Dear Addie,
This past week I found myself standing in the entry of a museum. I was unexpectedly crying after a sensory-friendly night they had just so graciously hosted.
I know it sounds like it was a complete disaster, but it wasn’t, I promise! In fact, it was exactly the opposite.
Allow me to explain.
I wrote to you a few months back about how important these sensory-friendly events were to our family. When you’re handed a diagnosis and told “exposure is key”, but quickly realize that exposure feels like being stranded in the middle of a lake unable to swim and without a paddle - these events are our paddle.
While they are still a fairly new concept and only pop up a few times a month, we do our very best to make it to as many of them as possible. They give us a healthy dose of that all to important exposure.
So, hoping for the best, I packed our bag with what could’ve supplied a week-long adventure away from home and headed out for a 45 min drive to have some family fun at the Life and Science Museum in Durham.
Sensory friendly fun, here we come!
All was good until about 15 minutes into the drive when you realized you didn’t recognize your surroundings. In your mind this was “a worst-case scenario” – unknown travel destination! Clearly, we must be off to a doctor visit… cue anxiety and fear setting in.
You see Ad, you have an impressive photographic memory for navigation when driving in the car. You always know where we are going by the sights of what’s around you. You even get panicked if I tell you we are going to Target, and then take a different route. Every new adventure generally starts this way, but once you’ve learned the outcome of where we end up, a repeat trip is usually OK- that is unless it’s a doctor. That's never OK. This all goes back to your love and need for structure, routine, and predictability.
Stressed with this unfamiliar adventure, crawling our way through construction traffic and detours, you cried for the next 30 minutes. Clara, Gabe and I all took turns trying to calm you down by telling you where we were going and what fun things we were going to see!
It’s safe to say, you didn’t believe us.
Once we finally arrived, you were straight-up sobbing. Much to your dismay, we managed to get you inside to the ticket desk where (being surrounded by other special needs families) nobody thought anything of the scene we were creating. Now don't misinterpret that as special needs families are insensitive, but at a quick glance it was familiar territory to each of them. Had this been a packed museum, we would’ve been just another exhibit for people to see or judge – I’ve seen the judgmental head shake more times than I can count during these anxiety induced meltdowns.
The nice attendants at the ticket desk went straight to work attempting to engage and providing you with a variety of sensory toys to help calm you down. All these gestures were in the hopes of reassuring you that this was indeed a place of fun, not fear.
With tickets purchased and making our way past the front desk, and you suddenly realized where we were -this was not a doctor’s office! Yay! You'd been here before for an event during Autism Awareness Day! This WAS a place of fun and with such a large space and minimal people, it felt like we had almost the whole place to ourselves!
With all this new-found excitement (not being at a doctor’s office), we needed to make one quick stop before we could begin - potty time! If there's anything we know in potty training, distraction = accidents! After you were all through -hands washed and dried, you took it upon yourself to wipe the tears from your flushed red cheeks. Not gonna lie Ad, something about watching you dry your tears from your face choked me up a bit (I’m an emotional person, but with puppy sleep deprivation it probably cranked it up a notch).
With your mood now having done a 180 you were full of excitement, and happily stimming ready to explore the museum!
Here we go!
Now Addie, with most of these sensory events happening either before or after business hours, our first surprise for the evening was just arriving – it was daddy! That’s right Ad, he drove from across town straight from work to join us in this special event! OTOD!
Now we were ready to go!
We saw how clouds were formed, animals lived, and music was made.
We played in a sensory table filled with beads - warning: type A, OCD personalities steer clear from this! Beads were everywhere!
We stacked blocks, read books, and you even brushed an alligators teeth - that was my favorite :).
Clara and Gabe even had the opportunity to take in a saltwater exhibit and do some pretty cool experiments.
We finished off the night with some outdoor fun in the music garden (your music therapist Miss Emily would’ve been so proud of your drum beats!), climbing on play equipment and burying yourself in the sand.
With our sensory-friendly museum adventure ending, I was asked to take a survey about our experience. Of course, I graciously obliged and gave the best score possible for every question without hesitation. This nice woman then went on to inform me about how there is no funding for these programs. She then asked me what I would say to someone who was considering funding such an event.
Rather unexpectedly my emotions got the best of me, and my eyes instantly filled with tears. I wasn’t prepared for such a question. Why was this so important to us? Why was I so emotional about this? You see Ad, we could’ve driven 45 min and never made it in the door. It could've easily been a scene of wasted time, anxiety, failure and disappointment. We could’ve been stranded in that boat…but we weren’t. On nights like this, we are handed a paddle to navigate the waters of exposure.
When it was all said and done, everyone had a great time and I got to hear “that was awesome mom!” as Clara and Gabe talked nonstop about their favorite parts of the museum and their new-found knowledge of salt conducting electricity the whole way home. We all had fun and they learned something new - score!
I know a trip to the museum doesn't measure a level of success as a parent, but tonight I kind of felt like “mom of the year” to all of you. I know silly right?! Nobody wants to need special accommodations to do what seems so easy to most, but because of this, we were able to experience all the fun and perhaps are one step closer to integrating into the hustle and bustle of the museum with the general public.
I guess to answer her question, I'm not 100% sure I could really convey just how much these events mean to us, but we are beyond grateful for all the dedication and support these experiences offer families like ours.
So Addie, while we both may have shed some tears, we did it!
One team, one dream. And we all had fun.
Love,
Mom
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