“My heart is full.”
That’s what this woman I never met before told me Friday night.
My heart is full.
So simple, yet so profound.
I was at a concert with Tristan, his best friend, and his best friend’s mother. Before the main show started, we were lucky enough to be part of a VIP experience and get a short acoustic concert by Jason Aldean. While we waited, a couple stood next to us and spent the next 20 minutes or so talking to Tristan and Angelo. Actually they spent the majority of the 20 minutes being questioned by Tristan and hearing about sports.
The day leading up to this evening had been frazzled and crazy and full of autism kinks. So much so, that by the time we left I was already pulling my hair out. Then Tristan began badgering these strangers while I cringed. Quietly feeling sorry for them. When out of nowhere she turned to me and said “My heart is full. They’ve filled my cup for the next year. Talking to them has been the best part of this night and I thoroughly enjoyed spending this time with them.”
Some days I feel blessed beyond measure because we have autism in our lives. It has taught me so many great lessons and honestly has made me who I am today. Although I didn’t think so at the time, I was a child when we had Tristan. All of my growing up and maturing took place after his birth. My transition to adulthood started when the pregnancy test glowed with a pink plus sign and finished the moment we were told he was being delivered premature.
His delivery, cancer, and ultimately his autism put my life on a completely different trajectory than the one I would have chosen for myself. Though it has been a longer journey, a harder journey, it is still one I’m glad I was placed on. Perhaps our best adventures are the ones we don’t plan out in the most miniscule detail.
Autism has taught me patience, tolerance, and unconditional love. It’s taught me how to advocate for someone who can’t fight for themselves. Autism has made me appreciate the little things most people take for granted. I realize how difficult even the smallest task can be for some people, therefore; I admire the strength and determination day to day life takes.
But this is real life and I won’t pretend that it isn’t hard. I won’t pretend the days where I feel like I’m on an endless loop of the same questions don’t exist. I won’t hide the fact that there are days I crave bedtime for the quiet and solitude of sleep. Sometimes I want to throw my hands in the air and give up when I’ve repeated myself for the millionth time or shown Tristan how to do the same thing for what feels like the billionth time, just to see him act as if it’s brand new.
I won’t lie to you and act as if autism is full of rainbows and unicorns all the time, because some days it’s full of tears and frustration.
Friday was one of those days! I was running late and didn’t have time to get his food together for the concert. He’s gluten free and often times, venues don’t have food options for him. This means making him dinner to eat on the car ride down and bringing snacks for the ride home.
At 20 years old he’s capable of cooking some very easy meals that require only the microwave or toaster oven and he makes his breakfast and lunch daily. Because I was running late, I asked him to make himself chicken fingers, put them in a container for the ride, pack some snacks for both of us and grab a couple bottles of water.
Mistake #1: I gave multiple directions and expected him to not only remember them all, but to follow them all.
What I expected to happen: He would cook the chicken fingers and put them in a storage container. He would get the cheese crackers I asked for and put them in a bag. He would get a few bottles of water together and have everything waiting when the car arrived.
What actually happened: He came to the bathroom while I was showering three times to ask me how many chicken fingers to make, to ask what temperature to put them on and to ask how long to cook them.
I need to point out here that he’s made them numerous times before! On his own and unsupervised.
Next he put them in a container that was too small so when he forced the lid closed the breading on the chicken smashed down the sides, on the top, all over the counter, and in the backpack. He didn’t notice any of this or clean it up. He got one tiny bag with some crackers in it for himself; not me. He didn’t close the baggie all the way before putting it into the backpack. He put two bottles of water in the backpack. One was opened and leaked on everything.
As you can imagine when I came into the kitchen I found breadcrumbs and pieces of chicken all over the counter next to a wet backpack filled with chicken and crackers.
Tears and frustration!
I got everything cleaned and ready just as the car arrived. Then my shoe broke! I ran to fetch a new pair of sandals not realizing I grabbed the most uncomfortable pair I have, condemning me to hours of pain! Just as I was running out the door I realized in the chaos I forgot to put deodorant on! Back in the house again!
I ran out the door one last time and found Tristan walking to the car in his outside yard work sneakers. The ones with the frayed laces. The ones that are filthy. The ones that are falling apart. The ones he ONLY wears outside when working.
Mistake #2: I told him to get sneakers on. I didn’t specify which sneakers!
What I expected to happen: He’d put on a good pair of sneakers.
What actually happened: He put on A pair of sneakers. It didn’t matter that the pair he chose were broken and hanging on by a thread.
I sent him back in the house to change his shoes, jumped in the car, took a deep breath, and tried to remember it wasn’t his fault.
Tears and frustration!
On the two plus hour car ride to the concert, Tristan listened to his music with headphones. That means he blasted his music so loud we could hear it and every time he spoke he screamed because he couldn’t tell how loud he was talking. This yelling included every time he asked if we were going to pass any of the Philadelphia sports stadiums, every time he asked about the traffic, every time he asked how much longer, and every time he asked about this concert or the one he’s attending in two weeks. These questions were on an endless loop despite being answered every single time.
Tears and frustration!
By the time we got into the venue for our VIP concert, I was hanging on by a thread. I was practicing breathing techniques when nobody was paying attention. I was trying to remind myself he was excited and over-stimulated. I was trying to be in the moment and enjoy a night out with him.
Tears and frustration!
Then he started talking to the strangers next to us and I wanted to crawl under a rock. I’m his mother and he was pushing all of my buttons. These poor people were there to enjoy a show and what they got was some kid who wouldn’t be quiet. Some young man who was badgering them relentlessly as if they were being interrogated by the police! I was so worried about what these people thought of Tristan that I couldn’t see what was right in front of me.
My heart is full!
In that moment this complete stranger showed me such kindness, love, compassion, and tolerance. I was worried that Tristan was bothering her, when in reality he was blessing her. I was worried he would ruin their night, when the truth is he made it better. This stranger named Wendy reminded me in that moment, autism IS rainbows and unicorns if we choose to see it that way.
I still won’t pretend there aren’t going to be more hard moments and difficult days. I won’t pretend there will never be tears and frustration. That is the reality of a life with special needs. However, this complete stranger reminded me that the tears and frustrations come from my expectations for my special needs child to perform in a normal capacity instead of remembering he’s needs patience.
Special needs means exactly that….he has special needs that require me to be cognizant of making accommodations for him. My frustration in him not executing what I asked of him or wanted from him was a result of me being unrealistic; not his shortcomings.
Sometimes we need reminders. Sometimes we need a stranger to step up and remind us of how special our special needs kids are. Sometimes we need someone to point out the rainbows and unicorns. Sometimes we need someone to hand us a tissue so we can wipe our tears and move beyond our frustration.
I don’t know who you are Wendy, but I thank you.
Because of you MY heart is full!