The Courage to Be Imperfect

For six months, I have been super stressed about Mark, but after a recent meeting I am feeling relaxed and hopeful. He is doing well at his supported living community, and I will show you what doing well means for Mark as well as my struggles to rate how he’s doing that way.

Mark may always have challenges because his problem-solving smarts surpass his judgment, but I heard again from those who work with him how “smart” he is (which is more crafty than booksmart). I also heard how cooperative he is with the staff who are not intimidated by a guy who’s 6’3” and 300 pounds (though a gentle giant) and who exhibit calmness and give him more autonomy. 

The behavior analyst (BCBA) said she knows it sounds counterintuitive but when people give him space he “behaves” (for lack of a better word), but when they follow him anticipating problems things go wrong. That doesn’t surprise me at all. It makes perfect sense.

Mark may never be 100% independent, but he’s an adult in many of his interests and in his size. He should be treated like one.

When Ali, Mark’s sister, visited him last night, she felt the staff had great chemistry with Mark. Today we learned that that staff member, who is brand new to Mark and to autism, is asking to take him off campus with friends more in the evenings. I’m elated that she is already comfortable doing that.

I’m finally realizing that I must not let myself stress about every little thing. 

“Mom, I’m going to call you and tell you what I saw tonight. It was mostly great, but please don’t freak out over the one thing that happened,” Ali said.

Mark, apparently, was comfortable and engaged for an hour and a half before getting antsy to go swimming. Staff were not ready to take him yet because a housemate was finishing something up. 

Ali could see Mark, whose iPad was charging so he didn’t have that as a distraction, get ready to go and bolt out the back door.

My first thought was that Mark had failed, or the staff had failed, or that I had failed somewhere along the way — or all of the above.

But Ali told me the evening was smooth, that the staff was connected to Mark, and that the blip did not become a crisis in anyone’s mind, except possibly mine. 

Mark will have impulse control issues. 

He will test new staff. 

He will crave independence that others his age have. 

He will want and need to move and swim! 

The staff did not look at Mark as a problem. 

She did not panic. 

She walked calmly with the other resident to get Mark, who came right back to the house with a smile on his face.

Soon after returning to the house, Mark’s friend came out in a swim suit, realizing it was time to stop his activity and to go swimming, and they all went to the pool together, where Mark initiated interaction with a sweet nonspeaking friend in the pool. 

Ali texted me a photo I cherish. I deleted the phrase “Mark eloped” from my memory, and I saved a photo of Mark happy in the pool.

I erased the photo in my mind of a frantic, frazzled mother, and I saved the phrase “I feel myself breathing again.”

I will be fine until the next thing comes up, and something will come up, again and again, because I have a wonderful but complicated son. 

“I feel myself breathing again.”

While I would like to say “This too shall pass” whenever a problem arises, being Mark’s mom never means just letting things proceed and assuming they will work themselves out. 

Letting things happen results in disaster.

But so does expecting perfection.