Spontaneity

Dear Addie, One thing they don’t tell you in your ever so memorable delivery of your autism diagnosis - being spontaneous is not a chapter you will write on this journey. I miss the spontaneity. If I’m being honest so much of our life these days more than ever is making you happy so the rest of us can breathe a little easier. That might make me sound like a crappy mom, or maybe exactly the opposite of how this is supposed to go appeasing one party - but it’s the truth. Sometimes I feel my life has become a constant marathon of chasing the next thing that might make it easier on not only you but all of us. From therapy to food, medication, clothing, toys, fans, headphones, sensory equipment...it is exhausting. Now don’t get me wrong I know we are blessed and I would never claim otherwise. Being blessed doesn't mean we are super human free of feeling emotions and frustration from time to time. This week we were supposed to be participating in Surfing For Autism and when it got canceled due to COVID concerns we went ahead with our trip anyway thinking a change of scenery would be nice. On your mark, get set and off to the beach casa we go! Now Addie, vacationing with autism and sensory challenges can be for lack of a better way to put it, difficult. Our beach house is a replacement for anything else vacation wise right now. No airplanes, hotels, cruises, Caribbean destinations, camping (I’m not bent out of shape over not being able to sleep on the ground honestly) or Disney World trips are in our future - this is our OTOD vacation go to. Vacation predictability is our game and you’re the star player. There was a time not too long ago when I thought we'd never vacation anyway (aside from visiting family).  Sounds dramatic I know, but the hotel security drama we’ve experienced during your autistic meltdowns may have scarred me for life. There are about a thousand emotions that go along with an incident like that - embarrassment, sadness, anger, failure in parenting...the list goes on. I'll be the first to admit the beach is not a perfect situation, but a better one, because I've learned the words “autism” and “perfect situation“ aren’t generally found in the same sentence. Now I’m not totally out of touch with reality and am greatly aware the beach can equal a good amount of relaxation and fun no doubt, I mean who doesn’t love a little vitamin SEA to recharge their soul? Saltwater, sand in your toes, hair, bathing suit, and drink - it’s all great except maybe the sand in the bathing suit and drink, but I digress. When I think of our picture-perfect family beach trip coming together it’s wishful thinking to think of a picture with daddy and/or I sitting under an umbrella, sipping a cold adult beverage watching all of our precious sun-kissed babies freely splashing in the waves. Nope, not even close. It’s more of a checking the box of routine for you. You see Addie you love the beach. Fact. You also love routine even more. Putting them together, well sounds like perfection to you. When we decided this beach spot was going to be our go-to vacation getaway it all sounded kind of, well, easy. Like the pieces of the puzzle were going to fit together in a bit of normalcy for vacationing as a family. A quiet, kind place to work on public social skills. We thought. Fast forward to the present day and we have been here multiple times, usually succeeding in being able to adventure out to restaurants and such utilizing that all too important “exposure is key” advice, but not now, not during a pandemic. Your routine game is strong, that exposure is key social practicing has been benched and exhaustion for the rest of us is on an all-time high. Our lives consist of a beach, hose, hot tub, hose in the hot tub, park, ride in the car, beach. Doesn’t sound like something to complain about I’m sure, but it’s not all that simple. I’m jealous. I said it- jealous, of other families I see march their way through the hot sand to find the perfect spot to set up for the day. Our scene looks more like a WWF Wrestling match on hot burning sand with lots of staring eyes wondering I’m sure if we are harming you in some way by your blood-curdling screams trying to find our spot while you try to take off into the ocean like you’re part of an Ironman competition. The next hour or two is spent 100% of the time in the water. Water temp could be freezing cold or just right - no difference to you. Insert the purchase of wet suits not to obtain our family surfing aspirations but to keep our body temperature in check while you frolic about in temperatures sometimes so cold that it feels like needles on your skin. An influx of jellyfish - ha! Super fun! (Heavy dose of sarcasm there). You see this as mother nature’s built-in ocean game, scooping them up and tossing them about. (Note: jellyfish tossing is not behavior we condone). Time to leave? Let’s get ready to rummmmmmmble...WWF wrestling match round 2 only now your a 100+ lbs of slippery wetness and all the relaxed parents sipping beverages in their chairs (ha ha ha ha what the heck would we ever need chairs for?!) and staring once again.

I’m jealous of their sitting so causally. I’m jealous of families that seem to be effortlessly vacationing together. I can’t ever see a situation where another family (other than your grandparents who adore you - meltdowns and all) would join in on this, nor would I want them too. We get home and you move to the next event. Hot tub, hose, hose in the hot tub - cue your anger when I tell you no hose on the hot tub and a fair amount of screaming at me, foot-stomping, and time outs. Time for a change of clothes (in jammies of course), a quick snack and then park anyone? Not in the evening or early morning mind you, but when it feels like the playground was built on the sun rather. No shade, just strong rays of fiery heat melting your flesh off.

You see Addie autism can come with a routine that is more than just any old routine, it can come with an extreme level of rigidity. It’s not the same for all autistic individuals, but for you, that rigidity is present daily and very challenging to manage. Stepping out of routine can give you an unnerving feeling and in a moment when your sensory diet struggles during a global pandemic that’s the last feeling we would wish to add to how complex your emotions probably already feel. I’ve said it once and I’ll say it again, autism families don’t “vacation” like most, we just move our chaos to a different backdrop. This week has been a struggle for both of us. Routine is important and necessary but also trying to battle the reality and emotions of our life revolving around traits of autism that are confusing in a time like this and entirely consuming on our day to day function. My mama guilt is hard right now baby girl. My patience seems to be paper-thin and good lord I didn’t even know it could get any thinner. When you go to bed at night and I feel like I can finally take a breath and in this, I feel awful for feeling so relieved. I feel guilty that the attention Clara and Gabe get is often only after your asleep. I feel guilty that you can’t be spontaneous. I feel guilty for wanting something we used to have.

Addie there are always going to be parts of life we will grow to miss and this week I miss spontaneity. Nobody said this journey was going to be easy, but nobody also tells you exactly how it's gonna be either and your emotions can hit you like a ton of brick when you least expect it. No matter how stressed I might get or overwhelmed you might feel, remember we are all on this journey together, one team one dream and we will always be there for each other. Always.

We love you Addie.

Love,

Mom