(and the uncensored responses parents wish they could say)
By Jean Perry
People really do mean well when they say to me, “You’re so … fill in the blank (amazing, strong, patient, loving)” about me as a mother. True, as a mother of a child with autism and a host of other minor conditions, there are a few other things that I might have to do and experience than a parent of a typically developing child. But I’m no magician. I’m not a super woman. I haven’t the patience of a saint. And all mothers ‘love’ their children.
It isn’t that I don’t appreciate when someone gives me a compliment. But as any other imperfect person doing this parenting thing, I’m doing what I’m supposed to be doing for my child, right? “Jean, you’re an amazing mom.” I mean, if I looked at you while you shuttled one boy every night to hockey practice, while taxi-driving your daughter to ballet class, while whisking your toddler to the library for story time and then home to do laundry for three kids and cook and keep them alive, I might be like, “That’s insane!” But good for you!
There are some things we parents of an autistic child hear all the time and, admittedly, we sometimes get kind of tired of hearing. Questions we get tired of answering; comments that appear benign to the asker but make us shake our heads, dumbfounded. Feeling hurt. Wanting to say what’s really on our minds.
One of those is, “I don’t know how you do it.” (Big side eye look here). I might say something like, “Yeah, well, you know … we do what we’ve got to do in life…” but it’s through a cringing face, a grimacing mouth, because I still have not figured out a polite, yet assertive, way to express, “What, you mean, how could I possibly love my child with a disability? Care for him? Wait one full minute for him to button one button? Change diapers until age six? Why don’t I just hand him over to someone else to raise him because it’s something too burdensome for a mother to bear?”
I see it, too. I might be a little hypersensitive, overly defensive. Maybe just reading a little too much into what people say. But then someone asks me, “What do you think caused it?” (Eye roll).
Really, I have no idea what caused my son’s autism. But don’t think for a second that I didn’t spend the first three years of this ride wondering what cheese I might have eaten during pregnancy, what medication I might have swallowed, whether I didn’t get enough sunlight, or if my “healthy” bacteria versus “unhealthy” bacteria balance was off, and an avalanche of other possible things I might have done to cause my son to be autistic. Frankly, I don’t care what ‘caused’ it anymore.
And then there’s the “Oh, he’s not that bad.” Dude, I said he is autistic, I didn’t say he was bad. There isn’t anything bad about being autistic. He’s different, not bad. Jeez. It’s similar to the “Is he getting better?” question. Better? Better than what? Do you mean has he learned any new words, tried any new foods, learned to dress himself yet, stopped driving us all mad with incessant train noises, started acting more … normal?
As an autism parent, I am not exaggerating when I say that I, like any other autism parent, am constantly on my knees crawling through the autism trenches protecting my child and battling for him to help him find his rightful place in this world. I read everything autism. My social media feeds are crammed with autism-related pages, stories, blogs… My every day is autism information, 24-7. So when someone asks me, “Have you heard … blah blah blah … about autism?” Yeah. I heard. Like two years ago. And since then they’ve discovered that it’s not true. Thanks anyway.
Oh, yeah, and just because my son has autism, it doesn’t give him the right to get away with a whole bunch of stuff any typical kid wouldn’t get away with, either. “Oh, it’s OK. He can do that, it’s fine.” Um, my kid just ran his gross dirty finger across the top of your birthday cake. It is not OK. He needs to learn how to behave, how to act politely. He needs to know that sticking his finger, dirty or clean, across the frosting of someone else’s cake is NOT OK. Tell him, “NO! That is not OK!” Say, now you get no cake because I warned you three times to keep your hands off it! Feel free to discipline my child, because, while you’re not looking, you know I’m disciplining yours.
But there’s one big one that gets me every time. When I tell someone I have a child with autism and his or her response is, “I’m sorry.”
You’re … sorry? Why, did you invent autism? Did you sneak into my house, twirl your evil mustache, and cast a spell over my womb to give my child autism? You’re sorry, why, because I didn’t ‘deserve’ a child with a disability? Is autism a mistake nature made and you’re apologizing on behalf of it? Are you pitying me? Feeling sorry for me? Perhaps it is I who should feel sorry for you for not knowing, not understanding, not seeing the beauty in autism, the beauty in the individual that is my son.
I know. Harsh. Which is why I never say anything rude in response to any of this. Remember, these are uncensored responses. We all have our weak points and when somebody throws certain words at it, it hits you right in the soft spot. This is mine. My son is my soft spot. My sacred, sweet, soft spot.
“You’re so … fill in the blank (amazing, strong, loving).”
No I’m not. But he is. My son is the amazing, strong, and loving one. And if I am any of those things – amazing, strong, and loving – it’s because he makes me that way. He makes it so easy to be a good mother to him.
Please, don’t let all this inhibit you from saying anything to us at all! Most of the time we autism parents have some of the most developed senses of humor! If you want to ask questions about autism, we will always answer politely and to the best of our ability because we want you to understand what autism is, how it affects lives, and that as individuals there is a place for everyone in this world.
Having just said all that, if you ever want to say something nice to an autism parent, you could try something like, “You have a great kid” or “I can see why you’re so proud of him.” And if that doesn’t work, just ask if we want another refill on that glass of wine. I promise you that question will never get old.