The autumn sun was just beginning to set. The impending darkness swayed Jake’s decision to participate. He agreed to a quiet walk before dinner. It was a last-minute idea. I thought the movement may stir or untwist his sticky bad mood energy.

Jake’s voice turned into a sharp rasp. He stood to his feet and said, “Just to the end of the street and back. I do not want to see people!” Jake stomped awkwardly into his green crocs right by the front door. My second thoughts were finding all the regrets. Jake was ready to walk outside with the unfair expectations in which I could not in any way control. His mood was pushed to the brink of the edge already. I had to stand back.

There was still time to make this right. It was time to step in and co-regulate. Jake had a nervous system disability. This was the only way. Jake’s headphones were playing his base heavy Spotify playlist, and we began to walk in the crisp fall night air.  

I pointed out the puffy sliced-in-half looking moon just above our heads. Anything to shift. Anything to distract the boiling nature of his potential reaction. Just keep on walking.

The skies were more than clear. We walked under the almost gray fading into the night sky. Jake was moving straight ahead and walking forward like a trained military soldier. His locked eyes never glanced up or shifted back down.

An older man and his light brown dog strolled by in the far-off distance.  Jake was still staring straight ahead. A woman across the street loaded bags into her back seat. She then shut her door and started her car. The head lights flashed on brightly in unison with the sound of her cranking engine. I was doing my best to ignore my own sympathetic hypervigilance to the scope of Jake’s surroundings. This awareness can be a heavy load to hold.

Parents of children and teens with invisible disabilities have adapted to this level of keen eyesight. This moment and potential quiet walk started to crumble like sand into my hands. All at once, Jake yelled out a painful scream, “I’m sorry I didn’t mean to, I’m sorry!” I saw him start to spin sideways over and over like an out-of-control cyclone. My stomach dropped hard right beside him.  

There was still time in this hopeless spiral. Still time to step in and support. “Only a few steps, we can make it. Take a deep breath. You have got this. I am right here. You are doing great. We are so close to home. I have your back.” I knew all these words were holding him up as we walked hand in hand.  I knew my sideline coaching was imperative to making it home to our safe place.

We needed the quiet, a soft place to sit, and the comfort of home. Jake needed time to regulate his overflowing nervous system in a safe place before he lost all control. I told myself to just keep walking. To breathe slow. To mirror the calm he needed to absorb. We had been here many times before.

Parents who know, just know. We were only three houses away from our porch. From our front door. Only a few short steps away. We can make it. Breathe. A few more steps.

It was at this very moment that my neighbor’s door swung open. He was innocently walking to his car on this ever so ordinary fall evening. He was just walking to his car. I instinctively brushed my hand up to send a polite, neighborly hello. I had to be kind and walk with a face of normal.

Jake could not bear one more sensory trigger. The top was off. He collapsed hard onto the grass in my neighbor’s front yard. Jake crashed to the ground, like he simply lost every ounce of control. The bottle was in full-blown overflow.

Our neighbor stopped to help. Then he quickly decided to keep moving towards his car. It was as if he wanted to respect the uniqueness of the moment. I watched his wife peak out of the window behind a long beige pulled back curtain. Intentionally, I showed Jake a thumbs up to encourage him to stand, and let him know he was OK. The thumbs up was also to alert the peaking neighbor. We needed the privacy to calm down amongst the sensory overload Jake was entangled in. 

Invisible disabilities, autism, and disabilities of the nervous system can incite a wide variety of multi-layered reactions. Invisible differences can be misunderstood in a multitude of diverse ways. There is relentless acceptance.There is nothing wrong with knowing what you need and what your child needs in the moment. Needs should never be ignored.  

My husband came outside to help. At first, this caused Jake to have an even louder and more panicked reaction. He knew he was in the spotlight. Jake was using the ground to stabilize his spinning out feelings. Jake needed to ground himself.

For this I am clear..

I am not in any way in tune with the true magnification of just how bad Jake must feel in these moments. I am not the expert.

He was yelling and screaming the most horrific words. Words he would never say. He was grabbing the kind of attention we wanted to avoid. The kind of attention that could bring neighborhood complaints, 911 calls, and a deep misunderstanding. This could lead us to a road we never wanted to step onto. A road that leads many families to separation. A road that brings attention to the wrong support needs. A road that may lead us off track.  

Jake was finally standing up. We used comfort, co-regulation, and less words. Our moment was past the point of meaningful words. We had to just focus on getting home to our safety. We were walking. Slowly, and ever so carefully, and we finally made it. Hand and hand and step by step. We made it to our door. Jake walked to the table and folded his hands around his entire head. He folded into himself to sob and to cry.  

We grounded him by just being there. We gave him some space, then we hugged him when he was ready. We took the time he needed to feel safe, and the time to pause. We took the time to talk it out. Jake always wanted to talk after a difficult moment. He wanted to understand the how, why, and what. He wanted to try to do better next time. He talked about trying to walk tomorrow. We talked about why we would. We talked about what it means to be resilient. 

 It took a few hours to see Jake’s smile that night. It is always worth the wait for his smile.  

The dynamic of a meltdown can be overwhelming. Human reactions are complex. They are sometimes too all-encompassing to break down into intricate details and tiny parts. There is not always a problem to solve or an equation to master. The answer is how prepared you are to securely stand in the water through the unpredictable tides, rocks, and currents. It is smarter to wear rain boots with traction rather than wade through unpredictable waters in bare feet. There is power in co-regulation, love, and true understanding. There is power in being prepared, even in the shallowest of waters.  

Parents of children with invisible disabilities know how to be prepared. We have been conditioned to do so. There are times when a simple walk may not be so simple. There are times when expectations will not be reachable. There are times when the lesson may not be worth the output of the energy.

It is always better to dress prepared. It is better to trust in your intuition. And it is better to always, always start with love.