A few weeks ago, my Butter was especially hard to get up and around in the morning. He’s not able to communicate verbally, so this gave me cause for concern that he was feeling ill, or perhaps was upset by staff changes at his day program. Without an obvious cause, I could only guess. When his motivation improved the next week, I attributed it to better weather, better health, and maybe better sleep.
One day just before Halloween, I went to wake him and start his morning routine. He was all stuffed up and sniffly, so I decided to keep him home for the day to rest up. I didn’t ask him, I just quietly closed his door and let him sleep. By the afternoon, he was up, pacing back and forth, and very loudly vocal. His father commented that he seemed restless, but I thought it was more than that. Frustrated? Anxious? The next morning, he was up and ready to go before I even got out of bed! Strange, unexplained behavior! Stranger still, he went into the bathroom and I heard him using his electric razor by HIMSELF. What the….? They were having a Halloween dance at his day program. Maybe that was it.
I was surprised –absolutely shocked, really– to read yesterday’s note in his communication log that said that he’d made a friend, and she would like to arrange to see him outside of their time at day program. I read the note several times, allowing it to sink in… A FRIEND! AN INVITATION! HOLY COW!!!
I gave permission to share our contact info, and later that night I got a call from Butter’s new friend. She told me that a few weeks ago, her power wheelchair had broken and she couldn’t attend program for the week. (Hmmmm… about the same time that a certain someone didn’t have an interest in going to program anymore. Imagine that!) We set up a time for all of us to meet and eat lunch together. I was excited, and nervous, and a bit shell-shocked by the idea that Butter had developed a social life that I didn’t know much about.
Tonight, I got another call from this lovely young woman. She wanted to let me know that today Butter played disc golf with a group. When he came back and she asked if he had fun, he repeated, “FUN!” Let me repeat that. My big, sweet, non-verbal guy said, “FUN!” And he said it in response to a question. Be still my heart. Feeling the tears starting to come, I thanked her for telling me, saying that he can’t share what happens at program when he comes home. Her reply:
“I know he doesn’t talk… but if it’s okay with you and him, I can tell you what happens every day. I can be his voice.”