So often on this journey, we hear about time. It’s a funny thing - time that is. In our lives, it can be seen in two very distinct ways: your minds greatest enemy and your hearts greatest cheerleader.
You see Addie we have days where autism is just plain hard. There is no other way to describe it. Communication can be a real struggle and lead to some epic meltdowns and a feeling of helplessness on my part. It’s in these moments where my mind wonders if we’ll see these times repeat themselves in the future. Will I always feel this helpless?
I’ll admit I’ve been caught up in the comparison time game as well. You tell yourself not to, but it’s unfortunately natural - and parents of neurotypical kids do it too. We’ll meet someone autistic who is a bit older than you. They’ll introduce themselves, and perhaps even engage and carry on a light conversation. The excitement starts (I’ll somehow erase from my mind that this is a “spectrum” disorder) and I’ll think – is this a glimpse of what’s to come for us? That’d be amazing! That time will come and go and you’ll look and act nothing like that individual I compared you to. I’ll feel angry that I even did such a thing, because I adore you just the way you are, but can’t help but feel anxious about the future.
Our lives are pretty constant in celebrating and taking pride in the smallest of accomplishments (most of which take an insane amount of hard work and dedication after all.) Sprinkle that with our challenges -some expected, some not and that’s our life. While we appreciate and savor these mini milestones, maybe more than most – like using a porta potty for the first time (equally disgusting and proud moment during potty training), it’s the time we can look back on and measure how far we’ve come that are the greatest cheerleader in our hearts.
Allow me to explain…
We have a very active family-oriented neighborhood. Every year they hold a spring festival at our clubhouse. It’s amazing! Blow up bounce houses, face painting, hula hoop contests, food trucks, ice cream, drinks, and kids running about. All our neighborhood friends are there, and there’s no shortage of friendly conversation. Truly a lovely day for everyone. That is unless you were the version of you last year.
You see Ad, last year we never made it passed the cart path. We sat next to the tall grasses on the path, looking on at the festivities. The hustle and bustle of everything was just too overwhelming and the food trucks were far too loud for your comfort level. Add in your fear of golf carts – yes, golf carts, and the whole scene was a sensory nightmare for you. Sitting about 10 minutes on the path, I decided I wasn’t exactly interested in seeing what creatures lived within those grasses and we retreated home.
It’s in these times watching families laugh and enjoy each other’s company while we struggle that we feel the most isolated and trapped in a dark place of this lifelong disorder.
Fast forward to present day. Same festival, a year later.
If there’s one thing you should know about Menzo’s Addie is, we don’t give up!
We were ready, let’s do this and get past the tall grasses this year!
Festival round 2!
Headphones on, a backpack of tricks (sensory toys, snacks & extra clothes), OTOD together – check, check & check!
Seeing there was no shortage of attendees this year it started with a mile walk through the parking lot! OK, that may be an exaggeration, but it was far.
First sight on the scene were the bounce houses, usually a fav of yours, but this time it was paired with a lengthy line to wait in which is far from your cup of tea. So, after a small tantrum of not being able to just bust in when you please, we moved to the back of the venue to the food trucks.
Mark it Ad, we were well past the tall grasses now!
Waiting in line for the food trucks caused a mini-meltdown, but after we backed up from the congestion of too many people and had some air you recovered nicely.
We found our way up to the patio where our friends had secured some perfect seats that gave an amazing view of the whole event. If there’s one thing we know about you is, you love nothing more than a view in which you can take in and organize your surroundings. When you can see the big picture a little clearer it’s less overwhelming. Hence your love for climbing to high places to get your bird's eye view!
Happy with our spot you sat and enjoyed some snacks while playing with your toys. Clara and Gabe freely ran about, doing what they should be doing – having fun, while mommy and daddy enjoyed some adult conversation with our neighbors and friends. A far cry from hiding on the cart path.
As we sat, I thought “wow look at what a difference a year made!” We could’ve got lost in the isolation, it’s incredibly easy to do, but instead, even when times were challenging for you (and sometimes everyone involved), we pushed forward and gave you the exposure you (and all of us) so desperately needed, starting with our very own neighborhood. We tried to go up there as often as possible in hopes of making it a comfortable familiar setting for you.
We were no longer those people sitting in the tall grasses, nope, our friends and neighbors new and old were engaging with not only mommy and daddy but with YOU. I watched as each one of them greeted YOU, and asked YOU questions. They were not talking through us, but directly to YOU. You were treated as you should be - as your own person. I heard you say “hi” too many of them all while winning them over one stim and smile at a time. You have a magical way of stealing hearts Addie ;)
So, my dear, let us try not to focus on the time ahead that leaves us feeling paralyzed by the fear of the unknown, but let us live in the present. When we have those difficult moments we have to remember that this time shall pass, and look at the time that has past and just how far we’ve come.
Last year it was ten minutes, this year we watched the food trucks pack up and roll out leaving a fun place to run and play for the few remaining families.
I know we have our difficult days, it comes with the territory, but we’ve come amazingly far and I hope you always know how proud I am of you.
Sometimes we just need time.