On Theos first day of summer camp, I didnt follow directions. I didnt label which foods in his lunchbox were for morning snack, lunch and afternoon snack. Instead, I told one of the lead camp counselors that Theo, who packs his own lunchbox, knows what he eats when, so they should just let him be in charge of his food.
When I picked him up, it was clear that hadnt happened. Someone had decided that Theo shouldnt have his corn flakes at morning snack, making him upset and frustrated. At 12, Theo expects a certain amount of autonomy and rightfully so.
He runs into this problem often. His communication skills are severely delayed, and most adults make assumptions about his cognitive skills based on his verbal abilities. It usually takes them a few days or weeks of working with him to realize that hes actually a smart kid whos quite capable of making many decisions for himself, thank you very much.
All parents and adults who work with children have to figure out when to be in charge and when to be in control. Being in control means Im making the decisions and am imposing my will on my sons. Sometimes its necessary, like when their safety or my sanity is at stake.
Being in charge is establishing that Im the boss and setting certain expectations and limits, but giving the boys choices and leeway to make their own decisions.
That means that Theo, who does his own laundry every night, gets to choose what he wears, even though he wears some outfits over and over while others collect dust in his closet. Why wont he wear certain clothes? I have no idea. Maybe theyre uncomfortable. Maybe he thinks theyre ugly. Those would be difficult concepts for Theo to express. But he doesnt have to give me a reason because its his body, his clothes and his choice.
It also means that when he says he doesnt want to wear his jacket, I have to respect that. I may be cold, but his body temperature is different from mine, and the only way hell ever learn to judge whether or not a jacket is called for is to make that choice himself and enjoy or suffer the consequences.
This probably sounds elementary to parents with typically developing children, who constantly push for greater autonomy. Helping them learn to make good decisions and to be responsible is one of the fundamental jobs of parenthood. Good parents know that process involves sometimes letting kids make mistakes.
But children who have disabilities often have to contend with adults who want to be obsessively and oppressively in control. Some children (and even adults) with autism are told what to say, what to do and how to feel every moment of their day. They are never allowed to try something new and potentially make a mistake or heaven forbid make a mess.
Even though my sons have autism and significant developmental delays, my job responsibilities are the same as any other parents. I need to nurture their confidence in their own abilities, teach them that their ideas and opinions matter, and cultivate a sense of responsibility.
Developing in them the expectation that they can make decisions about their lives and that others should respect their choices is perhaps the most important thing I can teach my sons. That understanding of their autonomy will empower them to stand up for themselves and to be the difficult kids in situations where they are not being respected. It will help to protect them from abuse throughout their lives.
Sometimes that gets tricky. The last time I took Kenny, who is 14, to the pediatrician for a physical exam, he absolutely refused to take off his pants. The doctor tried to convince him that it was OK, that he just needed to check to make sure everything looked healthy and was developing normally. But Kenny was not having it. He flat-out refused, to the doctors frustration.
I tried to talk Kenny into cooperating, but I really didnt make that much of an effort because inside, I was cheering for him and his decision to assert his autonomy over his body. It was a disruption, and I will have to work on teaching him about whats expected in a doctors office so hes more comfortable next time.
But I celebrated his determination and insistence that his decision be respected. No matter the degree of his disability, that is his right.