Ethan loves school. He likes the structure and the predictability of the bus coming, his morning activities and the school schedule. He likes that Art is on Tuesdays and that his schedule is placed into neat little boxes on a paper. It makes sense to him.
What he does not like is the willy-nilly nature of lazy summer days. To say that he doesn’t like it is one thing. The truth is, it’s not just that he doesn’t like it, the nature of his disabilities make the plethora of activities occurring at unpredictable times an anxiety producing affair. Transitions of any kind and his oppositional nature make moving from activity to activity a very difficult proposition – yes, even if it is something he would like to do! When he says that he is interested in going to the library, it’s all ‘hurry up guys! he says he’ll go, better get in the car before he changes his mind’.
It may sound like he’s just a spoiled brat. But this genuine malfunction. The ways some people are terrified by heights or spiders, his opposition to moving from one activity to another causes a defense mechanism that is very difficult to overcome.
The way his attention spans functions is another great stumbling block. He either seems to settle in to something, like painting or cutting out snowflakes, or rearranging the living room, only to leave 3 minutes later. Next, he might over-focuses on an activity (like ‘cleaning’ his room) for an inordinatre amount of time and can not be swayed to consider another activity. When he decides that he is going to ‘play ESPN’ for a while, complete with an interview location, he leaves a wake of accoutrements all over the yard. Let’s not talk about the show the neighbors must see when he decides he’s Gandalf.
Having Ethan home from school is not difficult because Ethan is difficult – it’s because there are 3 other boys involved in this cocktail of fun and frivolity. Ethan teases Sean and Sean feels the need to defend himself vehemently. I remind him that we just don’t need to listen to him – but his response is still ‘you’re bald, E!’ Nice. Ethan calls me old, and Sean insists I am not. Thank you, baby.
Ethan’s other super-power is his extrodinary ‘gift’ of perseverance. This is not like regular-kid-bothering-you-for-something – trust me, I have three other kids for that. This is the ability to ask for an iced coffee and a cookie 4,300 times in two hours until I decide that it is actually something I want to do. I really need to pitch his skills to the people who run Guantanemo Bay, I really think he could make anyone do anything! A new type of torture, for sure.
We have a ‘Summer To Do’ board on the wall with all the things we’d like to see and do this summer. I have a mental catagory of things I’d like to take Ethan to, the things that Ethan would like, and things that will wait until E is safely and happily back to his days at Midland on July 5.
So today we are off on a roadtrip to Cabela’s. The real excitement is wondering what could happen – not on the trip – but with Ethan 🙂