When you’re the parent of a child who has just received some sort of sensory processing or autism diagnosis like yours, it's hard to imagine the depths of just exactly how it will affect your life. Even the simplest of things - grocery shopping, car washes, getting dressed, school pick-up, family trips to the zoo, all these things can seem very second nature too most, but for you (and for us) it is far from anything feeling natural.
Your autism diagnosis was handed to us with a black binder labeled “first 100 days kit.” I remember thinking (and kind of laughing to myself) “I only get 100 days to figure this out?! Then what?”
My worry and confusion must have shown on my face because we were then given that friendly and heartfelt advice of “exposure is key” – 3 little words that I hear over and over again in my head.
Let me back up and start with that advice, exposure. Seems simple enough, right?! The more you're exposed to a situation, the more comfortable it will feel. Makes sense. Here’s the thing, the part they leave out in this exposure philosophy is that it’s going to feel very unnatural. It’s like being in the middle of an alligator-infested lake, in a tiny boat, unable to swim, with no paddle. Good Luck!
It’s true Ad, the easier thing to do is to stay home, and some days that is just plain necessary. But other days the reality sets in that there’s five of us in this family, so secluding ourselves isn’t always possible or fair to you or any of us. We are all in this together. One team, one dream. We are here to live this life - not hide from it.
We have had our fair share of curious, sympathetic (or disapproving) stares, dinners cut short, movies left only after they’ve just begun, the list could go on - all while trying to gain that “exposure.” You start to question everything you’re doing as a parent because in these moments it’s just doesn’t seem like you’re doing anything right. This can’t possibly be the best way! You start wishing that just once someone would throw you a paddle to help you get to shore.
Well, maybe our wishes have been granted. With an increase in advocacy and more awareness of families like ours, some businesses are now offering us that paddle we’ve longed for.
Let me explain.
The paddle I speak of isn’t really a paddle Addie, but a concept rather known as “Sensory Friendly.”
Now sensory friendly events and opportunities are still a fairly new idea and are usually offered once a month where certain businesses will open their doors early (before the general public) or stay open after hours, to make a less chaotic environment for kiddos like yourself. Accommodations are often made such as leaving lights on and sound down in movies, or other things like offering social stories and headphones for places like museums and such.
Why are these things so important?
Well, you know how awesome your headphones have been at adjusting your auditory sensory input? Life changing right?! Well, that’s only one component of your sensory processing disorder.
You see Ad when you’re presented with a situation that might have bright, multi-colored, or flashing lights, variations of multiple sounds or music, constant movement, and/or a variety of smells it becomes challenging to filter through all of them at once. Everything is coming at you so fast and your sensory system feels like it’s just drowning. It’s similar to driving through a monsoon with the windshield wipers on high. Even with as fast as they are moving it’s not exactly providing you the ability to see very clearly. The rain is just coming too heavy and fast. Your heart starts racing, you may feel sick to your stomach, scared, a little out of control. You kind of just want to pull over and hide under an overpass to wait it out! In such a situation you can pull over, but unfortunately, we can’t pull over and wait out life.
When we can strip down a few of the sensory stressors (like wearing headphones to adjust sound) you can then see a situation at its bones. Taking it all in at a basic level. The more opportunities you have to do this, the better it will be at slowly introducing more sensory aspects back into it these types of experiences.
Now don’t get me wrong, sensory friendly doesn’t mean it’s free of all sensory stressors. But it does offer a safe environment to work through these challenges. A paddle in the lake, after all, doesn’t come without effort and work to get back to shore, but it’s easier than waiting on the wind.
Having said all that, we were recently blessed with yet another business who has decided to lend us a paddle - Chuck E Cheeses. Probably one of the most sensory stressing places around! They have arcade games that include all the fun of lights and sounds, kids running everywhere squealing with excitement, rides moving up and down, side to side, round and round, pizza, and a giant singing rodent and his band.
It has it ALL, but now they have added two sensory friendly hours the first Sunday of each month before opening to the general public! Whoohoo! Knowing sensory friendly events are kind of few and far between, we weren’t going to miss out on this opportunity! Chuck E Cheeses here we come!
Our dream team arrived, and I guess you could say the world was your oyster…that’s right Addie mark it, we were the only ones there! This didn’t last long but was kind of cool for a minute.
Not surprising you climbed to the highest point in the facility and peered down getting a good bird's eye view visually organizing your surroundings. A very sweet attendant asked if you’d like the ride turned on? She turned it on, and you were not a fan, quickly exiting. Moving on.
You walked around examining each game and ride front, back, and all around before settling into trying some things out. We discovered rather quickly A.) Skee-balls don’t bounce like basketballs & B.) You see it as more of an overhand arcade sport -so just thinking out loud here, maybe bowling isn’t in your future?
You practiced your race car driving skills, took in a prim and proper side saddle merry-go-round ride (very Mary Poppins of you), and Gabe even showed you how to play your favorite game arcade style - basketball…bring on the tickets piling up! Score!
So, Addie, we took another step in our sensory exposure journey, all with the help of an amazing business willing to lend us a paddle. We are beyond grateful for experiences like these and look forward to visiting them again real soon.
You’re doing great Ad!