April 3rd, 2013 by

Autism Awareness

It’s Autism Awareness Day. Facebook is covered with images and statements – “I love someone with autism!” “Light it up blue for autism!” “Autism is seeing the world differently!” As a mom with a kid somewhere on the spectrum, I should probably be jumping right in, but none of it feels like it really raises much awareness. We live in a time where, fortunately, you’d have to live under a rock to not know “autism.” Autism isn’t like a number of other conditions out there that are practically unknown. (CMV, anyone?) I’d venture to say it’s reached the same level that breast cancer has for awareness; everyone knows the name and knows we should raise awareness for it, but no one really knows how to help or what it’s like to live with until it affects one of their own.

So today, I’m going to open up a little about the truth of autism in our home. Autism is different for every person and every family, which is what makes it so hard to understand sometimes. In some families, autism shows itself in the form of strong obsessions or extreme disinterest, echoing everyone’s speech or not speaking at all, stim behaviors like spinning or hand flapping or biting or scratching or beating heads against the wall. We walk right down the middle – Danny is neither a high functioning Aspergers child nor a low functioning child with classic Autism. As in all things, he makes his own path.

For us, autism means spending a lot more time at home. Going out with Danny is hard. He wants very badly to be independent and a big kid, to walk and to explore. For Danny, though, exploring doesn’t mean going to the shelf right beside us and picking something up – it’s means running to the far end of the store and giggling as we chase him down. He does not want to stop, or slow, or look to see; if we go to a festival, he wants to be everywhere and yet does not want to pause anywhere. He has very little concept of “stay close,” he hates to hold hands, and he does not understand that if he takes off, he could get lost or hurt. I call him a free spirit, and while that brings to mind many positive things that are true, it also means that when I take him to my first Mom’s Club event in months, I have to keep a constant eye on him because he can and will just leave at any given moment; he will just slip out the door and be gone. Where most people take their kids to the zoo, the park, the indoor playground, I carefully calculate every trip for how likely he is to bolt, get over stimulated and melt down, or lose himself in the unallowed places (kitchens, back rooms, restrooms) because it’s too big for me to supervise him while still giving him freedom to play. I don’t stay home because I want to, necessarily – it’s just easier to.

For us, autism means accepting the unconventional. Mine is the child who, in a room full of kids playing games together, running and chasing and laughing and Simon-Saysing, is sitting in the corner with his back to the group playing a video game. For Danny, that’s his way of coping with a boisterous situation that is otherwise overwhelming him. Danny currently sleeps on a beanbag on the floor, 3 feet away from his untouched bed – but he sleeps (usually), and a lot of children with autism struggle with that, so we go with it. There are dozens of little tweaks on “typical” that we make and embrace because they help Danny deal with situations better. We alter situations, holidays, traditions, to help him fit in – walking him through an Easter Egg hunt to help him keep focused on what’s going on, bringing a belted booster seat to restaurants so he has help staying seated, keeping every door in the house locked so he doesn’t just leave at some point. We do some odd things, but we do what works to make it a little easier on us all and to give Danny a more comfortable, enjoyable environment.

For us, autism means constantly trying to strike a balance. We try to balance between his needs and our other kids’ – there are so many things Eric wants to do that just…wouldn’t work with Danny. Sometimes, we try to take him and just go for a shorter time; other times, we split up. Honestly, a lot of the time these days, Dad and Eric and going off to do the awesome fun kid stuff while I stay home with Danny and Andrew. Would we like to go sledding, or swimming, or any number of other things all as a family? Absolutely. But that isn’t really a viable option. In reality, we’d be forcing Danny to do something he really doesn’t care to do, and it would end in a fight – and in us having to cut it short, denying Eric the opportunity to fully enjoy it too. As much as autism impacts our life, it impacts Eric’s too, and will someday impact Andrew’s. We don’t want them living a life filled with “sorry, but your brother…” situations. Eric is wonderful about understanding when I explain that we can’t do something because of Danny, but I try to limit that as much as possible, because it just isn’t fair to him.

For us, autism means a melt down is always right around the corner. Danny can be happy one moment and all out crushed the next. Something as simple as an app on the iPod taking longer than normal to open can lead to screaming and crying. He can be walking through a store right beside us one moment and having to be dragged along, screaming in despair, the next. We can somewhat predict what will set him off – but not always, and what sets him off one day will be totally manageable the next…and then back to setting him off the day after that. His capacity for handling things changes quickly and frequently, and we don’t know what kind of day it’s going to be until it happens. He feels so much more strongly, it seems, and there is no filter on it.

For us, autism means changing diapers 5 years later because our son CAN use the toilet, he just doesn’t care if he’s sitting in pee and poop and sees no reason to interrupt what he’s doing…and no amount of bribery will convince him otherwise. It also, unfortunately, means often feeling judged – even when no one is judging – and feeling out of place in a group of parents because your child is obviously not like the others, and because you can’t SEE autism, no one knows why.

Autism is hard.

But autism is also pretty amazing.

For us, autism means having a just-turned-5 year old who delights in learning. He is still working on comprehension when it comes to stories, but he can read and understand a lot. He can sound out words, write them down, and follow written directions. He can add and subtract and is working on multiplication – and he gets SO happy and excited when we pull out the math flash cards. We need to find unique ways to teach, certainly, but he wants to learn and wants to please. He adores praise, hugs and high fives and cheering. While he has a large number of behaviors that are…less than wonderful…I don’t think most of them, maybe even any of them, are based on his wanting to disobey. I see a lot of his things are more about just wanting to play.

For us, autism means having a child who loves to laugh at jokes no one else understands. With Danny, I have learned to see the sheer delight in watching a bird fly, or a baby crawl, or snow melt flow down the street. He stops to splash in puddles with a huge smile, and his laughter is infectious as he sees bubbles floating through the air. Sometimes we don’t appreciate the jokes, like how he loves to shove Andrew around because Danny likes to play with us where we shove him and wrestle with him (so he does to Andrew what he likes us doing to him, thinking Andrew will enjoy it…), but when I remind myself to slow down, I have a lot of fun playing Danny’s games rather than just forcing him to do it the “normal” way. It may take us twice as long to walk from the front of the store to the back if we “stop” and “go” and “fast” and “slow” our way down the aisle, but Danny will smile and laugh and delight, and so will everyone who sees him.

For us, autism means being so amazed and proud and happy when our child speaks a sentence instead of just a few words strung together. It means finding joy and appreciation in things many parents take for granted. It means hugs where our son throws himself into our arms instead of wrapping his arms around us, kisses where he presents his forehead for us to kiss instead of laying his own lips on us. It means a twinkle of mischief in his eyes with a huge smile. It means seeing joy in your child, unfettered and pure – laughing and bouncing and clapping or flapping his hands as joy bubbles out of him over the smallest things.

That is my autism awareness.

So today, or any day, if you want to support Autism, certainly spread awareness online. But you can also support Autism Speaks or the US Autism and Asperger Assocation, or you can support your local special school district who work day in and day out to help our kids achieve their potential. If you know someone who has a child with autism, you can offer your support in the form of an understanding and accepting ear, or maybe take an hour of your time to watch their child while they relax, run errands in peace, etc. We are very lucky to have family and friends who “get it” and who love Danny for who he is – many families aren’t so lucky. You could share this post, or this article about the sides of autism people rarely talk about, or this video made by a girl with autism explaining autism, or the incredible story of Carly Fleischmann who has severe autism but learned, at 13, to talk and communicate and can explain what’s going on inside her head.

Blue lightbulbs and puzzle pictures on Facebook are wonderful and meaningful and show much appreciated love, but I want to take it up a notch.

(No, I have not abandoned the blog – however, I have a 1 year old who pitches a holy FIT if I spend more than 5 minutes on the computer…ever… I’ll get back into it eventually, I’m sure.)

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