Dissecting a Victory

So today was the big day. We had our eligibility meeting at the school to determine if our fourth child, a third-grader, qualified as being on the autism spectrum according to the school district’s definitions. And I’m happy to report that the IEP team (consisting of the school psychologist, the speech therapist, our son’s teacher, the assistant principal, our private psychologist, and Katie and me) all agreed that he met the district’s criteria for being identified as ASD.

A Good Day.

On one level, not much has changed as a result of this new designation. He is still receiving the same services he received under his previous designation as “Language Impaired.” We’ll revisit his Individualized Education Plan later in the school year to see if he needs more help than he’s currently receiving.

But having him identified as being on the autism spectrum is also a safeguard for the future. Should things go downhill for him in the social/emotional sphere, as it has done for our older daughter, school officials will know that part of it is because he has autism. And that will alter the way they intervene and how they will help him.

Should he run into further glitches in his auditory processing, his short-term memory, or his ability to adapt to new surroundings (like changing classes in middle school), it will be that much easier for accommodations to be put in place to help him.

And since kids on the autism spectrum tend to be literal thinkers, it will be easier for him to access special-ed helps as the curriculum begins to demand more inferential thinking and not just rote memory or quick calculations. He can learn these skills, but he’s probably going to need more help in making the jump from the literal to the figurative.

So this was a good day. It was a long time coming, too—the fruit of a couple of very tense preliminary meetings and hours and hours of preparation on our part. It came after we had to challenge the previous assistant principal’s thinly-veiled insinuations that we didn’t know what we were talking about and that she was the real expert in autism. It came after a couple of years of seeing his school-related melt downs increase in frequency and intensity. And it came on the heels of two similarly long-fought victories for his older brother and sister. That makes us three for three. Quite a lot to celebrate, don’t you think?

Walking a Rocky Road.

So why, as Katie and I left the meeting with our son’s new designation in hand, did I not hoot and holler in victory? Why was there a lump in my throat instead of a smile on my face?

Because my son still has autism. Because yet another official organization has recognized—and thus reminded me—that he has a disability that will impair him for the rest of his life.

Don’t get me wrong. I’m glad for what we did. It’s going to protect our boy through his entire educational career. It’s going to open the door to a set of services and accommodations that will help him learn how to live in this strange world filled with neurotypical people.

But I know that through that door lies a path of misconceptions and of challenges that I wish he would never have to face. A path where potential friends may not understand him and may even reject him.

A path where potential employers may not see the gifts he has to offer.

A path where the joys and comforts of a family of his own may be forever elusive.

It’s a rougher, rockier path than most of his peers will be walking. And that’s never a fun thing to think about.

A Sobering Reminder.

We got a stark illustration of this just a few hours after that all-important IEP meeting. Katie called me at work to let me know that our boy had had a rough day at school. Because he didn’t complete a homework assignment over the weekend (we thought he had), he received a 40% grade.

It wasn’t a huge assignment, and it wasn’t a big deal. But in his literal brain, it was a complete and total failure. He came off the bus with his fists clenched, his brow furrowed, and his jaw trembling in a heartbreaking mix of anger and shame. Katie tried to help him work through it, but the rest of the afternoon was a complete loss: melt downs over new homework, high-pitched tantrums at his “annoying” younger brother, and anxious, hyperactive “stimming” that was so intense that I was afraid he might hurt himself.

He did calm down eventually, and we got his homework done. In fact, once he got all his frustration and anxiety out, he sailed through most of the work. He’s a pretty smart kid, after all. He just needed to expend himself before he could get his brain back in gear.

So this is the challenge he will be facing—and Katie and me along with him: how to manage the down side of his autism so that all his gifts and talents can shine. Because he really is a sweet, innocent, affectionate, intelligent, perceptive fellow. He has so much to offer. There is so much he can accomplish. He has the potential to enrich the lives of countless people. He just needs more help than most in getting there. He may have some serious glitches, but he’s an awesome kid. I just want everyone else to be able to see that.

It’s our hope that today’s “victory” will help this happen.

Leo Zanchettin, Prosecuting Attorney

VinnyWell, it’s that time of the year again—the beginning of school and its attendant Rite of Introduction. That’s when you get to meet your kids’ teachers and size them up. Are they the type who live solely by the rules and standardized tests? Are they the kind who have high expectations for their students (a good thing), but don’t know how to help their exceptional students meet those expectations (a not so good thing)? Are they the kind who will look at you like you have two heads when you tell them that your child has an autism spectrum disorder? Will they be quick to respond to your e-mails and questions? Or will you have to pry it out of them?

It’s also the season for IEP meetings. Those wonderful exercises in diplomacy, tact, and tongue-biting. Those opportunities to do penance for your past sins and to try mightily to avoid any future sins.

A Successful Pre-Trial Hearing.

I’ve been thinking about IEP meetings a lot recently, because we have a big one coming up in a couple of weeks. It’s for our fourth child, who is entering third grade this year. Last February, we had a pretty tense gathering with his IEP team at school, when we requested that he be tested and formally recognized as being on the autism spectrum. After a ninety-minute “discussion” on the issue, Katie and I prevailed, and the process of testing him was put into motion.

To this day, I don’t know what turned the tables. For the first hour, I was sure we were going to be denied. But then out of nowhere, the assistant principal began passing out consent forms. Katie thinks it had something to do with the fact that I used the word “irresponsible” in describing the administration’s response to my son’s needs, but I’m still not convinced.

Anyway, the school took all the time it could in conducting the tests, so we couldn’t meet before the end of the school year to discuss the test results. So now we are gearing up for the very important get together, when the school will either agree with us and formally designate him as needing ASD services, or they will give some new variation on the standard line: “he seems fine to us.”

I’m not too worried this time. We’ve got enough evidence from the school’s own testing as well as diagnoses from our therapists to win the day. Granted, schools can be pretty clever when it comes to finding a way out of these things. But we’re getting familiar with the tactics and are learning how to counter them. This is, after all, the third time we’ve been down this road.

I Hate It.

But here’s the thing. I hate these meetings. And not primarily because I have to deal with a skeptical, reluctant team of educators and administrators. What I hate more is the fact that I have to convince them. I have to take them by the hand and walk them through our all the aspects of our son’s ASD.

I have to rehearse every “academically relevant” way in which his disorder manifests itself—including the melt downs over homework and the inability to read social cues and the sometimes tragic, sometimes comical things that come from this inability.

I have to become something of an NSA agent taping his conversations and culling through them to find the evidence of his uneven pragmatic language skills.

I have to pore over all of his testing data, highlighting every deficit so that I can show how it relates to his ASD and how it will affect his ability to move through the curriculum.

I have to give special emphasis to his challenges and deficits and defects (God, I hate that word). When a teacher says something like, “But he’s so cute and charming,” I get to agree, but I can’t dwell on his good qualities for too long. I have to get right back to his needs.

In other words, I have to build a case against my own son, sort of like the way a prosecuting attorney would build a case against a criminal. Because the school will hang on to any positive inkling about him and use it to deny him the services he needs.

That’s what I hate.

Because he’s such a good kid. He’s smart. He’s sensitive. He’s energetic. He’s loving and kind. He’s got the brightest light in his eyes and the liveliest spring to his step I’ve ever seen (yes, he’s a toe-walker). Here he is, my own flesh and blood, and I have the singular privilege of telling a group of low-level bureaucrats everything that’s “wrong” with him.

A Smile on My Face and a Pit in My Stomach.

What’s not to hate?

But we do it, as we’ve done for two of our other children. As we’ll likely have to do for two more. We do it because we want them to get the “free and appropriate public education” that is their right by law. We do it because we want them to be given a fair chance to learn and grow and develop and make a positive contribution in a world that can seem so alien to them. We do it because we love them too much to let them or their school think that just squeaking by is good enough.

So there I’ll be in a couple of weeks, patiently and carefully building a case against my own son. I’ll do it with a smile on my face and a pit in my stomach. And I’ll be praying the whole time that I not lose my cool. Because I want what any parent wants: the best for my kid.

When Near-Failure Is an Option

A couple of days ago, I wrote about an episode at my daughter’s school where she was given the short end of the stick when it came time to make up a test she had missed. I’ve thought about it some more, and I realize that this little episode exposes a more general weakness in the way schools deal with high-functioning kids on the autism spectrum.

Looks Are Deceiving.

Kids like my girl look “normal.” They don’t bang their heads against the wall—at least not usually in public. They have average or above-average verbal skills. They are bright and sweet and innocent. They try hard to fly under the radar so that they won’t attract attention. But coping mechanisms like these often hide serious learning glitches and emotional imbalance.

As far as the school is concerned, there’s no need to worry about these kids. Not unless their parents push hard to get their kids special-ed services. And then, the most they are willing to do is place kids like these in “inclusion” classrooms—standard classrooms that are staffed with a teacher and an aide who floats around the room helping kids who need it. But that’s about as far as they go. No different approach to teaching kids with different brains. No sense of what it is that the kid needs. Just an obligation to pound the information into his or her head so that he or she can spit it out when it comes time for standardized testing. If the kid still isn’t doing well, despite the inclusion class, it’s his or her problem, not the school’s.

Hoop after Hoop after Hoop.

You see, schools consider inclusion to be a great, magnanimous gift they are bestowing upon these kids. So parents are made to feel greedy if they dare ask for anything else, like access to a guidance counselor or extra help in a challenging subject. Even if their child clearly needs it.

This begins very early on in the process. You have to jump through all kinds of hoops just to get an IEP for your child in the first place. In most cases, you literally have to wait for a child to fail before a school will do anything. As long as a student—no matter how smart—is pulling at least a D average in core classes, there is no need to do anything. He or she is “meeting standards.”

Never mind how hard it is for that kid to complete homework after working so hard to keep it together at school. Never mind how anxious, fearful, or even depressed that kid is becoming because of the stressful environment. Never mind that this kid is really, really bright and could tear the place up if given the chance. Nope. He has to fail first. And by the time that happens, so much ground has been lost—educationally, socially, and emotionally—that it’s a long, hard climb to get back on top of things.

“Are You Serious?”

And then come the humiliating meetings parents have with school administrators as they try to advocate for their children. There are the not-too-subtle insinuations that if you were a better parent, your child wouldn’t be failing. “All you have to do is use more charts and folders to keep her organized.” “Are you giving him consequences when he doesn’t do his homework?” “Well, if you didn’t have so many kids. . .”

There’s the attempt to blame the student. “She doesn’t need support. She’s just lazy.” “He simply needs to apply himself more.” “If he’d just do his homework, we wouldn’t be having this conversation.”

There’s the attempt to discount or diminish the situation. “I see that you have a diagnosis from a psychologist. Well, private practitioners tend to exaggerate things to keep you coming back. They’re more interested in their bottom line than anything else.” “It’s just a phase. My kids went through a tough patch as well. I’m sure he’ll pull out of it.” “Are you sure your child has autism? She seems fine to me.”

And then there’s this classic line: “Some kids just aren’t cut out for school.”

As If. . .

These are all things we’ve been told in parent-teacher conferences and at IEP meetings. As if we aren’t trying to teach our kids discipline and responsibility. As if we just want to milk the system for everything we can get out of it. As if we enjoy having to explain our kids’ challenges over and over again. As if we were under the spell of some Svengali-like psychologist who is milking us for every dollar we have.

But the reality is that no parent wants to go through any of this. I can’t tell you how many times I have felt a pit in my stomach when preparing for an IEP meeting or a parent-teacher conference. It’s not the exhilaration that I’ll be getting something special for my precious little child. It’s the dread of having to rehearse, yet again, the symptoms and the challenges that my kid faces. It’s the sober realization that I am not only responsible for educating my children. I’m also responsible for educating their educators so that they can see the way ASD affects my kids—and the way their teaching methods help or hurt them.

What disturbs me the most is that my kids are smart. They’re talented. They’re perceptive and creative and curious in their own way. But their teachers can’t see it because they’re hidebound by a one-size-fits-all approach to education. Their main goal is to get the kids ready for state-mandated standardized testing. So as long as they can get the right data into their kids’ brains—as long as their kids can regurgitate that data on a test—they have discharged their duties. And so any child whose brain is wired differently is left to flounder.

Just so long as he doesn’t fail, all is well. After all, isn’t that what inclusion classes are for? To keep on teaching him the same way—no matter how bad the results have been all along?

The Thrill of Victory

Yes, I know it’s been a few months. But I’m back now. Believe me, I haven’t run out of things to say!

Anyway, something that happened at school with my oldest girl, and I felt I had to share it.

After years of working with the school, my daughter, a sixth-grader, finally has an IEP (Individualized Education Plan) that identifies her as being on the autism spectrum. IQ testing puts her just two points shy of gifted/genius, but she has glitches in the way she learns and processes information. She also has attention issues as well as the kind of anxiety that is not uncommon to kids on the spectrum. The world is so “other” for aspies like her, and they tend to be in a state of constant tension when outside of the comfort of home.

All this means that when tests come up in school, my daughter is supposed to be given extra time, and an aide is supposed to be made available to read her the questions and help her stay on task. That’s part of her IEP. It’s documented in paperwork required by the US Department of Education. It’s her legal right.

A Recipe for Failure.

Well, she missed a history test last week because she was out with strep. When she came back to school this Monday, her teacher sent her to the library to take the test. She was pretty confident going in, because she had done a bang-up job on this unit. She even earned a 100% on a major project related to the topic! I can’t tell you how proud she was when she saw that grade.

She bombed the test. Epically.

As soon as I found out, I e-mailed her teacher to investigate. It turns out that a number of things went wrong, which should never have occurred.

First, she was sent to the library—a very busy place filled with distractions—to take the test. Next, she was there all alone. There was no aide to help her. No one checked on her progress or answered any questions she might have had. No one even looked in on her during the hour-long test. And finally, she had to deal with a change in routine. This may not be a big problem for neurotypical kids, but any change like this—especially if it’s linked with something as scary as a major test—can send aspies like her into a tailspin.

In other words, this was a recipe for failure.

Daddy Goes to Battle.

When I asked about this, her teacher said that my girl could retake the test, but that it wouldn’t be given full weight because it was a do-over. The highest grade she could get was a 70. Then, to add insult to injury, the teacher told me that on the day of the test she had read the questions to everyone else in the class and made sure they stayed focused. So not only was my girl denied the accommodations she has a legal right to as a special-needs student, she didn’t even get the same help that her neurotypical peers got!

It took a few hot e-mails from me, but I finally made it clear that this teacher was not complying with my daughter’s IEP, and that my daughter deserved better than a chance at a C. Somewhat reluctantly, the teacher agreed to give her the test again, this time with the chance to earn full credit. I didn’t get an apology from the teacher, mind you. Much as I would have liked one, I knew better than to ask for the moon. I was just happy to have won on this one.

The Thrill of Victory.

Now I know that this isn’t a huge issue in the grand scheme of things. The teacher messed up, I brought it to her attention—politely but aggressively—and she fixed it. But it’s a battle I should never have had to wage. My daughter has an IEP for a reason, and her teachers are expected to comply with it.

I’m glad I waged this battle, though. It showed me that I need to be more pro-active when it comes to advocating for my kids. It showed me how quickly some teachers will back down when challenged. And best of all, it illustrated the oft-used saying: “You’re the only advocate your child has.”

Not to mention, it felt really, really good to have a victory under my belt!