which I wouldn't survive without — not everyone has been understanding. I have come across people who say or do the wrong thing, many of whom probably don't mean to. Maybe they didn't realize their words would leave an impact, but they did . . . they do. Because it's normal to be unsure of the right thing to do in certain situations, here are the things you shouldn't say to a parent like me.
1. "I'm sorry."
It took me almost a year to be able to say, "My son has autism." When I finally started to actually say it out loud to coworkers, friends, and family, I was taken aback by how many responded with "I'm sorry." I associate the sorry response to someone passing away, and my son is alive and well. He wasn't talking much at the time, occasionally biting and hitting, and watching a lot of Thomas the Tank Engine episodes, but he was (and still is) in great health.
But here's the thing, I'm not really sure what the proper response should be. Once during a job interview, when I was being upfront about my life and the need to work a day from home to accommodate my son's therapy sessions, the boss interviewing me said she was sorry. But she also asked if "I'm sorry" was the right response. She wanted to make sure she was appropriate and didn't offend going forward. I shrugged and said, "I'm not really sure." I wish I had the answer for this one, but I don't. Maybe going forward your response to "My son has autism" should just be "OK," or "If you ever need anything, I'm here."
2. "My kids are driving me nuts, but I know I shouldn't complain to you."
Being a parent is the hardest job in the world. You leave the hospital with a tiny, helpless infant and you're expected to turn them into a responsible adult. There's no training manual, and it's a thankless job that never ends. So believe me, I'm on board when a friend needs to vent about the latest thing their kid is doing to drive them insane. So instead of tip-toeing around what you want to say, just tell me all about how mad you are that your kid wouldn't wear a nice shirt for school pictures, because I get it (you're talking to a mom whose kid fights to get dressed and hates wearing a coat or shoes)! In fact, I probably understand more than your other mom friends because I have to deal with it every day. So don't hold back; bring it on and let's help each other smile over raising these little ones. We will survive — together!
3. "You're doing an amazing job."
Have you ever played pin the tail on the donkey? Parenting a child with special needs is a lot like that. You're blindfolded, spun around, and then released into the world and expected to go straight, yet you're constantly off balance and can't find your way. Thank you for saying I'm awesome, but I feel more like that little tail. I'm desperately trying to put it in the right place. I never feel like I'm doing enough. I never feel like I'm doing the right thing. I never feel awesome. But I do know I would spin around in circles for the rest of my life if it meant my little boy would be OK.
On second thought, you can tell me that my husband and I are amazing, we just won't believe you until we've done everything we can for our son.
4. "Things will get better."
OK, I know you mean well and this statement might even be in response to witnessing an epic meltdown, but what if things don't get better? What if, for the rest of my son's life, he hates wearing shoes? Yes, he can move to California and find a barefoot-friendly job like surfing, but what about tomorrow when I have to get him out the door to school? You see, getting an autism diagnosis, much like becoming a parent, doesn't come with an instruction manual. When one thing seems to start to disappear, he'll suddenly find something new to be anxious about. Currently, it's his fear that a shirt won't fit over his head. So we have to shove our heads through the hole to prove it will be OK, every single day, twice a day (pajamas, too). I don't know what the future holds. You don't either. I know you want things to be better for us, and I do too. For now, just hug me and buy me some wine.
5. "Why can't you get your kid to behave?"
Oh, lady in the food store. If you have a magic wand and can make this happen, especially in public, please do. I think all parents can agree that we prefer our kids to behave and not cause a scene in public, right? I do not head to the food store with two kids just to ruin your day — believe me! I wish I had a private shopper and chef to take care of feeding my family, but until I hit the lottery, you're going to get my boys eating a bag a pita chips as we fly through the store. If you're offended that my son with autism didn't answer when you asked him his name, get over it. But lady, if he answered you, just know I would have done a jig right there in the aisle — maybe even kissed you — so be careful what you ask for!
Above all, please just remember to be kind.