The late afternoon arrived beneath the murky gray clouds on that summer day we lost power.

Jake and I sat close by the living room double window. We had a clear view of the now undeniably blinding, misty rain. Just a few short moments before, the sound of the severe alert bleeped in unison across our phones. The heavy sound of thunder muffled in line accordingly. It was just like the echo of a stark warning blaring over an ever so turbulent sky. The rain to follow was in fact fierce. Disorganized winds blew upside down and sideways. The angry rain passed through with an unmatched vigor. Seconds passed like minutes, and minutes past like hours, and all in one big inhale.  

Moving, shifting, and lacking focus, the slow exhale had finally begun. Only then, and just as sharp as it had started, the storm simply passed. An island of utter stillness was the only trace left standing. It could be described just as the peaceful silence felt when driving your car under a bridge in the pouring down rain. You are never quite prepared for the feeling of this sudden pause, yet you never want this feeling to end.

A reminder of the tranquility that is always there somewhere, just waiting softly in the distance. A reminder that it is OK to stop treading water in the pools of uncertainty. It is more than OK to dry off in the sun.  

After the rain, the present moment was upon us.

And by the time it was nightfall, we were lighting small candles and bringing in takeout pizza. We were calling the power company for the updated turn on estimate. We were sitting close together. We were holding on to the last lit moments of dusk. The four of us surrounded the small, rectangle coffee table. The table was cluttered by now with pizza slices on top of paper plates. Lined-up cell phones were waiting to charge on the one computer still left with power. We were talking. We were laughing and telling all the classic family stories. The storm had forced us to focus on the present in this ever so unexpected moment. There was no other choice to be made, and no other way to be. It was not until the dawn hours of morning when the power finally flickered back on. The inevitable face of ordinary would arrive in our ever so ordinary daily hustle. Sometimes putting it down is an awareness of the true weight. 

The lesson may be found in the eye of the storm, or it may be found in the quiet comfort of what remains after.

This is just one story…

   It was already late-August, and I was knee deep in what felt like wet sand. There were the usual lawyer check ins and the still unscheduled IEP meeting. At the same time, I was trying set up a new ABA, behavioral therapy provider since the last company unexpectedly lost staffing. The professionals were recommending residential now as the only alternative to ABA. The thought of this turned my stomach upside down every time it was mentioned. Residential was not for Jake. It was not for us. The shock of this suggestion never subsided. I was back to the normal stride of parenting with a hard to describe, complex kind of uncertainty. What help was the right help? The wrong help always made it so much worse. It was trial and error in the cruelest kind of way. Trial and error on your child.

We would lift our hopes up each time to watch them fall. We told our story again and once more. We told it too many times. The theme of our journey felt lost. The story felt played out, boring, and old.

Parents of children with autism and invisible disabilities are left to question their own judgment. This kind of self-doubt lingers around the subjective answers. Parents tell their same stories repeatedly without getting the support that really matters. It was all too heavy to carry, yet there was no chance we would ever let go. This is the normal stack of bricks many parents hold which fosters the “I don’t know how you do it” kind of reactions.  

   Jake did not sway easily towards change. He innately thrived in his routine. Jake struggled with a multilevel of executive functioning skills, and a fear of the unexpected. Dysregulation affected his nervous system, and his nervous system was affected by dysregulation. We were holding on to the progress he made in ABA in these last few months. There was substantial progress to celebrate.

There was no doubt that Jake’s progress in ABA was due to their empathetic and collaborative type of approach. The opposite view from the firm ABA reputation style known to most as standard. Jake needed autonomy, respect for his individuality, co-regulation, and meaningful interactions with people to grow and to thrive. Jake had an autism diagnosis. He had a PDA profile that is still not recognized widely in the United States. I tried repeatedly to maintain the positive momentum we built in ABA. I wanted to make it all work. I felt like a failure as a parent. 

It is easy to blame yourself in situations that are most precious to carry.  

Jake was naturally moving back into sleeping in and staying up late. This kind of schedule came naturally to him, along with the quiet comfort of nighttime. It was summer, he was a teenager, yet I knew there was so much at stake. Another school year was gearing up in fast motion. All we could do was try our best. This is what I told myself on many summer days just to ease the weight of the pressure. The pressure many parents of kids with invisible disabilities must face alone. 

The summer was winding down and it was the Tuesday after Labor Day. The first day of school was underway, full speed ahead. There was no meaningful preparation from the school system, again. The promised meetings, the emails, and the piled up everything was pushed aside, again. I was waiting for the September IEP meeting to help plan a new and very overdue transition plan, again. What were we even doing, again?

I sat on my porch a few minutes before seven waiting for Jake’s bus to pull up early in the morning. Why was the bus arriving before a plan was made? Where was the communication? I requested a video from the teacher for Jake to watch, again. Just like in all the years before, I requested preparation. The standard, play a song, welcome him to school, give a tour, wave goodbye, and see you in September video, again. I had to explain one more time that Jake needed the visuals. He needed the videos and the kind of preparation worthy of an academy award.

There were just so many years of failed plans stacked upon failed plans. I wanted to salvage the hope that this could finally somehow work. The simple reality to Jake was that it was all incomprehensible and beyond overwhelming to his nervous system. He could not even entertain the thought of walking into the building. The reality was that they were not meeting his needs for all these years. They were not providing a free and appropriate education.

I was angry that I even had to play this role of trying for what I knew would not work. We had been through this repeatedly. Part of the system required us to try. We had to continue no matter what my gut instincts screamed out. I had to show my efforts as a compliant parent. This was even more important now because we had a lawyer representing Jake from an advocacy group.

Last year Jake never attended a day of school, yet made the perfect attendance wall board. In fact, Jake has not attended school since the winter of 2020. I was angry that we were stuck in such a broken system. I was angry that the assignment we were given was to let Jake fail. This would be the only way to finally get him the accommodations he needed. How did this make sense? The trauma he experienced in the wrong school followed by a pandemic took years and years to unravel. Still, pushing through was the only answer in sight for miles. Jake refused school repeatedly and without fail. Rewards and punishments did not work for Jake. Standard parenting styles just do not work.  

What we knew did work for Jake? Empathy, collaboration, co-regulation, and an all-in kind of approach. This is what worked for us. Parenting a child with disabilities is dynamic, customized, and exceptional. Jake always had an ability to see the details that we might miss, to uncover what and who is not genuine, and to miss many of the details we would expect him to understand. A regulated nervous system is the baseline to any successful outcome. It must be done right, the right way for Jake’s needs or not at all.  

 I sat on my porch in the stillness. I could see the usual first day of school moments captured softly in my view. Two siblings were holding up their square first day letter signs for the perfect photo ops. Their parents each took turns setting up their poses exactly just so. Another mom took a quick picture of her teen daughter next to the car. They were buckled over laughing about running late. I watched the kid down the street, who is no longer a kid, toss his backpack over his shoulder and check his hair in the reflection. He sat down in the driver’s seat of his car. A small reminder of what we could not do, what we have tried to do, and the unfair, fake game I had to show up for this morning. 

When the bus came to a squealing stop, I took the yearly “this is your bus” video for Jake. The driver and assistant were more than kind and understanding. They said with confidence, “Even if he just wants to wave to the bus, it would be great for him. He can also come out to see the bus tomorrow”. My mind reflected on all our past attempts. We have done this so many times in the failed years before. These are the redundant transition plans we were accustomed to. The crushing comments on the sidelines spoken from school professionals, comments like “We need Jake to return to school now so he does not get suspended in school later.” Words that crush the bottom of our throats. It is hard to explain and harder to understand in respect to the true scope of the family journey.

Many autism parents experience an impossible decision. Do I traumatize my child, walk away from a broken system, or just try my best to play their game? These games were now the theme to our story.The story in which parents of children with invisible disabilities must normalize and balance in the face of misunderstanding.

The bus driver gave one last wave and slowly drove away.