I remember one day wearing a “Down Right Perfect” t-shirt as I marched up to the high school doors to collect Wil after school hours because he had run from getting on the bus. He booked it up the steps to the second floor and hid. Once he was found, Mr. Walsh walked him down to the media center, and waited with him until my arrival. In that moment, I felt the irony of what I was advertising on my t-shirt.

We parents of children with Down syndrome also get a “Down Right Perfect” label, too. Like our kids, the label doesn’t always stick. If we are specifically chosen to raise our children with Down syndrome, I believe it’s because we have extra learning to do that goes hand-in-hand with extra chromosomes. I’ve certainly learned extra patience with Wil, but there are many times my patience misses the bus and books it up the steps until I go up to determinedly collect it.

At noon today, Wil sat on the floor in his pajama top and underwear. Speech therapy was in 30 minutes, and it’s a 20-minute drive. Wil and I had been going round and round. I’d gotten him from the basement to his bedroom, giving him the patience and space he needed. But once he got up to the bedroom, he came to a full stop.

I was quickly draining patience. His refusals used to be a regular occurrence. Depending on the occasion, I’d prep him an hour to 30 minutes before the event. But now he rarely declined doing something he enjoyed. He also knows his daily schedule – when he got up this morning, he cheerfully said, “Summer speech today!”

“Yep, at 12:30, just after lunch,” I replied, just as cheerful, woefully unprepared for the stop sign up ahead that would materialize out of nowhere.

I didn’t know what turned the tide for him. I didn’t know what turned the tide for me either. Whatever flipped his switch set off a detonator on mine, too. I called Matt to talk to Wil because I knew I wasn’t in a mental space to. I put Matt on speaker. Wil responded to Matt’s call and started to get dressed. I took a deep breath. But as soon as I hung up the phone, Wil stopped all forward motion. I called Matt again. Now I knew I was getting on his nerves, too. None of this was going in any forward type of direction.

I left Wil’s bedroom to give us both space. I texted the speech therapist that Wil was stuck and likely late. She is no stranger to Wil or to what “stuck” for our kids means.

“No line dancing tomorrow, Wil!” I heard Wil say to himself. He recently started personal training with Brandi, and she knows his country vibe. She’s a Southern girl; the two of them are a great match. She promised a line dance at their session tomorrow. Wil was grounding himself from something he wanted to do because he wasn’t getting dressed. I walked back into his bedroom.

“Wil,” I said, “I don’t know what is going on. You love speech therapy. You love Miss Kim. I set all these activities up for you, and I ask you first. I don’t make you do anything you don’t want to do. You are 18 years old and you need to honor your commitments.” I don’t know what else I said, but I went on in that vein, and there is no way he could have processed it all. To him, I was like one of the adults from the Peanuts cartoons, “Wah wah wah wah wah.” Then I realized I had also butt-dialed Matt. WAH!!!

Wil did eventually get dressed, and Katherine drove him to speech therapy. I asked her to take her time, not rush; they knew he was going to be late (Thanks, Katherine!). Kim, the speech therapist, was very kind and understanding. She even sent me a text message after their session saying he did great (Thanks, Kim!). That Mr. Rogers was always Down Right Perfect in his advice: “Look for the helpers. You will always find people who are helping.”

I thought over all the things I coulda, woulda, shoulda done. I think I’m just overwhelmed with all the things I’m coordinating for him right now. When Wil did the PEAC bike camp a few years ago, the founder of the program said to me, “Activities for our kids don’t just happen. You have to create them.”

Raising a child with a disability, at least for me, is this mix of intense proactive coordination and gratitude for what is. There is so much to get ahead of, to be proactive with, and to premeditate. On the flip side, I’m incredibly grateful for what is available, for the people who care, for the people who make mountains move, for the helpers and understanders.

I think it really was as simple as me feeling all the stops and starts and desiring a flow, while at the same time Wil needed to put a plug in things. We were playing a game of red light, green light from opposite directions.

When Wil got home he was hungry.

“What do you want?” I asked.

“Nachos.”

“Ok, let’s get out all the fixings.”

As we assembled the nachos, I asked him why he got stuck earlier.

“The rain.”

“Oh, the rain. Thanks for telling me. Now I know for next time.”

“Yep! Mom, these look good.”

“Down Right Perfect, Wil!”