I have been wanting to write this post for a while, put down in words what a typical outing is like with Nicholas. It just never happens because it never seems quite right. And then I saw this video. So let me start with our experience.
This is what a typical trip to the grocery store looks like:
We walk in, the flower display is on the immediate right. Yes, Nicholas, those are very pretty flowers. No, we cannot buy any flowers. Please let go of the flowers. I walk away in hopes that he will follow. Come on, Nicholas, stay with me. He runs to the berries. You can have one kind of berry. You want raspberries? But look, there aren't any raspberries. You can have blueberries, strawberries, or black berries. Are you sure you don't want any? I grab blueberries anyway, he'll ask for them as soon as we're home. Nicholas, please stop spinning. Stay close to the cart. No running Nicholas, please stay close. Can you help me? Get some cheese for me, the one in the purple bag. The purple bag, Nicholas. Close the door nicely. Nicely... Nicholas, please don't slam any doors! Come one Nicholas, lets go get milk. Stop spinning, please stop spinning. Watch where you're going, Nicholas. Please look in the same direction your body is moving. Keep your hands to yourself, you're going to knock something over. Please stop spinning. Nicholas, no running! No we're not getting cake today. Because we have some at home. No running! Stay next to the cart, here hold the box of sandwich bags. Oh good, peace, we're almost done. Nicholas, please don't open that. Here, can you put it in the cart? Thank you for helping! Please stop spinning. Look! You hit someone! Can you apologise for hitting them? See, this is why I say no spinning. Keep up Nicholas....
This isn't exclusive to the grocery store, it's just where we go most often. I get this kind of behaviour most places we go.
Anyway, this showed up on my facebook newsfeed. It's from ABC's "What Would You Do?" and it's about Autism.
I couldn't watch it the whole way through in one sitting. I teared up and got up and had to take some air calm myself. Twice. I'm glad people like that exist, that are willing to stand up to a jerk and for this family. This is very much Nicholas but so unlike him at the same time. See, unlike the actor, Nicholas appears to be completely normal. He doesn't do the swaying and has some ok table manners and definitely doesn't get up at a restaurant. He is high functioning enough to not do these very typical things. But he does fidget and he does get a bit loud sometimes and he does knock over glasses and he does repeat things sometimes. And we get more looks like the instigator/actor than we do of the sympathising patrons. Not just at restaurants but places like the grocery store.
I hate going to the grocery store. HATE it. And the main reason is Nicholas. Because while his behaviour is only mildly annoying and inconvenient to me, I'm so used to it now, it is much more than that to the others there. I see their looks at my misbehaving child and their rolling of eyes when he spontaneously takes off. And it's so frustrating not because they are judging but because I don't know what to do. When he was a toddler he'd throw tantrums at stores and I'd hold him and talk to him and I didn't care about the judging eyes because I knew doing that for him would lead to him learning to cope with not getting what he wants. And it worked and we don't have tantrums over not getting what he wants about 99% of the time. But now, with this behaviour, I don't know what to do. And me just telling him over and over again isn't solving anything. And he isn't autistic enough for people to be understanding. He just looks like a wild child. And being alone with him, seeming like a single mom with no dad in the picture so what can you really expect, doesn't help.
And he's really not bad. But bright lights and lots of colours everywhere lead to a sensory overload, because he has a sensory disorder and those things affect him. So he starts acting out his overload in spinning and running and touching. And the more busy it is the more over stimulated he gets so he acts in these manners more and of course there are more people to watch and give us those disapproving looks. He isn't autistic enough to be recognised as having something wrong with him and forgiven for his less than perfect behaviour.
No pat in the back for me for having my autistic child not go bat-shit crazy over not getting cake. No good job momma for me for having my autistic child able to exert some self control and not knock over everything on every shelf. And I wish I had the guts to have a huge puzzle piece ribbon to stick on his shirt with a tag that says in big bold letters:
I'M SORRY I'M MALFUNCTIONING, I'M AUTISTIC AND THIS PLACE IS FREAKING ME OUT!!
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