A couple months ago, I started having nightly FaceTimes with Mark. I was at my home, and he was at his. However, I found him agitated. He didn’t say much, and seeing me from afar seemed to make him sad.
As a result, I got agitated. I also found myself getting a bit controlling. “The direct staff member is prompting Mark,” I said to the leadership staff. “I want his conversation to be natural.”
From then on, all prompting stopped, which also had me a bit frustrated. But I knew I needed to keep those feelings inside. Mark now takes advantage of his freedom and walks around his room while talking to me. Sometimes I see his face, or his bed, or the fan, or his chair, but he still talks for a few minutes. Sometimes he ends the call and sometimes I do, which is natural.
Even so, I was feeling judgmental of staff for giving Mark the flexibility to roam, of my son for wandering, and myself for not saying the right things.
“Ali, I’m frustrated that Mark doesn’t say more on our nightly FaceTimes,” I said to my daughter.
“What?” she asked. “Mark calls you every night?”
“Yes,” I said.
“And he talks to you? He only ever tells me it's time to go while on the phone," she said.
“Well, yes, he talks. But I want him to talk more,” I added.
John and I were both around yesterday when I talked to Mark. I am stuck inside with a miserable cold, and winter weather had John working from home.
After my husband walked through the room as I was talking to Mark, I got defensive. “That’s the worst we ever do, but he has a cold and so do I. When my voice is going, I don’t want to talk.”
“Honey, I am blown away if that’s his worst, and even if that’s his best. That is nothing short of amazing - how far he’s come,” John said. “You two were having a conversation.”
“Oh my gosh! We were!” I exclaimed.
Getting Mark conversational was the goal for years, actually for two decades. I used to think things had to be perfect. I thought I had to be "on" every second. I got mad at myself for not getting Mark there and mad at others for the same.
I stepped back and saw that he was talking, but not in a scripted, therapeutic way but an extended, relaxed way. I was seeing what he wanted to talk about and when he didn't want to say more.
Only once in months have I heard the staff instruct Mark to include something. “Mark, please tell Mom how well you did at putt putt today,” his day staff said. But he didn’t say it. That wasn’t important to him.
He was concerned because I wasn’t going to be seeing him for a few hours on Wednesday or taking him to Derek’s gym because I was sick. While I could not get him there, canceling was the right decision for Mark as well. He is under the weather.
I told him, “I see you wiping your face. You need to get better, and so do I. Ali was sick but is now all better. Dad was sick and is now better. Now it’s just us sick.”
Mark asked, “Brendan’s all better?” I don't even know if Ali's significant other was ill, but I loved that Mark cared. This is more than chit chat. It's empathy.
I’ve been so busy watching the water in the pot and waiting for it to boil that I missed how warm and bubbly my son has become.
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