Mother’s Day is kind of a misnomer, especially if you are the mom of a special needs child. The cards and presents last about 30 seconds, no one knows how to make pancakes, your “day off” is only until about 11:00 when you have to go downstairs and clean up the disaster in the kitchen and the rest of the day is spent with the same whining, crying and calling “Mommy, Mommy, Mommy” as any other day.
Not that I haven’t received some pretty cute homemade cards, ceramic ashtrays and flowerpots make out of styrofoam egg cartons, but as the mom of a 17-year-old on the spectrum, here is what I really want for Mother’s Day.
- A DAY WITHOUT REPETITION
Perseverative, repetitive sounds and behavior are commonplace in my home. My Asperger’s teen has been obsessed with trains for most of his life which, for the most part, involves watching train videos over and over and over again. While he is very proud of his YouTube channel (and he should be, it's great), I could lose my mind over the cha-cha-cha-cha … cha-cha-cha-cha … endlessly screeching throughout the day from his phone. And if it’s not trains, it’s “Angry Grandpa” videos filled with repetitive screaming, cursing and yelling. Or it’s a favorite movie such as “Back to the Future” or “Mrs. Doubtfire,” where he plays the same scene, same lines, over and over and over and over and over and over and … well you get the picture. Mind. Numbing.
- A DAY WITHOUT YELLING
My typically developing son, Evan, likes to tease me about a tagline I have on my website (I co-own a website of local special needs resources) that says, “Take a deep breath. Your help and hope start today.” Evan says that is “false advertising” because at home I am actually very stressed out and yell things like, “GET YOUR SHOES! GET DRESSED! WE HAVE FIVE MINUTES! WHAT ARE YOU THINKING? DO YOU THINK THE BUS WILL WAIT FOR YOU???”
I try not to yell, I really do, but when you ask your 17-year-old with autism to take out the trash and he replies, “Oh, it’s so windy. I don’t feel like it. You do it.” Or you tell him to get dressed and he is laying on his bed naked and the school bus is literally in front of your house and he says, “Relax, I am drying off. You need to be patient. Why is school so early anyway? If I were the principal I would have school start at 10:30.” I really think any reasonable, sane parent would totally lose their s***, right? Can someone back me up here?
- A DAY WITHOUT FEELING GUILTY
One of the great ironies of being the mom of a special needs child is we feel so guilty.
- Our child only eats chicken nuggets and pizza. (Why didn’t I teach him to eat healthy foods?)
- Our child runs around in circles in public. (Why didn’t I teach him to control his body?)
- Our child makes weird noises. (Why didn’t I teach him to not make inappropriate sounds?)
- Our child blurts out inappropriate conversation at inappropriate times e.g. “Do you think a dog would get along with a snake?” he said to the volunteer at the animal shelter when we were about to adopt a dog (O.M.G. we don’t have a snake…whyyyy would he say that??)
We act as if autism is something that can be controlled. Ever try to control a child in the middle of a tantrum when they are screaming and flailing? It’s impossible. That’s pretty much every day with a special needs child. So why should I feel guilty about that? I shouldn’t but I do.
- A DAY OF ACCEPTANCE
Having a child with special needs is very isolating. Well-meaning friends are happy to meet me for a drink but it’s another story when it comes to spending time with the kids. “Oh, it’s just adults this year. Don’t you think that’s more fun? I’m sure you could use a break!” or “It wouldn’t be fun for Jack, there aren’t any trains haha.”
What I really want is for you to spend time with him and not be patronizing.
What I really want is for you to listen to him and actually hear him and try to see the world from his point of view.
What I really want is for you to accept him exactly the way he is … just spend time with us, exactly as we are, and that … would be the best Mother’s Day ever.
Written by Leslie Crowe, Co-founder and CEO of NeedQuest.