“Aunt K. used to be happy when she was young. Now, she’s angry.”
My head snaps to the side, surprised by my three-year-old son’s statement during his after-school snack. Had he gotten this from me? Undoubtedly. Aunt K., my younger sister and his only aunt, has Charge syndrome and is largely isolated from the world around her. She has no community activities, and interacts almost solely with my parents, the staff at her house, and her roommate. She and I connect less and less with each visit. The erosion of personhood is a curious thing to witness.
She used to be happy when she was young. Now, she’s angry. It’s an oversimplification that glosses over many years in the middle, but it’s not incorrect. I would not say she’s angry, though. I would say done. Now, she’s done. My son was never scared of his aunt until the incident at the diner. It was sometime last year and he and I visited; in the fall, I believe. He, my father, Aunt K., and I trooped to one of the few restaurants where she now went. We stopped taking K. out for many activities years ago, when I was in eighth or ninth grade. Her tantrums and self-abuse were too much. It never ended well. She would shout and bite one of her hands fiercely, while flailing with the other arm and hitting herself on the side repeatedly. People stared. They weren’t wrong. This was the kind of thing one stared at, it just was.
So, for better or for worse, we stopped taking her out. She’d go to the grocery store or post office with my dad, but for the most part an “outing” involved bringing something home from the drive-thru. It was an imminently anti-social affair. One notable exception? The diner.
The four of us walked into the diner and selected a large, circular booth. I immediately paused as we sat, thinking we should leave it for a much bigger party. I didn’t think much of my hesitation at the time. We ate our meals, not exactly happily but seated without incident. My father helped K. get ketchup for her hamburger. We all pretended not to notice that she separated bun from meat, hunched over, having long abandoned or lost the basic table habits she had as a child. I talked and played with my son. The expansive booth spread out before us, creating much more space than necessary for a party of four.
She snapped at the end of the meal. I have some ideas of why, but I really don’t know. My interpretations are filtered through my speculation at how I would experience K’s life – it’s guesswork to say the least and is anything but scientific. I’d seen her slipping into this state for years, increasingly isolated, less of a person, less able to be. Social isolation is an evil devil, perhaps more so for someone who can barely communicate formally.
She started shouting and hitting herself. It escalated almost immediately. My father tried to coax her out of the booth, but she was deep in the circular layout and had no intention of leaving. She had gotten lost in the space. Just like the old days, she bit her hand – those same callouses and scars, the permanent purple of the skin. She shouted. She hit herself, jumping up and down in the booth.
My son was three. And he had never seen anything like this. He was terrified. “Mama!” He clung to me.
He and I moved to an adjacent booth and watched the scene play out. There was nothing I could do. My father tried our family’s brand of broken, halting sign language to tell K. to leave, but she was in it. In it. The restaurant was silent and staring. Waitstaff. Patrons. Everyone. And, again, they were right. This wasn’t a cute disability-as-difference quirky moment. It was a 150 lb. adult woman having a full-on physical meltdown that dominated the entire space.
Realizing that we couldn’t do anything, I called one of K’s staff. She didn’t hesitate: “I’ll be there in 10 minutes.” I told my father. “She can’t get here any faster?!” he exclaimed. But it wasn’t her job to be on-call. We were in charge. And we simply couldn’t handle it.
The staff member came and got K. out almost immediately. I believe she took K. back to her house, but the details are fuzzy. My father was visibly shaken. My son was terrified. I knew we had turned a corner and there would be no more outings with Aunt K. unless we had a third adult. A strong one. If the expectation was that I could help, it was out of the question. I had a child of my own now. I couldn’t drop my own life and rush in for K. It was impossible, both physically and emotionally.
In thinking through the horror of the encounter, I am profoundly grateful for one thing: nobody called the police. Because they could have and, if I’m honest, I am not convinced they would have been wrong. K.’s actions that day were beyond disruptive. They were scary to anyone who had to watch. She was out of control. We were powerless. No longer a cute child of four or five, she did not get a pass for that. Yes, she was only physically harming herself. No, she would never intentionally harm anyone else. But, given the violence of her movements and screams, nobody had any way to know that. And I cannot blame them.
In the aftermath, I talked to my son at length about Aunt K. He was terrified. A shy child who cringes at the sound of a yell and chokes up if another child cries, it was too much. I explained that Aunt K. cannot talk and she gets frustrated. That she would never hurt him. That her feelings are directed at the world and at herself, at being locked inside for no good reason and unable to articulate even basic things beyond “want French fries” or “go car.”
I talked at length about all the things they had in common. I loved them both, I reminded him. She loved candy and had a secret stash all over my parents’ house. Didn’t he like candy, too? Aunt K. always wanted to rest in their family room with old “Sesame Street” DVDs playing. Didn’t he want the extra screen time? I tried to frame Aunt K. as an in for these secret indulgences – sweets, tv – that he knew were restricted otherwise. I focused on what they had in common, not the vast differences that anyone could see.
But my son is three. These were heavy, heady things. How much could he understand? He continued to cower whenever he saw Aunt K. He refused to go to the table for family meals, my parents sitting silently and awkwardly with K., the three of them eating, as he and I waited – hungry – hiding on the stairs or in the family room. He would cry if he got too close. She was officially, without a doubt the most violent person he had encountered. It was sad, but there was no sugarcoating what he had witnessed and I saw no sense in denying or talking around it.
Once he and I got home, he kept bringing it up. “Aunt K. was very angry.” “Aunt K. yelled.” I would sigh and try to explain things again, shifting my language in an attempt to help his young mind digest the concepts, careful not to say too much.
And then a strange thing happened. One day, I overheard him playing with two figurines from a toy playground set. One was supposed to be him, the other was Aunt. K. “Come on, Aunt K. Let’s go!” he exclaimed, holding the dolls and running across the room to his beloved train table. “Aunt K., let’s play with trains!” He was pretending that the doll was Aunt K. and using it to interact with her in a way that simply was not possible in real life. Through the dolls, they could talk and play. He could begin to understand her, to build a relationship with his only aunt. He did this for months. I’m not sure when he stopped.
My parents were nervous when we visited at Christmas. Did Aunt K. need to stay at her house the whole time? Did we need to begin celebrating Christmas without her? Was she “ruining” it for my son?
While he couldn’t exactly play with his aunt, he was no longer scared. He didn’t run or hide when he saw her. Instead, he’d grab my hand and smile. “That’s Aunt K.” he would whisper, as if we were sharing a secret. She loved candy, he loved candy. She loved TV, he loved TV And that was enough.
The other day, he announced “I need to see Aunt K!” This was before the comment about how she was once happy, but now she was angry. She had clearly been on his mind. But he no longer worked through it with his doll, instead broaching the subject – in his way – with me.
I offer this story as a standalone. There is no bigger, deeper message. Or maybe there is. I will say that a curious thing happened here. The doll. The restaurant. The subsequent interpretations by a very quiet three-year-old. She had clearly been on his mind. And I’ll leave it at that.
Note: The day I wrote this, my son saw the Aunt K. doll and announced “That’s Aunt K!” When asked what he thought about her, he replied “Aunt K. is cute.” Later that evening, we FaceTimed with my parents and he immediately asked where Aunt K. was. He was disappointed to hear she was not there. A few mornings ago, he had announced “I need to see Aunt K.” I have no answers for any of this nor can I offer much of an interpretation. But there’s something here to be learned about how he processed this and how he has come to interpret her difference (or not). I just wish I could harness it.