The perfect wrapped in fall weather lay upon us after a year of unraveling. A true painted picture of crunchy side blowing leaves soaked in the leftover summer sunshine. This masterpiece set the stage as a reminder. A reminder to slow down for peaceful days. It was a needed time to step softly in the aftermath. No need to rush forward. The knots of the past were pulled tighter than we could bear. Tight enough to leave visible indentations. Still healing.
It was Jake’s seventeenth birthday, and I am certain that time will always move in blinks. We did our best to not make his birthday too overwhelming. Not to make a big fuss. This is not an easy feat to master. In the past our embedded expectations of what birthdays should be were never the right fit for the reality of Jake’s actual needs. We tried to contort our steps to fit. We tried to twist to an awkward state of sideways. We tried all the things that did not work.
This year was different. This year marked progress. We sang happy birthday over a tray of double chocolate brownies. In the past, the happy birthday song it itself was a trigger. A moment we would always brace ourselves for.
Jake was growing since we let go of the school stress. He was growing in ways that were hard to explain to others.
We wrote on an oversized card with big colored markers which was displayed in our living room. Colorful words, with all the reasons we love Jake. We drove to the park and took a few pictures under the soaked in yellow trees. And at his wish, we sat in the car to eat lunch. An empty picnic table lay just five small steps ahead, but we knew it did not matter. We were here. Just us. It was important to be still in this reachable moment. It was important to celebrate. A simple birthday lunch in the car was our definition of grateful. Families of children with invisible disabilities have practice walking outside the lines.
At the same time there was worry wrapped around our quiet peace. Worry for the services that could be taken away from Jake due to his non-participation in school. The exit IEP meeting notices were began to arrive.
I was guilty of putting my foot down in sharp refusal to even communicate with an IEP team that would never understand. By the time we yelled out mercy there were no words. The words lost all meaning in those empty meetings every time. This is the reality of what many families must face. This is the cold reality of the IEP meeting. This is the reality of the kind of parenting that has been compared to the stress of soldiers on the battlefield.
A few days would pass, and it was not long before November. I was driving home from a few short and overdue errands that day. Jake was home and not feeling so proud of himself. We were exuding the same energy of disappointment right back to him in mutual frustration. It was yet another long day that sucked out all the hope. A day that Jake could not participate in ABA therapy. A day when Jake’s nervous system disability stood in the forefront.
My car was embraced in quiet when I sent Jake a text message. It was a last-minute decision to text him, without too much thought. “Do you want me to pick you up to get the car washed?” He quickly responded “Yes “. I expected him to say no. I expected him not to respond. I did not at all expect him to say yes. I knew that if I had asked him the same question at home, he would have said no immediately. I knew that the yes was the result of changing the way in which the request was delivered.
It is imperative not to give up on your child’s abilities. Learning to stretch into different angles to achieve this is crucial. I am still and always learning.
The early sunset was turning the sky into soft grays mixed with oranges. Jake walked out to the car with his phone and his soft black headphones. He sat down in the front seat without any words. We drove in silence. I could see his face turn to one of uncertainty as we slowly pulled up. I entered the car wash code. I spoke calmly, “the light is red and will turn to green when we can enter.” Jake’s face was locked forward.
We were now inside the car wash. Green light. Red stop. The sudsy soap started to cover the car as I turned to see Jake’s eyes light up. He immediately took off his headphones and put down his phone. The big red brushes turned and twisted around us in the oversized, and pale crystal-white bubbles. Jake was over-joyfully just happy dancing. We sang “Do the car wash, do the car wash!” We were both dancing. How could we not?
There was an instant party in our car and the energy was contagious. The lit-up sign ahead signaled the rinse, we were dancing in the clean-spilling rain. A soft mist began, and we heard the gentle pattering. It was now time for the big dryers. The blowing sound of a plane taking off ran through our ears. All while a huge smile was gleaming across Jake’s lit up face. It was pure magic.
After the car wash, we cheered and we high fived. There were more happy dances in our car. Jake shouted, “I loved it! My first time in the car wash.” It was a magical moment.
As we drove home, we saw a few houses that still had their Halloween decorations on display. Jake’s smile was genuine.
The shortest and most unexpected moments can take you by surprise. The hard days are only as hard as you make them. There is joy in the aftermath of the storms. I am reminded over and over how endlessly capable Jake is. Parents of children with autism and invisible disabilities face the hard days, and all the good that filters in between. If you truly step back from view, you will have the true honor to see.
