Last Thursday, I opened my e-mail in the early morning to two e-mails from the school, or, at least, from people at the school.

In the first, a staff person wrote to me from his/her home e-mail address and said that recent communications from the school s/he had seen did not make sense in light of other similar cases—i.e, it was clear that I was being picked on and that I should consider getting an advocate and asking the advocate to come with me to the next version of the IEP meeting. I cannot tell you how affirming it was to see an e-mail from an insider after so many weeks of feeling like I was crazy for requesting very simple things: notes, in a place where I could access them; assignments, a week in advance.

And, I got another e-mail from S’s special education advocate. I needed to either sign and say I agreed with the IEP or sign and say I disagreed with the IEP. My 14 days are almost up, and when they expire, the new IEP will go into effect no matter what I’ve done.

I responded by simply stating that I needed more time to think about what was best for S’s education, and left it at that. It felt good to put something off for once, rather than responding with a knee-jerk reaction. I think in most cases my knee-jerk reactions have actually been the right reactions, but I don’t think they have always been executed in the most effective way. I hate the idea of being tactful, careful, calculating--but I realize now why so many books about parenting special needs children advise us to be.

The day degenerated after that: a near-suicidal student reaching out for help, another student in deep grief, several students panicked about their work and progress in the class, meetings and more meetings with bad news about our scary budget situation that continues to threaten my job. In short, I got very little work done.

And then, suddenly, in the midst of my trying-to-work, I realized I’d left a telephone I needed to return at my last conference call in the student center. This turned out to be the greatest of gifts.

On my way through the student center, I ran into a woman I love dearly but whom I never get to see. She stopped me and asked how S was doing. Usually when someone asks this kind of question—particularly someone I don’t know well—I just say fine, or I tell a funny story that captures the positive, albeit wacky, parts of her personality. But for some reason I said, “Not so well. We’re having a hard time right now.”

“How old is S again?”

“15.”

“Fifteen? Oh, god, those were the worst years of my life. And of my daughter’s life. No wonder you’re having a hard time.”

No, I explain, S is different. She was abused for 10 years, then spent five years in non-committal foster homes. She’s not really emotionally 15. She has, as they say,
“issues.”

“Still.” D insisted. “She’s 15.”

She went on to tell me that she gives her daughter her teenage journals each year. When she turned 13, she gave her her 13 year old journal; at 14, her 14 year old journal, etc. “I vet them first, of course,” she said. “And you know what I wrote in the 15-year-old journal?”

“What?”

“That I never, ever wanted a daughter. So before I gave her that one, I had to explain why. I was so miserable then, Argie. Everything about me, my body, my mind, was wrong. So of course I didn’t want to care for another life like my own, to put someone else through the same kind of misery.”

“So what did you say to her?”

“I just told her the truth. When I was 15, I didn’t want a kid who would suffer as I was. And now you’re suffering, and it’s hard to watch, but I know you’ll come out on the other side as I did.” D sighed. “I’m telling you, this is all normal.”

“I don’t think it’s normal,” I replied.

“ Is she refusing to do anything you say?”

“Yeah.”

“Is she clingy one moment and then totally distant the next?”

I can only imagine what I looked like, mouth gaping open. “Um, yeah.”

“Doesn’t want to do whatever it is she has to do, homework, chores, whatever? But then sometimes suddenly becomes super-responsible and super grown up?”

“Yeah.”

D nodded. “OK, then. You have a 15 year old daughter.”

For some reason, my eyes filled with tears. “I didn’t have a mom,” I said. “I think my perspective is totally off. My mom was sick from the time I was 8 until 15, and I loved her and wanted to be by her all t her all the time. And then she died. I’m sure I treated her badly, but I don’t really remember it.”

“You didn’t make it to the age when you would have treated her badly,” D said. “That starts at 12, 13, but your mom was sick. So it was different for you.”

I let the tears spill. We were standing in the middle of the busiest place on campus: the student center, right outside the cafeteria. I realized a former student was sitting at the information desk, trying to work her job, but too intrigued by our conversation to not listen. I thought these thoughts and immediately realized it didn’t matter. I was who I was, and I was supposed to be having this conversation, here and now, with this woman I don’t know well.

“I don’t know what’s normal and what’s not,” I said, incredulously.

“Well, then, honey, you just come to me when you want to know what’s normal and what’s not. But I’m telling you, S sounds like a normal 15-year-old girl to me. I don’t mean to downplay her horrible past, or how immature she is, or anything else, but honey, she’s 15.”

I went on with my day, a little more focused, a little more willing to admit that maybe everything I thought I understood wasn’t totally accurate. I got at least a little work done.

Thursday is the night S is with her college buddy and I work late. I couldn’t concentrate. I opened my facebook account to find out about a friend who recently had an operation. I promised myself that was all I’d do—the e-mail list I’m on had been eerily silent, and I’d not heard about the outcome of the biopsy. No news. But now I was on facebook, and it had been at least a week since I’d checked my account, so of course I was also greeted with a number of other posts and updates, and I got lost in it all. A message from someone in a dissatisfying marriage who seemed to want my advice, though she didn’t ask for it. A message from an old student who wanted to update me on his life. Another student, puzzled over a recent interaction with friends, needing to vent. And so on. It felt good to spend some time attending to people I care about who are not, at this moment, fighting with me about anything, but at the same time, I realized I was exerting more energy helping others. I wasn’t getting my work done. I wasn’t taking care of myself.

In the midst of this, a friend of mind popped up on facebook chat. He owns a shop in town, which S had apparently visited with her college buddy earlier in the week. He had a dress for S’s first formal, but she would need spank (and I had no idea what these were) if she really wanted the dress.

Oh, god, the formal. It’s in a week. None of her friends are going, but she wants to go, and she wants me to chaperone. I am going to do it, of course, but I’m also terrified for her—showing up at a formal alone is one of those things that my nerdy, self-conscious 9th-grade self would never in a million years have done. And yet, she wants to go solo, dressed up, and I can’t help but be proud of her at the same time.
Anyway, I went ahead and asked this fashionable, flaming friend of mine what spanks were—among other things. We chatted for awhile. Eventually, he wrote, “I really adore her, you know.”

No, I didn’t know. My eyes filled with tears.

“I’ll do her hair and makeup for the dance,” he went on. “And you know, she’s really interested in fashion. I can’t pay, but if she wanted a little internship in the summer, I’d totally do it.”

More tears.

“We’re going through a rough time right now,” was all I could manage to write back.

“Aren’t we all?” he responded. “LOL.”

Oh, god, I hate chat and text language, even though I’ve forced myself to learn more of it. But this time, I felt a lightness seep into my body, and I actually laughed.
We made plans: we’d go get what she needed for undergarments over the weekend. He had specifics: got to one store, get measured, say you’ll think about it, then go to another store for the cheaper version of the exact same thing.

Then we’d go to the store on Tuesday to try out the dress with the new undergarments. Then, on the day of the formal, he’d do her hair and makeup, on one condition—that I come and watch and learn.

OK, I’m a pretty typical 30-something (OK, almost 40) dyke, and I hate makeup and clothes and pretty much all of it, but I’m willing.

“She needs you to be there,” he wrote, and he is so right.

Later, I talked again to D, who told me her outsider daughter had gone to prom alone. “I drove her around, you know, from place to place, because prom is this complicated series of events” she said, “and then at one point, she got into the car and looked down, and I told her I could either drive her to the next place or I could take her out to eat. Do you know what she chose?”

“Out to eat?” I guessed.

“Yeah. She’d had enough. You just have to be there and know when they’ve had enough,” D said.

Maybe the best parenting advice I’ve ever received I got from a woman I don't know well and from a gay man who has never had children. God knows I’ve read enough books on parenting special needs kids, gone to enough seminars. They were all helpful—don’t get me wrong. But really, all along, there was all this wisdom right here, in this little town among people I see every day.

"I'll wait as long as it takes."

From the beginning, I knew that one of the most difficult parts of my job as the parent of a special needs kid was that I needed to be an advocate for her. People would misunderstand her, treat her poorly. People would shrink away from her story, not want to hear the details. Kids would bully her, and she’d push back, and I’d have to be clear about how to hold her accountable and advocate for her at the same time.

And, then, there was the issue of her education.

I was determined to ensure she would not be underestimated as she had been for the first 14 years of her life, sitting in a resource room all day, doing, as far as I can tell, very little. I will never forget how, when I was finally permitted to talk to S’s teacher, she explained over and over how sad S’s plight was, how badly she’d been abused. “But how well does she write?” I’d ask. “How severe is her learning disability in math?” There were no answers to such questions. Her IEP, when I finally received it, gave even fewer answers. She’d simply refused, in many cases, to answer questions on any of the many psychological and educational tests they tried to give her. As a result, she was labeled.

And, yes, the label is functional and actually works to our advantage. I assumed that at her new school, there was a shared understanding of her disabilities—that her special ed advocate, also her math, English, and study hall teacher, at least, had bothered to learn about how trauma affects learning. I operated under the assumption that if I went in saying what I wanted her new IEP to be, and if I stuck to my guns, it would happen.

And it did. The school did what I wanted, praised me for being such a hands-on, exemplary mom. When I e-mailed the advocate with a question or concern, she answered immediately. We teamed up on behavior issues, educational issues. S won the most improved student award last quarter.

Sure, there were problems. Her advocate had sent home an inappropriate religious poem, which upset S, but we worked through it. There was a religious conversation in the Resource Room during which the advocate contradicted something I’d taught S about the religion in which I was raised, but we worked through it. There were times when assignments weren't clearly laid out in her assignment notebook. I realized quickly that I needed some extra help for her in math and science, and after many requests to change the level of support for these classes, eventually, I hired a tutor. Through all of this, everyone was so...nice.

And then, there was the time when S. was surfing the internet during English class for information about her biological father…and that’s when I started paying attention.

What were you doing on the internet?

I can go on whenever I want. I was taking a break.

How long of a break? Why?

I didn’t feel like working. Most of the class period.

Yikes.

I went to school that day because S. called me, crying. We talked in the Resource Room with her teacher, who said idiotic things like “You need to stop thinking about this and try to be happy,” and “I was also adopted as an infant, so I know how you feel.” I was offended, angry, sick to my stomach. But I wanted to be nice.
And then the IEP update came home, claiming S had completely or mostly met all of her goals. Exclamation point.

Yikes. Definitely not true. S studies for hours for tests. She has a science tutor. She can’t keep her own assignment notebook. She can’t take notes in class. She can’t tell me on a given day what happened in class, what the point of the class was. Social interactions confuse her.

That’s when I started asking questions. How is the note comparison going in study hall? I asked S, innocently.

What note comparison? (In the IEP, I’d advocated for a note comparison session each day—put S’s notes and the paraprofessional’s notes side by side, discuss the differences, calculate the percentage of correctness. This hadn’t been happening all year).

You got an A in English, so you must have worked really hard on that paper you wrote in five minutes at home one day, pulling random facts from the internet and throwing them on the page.

What paper? Oh, that paper. Um, I never saw it after I gave it to the teacher.

I knew my rights. I requested a new IEP meeting. I wrote up a safety plan. I created a notetaking page, an assignment page. I asked for notes to be put in a folder in the main office that I could pick up. I said I would take over the note comparison, keep her home for study hall. Panicked because she was unlikely to pass the 9th grade standardized English test, I also pulled her out of English, deciding she'd be better off being homeschooled for that as well.

By this time, she was having trouble getting through the day anyway. Flashbacks are frequent; it’s been almost a year since she got here, and she finally feels safe enough to work through things. I wanted to be nice. I decided to use this as my excuse for why I wanted to pull her out of the first two periods each day.

I blamed myself for everything. I should have been paying attention. But I so wanted to be nice. I wanted to get along with S’s advocate, even though she’d broken boundaries multiple times, even though she regularly talked down to me in e-mails, writing things like “S is such a special girl!” when I’d asked a question about why I didn’t have notes from science class.

And then, somehow, things went terribly wrong. I made a mistake advocates for special ed parents say you should never make: I showed my hand before the meeting. I sent out the notetaking forms, the assignment forms, the safety plan. I told them I was planning to keep her home for emotional reasons so I wanted to focus the IEP meeting on the other subjects.

Don’t show your hand? Go in with guns blazing and paperwork flying without warning them? But…that’s mean. And this woman was nice, even if S. had noticed she had boundary issues and felt nervous around her. She had invited S to be a manager for the team she coached. She’d always answered all my questions right away, even if the answer was vague or condescending. She didn’t mean to be vague or condescending. S

Now I understand why I should have kept my mouth shut. They got together and decided to fight me tooth and nail on every little issue.

First, when I asked why the note comparison wasn't happening, they said that S drew instead of taking notes, so everything was her fault. Why has no one told me this? I asked. I would probably have been able to find out why she was drawing. OK, we'll work on the behavior, but this is a separate issue--I still need the notes to help her succeed in class.

Well, actually, notes aren’t all that important—she’s doing well without them.

Well, but, I want her to learn to take notes. This is an important life skill, one she'll need for pretty much everything--grocery shopping, managing her meds, talking to a doctor, etc.

No ninth graders take notes. You must be thinking of your college students. But, her friends all take notes in class, so this can’t be true, I say. I've talked to their parents.

She takes age-appropriate notes (said condescendingly).

Are no notes age-appropriate? I ask, totally baffled at this point, no longer willing to be polite.

Can I talk to the paras about S’s disabilities? Can we make a plan for how to deal with the notes?

Well, it’s too complicated to give her the notes right away, because paras are taking notes for multiple classes. OK, so can you ask the para or a secretary to make a copy, and put it in a folder in the main office that I can pick up a half hour after school ends?

Finally, after much argument: OK, we'll work on this.

Strangely, even though now, as I write this, the conversation seems clearly warped and somewhat crazy, I walked out of that meeting feeling good about myself, as if I’d won. I’d been clear about the need to increase the level of expectation. I’d been clear about the need to document behavior issues so they couldn’t be used suddenly as an excuse for not following her IEP. But somehow, as I left the room, the issue of notes was...well, still an issue.

Then, things began to fall apart. A fight with a teacher: not her advocate’s problem. I don’t have a list of assignments for this week: not the advocate’s problem. A test she needs to make up, but I can't reach the teacher to get access to it and make a plan: not the advocate's problem.

Behavior documentation, however, is sent home every day.

Finally, S has had enough. She refuses to allow the para to give her the notes or help her. She wants to talk face-to-face with me and the para; this is against policy. I will have to talk through the advocate; I don’t have access to he paras.
And on it goes.

I haven’t signed the IEP, which came back with, guess what, no mention of how S will get her notes. I want them to make the changes I requested: to put notes in a file in the main office that I can pick up, to write down her assignments at the beginning of the week so that I can have them to review, so I can teach her how to plan ahead, make a study plan. I request this, over and over, growing weary. I get documentation saying that again, S drew in class. Again, she got angry at the para.

I know she shouldn’t do these things, I repeat, less polite this time. We’re working on them in therapy—on the shame of being different, on the anxiety that goes along with the higher expectations, on the fact that all these oh-so-nice-but-not-particularly-appropriate-people are suddenly no longer on her side. (I leave that last part out). But I still need the notes. In fact, I need them now more than ever, to be placed in a neutral location, where I can pick them up.

I call a parent advocate, who laughs for about five minutes when I repeat the line about ninth graders not needing to take notes in class. “Grasping at straws,” she says. “Totally incompetent.” She’s so baffled she has no idea what to advise me except to keep asking for what I’ve requested, over and over again, until they finally give in.

OK, but what do I do when the principal, the head of the special ed department, and S’s special ed advocate are all in cahoots?

I get angrier and angrier, and it begins to show in my e-mails. I’m crazy mom instead of good mom. S is crazy, stupid kid instead of a kid we’re all trying to save.

I mention the idea of switching schools, and she cries for an hour. I try to discipline her for being rude to the paras, and she says she wishes she was back where she came from. Yes, nobody cared about her there, she screams at me, but at least she didn’t feel all this pressure.

I call her godparents in tears. What am I supposed to do now?

They listen. There are no easy answers, maybe no answers at all.

Meanwhile, the child who had supposedly finished the ninth grade curriculum in English but couldn’t write a grammatically correct sentence wrote three papers in the last two weeks that I believe would pass the standardized test. And we still have another month to continue working on her writing. Each paper got better. She was able to take feedback and incorporate it in the next attempt. In short, she’s learning.

The child who couldn’t do math was working algebra problems with her science tutor and is totally ready for her test tomorrow.

The child who has poor gross motor skills finally, after several weeks of ballet, figured out how to bend her knees without leaning forward.

Reality check: she’s making progress. OK, so she still can’t take notes or tell me what happens in class on any given day. Guess what? She has PTSD, which comes with an auditory processing disorder. She may never be able to listen to a lecture and understand it.

But she can read well. She’s learning to write. She’s learning to do math.

“You don’t have to decide anything tonight,” my friend, one of the godparents, reminds me. “There’s always tomorrow, and the next day, and the next.”

She’s right. I think I’m going to stop reading e-mails from the school for a couple days, take a little break. I know what’s due in the next two days. I don’t need an hourly update on S’s behavior. What I need is distance, and sanity.

I also need to stop getting so angry. When I’m angry my e-mails make me sound like a bitchy know-it-all, and that’s exactly how I feel. I’m a bitch, don’t mess with me, I know it all.

“Write the e-mail and then put it in your ‘postpone’ box for at least 24 hours,” another friend says.

She’s right. Where is this urgency coming from?

I think I know. In my house is this child who needs me, desperately, every second. It’s hard not to feel like everything is urgent, like I need to respond to every problem right away. The only break I get from her is when she is at school, when one of her college buddies is caring for her, or when she is asleep, like now, and I am alone in the house with our old, mean cat yawning beside me, trying to make sense of the day.

The rest of the time, she’s there, screaming at me or making a joke or pulling on the dog’s leash or drying the supper dishes. She’s arguing about the stupidest thing, biting my hand, kissing my cheek, surprising me with a hug from the back, cuddling the kitten to her neck. And already I can see how she’s growing so fast, how high school graduation looms closer and closer every second, and I don’t know what she’s capable of yet, what the future holds.

“I want to believe she’ll be OK,” her college buddy says honestly, “that someday she won’t need somebody to remind her to do every little thing, that somehow she’ll overcome the first 15 years of her life and be able to live a relatively normal life.” I am grateful for her honestly, her willingness to say what I have had trouble saying—that yes, there is still doubt about these things.

My aunt who raised me puts it a different way: “You can’t think that far ahead. You can’t plan. You just have to take things one day at a time.”

“I don’t know how to do that,” I say back.

“You have to.”

And I know she’s right. I’ve always known this, from the beginning when I took her. I knew I couldn’t have high expectations, or low ones. I knew I couldn’t be full of anxiety, but that I also had to be hyper vigilant. I knew…

There were plenty of things I knew, or thought I knew—understood, or thought I understood. But now, of course, I’m living them. Now I’m trying to get through my first two hours of work while also checking her English and study hall work. I’m rushing her to school at 10, rushing back, running to my 10:30 class. I’m missing my time at the gym. I’m longing for the cigarettes I gave up long ago (though I have not yet given in).

I’m living it, and living it is different than anticipating it. It’s not harder, exactly. In some ways I’d say reading S’s files and trying to figure out if I was the right mother, if I could handle all this—that was the hard part. This is the easy part because, for every impossible moment, every tearful phone call to a friend, I have this daughter.

In my last interview with her team, one of the social workers asked me, “What are you expecting to get out of this adoption if we choose you.”

There is a long silence. “I don’t know,” I say.

“That’s the right answer,” she says back, “because you won’t get anything out of it at all. Don’t expect to get back what you put into it.”

She was so wrong.

Every day, S is there, screaming at me or making a joke or pulling on the dog’s leash or drying the supper dishes. She’s arguing about the stupidest thing, biting my hand, kissing my cheek, surprising me with a hug from the back. And already I can see how she’s growing so fast, and I am both terrified and delighted, exhausted and full of energy and hope.

I love this kid, no matter what, and loving her has never been hard, strangely. I’d allowed myself to accept that it would be—but it hasn’t been. She is an extension of me, awkward and strange and stumbling and beautiful, and I feel nothing but the deepest love for her, every moment, even when I’m taking a deep breath so as not to scream back at her, even when I’m waiting patiently while she refuses to take her consequences, saying simply, “I’ll wait as long as it takes.”

“Will you really?” she surprised me recently by asking.

“Yes,” I said, not knowing for sure if we were still talking about her consequences or if she was asking what I thought she was asking, but meaning the answer either way.