We were cuddling in bed when my 6 year old asked me.
"No, Johnny. You don't."
"Good, I was hoping you would say that" he answered, and exhaled a little more loudly than I expected.
I've been trying to explain the concept of Autism Spectrum Disorders to Johnny for the past few weeks, just enough to explain the differences he is noticing in James and his friends, and as simply as I can, but it is really hard to break down into terms a 6 year old can understand. It's not bad or good, it just means your brother thinks differently than you do. He looks at something and sees it a bit differently than you do. You know how he really, really likes patterns? I think he makes patterns out of information to understand things. It's why his body reacts to touch and sound more than yours. It is also why he can pick out the band of almost any song at the very beginning, but doesn't hear you talking to him a lot of the time. And why he can cruise expertly through every level of Wii Super Mario Galaxy 2, but has asked you a hundred times if the dinosaur that hatched in your play egg in the cup of water was real. It's why he jumps and flaps and laughs while you are losing. Don't cry because you think he's making fun of you, it is just his way of showing that he is nervous for you.
Sometimes I think there should be a special diagnosis for siblings of children with ASD, they go through so much. Maybe they should be labeled as BKS (Brother's Keeper Syndrome) or AOLFF (Always On Look-out For Flapping). They are driven from appt. to appt. only to sit in the waiting room while the other one gets to go on swings and obstacle courses, they are constantly having to give in to the sibling to prevent a meltdown. In our house, more often than I want to admit, it is often agreeing to give James one extra turn at Wii because he thinks Johnny got an extra minute or trading in the last brown M&M because it is James's favorite.
The most intense example occurred just a month ago, when driving them to their separate schools, Johnny announced in the car that he had a headache and couldn't go to school. As soon as I agreed that he would stay home and made the turn to go towards James's school, James started screaming bloody murder. Nothing I tried calmed him, and it was quickly escalating. He was thrashing around in his seat, screaming and crying how unfair it was that Johnny got to stay home with me. All of a sudden, Johnny said "It's OK Mom, my head is good enough to go to school" and immediately, James calmed down. As I realized that Johnny decided a full day of school with a headache was better than what we were to go through for the next 20 minutes, I had already turned the car around to bring him there. Then I wondered all day if I started to make the turn before he even got the sentence out.
I try to make it up to Johnny however I can by playing his favorite games and reading books, but often, they get interrupted and he is disappointed and I feel guilty and torn. I'm lucky that Johnny is empathetic and perceptive (traits that may have been nurtured merely by being the brother of a kid with Autism), but sometimes I think that might make it even worse. Or, remembering times he'd given something to James without even asking when James started whining I wonder was he being empathetic, or was he merely preventing a meltdown like he'd seen his parents do? I wonder about all the times I told my friends that Johnny was the "best therapy" that ever came along, and silently cringed inside while I said it.
Then I make myself think of the day that instead of Johnny being upset that he had to sit and watch James's therapeutic riding lessons, he got a chance to ride himself. I remember the the smile and laugh as he finally got to do something that was ONLY his brother's. He loved it, and begged to ride again. It was easy to give 5 minutes of James' therapy to his brother and the smiles were all the payback we needed.
And I have an afternoon like yesterday. Johnny got home first from school and we played a game. James got home and Johnny met him at the door with "James, do you want to play that game in the yard we did yesterday, the one I made up and you liked?" James threw his backpack in the house and chased his younger brother around the yard, mimicking his play and having a blast.
It is really, REALLY hard to juggle the needs of both kids during those stressful times and I admit that I don't always do a great job at it. I realize, though, that however their roles might be reversed or manipulated because of the way that we need to help James through certain situations, brothers are brothers. They will define their own roles in order to have fun, so as long as we continue to find some way for Johnny to look like he does in these photos, we're doing OK.
He runs to make his mind still, to organize himself and to get rid of the noise from this loud, confusing world. The more he's moved, the more he's introduced patterns and rhythm into his routine. Laps around the house are a daily ritual. He's made it more complex as he's developed, but the basics are the same. There is a pattern of movement -- specific foot patterns based on whatever song or chant he chooses to accompany the run, and he can not be stopped until he is ready to be.
This is James, and this is our story.
This is James, and this is our story.