I wanted to take today to speak about something a little bit more robust and controversial than my family's daily life/struggles.
This topic is one that every family, no matter what disability they are entangled with, has to handle, and that is the perception of disability in public. For the purposes of speaking towards only what I know and have experience with, I'll focus on Autism, but please don't feel as though other disabilities don't deal with this (or worse) as well.
As a parent, we have our challenges with our kids. Kids get tired, they get over-socialized, they get overstimulated, they get cranky, they act out. It's what they do. We've all seen the parent at the grocery store with the kid crying because Mom said no to buying 12 bags of goldfish. We've seen the dad who's kid is in a cart wearing their Cocomelon pajamas because it was not worth arguing with the toddler to put real clothes on (#pickyourbattles). We feel for those parents, because we've had those moments and we've dealt with them the same way. So we smile, make a comment about how cute they are in their PJs, and go on our merry way.
What about the mom who's child is curled up in the fetal position on the floor of the condiments aisle because you told them the ONLY ketchup brand they'll eat is sold out? Or the grandparent who is desperately trying to pull up Netflix on their phone because it is the only thing that will ground their Autistic grandchild and make the necessary grocery trip a semi-success? What about the dad who has to leave a full cart of groceries and carry their crying child out to the car, because an unexpectedly loud sound occurred, and the child couldn't handle it?
Those are the situations I deal with more often than not, and I'm sure any parent of an Autistic child can give you a list of scenarios over 2 km long.
I don't know about you, but a staple saying I always heard growing up was, "if you don't have anything nice to say, don't say anything at all." I was raised to NOT draw attention to individuals who were "different." We teach our kids nowadays to not loudly ask what's wrong with the person walking with a cane, or stare at the person with a birthmark on their face. We've taught our kids that we never know what another person is going through, and so we need to show everyone kindness and mind our own business.
We've had a few times where my curious younger toddler will ask someone in a wheelchair why they get to sit in a cool chair while grocery shopping. We quickly apologize and say "if you're comfortable sharing, he really would like to know." More often than not, that person is happy to explain how they lost their leg, or why they wear an eye patch, or will just make a joke about how they didn't each their vegetables and their arm fell off. Kindness and acceptance are a 2-way road.
So, why does a not-so-visible disability like Autism get overlooked? I had a scenario once where I had parked in the "family" parking spot at my local Zehrs. Not only did I have a toddler with me, but I'm also pregnant. Having to haul a 40 lb Autistic toddler having a behaviour from the grocery store is hard enough without adding in a baby bump, swollen feet and a cart full of groceries. So yep, I take advantage of the close parking space that is available for people like me. While loading our groceries, a woman drove behind my car, saw Nate having a behaviour in the cart while I was unloading groceries, and shook her head. I asked what her problem was... I wasn't blocking another parking spot, she didn't have any kids with her, etc... and she said that "if your retarded son can't behave, you should keep him at home."
Guys, my jaw dropped. Red hot anger filled my body. I was so mad, I was actually frozen in place. She drove away. Poor Nate is still sitting in the cart screaming, and I'm on the verge of tears. I had NEVER experienced such hatred, and especially not towards a child.
If you speak to other Autistic parents, you'll notice that we fall on 1 of 2 sides. Either, we loudly talk about our child's Autism and educate others whenever we can (hell, I could talk forever about it) OR we prefer to keep the diagnosis to ourselves. Personally, I love educating people about Autism. I will explain to kids at the playground WHY Nate doesn't answer their questions with words, or why he doesn't understand when they try to share a toy with him. I will explain to parents in the grocery store why he's having a behaviour, or why I let him munch on grapes in the cart. HOWEVER - I also fully support, understand and respect the parents who choose to keep Autism a private-affair in their family. I know a lot of parents of Autistic teenagers who don't disclose that information anymore, because their teenager wants to be "normal," or has asked them not to. If Nate gets older and asks me to stop, I will do so gladly (as in, telling his stories. I will forever advocate for inclusion of Autistic kids).
Regardless of where Autistic parents stand on their decision to disclose their child's disability - all kids should be taught to be kind, inclusive and understanding of each other. Nate is non-verbal Autistic, but the other silent kid in his daycamp group? Maybe he's just shy. Nate has slight aggression issues related to his diagnosis, but the other angry child at school? Maybe she's going through a hard time at home. Regardless of a diagnosis, disability, known or unknown - all kids should be taught to be patient and kind.
Autism services and awareness have come along way, even in just the past 5 years. There is still SO much work to be done. Parents, lean on each other. If you don't want to share your personal stories, trials and triumphs - lift up those who are in a similar boat as you who DO want to voice them. If you are feeling like your child is being overlooked in school, SAY something. Advocate for them. We all only have each other.
I will forever be in the corner, fighting from the sidelines, for all parents, grandparents, aunts, uncles, neighbours, colleagues who have been affected by Autism.
The next time we see someone struggling, keep an open mind. Maybe their toddler is pissed that they didn't get goldfish, or maybe their toddler is distraught that their favourite kind of ketchup is sold out. It doesn't matter. Be kind.
XO
The Spectrum Mom
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