IEP Management Needs Deserve Respect

Last year, when Cooper was in 5th grade, we decided to do some educational testing (a.k.a. neuropsychological testing if you want to sound all fancy about it). 

I had a sinking feeling there was something we didn't know about him that would explain some of the difficulties he was experiencing in school.

Sure enough, he has dysgraphia, a written expressive disorder. 

It took me a few days to digest this new diagnosis being piled on top of the existing conditions we already knew about, but it made a lot of sense. 

No wonder trying to get him to do any written homework generated so much drama. It wasn't his fault; he wasn't trying to have a meltdown for no reason. 

Writing was just HARD FOR HIM. 

His mind can produce thoughts, but then the work of writing them down onto a piece of paper was another set of obstacles that sometimes overwhelmed him. 

No wonder I was scribing for him night after night. He simply had trouble doing the various tasks to achieve a written product.

Armed with this 17-page report, I met with his team in elementary school and we updated his IEP to include accommodations and modifications to make school more manageable for him.

In September, he started middle school.

New team. Too many teachers for me to count or keep track of, with him in co-taught core classes for most of the day.

So far, so good.

Until I dropped the ball.

(Which one? Hard to tell sometimes.)

At a team meeting I had with Cooper’s middle school teachers recently, one of the teachers asked if Cooper still needed the printout of the Aim and Do Now. 

This management need went into effect two months ago, when he entered middle school and was faced with having to copy down the Aim, Do Now, and nightly homework in each of the seven classes he attends daily. 

That’s in addition to writing his name, the subject, period, teacher’s name, and date on every sheet of paper he does in class, including notes and class work. 

To reduce the amount of unnecessary copying, I've been pre-writing a piece of paper (or sending it through my lovely Brother laser printer -- a much-deserved shout out because Brother makes workhorse printers, IME) that's labeled for each class.

Back to the meeting:

I don’t recall the reason the teacher thought Cooper didn’t need this given to him anymore; it was probably the tenth topic discussed during the 45-minute meeting and it wasn’t anything I had brought up. 

For some reason, I agreed to try it out. 

(Sometimes I think I agree to things at these meetings because someone asks; not because I have thought the matter through and have come to my own decision without feeling put on the spot.)

Naturally it backfired when the teachers didn’t give him the Aim and Do Now in one of his classes yesterday. 

I forgot to prep him that this would be happening. (Sorry, world, I can only handle so much of this at once!)

He started to get into it with the teacher when the teacher said that his mom said it was OK, then he was upset when I picked him up, yada yada.

So I flipped on the laptop and typed out an email to the teachers last night. Subject: Cooper still needs printout of Aim and Do Now

Dear Teacher X,

I forgot to tell Cooper that we wanted to have him try to write down the Aim and Do Now, and apologize if he wasn't happy to learn this from you during class today since he was upset when I picked him up.

As you may know, receiving a printout of the Aim and the Do Now is an accommodation for his dysgraphia that was added to his IEP as a management need after we did educational testing last year.

The purpose of the printout is to reduce the amount of copying as well as the amount of overall writing that he is asked to do during each day, work that is taxing due to his dysgraphia and low muscle tone. In addition, being able to simply read the words rather than having to do the motor planning and processing required to copy them enables him to focus his energy on thinking about the Aim and answering the Do Now -- energy that is lower at the end of the day, and is also being spent managing his attentional difficulties by trying to remain focused.

I also didn't give him a pre-written piece of paper today with labeled headings for the Aim and Do Now.

The combination of factors yielded class notes that are difficult even for him to read, and doesn't strike me as being an example of productive work.

Therefore, since this is already a management need on Cooper’s IEP, I feel it is in Cooper’s best interests to continue to be provided with a printout of the Aim and Do Now on an ongoing basis so that he can use his energy to focus on the material being presented and reduce the amount of additional writing required during class.

I realize this is extra work on your end, and am deeply appreciative of your support in helping Cooper do well in school.

---

I got a nice response back from the teachers just now:

Hi Ms. Mom,

We can see how providing Cooper with a printout of the Aim and the Do Now is especially accommodating for him because of his dysgraphia related needs. We made sure he received one today and can continue to do so until you feel it isn’t necessary.

Thank you for keeping us updated.

---

I know the teachers have good intentions, but in my book this is a permanent management need that enables Cooper to use his limited energy for doing the work in class.

So I will ALWAYS feel that it is necessary.

I wonder if the teachers didn't understand why this particular management need is on Coooper’s IEP and that is why they asked if he still needed the printout. 

As a parent, I’d much rather explain the thinking behind a management need than be asked if it is in fact necessary. 

Obviously, a trained professional thought it was necessary and Cooper’s IEP team in elementary school agreed, otherwise it wouldn’t have been added to Cooper’s IEP.

As Cooper’s advocate, until he is able to effectively advocate for himself, I feel that the management needs on his IEP should remain in place until we or the school does updated neuropsych testing that shows he no longer has ASD, ADHD, or dysgraphia -- since those learning impairments prompted the need for these specific accommodations and management needs.

Am I picking the right battles to fight? 

I don't always know. This one helps reduce my son's anxiety and boosts his self-esteem since it is one less thing for him to worry about.

Of course, now that I'm looking through his binder, I'm wondering if where the printout of the Aim and Do Now is for his other co-taught classes. 

Did the other teachers decide he didn't need the support? Um, it's not exactly the teacher's call if it's in his IEP as a management need (and that's per federal law, folks!).

Did the other teachers think it looked like he seems capable of writing three sentences each day? Well, yes, he CAN write. It just costs him more energy than a kid without these impairments. So where is it most productive for him to spend his energy? Copying stuff or coming up with independent thoughts to respond to the questions posed in the Do Now?

(As for him using a laptop and typing class notes ... working on it, just not there yet!)

I don't get it. Teachers don't start the year off implementing management needs on IEPs verbatim because -- why, exactly? 

They want to see if the student really needs the support? 

What happens when the student does actually need the support? 

How do the teachers know? 

Usually it's when something goes awry -- a bombed quiz or test, incoherent class notes that are useless for doing homework or studying. Something that makes the kid feel stupid or incompetent or otherwise unable to do the work he or she so desperately wants to do.

My two cents -- please just follow the IEP from Day 1! 

It is there for a reason. 

We parents don't just ask IEP teams to put ridiculous supports for the hell of it. 

We are guided by reports from psychologists who specialize in diagnosing and working with learning disabilities -- reports that cost us thousands of dollars, btw. 

Until next time ...

Hi, folks. It has been a while since I've posted. Is it a cop-out to say that things have been complicated? 

Most of my time has been spent dealing with Cooper's stuff and the upcoming transition to middle school in September. He's also reaching an age where I'm hesitant to say much of anything about him in case anyone he knows comes across this blog and either says something to him or squirrels the intel away for future use in a negative manner. Growing up is hard enough without your mom telling the world about all of your challenges, right?

Anyway, I was trying to sort through the muck that is my Yahoo email account, and I came across a short story I wrote about four years ago.

The Annoying Child

It was time for Goober’s bath.

“Goober! The timer went ding five minutes ago! Stop dilly-dallying. Bath now!,” his mommy shouted.

She sprayed the tub with Organic Au Naturel Tub Cleaner and was disappointed that, in this case, organic smelled like cow manure. She rinsed out the tub with water and turned on the faucet.

“Goober! I’m going to count to three.”

The house was quiet.

“Goober! Please bring your pajamas to the bathroom. Let’s go!”

More silence.

She picked up the novel she was reading and decided to spend a few minutes enjoying the unexpected serenity.

She put her hand in the water, which was now cold. Oh, well. People who want a warm bath should show up when they’re supposed to, she thought.

Maybe he got lost on the way to the bathroom.

So his mommy looked in the living room. He wasn’t inside the TV. He wasn’t on the sofa or the chair. He hadn’t put himself away in one of the containers of Legos. In fact, he hadn’t cleaned up his Legos at all. But that wasn’t unusual.

She opened the door to his bedroom. He wasn’t hiding under the bed or the sheets. He wasn’t in his underwear drawer. He wasn’t in his closet.

Where was he?

She went into the kitchen. He wasn’t in the refrigerator, the oven or the microwave. 

She pressed the foot pedal that opened the trash can. No Goober. 

The sink only had dirty dishes and the dishwasher was still full of clean dishes that she needed to empty. 

She opened and closed each of the four drawers in the kitchen. No sign of him.

Maybe he was in the linen closet. Nope. Only sheets, towels and toothbrushes. Coat closet? 

Not there either.

Huh.

Maybe he accidentally got picked up by the recycling truck.

His mommy was thirsty so she got a glass of cold water and sat down at the kitchen table.

Her foot touched something that was strange and familiar at the same time. It felt warm and soft. She kicked it gently. She kicked it again, less gently this time. She heard an odd “Mrrrr. Mrrrr. Mrrrr.” sound.

She bent down and peered under the table.

There was Goober. Why hadn’t he answered her before?

He held up a tube of Super Strong Glue and pointed to his lips. 

They were glued shut.

Well, she’d always said she wished he had a mute button.

Chapter 2

After spending $569.34 in emergency medical care to deal with Goober’s glued-shut mouth, his mom was in no mood to listen to him talk about which Lego set he wanted to buy first with his birthday money.

Or which Lego set got the best reviews on Brickset. Or which Lego toys the kids on the bus thought were cool.

Instead, she decided that he would need to earn back all of his Legos, piece by piece. There were four plastic bags full of Lego set instruction manuals, so he must have at least 30 sets. Each set had a minimum of 50 pieces which meant -- now she was giggling -- a lot of good behavior to get those Legos back!

So Goober’s mom told him that his Legos were being removed as a consequence, and he could start earning them back immediately each time he did something expected that demonstrated good behavior:

-- Pee in the toilet (not on or around it).

-- Pick his nose only in private (in his room or in the bathroom).

-- Pound on the door when Mommy or Daddy is in the bathroom ONLY when there is an emergency (defined as something involving blood, fire or a combination of those elements -- not when he had a Lego-related thought or question).

-- Deposit his spit into the bathroom sink (not onto the sidewalk, carpet or his mother’s shirt).

-- Say “No thank you” in a polite voice when he doesn’t want to eat something (rather than scream, “You want me to eat that disgusting slop? What, are you from Mars? No way!”).

-- Control his impulse to say “Smell my butt, butt, butt, butt, butt” or “Somebody farted, farted, farted” in front of anyone, particularly his 2-year-old cousin who liked to repeat everything that Goober said.

-- Talk about anything besides Legos.

There might have been more criteria on the list but Goober had stopped reading it by then.

There was no way he was going to do any of that. This was his house, too! Mom and Dad weren’t in charge. He got a vote, too, and he voted, “No, no and no.” Three no’s, just in case they weren’t listening the first two times.

He wanted his Legos back RIGHT NOW. So, once his parents were asleep, he would sneak into their room and take back all of his Legos. All 16 shoe boxes of them.

But he hadn’t planned on one thing.

The Legos weren’t in his parents’ room.

Chapter 3

The Legos, as it turned out, were in Mr. and Mrs. Smorgashboard’s storage space in the basement. 

Unfortunately it wasn’t as sanitary an environment as his mother had hoped, as pigeons had built nests inside the space, so the lids of the shoe boxes that contained the Legos were covered in dried bird doody that had hardened and couldn’t be scraped off.

Goober was making a solid effort to earn back his Legos. On a good day, he got as many as 55 pieces.

But he was bored. SO bored.

So he decided to be annoying while still being well-behaved. 

That required some thought.

First, he grabbed his mom’s Flip camera and made movies of himself yawning and brushing his teeth. Then he filmed himself poking through a bag of popcorn to identify which pieces were burned. He offered his mom the burned pieces. She thanked him for his generosity and said she would make her own popcorn.

But he was still bored and it was taking forever to earn back his Legos.

One day he was helping his dad with the laundry when he saw Mr. Smorgashboard walk down the hall toward the storage room.

“Dad, I have to go to the bathroom,” he said. 

When his father turned to open the dryer, Goober scurried down the hall to follow Mr. Smorgashboard.

“Mr. Smorgashboard,” Goober called out. “I have an idea!”

Goober ran up to his neighbor and told him that he knew his Legos were taking up a lot of space in the storage unit, and he’d be happy to take the Legos back.

Mr. Smorgashboard, who hadn’t even known that some boy’s Legos were in his storage unit, couldn’t see the harm in liberating space so his wife would have more room for whatever they needed to put into storage.

So after they arrived at his storage unit, and he saw the poop-covered boxes that Goober was talking about, he got out his large cart and they stacked the dirty boxes inside.

When Goober’s mom returned home that night, she tripped over box after box of stinky, pigeon-crusted plastic. She wanted to scream, but instead she smiled.

This was undoubtedly the work of her annoying child.

###