I’m preparing for next week’s IEP meeting at Dylan’s school. After two very rough weeks, we’ve learned that the new special ed coordinator and the new case manager are completely confused.
For example, at last year’s IEP meeting, the conversation went something like this:
ME: “Dylan needs someone to make sure he’s on task. He’s tired in English. It’s 7th period.”
CASE MANAGER: “My office is in that room anyway, so I’ll be there if he needs any help.”
TRANSLATION to the IEP: “Dylan will receive the support of a special educator or para educator in Advanced English.”
So this year, they sent a person to stand next to him in English.
We put a stop to that immediately, since Dylan’s main goal is to appear normal. After all, he’s in middle school.
But the new special ed coordinator and the new case manager are very difficult to train. They sent me the IEP to review – and it was addressed “To the Parents of Jose Fuentes-Martinez.”
These two simply don’t pay attention to the details. And Dylan is suffering because of it. Of his case manager, he says, “She’s making me look more like a moron than everybody already thinks I am.”
We’re trying to get under the radar here. We’re trying not to publically humiliate him. Yet, in the first three weeks of school, our new special ed team has humiliated him four separate times – not including the day he had to change his schedule to get “support” in English.
But the first note of order at next week’s meeting will be: who the heck is Jose Fuentes-Martinez?
When Shane was a toddler, I would frequently find him with his head on the floor and his diapered butt in the air. He would just lie there like that, until someone found a way to get him up and moving again. I thought he was tired, or even bored – which seemed unlikely for a toddler – until several years later.
Somewhere along the line, I realized that he was listening to absolutely everything. I think, in his toddler days, he was listening to the vibrations in the floor.
Even during that baby stage when all babies look people right in the eye, Shane looked across the room. The first video I have of Shane laughing was when my husband, Bill, was holding him and making a funny sound. Shane heard that sound, no doubt, but he never looked at my husband.
Most people – especially males – are born with a strong visual interest. Shane simply wasn’t. Or so I thought.
When we found out that Shane had a vision processing disorder, it made a lot of sense. All his idiosyncracies finally fit into place. He was listening but he wasn’t paying attention visually – because he couldn’t. Vision processing disorder mimics dyslexia – which is how we found it.
Shane knew every letter and how it sounded by the time he was 3 – but by age 6, he still didn’t want to read. When he finally started trying to read out loud, it was obvious that his letters were jumbled and that he couldn’t concentrate on any single word. He would get tired after every page, and rub his eyes constantly. With his ability to repeat the letter sounds easily, the reading issue didn’t make sense.
In preschool, I almost got into a fist fight with his teachers because he had circled the lower-cased letter “q” when he was supposed to circle the lower-cased letter “b.” I explained to the teachers that this was the same letter, just upside-down. I thought Shane was brilliant, knowing that. Shane also did jigsaw puzzles upside-down or sideways. He still does. (I should probably have noticed that he didn’t ever do them right-side-up.)
But when he was writing letters backwards in kindergarten, we finally took him to an occupational therapist. After half a dozen visits, she said, “He may have a vision processing disorder.” We went to a specialist, who confirmed with a test: Shane definitely had a vision processing disorder. The doctor showed me with a flashlight how Shane’s eyes could go googly-eyed like Cookie Monster on Sesame Street. It was bizarre. But it was nothing compared to what he could not do on those tests.
We spent two years on treatments – basically “eye games” where Shane taught his eyes and his brain to work together. It cost $20,000, none of it covered by insurance (because vision processing is still in its infancy as a disorder). Treatment took almost two years, but Shane’s eyes and his brain are finally working together.
Still, yesterday, as we were driving home from the Chesapeake Bay, Shane stared out the window.
“Shane,” I said. He didn’t look at me.
“What?” he said.
Dylan looked at him. “Shane,” Dylan said, trying to get his attention.
“What?”
This went on for several minutes. I was driving, so I had no idea that Shane wasn’t looking at me. He never stopped staring out the window. This was not defiant behavior. He was listening and assumed that was sufficient.
Dylan, however, was incredibly frustrated. “SHANE!” he finally screamed, “Look over here!”
And Shane looked at us immediately, because he hears every word we say. He absorbs them and responds without hesitation. Still, sometimes it would be nice if he just looked at us – if those big, baby blue eyes would look into mine.
It happens more now than it did before treatment, certainly. But not nearly as much as I’d like.
Last night, Dylan told me about middle school – really opened up about it for the first time. He kept saying, “It’s really dark.” He didn’t mean the lighting was bad.
He talked about a popular kid named Andrew who treats him like garbage. Who whispers rotten things like, “I love you and I want you to be my partner” during class. Dylan said, “He’s very good looking. And he’s dumb as a post.”
He talked about a boy who bit one of his friends last year and drew blood, who this year choked Dylan during lunchtime because Dylan accidentally hit him with his lunchbox. I’ve told Dylan he could fight back. I’ve told him he has my permission to clobber anyone who hurts him. Dylan chooses not to. He said this biting, choking boy is kind of his friend.
He said, “I feel sorry for them. I know that if they do these things, their lives must be harder than mine. I don’t want to make their lives even worse by hurting them.”
Then Dylan talked about a girl who tried to commit suicide – again. He talked about how beautiful she is, but that she doesn’t seem to have any close friends, even though a lot of people talk to her. He said that after her second suicide attempt, on Tuesday, more people are talking to her now. She’s even smiling a little bit. But other people are attacking her viciously online, sending messages ostracizing her further … for trying to kill herself.
“You said that people who commit suicide don’t usually talk about it first,” he told me. “But she talked about it all the time. She told lots of people she was going to do it. And then she took a bunch of pills.”
“She’s just so beautiful,” he said. “Why would she want to kill herself?”
I tried to answer him. I talked about middle schoolers trying to find themselves, about fighting back without fighting. I talked about choosing how you will deal with it. “There are only two choices,” I told him. “You can let it get you down, or you can learn to laugh about it.”
I don’t know anything else. I don’t know how to handle it. Middle school almost killed me. I let it get me down. For 30 years, I let it get me down.
Shane, my 9-year-old, was sitting next to Dylan the whole time he was talking. Shane is two years away from middle school and has no idea what’s going to happen there. He wasn’t listening, really, but I know from experience that he’ll come back later – maybe in a few weeks – and ask me a hard question about this conversation.
Dylan said to Shane, “It’s really dark in middle school.”
Shane seemed to be in his own world, and thought this was his opportunity to talk. He said, “Mom, I dare you to go into the woods on Halloween night.”
So we changed the subject, but today I woke up at 5:30 and couldn’t get back to sleep, thinking about my baby being brutalized by middle school. Thinking about how I did nothing to save myself from middle school, and how I can do nothing to save Dylan, either.
At 6:30, I went into Dylan’s room, where he was just waking up. I rubbed his back and said, “Don’t let them crush your spirit. You have such a wonderful spirit.”
He said, “I’ll try, Mom.”
The new school year has begun again and, with it, the same old problems that have been plaguing us since my 7th grader was in preschool. Dylan now – suddenly, because he’s in school again – ‘needs to do this’ and he ‘needs to do that.’ Even with an IEP and constant contact with the school, the counselor and the special ed folks, no one seems to know what I do – that he was born this way for a reason. Squishing him into a public school box doesn’t do justice to his good points.
Dylan is multi-talented and incredibly intelligent. He solves problems that I couldn’t begin to solve, and his philosophical questions are He can do anything, mostly while spinning, singing and standing on his head. He doesn’t turn in anything on time. He doesn’t even remember sometimes that he’s done it. But Dylan is a master of many things. He can sing like an angel, so he’s taking chorus. He can imagine, design and build, so he’s taking robotics. He’s fascinated by technology and a whiz with A-V equipment, so before school he does behind-the-scenes work for the school TV show aptly titled, “Morning Show.”
So today, finally, I heard from his case manager – the person who, last year, was his saving grace and encouraged him in everything. But his NEW case manager is not warm and fuzzy. She is not encouraging or even pleasant. Worst of all, she rearranged his schedule to take him out of robotics. She planned to meet with him once a week DURING chorus. And when did she deliver this information to him? During his 15-minute “Morning Show.”
She said, “He may not like me for a few weeks.”
I said, “He may not like you for the whole year, but that’s not the point.”
The point is that, to Dylan, this feels like a punishment. You have ADHD, so let’s take you out of your favorite classes and activities. We’ll sit and talk about all the things you do wrong instead.
I spent hours on the phone today, then on email, then back on the phone … getting Dylan’s schedule back to normal, begging for the special ed folks to see him for the incredibly beautiful young man he’s becoming – and to realize, once again this year, that they are not dealing with an apathetic parent. I’ll fight till the ends of the earth for him if I have to.
And I may have to.
Dylan is going to be a teenager soon. Technically, it happens in 3 months, but it’s happening NOW. And I keep denying it, or missing it, or something, because I keep thinking he’s still my little boy.
Yesterday, Dylan was listless, which is not his usual manner. He’s usually bouncing off the walls, spinning, tackling Shane and doing headstands. Since it was a weekend, I supposed that Dylan needed some mental stimulation.
Since he was a little kid, and after I discovered CelebrateCalm.com – a story unto itself – I’ve learned that ADHD is quite manageable, as long as you give your kid something mentally stimulating to do. Maternal instinct says “Let them run!” but it’s actually counter-intuitive. Running tires him out and exacerbates his symptoms.
So one day, when Dylan was driving me particularly crazy, I threw a giant bucket of blocks into the middle of the room and said, “Build a village!” He and Shane raced over and started building – and within an hour, they had a giant metropolis with everything from a neighborhood pool to museums and a town hall. And best of all, Dylan calmed down for the ENTIRE weekend! It was amazing.
So when he was lying on the couch, I gave him another building project – but he wouldn’t step up. Shane did the entire project and I screamed at Dylan to “Go to your room and just lay there if you’re so tired!” He did – under protest – and when I went upstairs 20 minutes later, Dylan was just laying there, mad at the world but mostly at me. I left him there for another 10 minutes when, sullenly, he came down and said nothing.
I was about to send him upstairs again when he suddenly broke. He started crying. He said he thought I hated him and that I didn’t understand him and that he felt discouraged and on and on and on…. Glumps of insecurity and confusion just rolled out of him with no apparent end. It was a hormonal avalanche.
I recognized it right away: it was ME, at age 14. I don’t know why I hadn’t seen it before. I’d been trying to treat his ADHD when he was just being a typical underappreciated teenager.
So I sat him down and explained that he’s my first kid, and that I had totally blown it. That what he’s feeling is perfectly normal and that I’m sorry and that I love him always, no matter what. I assured him that I want him to be happy but that sometimes growing up is hard, and he isn’t always going to be happy. And that I am the one who most needs to learn that.
I’m growing up right along with him, and learning things I maybe should have learned the first time around. I can only hope I recognize “teenager” next time, and don’t punish him for being normal. After all, he’s been so abnormal for so long, isn’t this just what I want for him – some semblance of normal?
Well, what I really want is for him to be happy. And so it goes….
My boys are not prodigies. Dylan, age 12, tested into the Gifted & Talented (GT) program in school. That’s how we found out he was gifted – in addition to his insatiable curiosity – and also how we learned that he had ADHD. We knew something was going on with Dylan when he was a toddler, but it took us until 4th grade to nail down exactly what was causing the discrepancy between his brain and his body. Diagnosed with ADHD and Developmental Coordination Disorder, Dylan has been my source of incredible delight and absolute frustration for more than a decade.
We’re still figuring out Shane, who is 9. Shane did not test into the GT program – which doesn’t mean he’s not gifted. But it means that two years of therapy for his vision processing disorder did not fix everything. Three weeks after he took the GT test, we found out he couldn’t see close-up very well. So he got some glasses and, I’m convinced, he’d probably do much better on that test now. But he also has dysgraphia – which is like dyslexia for handwriting – so seeing past the scrawling and misspelled words to the giftedness can be difficult.
Shane’s vision processing disorder mimicked dyslexia, so he had serious trouble learning to read. After therapy, he has become a voracious reader. We can’t get him to stop. He spent the past week reading the first Harry Potter and finished it today – which is nothing unusual, except when you find out that Shane has read only comic books for the past two years. Now he’s finished a 309-page chapter book in a week. He’ll tell you it’s exactly 309 pages. Shane has a bit of a numbers obsession, too.
Dylan wants to be a mechanical engineer. When he’s not texting like a typical teenager, he is designing something – either building a catapult in the backyard out of rotting wood, or designing a system on paper to save the polar ice caps. Shane, on the other hand, wants to be a magician or a photographer. His creativity is so strong, he often has trouble with fairly simple tasks because he’s over-thinking them. Dylan talks non-stop (when he’s not texting) and Shane rarely speaks. They get along beautifully and I find them both endlessly fascinating.
There’s lots to tell. Lots and lots and lots. I hope I can keep up with all the stories in my head.
