Dear Addie,
And there I was picking up all the UNO cards you had tossed so carelessly about the backyard. Emotions were flooding through me faster than I could make sense of it all. I was so sad, tired, confused, feeling every ounce of defeated and angry, did I mention tired? I was fighting back tears, trying to find even just the smallest speck of calm which somehow seemed lost in the flurry of life we were in. It’s been a week (or two) Ad. Your mood has led us all down a path of walking on egg shells, barefoot at that, and it feels like we are being cut with every step. We aren’t navigating this phase of life well.
It’s been a week.
It’s spring break – did I mention that? We should’ve been at the beach with the rest of our family in our happy place, but that plan flew out the window, instead we made a choice to come home, you & I. It wasn’t an easy choice to make, but a necessary one. A lot of parenting autism is like that, always wondering if we have made the right choice with each hand we are dealt? We had to make a choice for the safety and well-being of our family and anyone else that may cross our unpredictable path and that meant we should leave. You needed to have as few people around you as possible and the comforts you know and love at your fingertips while navigating this new territory. With this decision made I had then arrived and left all within a handful of hours and now here I was gathering up playing cards that somehow feel just as heavy as picking up the pieces of our life.
Spring break? Spring “broken” was more like it.
We’ve entered a new phase of life, consisting of rage meltdowns.
AHHHHHHHHHHH…What is happening?! Where’s that darn parenting manual when I need it? Was there a chapter on this? I kid you not, I’ll go to summer school if someone could just explain this to me – and be specific. Help!
It was like one minute we could manage outburst of fight or flight or any sensory meltdowns and then there was this…
Strength, anger, & defiance we’d never seen before. 122lbs of unpredictable-ness. Any sort of coping we’d known just slipping through our fingers.
Back in the yard, the wind was picking up a bit, making my clean up a little more frantic. The last 3 cards I picked up were “draw 4” cards – all I could do was laugh (probably to save myself from crying really) thinking just how relatable this game felt to our life.
It’s true, sometimes this journey can feel every bit like an UNO game always trying to win, somehow outsmarting autism into a life of calm and less chaos, and up until the last few weeks I felt like we had this in the bag and were really close to yelling UNO! Headphones, masks, mood – so much was riding in our favor like I had it all figured enough to take a breath. But then the draw 4 cards started coming fast and furious.
Nooooooo.
But we were so close to winning? I know, silly mommy, winning – winning what exactly? What was my end game here? What identifies winning in our world? Heck what identifies participation trophy because I’d take that right about now?! These days our success really lies in not rocking your boat.
A fight in the grocery store. Resulting in a full-on tackle to the floor while Clara and Gabe put everything away in our cart. Draw Four.
An epic hour-long showdown of defiance about leaving the beach that even involved a passerby who just happened to be a special education teacher taking time away from her own family to try and help. Draw four.
Your wonderfully kind and patient siblings telling me to take a break while they took turns battling and keeping you safe from harm for a while outside. Draw four.
When the screaming and crying is so constant and loud that it all begins to feel numb. Draw four.
A series of meltdown - A green bell you couldn’t find, wanting the tv on at 4:17am but the remote wasn’t working, mommy accidentally stepping on a toy that made noise while I was changing your pee pee sheets from your loft bed for the 2nd time in 3 days. Draw four.
Bruised arms, scratched faces and broken furniture. Draw four.
Mommy waking up crying at 3am scared, worried, sadden for a future that’s so uncertain. Draw four.
With a very full hand of cards the ever so obvious question lingers - what’s happening? What could be causing all this? Oh man Addie, if I knew the answer to this - I’d have a bestselling - parent manual! But back to reality and I don’t have the answers so we start ruling out our go-to sensory issues – a toothache, UTI, fire ant bites, earache…the list goes on and none of these things gave us the closure, which only leaves me to think it’s a kryptonite spider bite or those dreaded invisible “hormones.” Sucks either way and it may just require us riding out this storm while we learn to find new coping in this stage of life you are in.
Addie - life isn’t always going to deal us a good hand, but even when the cards seem to be stacking up against us we’re still in the game Ad, we are still in the game. Don't forget that.
Deep breaths Addie, …and mommy will take some too.
I love you no matter how many draw fours we get in life.
Inhale, exhale.
Love,
Mom
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