Dear Addie,
And there you were rocking back and forth, calmly stimming, surrounded by a series of handpicked (by you of course) toys and snacks. A moment we’ve been waiting for and yet still kept a watchful eye on.
I know what you’re thinking - I rock and stim every day what was so special about it this time? We’ll allow me to explain because this was super special, but first I need to back up a bit.
You see Ad, for most of us growing up we had the experience of being involved in some sort of group activity. It could have been something like a sporting event like soccer or baseball, or some sort of school assembly or performance like a demonstration or play. Parenting for almost 16 years now we’ve had our fair share of events (with plenty more to come I’m sure) and with you being the youngest, you’ve been in that supportive crowd tag-along group probably the most of all our kiddos.
Now having said that, I can remember a few of those times quite well and not because things went smoothly... These memorable moments were well before any official diagnosis, where attending just about anything with other people lead to a loud measure of displeasure with you screaming and crying. At the time it never made sense, but looking back on it now Clara’s “Square Dancing” demonstration in NY and Gabe’s “Rodeo Day” in TX both stand out and took place in not so acoustic friendly environments like a gym or cafeteria resulting in two of your worst meltdown moments in history. If only we knew something about a hyper-sensitive auditory system or sensory processing disorder, then perhaps it could’ve all been different, but here we are.
Years of trial and error, education, therapy, let us not forget successful headphone usage and what’s been a welcomed chapter in our lives on the reprieve on behavioral outbursts under our belts - this weekend was anything but our old norm.
I think as parents we fall quickly into a realm of doing what we need to do to support our kids the best we can. For special needs families that scene often looks like a divide and conquer for many reasons, leaving one parent with a heavy dose of parental guilt and only getting the cliffs notes version of what the rest of the supportive party got to see. Unfortunately, the said player or performer often feels slighted (although never admitting it) to what was to be their special moment?
This weekend it was different.
It all started on Friday night when big brother Gabe had a dress rehearsal for an outdoor aerial showcase. My first instinct was to have you stay back with daddy but schedules didn’t welcome that option, so you were about to get your own personal dress rehearsal as part of the support team. Deep breaths.
If I’m being honest, I was worried for safety reasons in all this, not so much for Gabe because he’s used to the noises you make or unpredictable screams, but the others – could they drown out that type of distraction while already being so high up in the air concentrating on everything that’s involved in this sport? Let us not forget the music. Even a ride in the car results in an inevitable repetitive “Change please!” in a rather quick and heightened voice. Questions we truly wouldn’t know the answers to until we tried. Armed with an arsenal of things to accommodate any potential situation we were all in on giving this a fair chance. Let’s do this.
We found a spot far enough back that your noises wouldn’t carry too much, but still provided us a good view. One by one each student started to run through their piece. The first piece, great! The second piece, awesome! The third piece, this is going really well! The fourth piece, music starts, “change please, I need change please, change please…”
Houston, we have our first problem! After trying to calm you down a bit and a lack of reasoning that I couldn’t just change the music, you weren’t having it and started to get louder and more upset. Finding benefits to this venue being in a commons area of an outdoor mall, we stood up and took a walk around the building where we could no longer hear the music, but I could still see through the windows of where everyone was performing to know when that piece was over. Feeling equal parts happy we managed through that unscathed and anxiously exhausted of the unknown to come we returned back to our spot to continue watching the show.
At this point you became enthralled in your snacks and toys, remaining quite calm for the remainder of the performances including Gabe’s! There was no real way of knowing how the performance day was going to play out, so in case everything fell apart the following day I felt like I got to show my support in all this. One by one they all performed, and I’m not gonna lie, we left with an amount of confidence that this might actually work! Could all of us actually be the supportive team not just in our hearts but all together in the flesh?! Were we officially in a new chapter on this journey?
Performance day came and we were ready - headphones, snacks, fidget toys, fingers crossed, prayers said - let’s do this! We set up shop like the previous day and having had a dry run on this supportive team gig, we knew our pitfalls with song number four.
The show began and with more people than the day before I noticed more repetitive noises, and felt a little pit in my stomach, but no one seemed to be bothered. We took our short walk when it was time and headed back to the blanket where you started in on our packed snacks. Not too long after our return it was time for Gabe to perform and I stood up next to you making sure my leg was still touching yours to give me a better sense if you were about to make a run for it while I was watching him. Much to my surprise, you started rocking back and forth as if to enjoy the music and stim feverishly in a delightful way, even saying Gabe’s name a few times as he walked up to take his starting position. We were all in the same place, supporting our dream team together – a new chapter in our lives.
There you sat rocking back and forth, calmly stimming and no one needed the cliffs notes.
Great job sweet girl…and brother Gabe 😉
Love,
Mom
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