And there I was, debating with a teen boy who is mature and bright enough to know what he wanted to do for his homework but who also signs his homework "Fireman Max." Dave hit the nail on the head this weekend about parenting Max when we were out to dinner and we started talking about Max's stem cell infusion, which he got when he was 6. We'd both really liked the pediatric neurologist who had examined Max before the treatment. "I can see the brightness in his eyes," he told us. Dave remembered a comment he'd made: "Parent him as if he was a child of different ages," he said. He knew that Max's development was coming along at various levels.
The same is still true, except it's trickier. In many ways, Max is like any other teen—he's got a mind of his own, he can eat copious amounts of food, he's interested in exploring, he likes to test limits and he'd like more independence. He is learning to advocate for himself, especially when it comes to his allergies. The other night, I bought a carrot cake for my mother-in-law's birthday. "Let me see if it has nuts in it," I said as I went to check the label. "Yes, it has nuts," Max told me. Sure enough, it did. "See? I KNOW!" he said. It's his favorite phrase, besides "I told you!" and "I'm moving to Orlando!"
Yet in other ways, Max does not act his age. I can have a conversation with him, but he does like to repeat the same phrases a lot. He understands abstract concepts like time, death (to some extent) and what is right and wrong, but not history, government or math so much. He has firm opinions about what he likes to wear, but isn't so motivated to learn how to dress himself. When I take him to programs where staffers are not familiar with him, I tend to tell them that his chewing is toddler-like. I don't mean to be infantilizing, but Max could choke on the same foods that are dangerous for little kids—popcorn, marshmallows, grapes, chunks of hot dogs, carrots or meat—because of his oral-motor challenges.
The hardest times are when he melts down. Being rebellious is a trademark of teens, but Max's responses can be on the immature side. And then I'm dealing with an angry teen acting like a young child. For some reason, Max does not like barbecues (you'd think he'd enjoy them given the presence of fire and smoke and his firefighter aspirations but, no). Sunday, we decided to have one and he stood in our kitchen wailing and repeating "I HATE BARBECUES!" After some backing and forthing, in which I kept noting that the rest of his family wanted a BBQ, he took consolation in the fact that he could have mac 'n cheese. Although throughout dinner he kept grumbling "I hate barbecues."
Encouraging Max's independence is also challenging—it's the parent equivalent of walking a tightrope, because even though I want to pull it off and I'm careful, I worry about missteps. In the last couple of months, we've let him go to the movies alone twice, somewhat nervously (us, not him). Both times, he saw Incredibles 2, his new fave. The other day, I was home with Max and Ben and needed to get stuff at the drugstore. Max really wanted me to leave Ben at home so he could watch him. I knew that wouldn't be safe for either one of them. When I said no, Max said "Awwww" and I could tell he was really disappointed. Our compromise was that later on, he alone got to watch Ben playing on our front porch.
"You're a great big brother!" I told him, and he beamed.
Have you seen this! A girl with a prosthetic leg made Miss Italy final! https://www.thelocal.it/20180918/chiara-bordi-miss-italy-finals/amp
ReplyDeleteAs frustrating as it might be for Max to not have all the independence he wants the fact that he does want it will really help him moving forward. If it's any consolation I saw parents leave little kids with 13-16 year old typically developing siblings and it just did not go well. Maybe it would help Max to know that many kids his age aren't left completely alone with babies and toddlers?
ReplyDeleteIt hurt me when my sister would not leave my nephew alone with me and I was 20. She was overprotective with everyone but there was that added sting of bringing up my disability (I had taken care of young children before and it obviously was not an issue). Ended up taking me years to fully bond with my nephew because of this. He happily stays with me and my partner now though.