Here we are, same journey just reading a new playbook.
With every new change it’s hard not to hold our breath while we sit just waiting to see, good or even bad, what will come of it. An all to familiar place for us.
Well, much to our delight Addie, we didn’t have to wait long! We saw noticeable changes this week with your anxiety and behavior moving in a very positive direction! Way sooner than we or anyone else had expected.
While I’m confident stimming, consistent movements and random sounds will always be part of your makeup, the anxiety we’d grown so accustom to was noticeably diminishing, leaving us all (including you) breathing a much needed sigh of relief.
With this new demeanor we thought no better time than now to jump into working through some sensory anxieties. And what better place to start than the common social outings of Sunday church, and perhaps lunch at a restaurant - we got this!
Here’s the thing Ad, there’s a laundry list of things I’ve learned from this journey, but one very important thing being that everything we do has an opportunity for growth and learning. There’s education all around!
With that in mind, it was time for our first outing of the day - church. We took headphones, a pull-up, but no bag of tricks for distraction. No snacks, no flash cards, no fidget spinners, nothing. I’d be lying if I said that even I had to take a deep breath for this one.
Today we were determined to begin working through sensory distresses (if they arose) and really focus on taking in your surroundings. Feeling less anxiety, our hope was for you to see this was a place of comfort and peace, not the house of sensory assaults your anxiety had lead you to believe.
We sat in the lobby, as we normally do and you stimmed, flapped, jumped as usual - only this time you also took notice and sat, stood and kneeled with the rest of us as well.
You only requested the potty three times (you're smart and knew this would require a walk and change of scenery), and still gave a solid attempt at splashing in the baptismal font on your way by during your Communion blessing. Avoiding the temptation of what looks like a pool in the middle of church is crazy tough!
For our first outing sans bag of tricks, this was a great success! Our next thought...let’s keep this momentum going!
After a quick trip to see dads new office downtown, we headed back uptown to our favorite local pizza place. A place we had been frequenting since you were in my tummy :).
It’s here that they know us well, kind of our own version of “Cheers” only it’s in Apex, not Boston and it’s a pizzeria not a bar, but you get the point.
Not wanting to push our luck to much, I put a few pink squares (strawberry starburst) in my pockets and grabbed a “white drink” or ice punch Gatorade (your favorite) to bring along.
We sat down and wasted no time in placing our order. With the day going so well we thought we’d try our luck once again and order you a drink with a straw. A straw? Luck? Sounds weird right?!? Well, using a straw isn’t exactly a concept you’d grasped up until now. In fact, we were just talking about adding it to your list of OT goals.
It didn’t take long before our whole table was pursing their lips, sucking up air, and trying to show you how to use a straw! One team, one dream - and we may have looked (& sounded) ridiculous.
Our ridiculousness paid off when you wrapped your lips around the straw and giggling and bouncing somehow sucked air in enough to get a little drink too. One up! You had a look on your face like “what just happened?!” We all cheered with excitement!
Pleased with your new found skill you went back in for a few more sips before abandoning it for the remainder of our lunch.
Even the simplest of new skills can be exciting, but exhausting all in the same breath.
With all of our excitement it was hard not to take notice of our table to which one 20 something year old and her family did. Only taking notice in not our excitement of your new found skill and our amazing day of progress, nope, but the fact you had slipped your shoes off and she made her disgust of such quite known.
It was then I was reminded that with all the education and advocacy out there, it will never reach everyone. They will never know how hard just going out to eat as a family is for us. How hard and long it has taken to get you to use a straw. How excited we were with this new skill.
My initial feelings were anger, then hurt and sadness, but then I remembered we just had an amazing day and I couldn’t let this judgmental person ruin this for our family. Nope.
Addie, we were so unbelievably proud of you this week. You are doing an amazing job! Keep it up!