Start by remembering that high school is a circus. The show begins a few minutes before the bell rings, when you notice the car with the TOONCES license plate, as the kids begin to trickle out – stiffly in JROTC uniforms or jauntily in whatever footwear is a la mode.
Seconds after the bell, they pour out, as if they had been pressed up against a dam, now breaking free. They are oblivious to cars, playing their music, saying their things to each other. There are roughly 2,000 students here. They rush from the building at the end of the day, shimmering, glowering, glum, exuberant, and soon emerges my own daughter, in a gray fleece jacket, talking to me or to herself, gesticulating, but pleased to be among this adolescent swarm.
When you have a child with an IEP you are reminded (by people who are on your side) that the school is only required to provide an education in the least restrictive environment. They are not obliged to do anything to “maximize potential” and if you express that as an expectation it can be held against you/your child’s IEP. They need to provide, metaphorically, an adequate vehicle, a car, you are told, but not a Cadillac. However, defining adequate can be as hard as defining optimal.
And so, for the most part, the fact that my daughter is making her way out of the building at the right time of day, with her bag and her jacket, is the picture of success. She has completed another day of school. She is surviving the system. She is not in trouble. She is not being bullied. She is not freaking out. When she uses the word “hereditary” at dinner, we know this must be a topic in science, but much of the day remains a mystery. We see only the students entering and leaving the building. A few times we have been called in to get her. A few times she has been accompanied out by her special ed teacher who would deliver the kind of news that becomes–in the years of having a child with special needs–par for the course. You know, the phone call. Only, because of the IEP, they have to make it work. Or add it to the list of reasons why the student has an IEP in the first place.
This is not a screed against the school or the system. It is what it is. And it is imperfect. But so, it seems, are all of the other “systems” that will follow, in the very unjoined up, confusing, and arbitrary way that people with disabilities are provided for in our society. Ultimately, what makes or breaks the experience are people who provide experiences that are exceptions to the rule.
The best thing that happened to the older daughter in 10th grade was that she took drama, an elective, unconnected to any requirement, but simply because it was something she might actually enjoy and because the teacher came highly recommended.
The two of them hit it off immediately. The class, following his lead, accepted her, was supportive, and, when auditions for the spring musical rolled around, he encouraged her to try out. I sat in the back of the auditorium and was amazed as she ran into this mass of girls and hugged and screamed with them until this teacher imposed a hush and got down to business. She was cast as a lady-in-waiting, in a tongue-in-cheek fairy tale.
There were a few bumps in the road, including an email that began, “I thought you would want to know,” when, of course, in no way did I want to know, but knew that I must read on.
My husband and I end up becoming these adults who take turns hanging around, who lurk, kind of out of the way, kind of in the way. I sit in the costume shop and try to be useful. When I introduce myself as my child’s mother it seems that everyone knows her or knows of her.
Other ways that high school resembles a circus are the feats of courage that must be practiced, the befriending of an odd girl by the cast members, and the tightrope walk she does, where so many missteps of one kind or another could have led to a swift and sudden fall.
The rehearsals are long and there are times when she calls out something inappropriate, but the teacher is unfazed and somehow keeps her in line and on track. She pays attention onstage, night after night, sometimes until after 10 PM, which, if you know my family is very, very late for all of us, given that we are annoyed by calls after 8 PM, at which point we are usually tucked n bed reading.
The show goes better than we could have hoped. It is better than a car. It is the Cadillac you are not allowed to hope for. At any moment it could swerve off the road and smash into a tree and yet it doesn’t. We sit backstage and hold our breath. We embrace boredom with the relief that nothing has happened. And by that I mean nothing bad, because a lot that is good has happened. I admire the way the other kids have taken her in, how nice they are. Now, when she comes out of school at the end of the day they call goodbyes to her in the parking lot.
Friends come for opening night. The adults in the day program at Merrimack bring her flowers. Don’t let them down, please, please. On closing night, a big group of friends from her dance class are there. It is because of all the experiences she has had with them, all the shows they have done together, that got her to a place where she was able to do this, too. They are happy to see her, she them. I feel grateful and undeserving of all of these friends who have turned up to support her.
It had seemed it would go on forever. Our lives have been subsumed by the play, and then it is over. The amazing teacher is retiring. The kids are emotional. Everyone is tired. Princess Winifred’s feet are bleeding, but she says it doesn’t matter, she just wishes the show could keep going. My daughter is not sure how to process all of her feelings.
We go to strike the set. I think it’s important for everyone, including her, to see it be over, to see the walls of the castle literally be torn down. We return that evening for the cast party and she tells me she wants to be with her friends, doesn’t want me in the wings, lurking.
There is music coming from the theater. She rushes in. The girls are onstage dancing in a group, arms in the air. They call her name and she enters. It is an image I will keep in my head, of her dancing in the middle and disappearing, being absorbed in a way that we never thought would be possible.
The Other Side 