Being Mark's Mom: Yesterday vs. The Day Before

Being Mark’s mom is a large part of who I am. It’s a role I love that challenges me and exhausts me. It asks me to think outside the box and be stronger and smarter and more patient than I think I can be.

It is my Instagram name, and some might say it’s cringey. Labels like autism mom are problematic. I’m really the mom of an autistic adult. I’m Mark’s mom, but I’m also Shary. 

Mark is Mark. 

And then there is Mark’s dad, also known as John … or, to me, as Silver Fox or Stud Muffin.

Being Mark’s dad involves autism, but not only autism — also activities and fun! It’s a hard role, but not all because of being Mark’s dad.

It’s hard because he is the husband of Mark’s mom.

Mark has been struggling lately, not at our family home but at his living community. Being Mark’s mom means I, too, have been full of stress.

Knowing we would have an important meeting yesterday, I told John I wanted him to do all the talking. This always scares him.

“Just tell me what you want me to say,” he said.

“No. I don’t have an agenda,” I said.

“You always do,” he replied.

“No. It’s not that. It’s because you are so concise. The meeting is only for an hour.”

That made him laugh.

“Really. You do it. You’re better on your feet, and I am so stressed and emotional now,” I said.

John is masterful. He has a way of convincing the people he’s talking to that they came up with ideas that are his, and which everyone feels better about by the end.

Last week was hard for us emotionally. 

Mark was maybe his most mature ever at home over the weekend. “Angelic” might come to mind, but that sounds too much like he isn’t human or earthy. He was. He was laughing from the belly, helping to lift whenever we needed help, hugging at every opportunity — natural, alert, and alive! He was comfortable with everything and everyone exactly as was at home and out with us.

And then, the next day, Mark did something goofy on an outing, and his new staff quit right after. He didn’t hurt himself or anyone else, but he’s not asking before fixing or exploring and so on. It’s a safety issue when he just runs off.

We are told he’s smart, capable, and opinionated. His language and judgment, however, are not caught up with his smarts.

As the meeting started, something happened with my computer audio such that no one could hear me. I saw the smile on John’s face and then heard him say, “That may be a good thing.”

Everyone laughed but me. 

When parents have a disabled child, they often break up because of the sadness or the worry or the child’s behavior, but for John and me one of the big stressors is these meetings — how to prep or advocate, when to fight the experts or our spouse.

In the meeting, Mark’s team and John did a lot of the talking. I was proud of myself for listening, though I wasn’t sure that I agreed on the plan.

Minutes passed. During lulls, I asked a few questions. And then I had a moment. All of a sudden I got it. I got it! 

I saw the behavior expert’s plan differently.

I was wanting near perfect staff who stayed for long stretches. But I was realizing that she was right — that Mark is relaxed and regulated with John and me and others who read him and know him largely because of our work, as well as how comfortable he feels with us.

But Mark needs to learn to generalize or internalize good behavior even if he doesn’t always have super terrific people to help him regulate himself.

That plan made sense, and I started to cry, which I don’t do in meetings. “Can he make progress? Do you think he can learn this?” I asked.

“Yes,” the BCBA said. “He’s so smart.” 

She has a plan to help him wait to do things and do them in the right ways and with a broader range of people.

And I am cautiously optimistic while knowing that they will need the great, consistent people to get him there.

And they will need to generalize their skills and confidence with the clients who are easier in some ways to the ones who are looking for opportunities to get away with something, as Mark is at this time.

And they will need to do it without taking too long because the newer, tighter ratios are pricey.

Again, as time and time before as Mark’s mom, I chose hope. 

And then I looked at John, on the Zoom, and said, “I hope I didn’t interfere with your thought process and plan.”

“This time it worked fine,” he said.

After the meeting, John and I talked. He told me that he had said what he wanted to say and that he was also finally putting together the logic behind the behavior plan, too, and that I articulated it extremely well. 

Yesterday was a far easier day to be Mark’s mom than the day before when I was in panic mode.

It turned out to be an easier one for me to be with Mark’s dad, too.