No, It’s Not Okay

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So I met my son at a local minor league baseball game today. It was a happy coincidence. Our company was taking a day at the park as a part team-building, part pressure-relieving event, and my boy’s sixth-grade class was taking a field trip. So after spending some time with my colleagues, I went looking for my boy.

It wasn’t hard to find him. He was the only kid wearing a long sleeve sweater. It was in the upper 70s and sunny, so all his classmates were in shorts and tee shirts. But there he was, seated at the end of his bench, squinting in the sun, his head darting left and right with that vague here-but-not-here expression I’ve come to expect when he’s in a crowded public place.

Okay, I Guess.

As soon as he saw me, he smiled and gave me a big hug. He buried his head in my chest and rubbed it back and forth while I scratched the top of his head. It’s our thing.

“How’s it going?”

“Okay, I guess,” he said.

“Are you enjoying the game?”

“Not really. I know balls and strikes and home runs, but I don’t like baseball so much. It takes too long.”

“Okay, so what are you doing instead of watching the game?”

“Oh, nothing, just sitting here watching my friend play on his 3DS.” [He wasn’t watching all that intently. Just glancing over his shoulder every now and then.]

He seemed perfectly content to sit there in the background, sweating in the sun. He wasn’t engaged or absorbed in anything. He was just “there,” innocently taking up a seat and waiting for his teacher to tell him it was time to go back to school. I learned that he had been there for more than an hour already, and he wouldn’t be leaving for about another hour. And he spent the whole time alone, in his own world. No kids were seeking him out. No one seemed to care that he was on his own. His guidance counselor, who knows about his diagnosis, was sitting a couple of rows behind us, and even she seemed oblivious.

Happy Compliance.

It broke my heart. It was the first time in a couple of years that I saw him in his school element. I knew he had been like that in elementary school, but I thought he was coming out of himself. Not so much.

The thing is, it didn’t take much for me to get him involved. We watched the next few pitches and cheered each hit by the home team. We analyzed each misstep. We clapped at two home runs and followed the foul balls that flew over the net and landed in the stands. It wasn’t hard.

I also noticed that he had a packet of worksheets with him. They were filled with STEM questions he could answer for extra credit. He had done none of them. “My grades are good enough,” he told me. “I don’t need to do it.”

“Come on!” I said. “We can knock these things out right now. Don’t you like seeing your grades go up?”

“Okay.” No resistance. No fight. Just happy compliance.
So for the next 20 minutes, we tackled the problems. “What is the area of the baseball diamond?” “If Team X has lost three times as many games as they have won, out of 72 games, how many games did they lose?” “If you could interview the pitcher, what would be two STEM-type of questions you would ask him?” Simple stuff.

He happily dove into each problem and did a great job. (He is an honors student, after all.) But he wouldn’t have done anything if I hadn’t have been there to get the ball rolling. He would have remained static in his thought bubble, because no one seemed to care.

A Shove and a Nudge.

I suppose I shouldn’t care either. After all, my son was content. He gave no indication that he was feeling lonely or misunderstood or even bored. So why make a deal out of it?

Maybe it was the fact that no one seemed to notice that he was alone. Maybe it was the glassy-eyed look he had when I first found him. Maybe it was because I hate being passive myself; I always have to have something “useful” to do. Maybe it was because I got a brief glimpse into what his future might be like, and it scared me.

Whatever it was, I know one thing: I think it’s time to start planning for the next school year. Bone up on disability education law. Get to know a couple of his teachers. Observe him in some classes. Sketch out what an IEP might look like for him—and get ready to fight for it.

Because I don’t want life to pass my son by. I don’t want him to miss out on the relationships and the learning and the enjoyment that could be his if someone were to just welcome him. Because he’s a good kid. A bright kid. A kind kid. He should have the opportunity to let his light shine. All he needs is a little nudge.

And that means I’m going to have to do a bit of shoving

Which I don’t mind at all.

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.