Tuesday, August 10, 2010

Teamwork


I clutch John's hand as we enter his brother's school. We are here to pick up Sam after week two of an after-school soccer program, a program I thought would be great after hearing that a few of his classmates were enrolled. In the five minutes it takes to find the gym, no fewer than three teachers greet us, see John, and say "Hi Sam!"

Their faces look puzzled and I watch them trying to sort it out: Sam has a twin? Why didn't we know Sam has a twin?

We find the gym and look inside. Eight or so boys running between two nets, a coach yelling encouragement. There are just a few minutes left and more parents are filing in behind us. John takes in the open expanse, the rolling ball, and yanks me inside. Before I can get a good grip, he darts free. At first he just runs the perimeter of the gym, but then he begins to weave in between the group of boys, his eye on the moving ball.

Sam spots him, stops playing and yells, "Coach C! Look, it's John! He's my brother! Can he play?"

Coach C pauses, glances at me. I mouth Sorry! But he says, “Sure, John, come on!"

John laughs and runs in and out of the group, flapping excitedly. Coach C calls the group over for a huddle but Sam won't join unless John does too. He's pulling him and pulling him and I am keenly aware of all eyes on me: the coach, the kids, and the parents.

I weigh my options: go and hoist John out of there and risk an epic meltdown or go help him sit in the circle with the other kids. I opt for the latter and as I near him, John yells all on his own, "Sit down?" and takes a seat with Sam. Relieved, I kneel behind him.

The coach talks about teamwork and the great job they did. Sam interrupts, "And my brother did really great too!" He grins at John and John throws his arms around him. At first I think John is just excited, and wants to pull Sam to the ground. But then, no, I see John's grin and realize that he is genuinely happy to be here, sitting in this gym with his brother.

We link hands to leave the gym and Sam says, "Mommy, I want John to come to MY school, not his school, okay?"

I am too choked up to reply.

----

If you think of the autism spectrum as a seesaw, then I have a boy sitting at each end. Sam is quite social, talks non-stop, and never has trouble making eye contact. John prefers his own company, flaps, and didn’t say a word until he was four. When they were diagnosed with autism, I found it really difficult to believe that they had the same diagnosis. How could they? They were so different. I still had yet to learn that when you’ve met one child with autism, you’ve met one child with autism -- even identical twins.

Of course I didn’t know it then, but they were more alike than different. Neither of them had really babbled, neither had said a word by the age of two. Neither waved, pointed or clapped. Neither responded to his name. But Sam would seek us out with his deep brown eyes, he would laugh when he saw something funny and wanted us to share it. John was always more interested in following lights and shadows down walls and across counters. He loved to be held, but would yearn and stretch to be back at his work.

The boys began attending a class with other two-year-olds on the spectrum through our county’s Infants & Toddlers program. Just two weeks later Sam started to talk. At first it was the alphabet -- he’d recite it over and over. He found alphabet cards with pictures on one side, the word on the other, and memorized them. We’d awake in the morning to the sound of him spelling in his crib. His language was not terribly functional but he was a sponge. By the time he was three he could read and wherever we went he’d sound out new words.

John made very little progress, and the early intervention team decided he needed more intense therapy. We began a 15-hour-per-week home ABA program to teach him the most basic skills. We upped his speech and occupational therapy. We studied the Hanen More Than Words system to try to get him to engage with us. We struggled to bring him into our world and at times joined him in his but to little effect. Where Sam had seemed to skyrocket out of the difficult parts of autism, John had little interest in doing so.

What worked for Sam did not work for John.

Today Sam is mainstreamed at our elementary school while John attends the autism program at another school. Sam’s diagnosis is now "high functioning autism" or "HFA" -- he's a quirky kid and he still has issues, but he’s academically gifted. I am told that John is "very verbal" but he chooses not to talk unless motivated, and it is hard to motivate him. We know he can read, but he is more interested in the computer and Sesame Street and lining up blocks. I still don’t know what he thinks or feels about the world but I do know he is happy -- his smile is a song.

He and Sam share a special bond.  I once worried it would never exist, but it’s more and more evident every day. The most beautiful sight is John throwing his arms around his brother because in that instant his face betrays him: he is very much aware. In that moment I see love painted across his face. The connection John has with Sam makes me believe that he will be okay, that they will look out for each other, and that one day, John will straddle both worlds -- even while I recognize that he’ll never completely leave one.