When I was pregnant, my doctor told me, “Janis, there’s no one perfect way to parent. Don’t read the books. Don’t follow the online groups. Don’t ask your friends. Follow one thing, and one thing only: your gut. Mom’s have the strongest intuition there is. Trust it.” That was the best piece of parenting advice I have ever received, and what I rely on to this day.
Since becoming a parent, I’m amazed at how much unsolicited advice is offered up. But when you become the parent of a child with special needs, the advice, questions, and comments become even more absurd, ignorant, and completely asinine. Listen, I get it. No one goes into parenting studying up on brain disorders. Pre-Kellan, when someone mentioned Autism, I immediately referred to Rain Man. That’s all I knew about it, and, at the time, all I needed to. So yes, I too was ignorant before I became Kellan’s mom. Even now, I don’t consider myself an expert on Autism, by any stretch of the imagination, but I am an authority on my son, and even he switches it up sometimes, testing me and making sure I am paying attention. Like I mentioned in one of my first blogs, he IS and will always be my greatest professor.
I have spent countless hours schooling people on my son’s Autism. Why? Because that’s the gig a parent gets when a society is unaware, unaccepting, and uneducated on this disorder. I have had to school my family, friends, co-workers, retail employees, waiters at restaurants, parents/kids at the park, doctors, emergency room staff, police officers, hair stylists, lifeguards, and complete strangers. I am a walking, talking handbook on Autism (at least my son’s Autism – because when you met one person with Autism, you literally have met one person with Autism). More often than not, I have to educate people as to why my son IS doing something or why he ISN’T doing something. Early on, I used to start with ‘My son has autism’. But I soon realized, whereas Kellan is autistic, he’s NOT a disorder or diagnosis. He’s so much more than that.
I have little patience for ignorance as it is, but I have gotten better at giving people the benefit of the doubt because, again, understanding comes with education. So, I educate. A lot. It really is for the good of everyone, the people curiously uninformed or just plain ignorant and the parents on the receiving end. For the one thing a civilian never wants to do is piss off a special needs parent. We’re wound tight, short on sleep, experience anxiety and lack patience for anyone else but our kid(s). This instruction is a gift for both parties.
#1: “He/she doesn’t look autistic”
I think it’s the one comment most parents with autistic children hear the most. If I had a dollar for everyone that has said this to me about Kellan, in front of Kellan, nonetheless, I would be rich, y’all.
Seriously guys? Can I ask: what the fu%k does Autism look like? Even I, pre-Kellan, in my most ignorant state, never associated a look with Autism. It’s insulting to all people with autism and their parents because it suggests that all children with autism can be identified by presumably defective physical traits making them “inferior” to their neurotypical counterparts in yet another way. The only common physical trait Autism reveals is extraordinary cuteness. Let’s move on.
#2: “My kid does that too”
No, no they don’t. Stop. Please, for the love of all that is good and decent, stop comparing your neuro-typical kid to ours. I know you’re just trying to make us feel better or ‘normal,’ but inside we secretly want to punch you in your oblivious face. You have picky eaters, we have kids with severe sensory disorders. Your kid doesn’t wear certain clothes because they’re most likely spoiled (and own you). Our kids have an adverse reaction to snaps, buttons, tags, appliques, ties, etc. because, again, sensory issues. Your kid hates haircuts because they’d rather be outside playing or like their hair long. Our kids face a truly frightening experience. Autistics usually have heightened senses, so when getting a haircut, they hear the mind-numbing screech of the sheers penetrating their hair. Each piece of hair that falls on their exposed skin feels like shards of sharp-cutting glass. And I doubt as a parent (with a neuro-typical child), you have to study up on the latest wrestling holds to restrict your kid from getting his ear cut off and the stylist from getting slapped or kicked in the gut (or somewhere far worse). Or, my most favorite, “my kid doesn’t socialize much either, they like to play alone, too.” Um, yeah…it’s a tad different. Ya see, our kids lack the social abilities/development to even play alone. For instance, Kellan has owned every toy on the market, and I or a therapist has had to teach him how to play with them all (Legos, playdoh, board games, you name it). Most humans are born with the innate ability to play. We don’t need to be taught, it just comes naturally, with development. Our kids need to be taught the very basics and still do not have an interest. And because of their lack of play, they don’t have many friends, if any at all. We know you’re trying to normalize our situation, but again…annoying, and unnecessary.
#3: “Have you tried___________” (fill in the blank)
YES, yes, we have tried EVERYTHING under the f-in sun to help our children. Every product on the market, every doctor, every therapy, every technique, every specialist, every app, every exercise…E.V.E.R.Y. T.H.I.N.G!
My Kellan is a really poor eater. He has two actual foods and four specific snacks he eats daily. He has consumed the same breakfast, the same lunch, and the same dinner for 242 days straight. He does not eat vegetables or fruit. Occasionally he will have a piece of orange or apple or a carrot stick but getting greens into him has been a 6-year struggle. There really is nothing one can suggest that I haven’t tried when it comes to veggies/fruits/everything. Oh, but they try. My word how they try. Again, I know they’re just trying to be helpful, I do, but at this point, I just pick and choose my battles. With that said, unless you’re a parent of a child with special needs or work directly with special needs’ children, there is NOTHING you can tell me/us to try that we haven’t already. Onward.
#4: “I’m sorry”
If you take any of these ‘things not to say’ seriously, it’s this one. There is nothing to be sorry about. NOTHING. I repeat, NOTHING. It’s the most insulting response you can ever utter to a parent of a child with special needs. When someone dies, you say you’re sorry. When you bump into someone by accident, you say you’re sorry. Please don’t say you’re sorry when you hear my son has autism. My kid and many other children with special needs are as happy and healthy as yours. So please don’t be sorry, because I’m not.
#5: “God only gives you what you can handle”
Or another way I have heard it said, “God only gives special needs children to special people”. First, please don’t “God” me. I have a bone to pick with God (more on that in another blog).
Secondly, I don’t consider myself ‘special’. I believe any mother in the same situation would do the exact same thing I do. That doesn’t make you special, it makes you a devoted, responsible mother. Your ability to get through difficult times is truly marked by how you manage adversity. I’ve always believed that I will never allow myself to be defeated by any of the obstacles life presents me. My view has always been to use all these obstacles as a way to learn and improve myself as a human and as a mother.
And you know what? There are some days where I do feel I have been given more than I can handle. Do I turn to God? No. I look in the mirror and tell myself that tomorrow is another day to try again. I give myself grace not because “I am special” or “I can handle it” – but because I am a human-freaking-being.
And there you have it folks, a short lesson in what NOT to say to parents with special needs children. You’ve been schooled.