Things That Do Not Work, Part Three

Magic Ike

We had an IEP meeting yesterday.  Another IEP meeting in an endless series of IEP meetings. Yesterday's meeting was for Ike, and then there's another meeting for him in February, and then one in March for Noah, and I think one more after that, to finalize his schedule for high school.

(Tonight is technically Ezra's middle school orientation, but we're going to skip it. We already know everything about the middle school and how things work and where the IEP meetings happen.) 

The purpose of the meeting yesterday was to go over Ike's reading and writing levels and finalize the academic parts of his IEP. It was an unusually tense meeting.

The district imposed new rules for who can receive certain accommodations for standardized testing. Ike meets every single criteria except one: He's been receiving services for dyslexia for one year instead of the required two. So he'll get extra time, but nothing to help him read or decode the test questions. I thought back to kindergarten, when I begged his teacher to have the school's reading specialist come and observe him, to look at his mixed-up writing and spelling and his struggles with basic sight words.

Wait and see, the specialist told me. He's still really young. He still has plenty of time to catch up. 

Three years later, the "learning to read" portion of elementary school is ending and the "reading to learn" part is about to begin. He's still over a year and a half behind his peers. 

The special education team understands the urgency and is pushing for the maximum amount of service hours, while the rest of the team is worried about his time away from his peers and the scheduling headaches his pull-out time creates for the general education classroom. 

"The schedule is not Ike's problem," his special ed teacher said at one point. "The schedule is our problem, and it doesn't get a say in his IEP."

I like her a lot.

***

We decided to surprise Ike with a laptop for Christmas. I previously told him he could get one once he got his reading back on grade level -- a super unfair expectation in retrospect, but we didn't fully understand the scope and depth of Ike's learning issues at the time. Plus, a computer could really help him, with the spellchecker and text-to-voice features and dyslexia-friendly fonts and whatnot. (You know, all the testing accommodations he'll qualify for...next year.)

On Christmas Eve, Ike made me promise that if there were any presents under the tree that we didn't personally put there, we would tell him. He really wanted to believe this year, again, somehow

And so I wrapped the laptop in different wrapping paper and hid it under the small tree in our living room, away from all the other presents under the big tree. I printed out a label so there would be no handwriting giveaway. We all pretended to be surprised and baffled by the gift, which was the very last to be opened. 

Ike was shocked and thrilled and for a moment, convinced that magic did exist, after all.

MVIMG_20191225_083841 (1)

***

Next month is another meeting; this one will go over the school psychologist's evaluations and assessments and add social/emotional goals to Ike's IEP. She has one more in-class observation to complete, but dropped plenty of spoilers yesterday.

"The rating scales for social anxiety and depression are super high," she admitted. "He's also incredibly bright and very much a perfectionist, so basically school must feel like torture for him most of the time."

Ike started therapy last week. We didn't need the rating scales to tell us the obvious. Everybody looked relieved.

***

A few days after Christmas, Ike stormed into the kitchen with a roll of wrapping paper in his hand. He held it out accusingly, without a word. It was the same paper I'd used for the laptop. I'd hidden it deep under the bed in our guest room, and planned to sneak it out to the garbage on trash day. He'd crawled under the bed in search of  the cat and found it. 

We tried to stammer out a flimsy cover story but it was too late. The jig was up, he was onto us, and the final wispy embers of his belief in Santa were extinguished for good. 

He still really likes the laptop, though.

Ikes emails

(He also really really really REALLY loved his Elf Jr. The Musical Jr. performance. He's already signed up for the spring show, which is Beauty & the Beast Jr. "I just hope there's no kissing," he told me.)

 
 
 
 
 
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Ike's much anticipated THEATRICAL DEBUT! He sang, he danced, he got one of the biggest laughs of the night with some killer line delivery.

💯🔥👍🏆🤩" - Ezra

Oh my God how long IS this" - Noah

A post shared by Amalah (@amalah) on

Comments

SnodV

OMG - it has been YEARS since we have been in touch, I used to blog as Mortimer's Mom.... anyhow I just stumbled upon this on twitter and I wanted to tell you that I have been right where you are (minus the Santa part, we're Jewish!) but my now 17 yo had to switch schools in grade 4 because of the learn to read / read to learn thing. But with an iPad and the right school and a good IEP carried out by caring teachers, a reader and scribe for exams, she just texted me that she got 62% in her history final and she will graduate grade 11 with her peers.
So hang in there - Ike will be just fine. And then he'll get his driver's licence and work on weekends and hang out with his friends, just like my amazing daughter is doing.
virginia, formerly Mortimer's Mom

Lori

I have been that special ed teacher in the IEP meeting and I like her a lot too and I like you a lot for recognizing that she has your back and is doing everything she can for you. Some parents just lump everybody at the school together and think of them as the enemy which serves nobody. So good for you for not being That Parent. Also, my husband who is dyslexic (and is an engineer turned physician, the second part through absolute herculean effort) does really find the dyslexic-friendly fonts to be helpful. And it's so, so great that he's finding success in theater. That's going to help a lot. You're doing everything right, Mom.

jaclynn

da fuq? am i reading that right? he needs to struggle some more first and THEN they’ll let him use his tools? that’s like saying “hey, i know you just learned to swim yesterday, but swim up stream first and THEN we’ll give you a life preserver” seems cruel and borderline negligent

Erin

Fellow mom of kiddo with dyslexia (and more...for extra fun) - audible has been a lifesaver for us. Turns out my kiddo loves to "read" - when he can listen to the book. The readers are generally very good and for middle school and highschool English, this is super helpful to make everything more palatable (instead of the dry/electronic text to speech that you get with some programs - though that is still great for textbooks). Still a good purchase for an elementary student for pleasure/fun "reading".

Mine is a graduating senior this year, I won't lie and say it has been easy - but I am super proud of my kiddo!

Also recommend the graphic novel series of Percy Jackson - really helped my kid feel better about the dyslexia - Percy is dyslexic and has ADHD - and most importantly - he's a hero (son of the author of the books is also dyslexic and has grown up to be a writer).

Meg

I'm sorry. Did you say Noah is going to high school? That is not possible.

Christine

Can you just pull him from the standardized testing? Without accoms, it's basically torture for a kid with dyslexia. He doesn't need that, and honestly the school doesn't want his scores pulling down their overall one, since that's what these stupid tests are for, not for the kids at all.

If you were still in Bethesda I would tell you about my kid's amazing school, where he's been since 4th, where kids like Ike thrive. But it's probably too much of a hike from EC to be realistic. Anyway, PM me or something if you want more info, or maybe they'd be able to point you the direction of something similar...

Kate

The standardized testing thing is super obnoxious but also completely unimportant in elementary school. Opt out of them as much as possible (lots of parents just keep their kids home) and really reinforce to him how unimportant they really are (I know this is hard with a kid with anxiety and perfectionism). The only one that really gets used for anything important here (we're in the same county) is the CogAt because those scores can qualify you for GT math going into 4th grade. A low score isn't automatically disqualifying though. At my oldest's 3rd grade IEP meeting his math teacher told me that even if he bombed the test (his standardized test scores are erratic) he was still going to qualify for GT math because of his grades and other assessments.

Kim

Hi Amy, total stalker reader that has been reading you since you got Noah assessed for speech and I was getting MY son assessed for speech. Years upon years upon years. You are a bigger part of my life than you know. My son is 14 now and struggling because he's short in stature and has ADHD and is WAY more immature than his peers. They are calling him a little midget. And because he's short we had to take him off his ADHD meds in the hopes that he will GROW! But now school is unbearable for him and he has started to think that he is dumb again. His IEP is helping and I am working very closely with his case manger to get him the help available to him, but he is still struggling. Last night he told me that every day was "like living in pure hell" and that he didn't want to get up in the morning. The depression that I have always struggled with is hitting him now. The guilt is tremendous. As is the hope that I can do something to get him out of the spot he is in now. He has a new therapist, top doctors and his family all working to help him. But my baby is sad. The kind of sad that both you and I know about. And it sucks. And I guess reading about your precious little baby Ike reminds me that I am not the only one out there fighting everyday to do right by my child. And that even when we ARE fighting like hell sometimes it isn't enough and your baby struggles. So thank you for writing about it. And thank you for sharing your story and family with me all of these years. And most of all thank you for still being here. Because you being here reminds me that *I* need to be here too.

Sheryl Macnie

Hi there, first time commenting but long time reader, dyslexia is close to my heart. My 17 year old daughter is dyslexic and also found audibooks a lifesaver. She has been able to complete all her reading assignments thanks to them. Spelling is still and issue though, we live in Argentina and she is bilingual but has trouble spelling in both languages. Definitely do everything you can to help Ike with his self esteem, this seems to be the biggest issue. We had many tears of frustration over the years but she is the most hard working person I know and pushes through it all.

Megan

Please exempt Ike from the state testing!

Lori

My heart hurts for how much Ike seems to struggle, especially with the depression aspect. You’re doing everything right, and I hope for brighter days for that charming little guy.

Julie

It seems like Ike feel through the timeline cracks of an initiative designed to make sure students were receiving the supports with additional accountability they “should” get as part of their education. He, and any other child already in the whole EMT/Testing/Planning/IEP/Reeval pipeline should have been grandfathered in-one would logically assume. To test a child without needed accommodations makes a farce out of testing. The test results are not valid.

Pauline

You’ve been doing this a very long time - long enough to see that when kids hit their tweens they don’t love having their personal history shared with the world without their consent. Not talking about Noah - maybe he is fine with it, but I see friends’ kids struggling with the fact that their privacy was violated without their say. It isn’t 2004 anymore, you are old enough to recognize the costs but seem to be too selfish to care.

RzDrms

Almost every single one of the comments here (almost...so close!) are so positive and helpful and kind; what lovely readers overall. I’m so happy so many responded with such loving support. Kindness doesn’t cost anything, and I’m so glad these folks spent their uplifting words on you. You’re worth it; your family is worth it.

Laurie

I was Ike’s age when I first remember doing things that weren’t normal for an eight year old kid - like taking naps. My parents showed up and did everything they could but there was just so much we didn’t know back then. And as a former (is there ever realty a former?) theatre kid who’s Super Bowl Sunday is the Tony Awards - thank GOD (or whomever/whatever) he’s got theatre. Somehow it’s this unique safe space where you can be so ridiculous and make people laugh, and it makes the noise inside you OK for a little bit. Rooting for Ike (and all of you)!

Angela

Special ed teacher here. I hate giving my dyslexic students the standardized tests, too. They are so unhelpful. Even accommodations don't help that much. Even if passages are read aloud by the computer/a teacher, it's not as easy to do everything with audio as people would like to think. Typical readers can skim back through text to find information, and dyslexic readers can't. It's not convenient or easy to do that with audio.

Anyway. I wholeheartedly agree that you should exempt him from standardized tests if at all possible.

One of my students took random guesses on an entire standardized test and scored in the 25th percentile, so.... how much information do you get from the test anyway?

Good for you for standing up for Ike. Could you find some dyslexic adults/teenagers in the community to act as mentors? I think it means a lot to have someone in the same boat that you can talk to.

Jennyg

So every few years I go back through the archives and reread the blog. Always for different reasons. (First kid/pregnancy- ooh what did Amy go through? Second baby, toddler struggles, ooh what does Amy have to say about this?) this time, it’s reading about Noah’s speech delay and other interventions as my 2 1/2 year old has just started speech therapy. Your blog has always been an honest look at what parenting can be like. Having a real person’s experience, both practical and emotional, is helpful beyond words. Thanks for sharing the hard stuff and we are all rooting for Ike and hope he gets the support he needs at school.

Delora

It's not fun, but my dyslexic son failed the reading standardized test in 3rd (even with a bunch of accommodations), and it turned out to be one of the criteria that made his IEP re-evaluation super simple. Apparently he was close to passing, so the school wanted to re-test him, but I refused since the tests have zero impact on his progress through school at this age and I didn't see a point in making him get frustrated over the test all over again. In hindsight, I'm glad I refused so he had that failing score as evidence.

He's in 4th, and reading at a mid-1st grade level, even though he's been receiving 30mins a day of OG-based reading intervention for over 2 years. I'm currently trying to find outside tutoring because the progress is just too slow.

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