Dear Addie,
Patience. Something special needs parents are told they have a lot of, and by definition it pretty much sounds like superhero strength! I mean, of all the things I thought I’d be in life “superhero” never actually made the cut. Primatologist, business owner, dance teacher, yep no sign of superhero on that list.
Ah yes, patience, the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.
Wait a minute, hold the phone! You mean to tell me the same teenaged girl (that’s me Ad) who bought new bedding for her room and then in the same day decided she needed to paint her room, but thought moving the furniture would delay the process of getting it done in one day, so she painted around her furniture somehow wears a cape of superhero patience now? That’s funny and if in some farfetched land that is true, does this cape come UPS or FedEx, because it hasn’t arrived, and I need to file a complaint!
But seriously Addie, it doesn’t really work that way. Some may disagree in an effort to make me feel better about our chaos and our life’s journey, but God didn’t feel I had an abundance of patience in back stock so he made me a special needs parent – I’m still the same teenaged girl at heart that wants to paint around the furniture. I’m human.
We aren’t born with patience; it’s learned and takes a lot of practice. And if there’s one thing, I am 100% certain of in life is that we never stop learning.
This week I felt tested and almost defeated in my patience, dare I say riding the edge of a nervous breakdown. I know sounds dramatic, but I promise it felt every ounce of true.
You see Ad it’s summer and we are all on a break from schedules, the door is wide open for fun summer outings. Now having just come back from a trip to Michigan to visit family (which holds its own stresses in traveling and vacationing with autism), we were back to reregulating ourselves into our environment and restoring our calm. I’m sure there are plenty of people out there that can relate to the “I need a vacation from my vacation” sentiment, and that’s where we were at this week.
In this house we try to keep it simple, and on this day, I decided we would go out to get lunch and chocolate shakes, not at a restaurant (let’s not get crazy here), but drive thru rather, remember we were teetering on restoring our calm around here, but sounds fun right? You had recently mastered the art of drinking from a straw, so this was supposed to be super fun, or at least that was the plan in my head. Mom of the year fun right here folks! Let’s do this and hit the drive thru! I know what you are thinking – I really know how to have a good time 😉…
Now like so much in our life, even the drive thru can present some challenges for our family. You have an extreme hypersensitive auditory system and big sister Clara has Tourette’s. No big deal right, we all have our things, but in this situation while there is so much love between the two of you, your extras you both have are like oil and water. Like clockwork Clara makes a humming sound and you scream. Like really scream and yes all while wearing headphones. Inevitably it all happens as soon as the radio is turned off, the window rolled down and the person on the other end is welcoming us to their establishment and requesting our order. We have to repeat our order A LOT and bless it if it’s Chick Fil A because they get a front row seat with their super-efficient drive thru clerks and their face-to-face ordering. We’ve been known to startle a few in our time.
On this day we decided Chick Fil A was a good idea because the shake you mastered in the car on our most recent road trip was from there, and they are usually pretty fast. Sounded like a win win. Right?! Well never one to disappointment, our drive thru clerk got a firsthand experience of a few good squeals from you before ushering us through the line. True to their efficiency, it took no time to get our food, and while pulling out of the parking lot you were asking for the chocolate shake that we had promised. Clara handed it to you and you pushed it back, repeating “A chocolate shake please!” The next few minutes were a back and forth of us reassuring you that this was in fact the same shake as before. You didn’t believe us and all I saw was my car was about to be destroyed by chocolate shake with one squeeze of that Styrofoam cup the more upset you got. Our fast-food experience ended up parking in the local grocery store parking lot and resulted in me trying to reason with you that you would in fact like this special treat that you have already had! Mark it… another parenting moment I never thought I’d have raising my voice almost pleading with you – “Just take a drink of the chocolate shake Addie!” I can only imagine what a mess of a mom I looked like to anyone getting groceries that day.
While I was desperately trying to assure you of the deliciousness right in front of you, I looked over at Clara who had earbuds in and was happily crocheting and Gabe who was calmly holding all the food in the front seat. The scene with you and I was way different in we were both sweating at this point, your hair was a complete wreck, your little face was flushed pink and we had now entered a drooling zone of anger. What happened? This was supposed to be fun? I wanted to close the door and just scream.
It took 10 minutes in that parking lot to calm you down eventually redirecting you to waffles fries, knowing that all the turtle back fries would surely end up being squished into my floor mats because you don’t like those ones, but hey that seemed easier to clean than chocolate shake. We pick and choose our battles baby girl.
When we got home, I was exhausted. You went straight to your room to decompress, Clara and Gabe thanked me for the yummy lunch and went off to eat and enjoy their shakes. I spent the rest of the afternoon feeling guilty for wanting to just close the door in the middle of your distress. I surely wasn’t earning any sort of superhero cape today, for my patience felt razor thin in all this.
You see Addie, your auditory struggles don’t just disappear when we get home and Clara’s tics don’t just magically disappear when we walk in the door – we are constantly coexisting under the same roof. The screaming and redirecting are constant and we are finding patience in this every day. When all this happens in the car it can feel suffocating and deafening. Like there’s no escape so even the littlest of things start to become magnified.
That night I played over the events of the day and maybe even stumbled down a rabbit hole of other previous events on our journey. We took a left turn somewhere down a gravel path where everything, even the smallest of things, is just way more of a process than most endure – like getting a chocolate shake. Honestly it can be very draining sometimes. I’ve come to realize that patience is a learned thing Ad and I feel like Clara and Gabe are so used to things going haywire that they are almost unphased by most of the drama in our lives and have mastered such patience at the young ages they are. I however will always still be that girl who didn’t want to move the furniture, so somedays it’s just harder for me, but I’m trying every day to do better.
It’s often said that to lose your patience is to lose the battle. I disagree Ad. If you lose your patience and don’t try to pick up the pieces to do better, then you’ve lost. But in this family, we love hard and never give up, so I think we are still winning even if it feels like some days, are a losing battle.
We all eventually learn to move the furniture in life Ad.
I love you.
Mom
Comentarios