On Monday, I had perhaps the most frustrating IEP meeting of the year. It was a transition addendum, where we formalize the services going forward for middle school, in this case for a kind and diligent young man with a profound auditory processing disorder. The parent had come in initially with only one possible school in mind, based solely on student test scores. That school had no appropriate special education services. Over the course of several months, we had persuaded her to possibly consider a program tailor-made for the needs of students like her child, knowing that it would only be to her liking if the test scores lined up there, too. I went into it feeling pretty good—my program specialist had essentially moved heaven and earth to snap up a coveted spot at the most highly regarded site. She delivered the good news, and the parent looked at her as though she had stepped in something.
“I just think, the special education classroom you’re proposing for him is in the 7th grade building. And he’s in the sixth grade. So, what I think is, he should be in general education for sixth grade, and then, after a year, he can be in that program. So I’m going to decline special education for now.”
I am curious as to what my face looked like at that moment, wondering exactly how much WTF showed up on it. My program specialist stepped in before I had to, smoothed it all over. She nodded empathetically at all the right places, flattered her with praise for her advocacy for her son. Led her, gently and skillfully, towards compromise: the child would spend only two periods in the abominable seventh grade building, just enough to keep the special education teacher on record as the case carrier, and the team would then be able to re-assess the situation in October of the coming school year. I am terrified for this child that it won’t be enough, but it’s as far as mom is willing to move on her idea of a child who can wait for his needs to be met when the building lines up with them.
“It’s about control”, my friend and colleague Laura says later. “So much of having a child with a disability feels like it’s incredibly out of your control; it can be hard not to cling to the illusion when you get it.”
The next day, I had another IEP meeting, this time with Juan Carlos’ family. Oscar and Linda are about my age, a little young for the children they have. Juan Carlos’s little brother slept in Linda’s arms; when he woke, later, she played with him while simultaneously trying to listen to the translator, then nursed him discreetly under one of the fluffy brown blankets you buy at the drugstore. Oscar speaks English about as well as I do Spanish: we can, for the most part, get by without the translator, but Mom would be left behind. Juan Carlos himself speaks both languages fluently—as I looked from his pictures on my computer screen, to his father, to his mother, to the translator, I remembered the story Oscar told of why he spoke them.
When Juan Carlos was very small, I knew there was something different about my child. I knew that he’d need help. I decided I wanted to get the best help I could for him, and I thought, the people who could do that, they might only speak English. So I learned English, to speak it to him, so he’d know it. To make it easier for the people to help him. With my wife, I speak Spanish, but only English for my son.
I thought also of the stories that Oscar didn’t tell us—how Juan Carlos, every time at Lunch Group, pedantically introduces himself. “My name is Juan Carlos, and I am 9 years old, and I was born in Mexico, D.F.” It is a safe assumption that Oscar and Linda moved north, perhaps illegally, because of what Oscar wanted his son to have. Linda cleans houses; Oscar paints houses. They live with cousins in a small apartment, all sharing one room. I decided I wanted to get the best help I could for him. They let go of everything, in order to have that.
“It’s about control.” Laura says, and I believe her. But there is so much in life—exceptional or otherwise—that cannot be within our control. At the end of the day, it is also about trust.
Oscar trusted that his son could be helped: living in Mexico with an autistic toddler, he believed that a life was possible for Juan Carlos that was bigger than the ideas of the people around him. He and his wife trusted each other, trusted that they were strong enough to take the leap. Every day, they send their son to school because they trust he will learn there—every day, Juan Carlos repays that trust with interest, by trying his best in a world that doesn’t always make sense to him, believing us when we say that the work is worth his effort. “I don’t expect”, Oscar said once, “that my son will ever be like his cousins. But I believe he will be the best he can be.”
I don’t see that kind of trust, when I talk to the mother of my fifth grade student. In some ways, I haven’t earned it. We haven’t earned it. She comes from her place of wanting absolute control from her own past experiences, raising two boys before this one who also had learning disabilities. Needing to fight to get their needs met. She makes, I think, an error that I make all the time–going into a new situation with the baggage from the other ones.
She clings, it seems to me, to the things that seem controllable. The school that something happens in; the place the building goes. She prints out a list of every middle school in our district, neatly highlights the API of each of them. Will consider only 3. The program her son so desperately needs, now, is two hundred feet from the building she wants for him. It seemed, for a brief moment, that this would be the breaking point. That she didn’t want any of it, if she couldn’t control that.
But ultimately, she was able to have a little trust, too. My program specialist was able to coax out of her the fear behind all of it–that her son would get stopped and asked where he was going, that people would know he was a sixth grader, and he’d be stigmatized by going to the “wrong” building. She assured her that this wouldn’t be as much of an issue in August as it seemed to her right then, and the child’s mother trusted us enough to sign at last.
In the battle between trust and control, I know where I line up, most of the time. I know how utterly helpless I felt, during the moments of that meeting when it seemed likely that nothing I said was going to stop one of my parents from making what I saw as a horrible decision. I know how hard it is for me to say goodbye to my students when graduation comes, and I have to pass them up the ladder to the middle school team. I know how hard I work in lunch group to cover every eventuality, from height of chairs to who gets the talking stick first, in order to maximize what I see as success.
But I can think, also, about Oscar and Linda and the distances they’ve covered. I can realize how far, figuratively and otherwise, this family’s gone on trust, the way they’ve been able to control what really matters–the love and commitment that keeps them all together, the dream that they have for Juan Carlos to become his best self. I think that’s the crux of it, really: when you know what to hold on to, you can let the other stuff go.