(This post has been republished from 2014.)
One of the downsides of being a special needs mom is that we’re subjected to a variety of comments as people see fit. Some are well intended (but still kick us in the gut) and some are downright thoughtless. Every parent has their own hot buttons. Here’s my version of “5 Things You Should Not Say to a Special Needs Parent (and better yet “5 Things You SHOULD Say!”)
5 Things You Should Not Say to a Special Needs Parent…
“How is h/she doing cognitively?” Would these people ever thinking of asking a parent of a so-called typically developing child that question? An IQ test or age appropriate academic skills are not a reflection of our children’s worth as human beings.
My son is close to adulthood. His reading and writing skills are minimal. He does love to cook and knows more Spanish than I do. He’s smart and very intuitive. He speaks quite well. He’s the kid that teachers and camp counselors take me aside to tell me privately “I know I’m not supposed to say this but he’s my favorite!” He’s impacting people around him far more than many of us ever will.
“I’m sorry.” Thankfully this doesn’t happen too often but when it does I simply respond, “There’s nothing to be sorry about. He’s a JOY.”
“Have you disciplined him/her biblically?” I started to get this around the same time I discovered what sensory processing issues were. My son just couldn’t handle crowds without getting hyper and acting out. As much as I wanted to be hospitable and stand around talking after church, it just wasn’t happening. I began to retreat into my shell.
“That’s so retarded.” It pains me how often I’ve heard this around church circles. In recent social media I’ve also heard terms like “celebutard” and “glutard”. It isn’t funny. (Admittedly I’ve probably used it myself a few times in my life. Now I know better. It’s one of the many lessons my son has taught me.) It hurts and demeans our children and us. There are so many other words in the English language that could be used.
“Did you know when you were pregnant?” It was suspected but the only option available to confirm it at the time was amniocentesis. Being pro-life, I wasn’t willing to take the risk. And if I did know, I still would have carried him to term.
5 Things You Should Say To a Special Needs Parent
Say “Congratulations!” when their baby is born. I still remember the one person who did. She was a special needs mom too.
“How Can I Help?” If they’re anything like me, they may just mumble “thanks” and not be able to come up with concrete ideas. Offers to babysit are wildly appreciated. Offer to pick something up from the store for them. Stop by and visit. Some of us are really housebound and starved for company.
“Can your child come over to play?” A sad reality for me over the years is we’re just not included in a lot of things and unfortunately sometimes I can see what we’ve been left out of on Facebook. Yes, it will take a little bit of effort to interact with our kids. They are slower to process. They have language and communication difficulties. Sometimes they are going to say and do inappropriate things. But how will they learn to interact in appropriate ways if nobody wants them around? Try making a set plan with a start and finish time so everybody knows what to expect. You just may find that you’ll receive a lot more than you’ve given.
“Why don’t we do breakfast/lunch/coffee?” Many special needs parents (including me) are heavily connected on social media channels. Given our hectic and stressful schedules, it can be the only social interaction we get. But nothing replaces real life fellowship with people who live in your area.
“I’d like to stop by.” When I was a new mom at age 29 (to a neurotypical kid) I was a little shell shocked and overwhelmed after being a working person for 10 years. I didn’t know a thing about being a mom. (I’m a little embarrassed to write this!) I will never forget a sweet woman from church (she left a bank executive job to come home and was struggling with infertility herself) who called me every week, took me out to lunch often and was just a real friend. With social media we’re so connected in many ways but still so very disconnected. We need real life friends and interaction.
Noah’s Dad has compiled a great list of positive things you can say to someone who has received a Down Syndrome diagnosis (or really, any prenatal diagnosis).
In writing this I have to admit to being reminded of times that I’ve spoken thoughtlessly. I’m on the journey too.