“I’m so tired of this!” I moaned, walking through the hallway after Peter and I had struggled through his toothbrushing routine for the 16,000th time. Peter has never got that forward and back toothbrushing motion down despite literally working on it three times a day for 15 years. I guiltily stopped myself too late. Could he have overheard?
Later that evening, I steeled myself as I handed Peter a damp towel to wipe down the dining room table, having finished dinner. I had asked him to clear his dishes and bring them to the sink, but he had stayed rooted to his usual spot at the table. After a long pause, I wearily pointed my finger to a spot on the table for his hand to aim for, and back to edge, back and forth over and over to create targets for his hand to move between. When he finally finished wiping the section of the table he could reach from his seat, I said, “Come on, Pete, stand up now, so we can do another section of the table.” Nothing happened. Long pause.
I took a deep breath, and made a last ditch effort. I pulled all the chairs far enough away from the table so that a person could easily move from one chair to the next. “Come on, Peter! Here we go!” I sat down on the chair next to him and wiped down the table space in front of me, then scooted to the next chair. “Your turn!” Peter got the idea at once, and slid his bottom to the adjoining chair, wiping the table space in front of him with gusto. Wipe, wipe, wipe, scoot,… wipe, wipe, wipe, scoot,… Without having to stand up, Peter moved from chair to chair, wiping the table with alacrity, grinning ear to ear. I felt at once amazed and delighted, but also deeply humbled. Here I had been feeling so annoyed and impatient, and clearly, Peter was eager to help. He just needed help getting started.
We talked about the episode later.
Mom: Did you like our goofy “musical chairs” game to get the table wiped?
Peter: yes.it wwas ffun. i couldn’t get myself to move. i could,n’t gett my feet to srtand up.
Mom: How did the stuckness change when we played musical chairs?
Peter: i dion’t know hiows it works butv when you finally started a game, my body got into a rhythnm.
Mom: Do you know what to do, but just can’t get your body to do it?
Peter: I do know what to do on most of my chores, but sometimes I feel like I am climbing an unsurmountable height to get my body in motion. Thanks for the game it makes all more manageable.
Mom: This seems to happen a lot. Most of the time when I ask you to do chores or self-help skills, you sit there until I get close to you and offer verbal encouragement and often also physical assistance or gestures.
Peter: i do want to cooperate, but my boddy just won’t move. i really can’t stress enough how hard i try to move. of course i understand how frusttrated you must get with me, but i can”t makee my body go.
Mom: Bet it makes you feel even more frustrated when i get frustrated.
Peter: just sad.
Mom: I’m sorry I make you sad sometimes.
Peter: the sad part is that you try so hard, but i disappoint you.
As we were talking, Peter’s dear friend and tutor Miss Belinda came walking up. She started chatting about a talk show she’d just been listening to about changes in American culture. That reminded me of an incident along the same theme that occurred to Peter and me the day before. We were approaching the family/handicapped locker room at the YMCA after swimming when a little girl darted in front of me and opened the door to the single use locker room.
“Excuse me, little one, but do you think Peter and I could use this room since you and your sister are both girls and can use the girls’ locker room? Peter and I can’t be together in either the boys’ or girls’ locker rooms, and he needs my help,” I said.
“I just have to get my shampoo,” said the girl, who looked around ten years old. I stepped aside as she entered through the door.
Just then, a strikingly beautiful young mother came running from behind and pushed her two girls into the locker room. “Peter, I do believe these ladies really want this locker room,” I said to Peter, who was already partially in the room, gesturing for him to come out towards me in the hallway. Peter promptly came out. We eventually found a bathroom we could use, and did fine. But I described the incident to Belinda as an example of how times have changed. When I was growing up, little girls were encouraged to be sweet and gentle, but I suppose the current trend is to put a priority on assertiveness. Just then, Peter chimed in on the conversation. He typed,
“Mom, i’m sorry you were offended but i personally felt ok to let them ha ve uit (the family locker room). ”
“Peter, I am truly sorry for every time I get unfairly impatient with your movement. You most certainly do not disappoint me. Rather, you refresh my spirit, my dear.”
“Just natural,” replied my little gentleman.
I share these stories with you to encourage you. We parents get so exhausted accommodating and remediated our children’s deficits. The beauty of their inner selves gets hidden, buried under the weight of their challenges. If we hadn’t fortunately struck upon the musical chairs game, Peter would not have been able to show me his eagerness to help. If we hadn’t reflected on it later, I wouldn’t have known how much he hates to disappoint me, and how sensitive he is to both how hard I’m trying and when I get frustrated. If Belinda hadn’t come along and got us off conversing about that locker room incident, I would not have realized what a courteous gentleman he is. I would have just breathed a sigh of relief that he left the locker room willingly, and chalked it up to a lucky day. But whereas I was annoyed, he was truly happy to defer to the needs of others.
When our children can’t move, can’t express their beautiful intentions through actions because of a faulty start mechanism in the basal ganglia, it’s automatic for us to underestimate them. How they must suffer with constant misunderstanding. So these incidents are a good reminder for me. To take the time to make that extra effort to pull out the electronic keyboard or bring with me everywhere that handy paper alphabet board to check-in with Peter, so he has a chance to be “seen” and understood. And to give him the benefit of the doubt that he has earned over and over throughout years of struggling that he is doing his best, that I keep forgetting, in all my impatience.
“…the Lord seeth not as man seeth; for man looketh on the outward appearance, but the Lord looketh on the heart.” 1 Samuel 16:7