The Long Game and the Everyday Battles

Written by Amy Shope

We might be playing the long game — working tirelessly toward inclusion, independence, and dignity for adults with autism — but some days, the small battles break your heart.

The other night, I stopped by Dylan’s house. He was sitting quietly in the dark, and his caregiver looked defeated. I asked what happened, and my heart sank. Dylan had gotten upset, hit the caregiver, and broke his glasses.

The meltdown started when Dylan’s roommate, Peter, left for a far-away basketball game in the red van — the same one Dylan has ridden in for seven years. He’s been going to basketball practice with Peter, and though I’m not making excuses, Dylan just couldn’t understand why he wasn’t allowed to go this time. He loves outings and especially loves Mr Paul (which isn’t even his name).

When the caregiver told me what had happened, I felt two heartbreaks at once — one for Dylan’s confusion and one for the caregiver’s exhaustion. This work is hard. It’s emotional. It’s unpredictable. But it’s real life.

I’ve promised myself since the day I started Dylan’s House that I would be real, raw, and honest about our journey — not just the milestones, but also the moments that test every ounce of patience and hope we have.

My mom heart still aches hearing Dylan’s voice say,

“I want to go to the basketball game, Mom. Please don’t leave.”  My entire night was ruined and I am still crying.

There are no easy answers. No perfect plan. But I do know this — I will never stop fighting for Dylan.

I will never stop fighting for every family who lives this life.

And I will never stop fighting for the caregivers who show up every single day for our loved ones — doing one of the hardest, yet most meaningful, jobs there is.

The long game is worth it.

But some days, the small battles remind us just how much love, faith, and strength it takes to keep playing.