Milestones: It’s Not the Destination, It’s the Journey

Transitions have always been challenging.

Over the years, we’ve worked through bedtimes and birthdays, staff changes and new schools. Any change in routine, however minor, can cause a major disruption. You know the struggle.

The whole concept of Butter getting dressed up in a suit and tie, putting on a cap and gown, sitting through the entire 2 hours graduation ceremony in a stiflingly hot and full-to-capacity gymnasium… (including going up in front of people who are clapping, whistling, and using air horns!) was pretty mind-boggling to me. As much as we’d prepared, I couldn’t feel confident that he would get through it, and certainly not without a meltdown. He wanted to try, so we did.

My anxiety was high, rolling off me in sharp waves. My words came fast and high-pitched, as I tried to prepare him for The Big Night. We’d been living on very little sleep, since he had participated in a grueling week of rehearsals, a senior class photography session, Senior Banquet AND Class Night. His entire routine was off, including his sleep schedule. OUR sleep schedule. I was waiting for the other shoe to drop.

This was the big night. THE Big Night. Butter’s autism and severe communication disorder impact so many things in his life, and although I’m hopeful, I’m also a realist. It’s likely that he won’t attend college. Or get married. Or have children. This is the end of life as we’ve known it. I’d love to be wrong about this, but only time will tell. So this night, his high school graduation, is a Really Big Deal. I wanted it to be everything that those other milestones would be for him. For me.

As other parents watched their children march through to their seats, snapping photos, I sat with my jaw clenched and my heart pounding out of my chest. A room of over a thousand people. A brass band. It was claustrophobic. Would the noise reduction headphones be enough to drown out the air horns and prevent a sensory meltdown? We were past the point of no return now, running the gauntlet.

Butter marched, stood and sat down on cue, sometimes smiling, sometimes rocking in his seat gently. He walked across the stage and accepted his diploma, shaking hands and giving high fives, with the guidance of his teachers and the support of his peers. Few people in that room understood the magnitude of that diploma for Butter, but it didn’t matter. We had been through early intervention and more than a decade of therapies, meetings, pre-teaching and monitoring. That diploma was for all of us who had been there for the journey. We earned it.

The rest of the night was a blur of smiles and goodbyes. We tried to get pictures of Butter in his cap and gown with teachers and family, but he disappeared into the bathroom and stripped it off. There would be no proud family graduation picture on the mantel. Instead, we ate cake and celebrated our individual and cumulative achievements of the years.

And this is where I say that I was wrong. I was so wrong. This isn’t the end for him, only the end of his beginning.

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2 thoughts on “Milestones: It’s Not the Destination, It’s the Journey

  1. This gave me goosebumps. We are in the middle of our beginning as our son is 13. He’s well past all that early intervention and in Junior High. I cannot imagine how we will handle his graduation ceremony in a few years but you showed me that it can be done. Thanks. Lisa from Quirks and Chaos

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    1. Oddly enough, I didn’t spend a lot of time considering the actual graduation ceremony until it was imminent. I was more concerned about life after high school, the schedule change for both of us, and getting involved with Vocational Rehabilitation for job skills training. I hadn’t considered attending a graduation ceremony to see what to expect in our school district, or what the entire week would look like in terms of structure and support needed. I actually had to take the week off from work to be available for extra support in case he decided that he was done early with whatever graduation activity was happening. The key to success for us was having multiple meetings with the teacher and support staff to prepare for anything unusual. We used videos of previous graduations, social stories, and lots of visual cues to prepare him. In the end it was more than worth it. 🙂

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