TangleBones

Today was Jared’s parent/teacher con­fer­ence, and also the day I got his report card (the sub­sti­tute teacher on Friday forgot to send it home). He did well, of course, but it’s ter­ri­bly odd having a kid whose report card contains:

• a grade report that shows he’s read­ing above grade level,
• a letter describ­ing his progress on his IEP goals from his spe­cial ed. teacher, 
• a sim­i­lar letter from his speech teacher, and
• a letter from the gifted and tal­ented coor­di­na­tor talk­ing about the advanced math work she does with him.

But I guess I’d better get used to it.

Also included were the results of the IQ test the school gave him and the rest of the second grade a few months ago. They used a test that focuses on rea­son­ing with sym­bols instead of read­ing or math – the kind of test that autis­tics are sup­posed to excel at – and he scored in the 87th per­centile. That’s the range where you’ll find most of your lawyers and doc­tors (and sup­pos­edly JFK, though on a dif­fer­ent test). Pretty awe­some for a kid with a com­mu­ni­ca­tion disorder. 

Jared never has any prob­lem with his math home­work. Often they want him to use some goofy method of adding and sub­tract­ing – draw­ing stacks of blocks or some­thing – and Jared will instead just fill in all the answers then go back and try to figure out what they wanted him to do. I’ve been asking Jared ques­tions to see how well he can stretch his com­pu­ta­tion skills. “What if instead of adding eleven to eleven we were adding four elevens? How much is that?” As long as I can keep his atten­tion, he can handle a lot of simple mul­ti­pli­ca­tion, a skill that I never really mas­tered until the fifth grade. 

In the same way, Jared reads with a ton of flu­ency. I’ve heard his class­mates read in their monot­one stac­cato drones, “the – cat – sat – on – bat,” but Jared reads with excite­ment. He changes his pace to match the mood of the scene and empha­sizes all the right parts of the sen­tence: “But I wanted to go out­side.” And beyond that, the kid is a whiz at phon­ics. He sounds out just about any­thing he sees, and when he makes a mis­take on a new word, he usu­ally cor­rects him­self before I can get around to doing it. Last week I read him the first word on his spelling test and got dis­tracted. While I was doing the dishes he went ahead and wrote down the rest of the list from memory. Show-​off.

Given his excel­lent math and vocab­u­lary skills, I wonder how he’d do at a more tra­di­tional test. I’m not saying he’d do better – there’s a reason he has a diag­no­sis – but I’d be curi­ous to see how his skills mea­sure up across a broader range of tasks. Maybe he’d tank some parts of the test, but I’d like to see where he excelled too.

Of course, I should remind you that he still requires a ton of prompt­ing to stay on task, doesn’t inter­act with the other kids much, and has a real tough time fol­low­ing multi-​step direc­tions. The kid isn’t per­fect. Every time I go to a meet­ing like this, one of the teach­ers will ask, in the most casual of ways, “So, has there been any change in his medication,” before men­tion­ing what a dif­fi­cult time Jared has paying atten­tion. Hint, hint. But until they come up with a dif­fer­ent kind of ADD/ADHD med­i­cine, he won’t be on Ritalin or any­thing like it. Last time we put him on it he tried pulling his eyes out. 

All in all, it’s been a good semes­ter for the boy.

Today I was trying to talk to Jared about our plans to go see Wall-E (best movie ever – the God­fa­ther sleeps with Luca Brasi), and he kept inter­rupt­ing to ask when we were leav­ing. I wanted to explain that we were wait­ing to see when my spe­cial lady would arrive and would then go to what­ever the next show­ing was, but Jared just could not stop inter­rupt­ing. So, in my frus­tra­tion, I did some­thing dumb: I spoke Jared-​ese.

Jared has his own way of talk­ing some­times and it’s impor­tant to model good speech pat­terns for him. So I often say things back to him with little cor­rec­tions: “She bringed it.” “She brought it.” You get the point. But his other habit is that he has little rou­tines for how he dis­cusses things that dis­ap­point him. And it’s an even worse idea to encour­age that. But I was frus­trated, and just couldn’t help myself. So as he’s inter­rupt­ing to say, “When are we going to the movie?” I started quickly asking, “Can’t I talk about the plan? Is the plan can­celled? Is the plan over? Is the plan ruined? Do you want to ruin the plan? Are we done with the plan? Why can’t we have the plan?”

And he totally caved. “What’s the plan?”

That’s just going to make it more tempt­ing next time. Bad, bad daddy.

So while things have been pretty shitty for me, I real­ized that I’m making things shitty for the rest of you by not shar­ing what’s going on with Jared. Here’s a small update, as we slowly creep back to a more normal post­ing schedule:

Jared decided back in Decem­ber that he wanted to go see the Bee Movie, and he was really deter­mined to go, so I took him. And sur­prise of sur­prises, he was really good! So I also took him to Alvin and the Chip­munks and the Water Horse. Then a few weeks ago, he announced that he wanted to go to see Veggie Tales: The Pirates that Don’t Do Any­thing, and I had a bad feel­ing. I thought I remem­bered that their shows were of a reli­gious nature, and, as you all know, I’m con­cerned about bring­ing too many abstrac­tions into Jared’s life. But the com­mer­cials didn’t seem reli­gious, so we went.

Luck­ily, it wasn’t reli­gious. There were some under­cur­rents, but not very dif­fer­ent than the typ­i­cal “do the right thing” mes­sage of most children’s pro­gram­ming. When we went shop­ping for Jared’s birth­day, he stood and stared at a trio of Veggie Tales movies, and really seemed to want them. Now, with the sit­u­a­tion being the way it is, I had to take Jared and Sierra out with me, and then dodge and weave around to get his presents while he was look­ing the other way, and I didn’t have a chance to really check out these movies. Big mistake.

One is about temp­ta­tion. Okay, fine. One is about The Wizard of Oz (on the sur­face). And the last is a pretty straight-​forward retelling of Exodus with veg­eta­bles. Fine. But Jared’s favorite part of any DVD is the bonus mate­r­ial, and Jared found all of the easter eggs on his own pretty quickly. He watched all the behind the scenes shorts, and sat through all the previews.

So I was a little tweaked, but not exactly sur­prised when this exchange came up:

Jared: I can’t get bologna on my own.

Me: Sure you can, Jared. It’s not the world’s health­i­est snack, but it’s a lot better than some of the junk out there. You’re allowed to have some bologna, just not too much.

Jared: No. I can only do it with God.

Sigh. I tried to con­vince him that the mes­sage the show was giving him wasn’t about get­ting snacks, but I didn’t make a lot of head­way. And this was the sort of thing I was con­cerned with: Jared get­ting mes­sages about reli­gion that he really can’t under­stand at this point in his life. I mean, Jared is a read­ing whiz and a math genius, but metaphor and alle­gory are pretty much beyond him.

Or so I thought.

Tonight I read Jared one of my favorite children’s books. Usu­ally he reads to me at bed­time as part of his home­work, but on long week­ends, I love get­ting a chance to read to him. It’s a whole pro­duc­tion: voices, hand ges­tures, lung­ing around the bed for dra­matic effect. I’m sure you can imag­ine. So I get done read­ing Where the Wild Things Are, and Jared looks at me and says, “Oh, it’s a prodi­gal son story.”

Don’t I feel silly.

I received another note from Jared’s ser­vice coordinator:

I wanted to let you know that from today on, Jared will be in Mrs. XXX’s (1st grade) class every day for math. I am in this class with him. This deci­sion was made so that he could be in a team-​taught class­room. He will still be in Mrs. YYY’s class for all other sub­jects. If you have any ques­tions or con­cerns, please let me know.

Here’s my response, mostly placed here so that I don’t lose it:

I’m afraid I don’t under­stand what you mean in your letter. I’m cer­tainly not an edu­ca­tor, so I don’t know what the advan­tages of a “team-taught classroom” are for Jared. What I do know is that while Jared deals with change better than many autis­tics, changes like this are usu­ally accom­pa­nies by a cer­tain amount of anx­i­ety and stress for him. Con­sid­er­ing that his assis­tant has been changed, does chang­ing his math teacher, his math class­room, his method of instruc­tion and his access to the break-​time de-​stressors in Mrs. YYY’s class make sense? Also what advan­tage do we hope to gain by using a team, con­sid­er­ing that Jared has such a hard time deal­ing with more than one person at a time? And the biggest piece of infor­ma­tion miss­ing from your letter is why this change needs to take place. Is Jared doing poorly in math? I he doing so well that he needs more advanced lessons? Why is this change worth making him anx­ious all day? Please under­stand, I want to sup­port you and the other mem­bers of his team, but I feel like your short note was a little too short. If you’d like to expand, you can reach me at…

They’re trying to turn me into one of those crazy par­ents who fights with the school about every­thing, they really are. I don’t want to be that guy that turns the IEP meet­ing into a shout­ing match. I don’t want to be the father that makes the teach­ers afraid that he’s lawyer­ing up. I want to be the friendly, jovial parent that the teach­ers like almost as much as they like his son. But as Jared gets older, that might not be in the cards.

Jared’s school pro­moted the WON­DER­FUL woman who has been Jared’s assis­tant since the middle of last year, and he has a new person help­ing him stay focused. Or rather, he has a new person stand­ing near him while he remains unfo­cused and anx­ious. Evi­dently that “resistance to change” part of the autism diag­no­sis slipped past them.

I’m hoping that Jared warms to this new person, or that his behav­ior last week (less than per­fect) was because of his fall aller­gies. I don’t begrudge his old assis­tant get­ting pro­moted because she totally deserves it, but I wish that if they were going to switch things up on Jared, they would have done it in the begin­ning of the year. And I’m sure that the new assis­tant is doing her level best, but she’s been put in a crappy situation.

I guess I’m just dis­ap­pointed because it’s been all good news for Jared this year, and now things are going down­hill. Each day the kids get a little indi­ca­tion of their behav­ior in their take home fold­ers: either a green, yellow or red dot. Last month, Jared had almost noth­ing but green smiley faces – not just dots, people, but smiley faces. A couple days of a new assis­tant, and behav­ior is lousy again.

Here’s his first month’s progress report towards his IEP goals from the school:

Jared did well in his first month of first grade. When asked ques­tions during and after read­ing he is able to answer them cor­rectly. Jared can respond to a text orally and pic­to­ri­ally but often needs verbal prompts to stay focused. We do modify tasks for Jared and he is usu­ally able to finish a task. Jared will answer when called on and we are work­ing on him qui­etly rais­ing his hands. Fine motor skills such as cut­ting and hand­writ­ing are improv­ing but are still some­times dif­fi­cult. Jared is com­mu­ni­cat­ing with his peers and inter­acts with them both inside the class­room and at recess.

Here’s the second:

Jared has been making progress in the area of lan­guage arts. He has been writ­ing full sen­tences with­out even taking part in shared writ­ing. Com­pre­hen­sion with text is get­ting better, although Jared still will restate ver­ba­tim from the text. Jared is improv­ing his task com­ple­tion but still needs many prompts.

Yes there are some crit­i­cisms in there, but when com­bined with how well Jared is doing aca­d­e­m­i­cally, I’m ecsta­tic with his progress so far. But by switch­ing out a member of his team, a wrench has been thrown into the works. Jared is already work­ing at a dis­ad­van­tage com­pared to his peers. He’s easily dis­tracted, has a hard time com­mu­ni­cat­ing with other people, and learns in a com­pletely dif­fer­ent way. The metaphor I use is that it’s as though all the kids in his class are run­ning a marathon. Jared’s autism means that he’s run­ning with 30 pounds of weight on his back, and yet he’s still keep­ing up with the other kids. The last thing he needs are detours on the route… okay, that metaphor is get­ting tor­tured. You know what I mean.

So here’s to hoping that things work out with the new assis­tant. Jared’s been work­ing so hard this year, and I’d hate to see him start falling behind.

As men­tioned over on Left Brain/Right Brain, in the intro­duc­tion to Jenny McCarthy’s new book about rais­ing her autis­tic son, Dr. Jerry Kartzinel says:

“Autism, as I see it, steals the soul from a child; then, if allowed, relent­lessly sucks life’s marrow out of the family mem­bers, one by one..”

…which makes my mind boggle. Let’s be clear who we’re talk­ing about. This is what Dr. Kartzinel thinks a soul­less child looks like:

Has this guy ever met an autis­tic? Jared is the hap­pi­est, fun­ni­est, sweet­est bundle of life and joy that you could ever meet. He’s made every­one around him happy for years. Every kid in his school seems to love him, and when they see him, they run to him shout­ing his name as though they were greet­ing a con­quer­ing hero. This kid isn’t suck­ing life’s marrow from anyone. This kid is too busy relent­lessly making life better for every­one who knows him.

So the next time you hear people like Dr. Kartzinel or par­ents like Jenny McCarthy on tele­vi­sion describ­ing autis­tics and autism, think of these pic­tures. Think of that smile. And then give them the finger.