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Noah For President

We had an IEP meeting this morning, a pretty big one. It was the first of TWO meetings planned for the transition to middle school (heyyyy there, fellow olds!) and this was also a "re-evaluation" year, which involves a metric shitton of testing and assessments to determine exactly how Noah's disabilities are impacting him at school. 

Of course, in my paranoid, neurotic brain, you can go ahead and replace "how" with "if," and then spend a few sleepless nights practicing the imaginary arguments you're going to have when the IEP team decides your child no longer qualifies for any services or accommodations, bye bye, have fun in middle school, watch out for the grizzly bears, good luck to ya. 

(That did not happen, by the way.)

We knew going in that Noah did very well on all of the individual tests and assessments. His grades this year have been outstanding, and barring that one unfortunate debating debacle early in the year, behavior reports describe him as focused, hard-working and an all-around delightful, well-behaved kid.

In some schools, yes, those positives can be spun into a "it's time to reduce services/increase mainstreaming/drop to a 504 plan" kind of discussion. Our school, thankfully, was fully "NOT TODAY, SATAN. MIDDLE SCHOOL'S A-COMING. BATTEN DOWN THE IEP HATCHES."

Thanks to the glory that is standardized testing, Noah technically still falls "below grade level" for math, something the team feels is more of a failure on the testing side, rather than an accurate gauge of his actual math skills and knowledge. So several more testing-related accommodations have been added going forward. Everything else in the IEP is staying put, even stuff he doesn't use all that often anymore (noise-canceling earmuffs, OT breaks for vestibular input, etc.). Keep it all in, touch nothing until we see how the transition to middle school goes, if it ain't broke, don't fuck with it. 

We also walked out with a significant increase to psychological services, to focus on social skills and peer interaction. And while the team felt Noah's level of improvement meant Extended School Year (ESY) options weren't 100% necessary this year, as soon as I mentioned how much Noah loved the social skills ESY program he attended last summer and that honestly, we thought it made a huge impact and we'd love for him to do it again, they were like, oh, okay, DONE. 

Jason sat next to me, and I heard an audible sigh of relief from him at that point. The summer program had been the thing he'd been most worried would get taken off the table, and the thing he'd been mentally preparing to fight for. No need. He's in. 

After our last meeting, when we initially discussed all the academic and psychological testing that's required for a "re-evaluation" year, I left feeling a little overwhelmed, like we were going to have to basically "re-prove" Noah's diagnosis of Autism Spectrum Disorder. (Well, ADHD as well, but kinda hard to deny that one when a simple medication switch in the fall [Concerta to Vyvanse] made a hugggggggggggggely noticeable difference practically overnight.) But ASD is the diagnosis that justifies the majority of his protections and accommodations at this stage, and given how many years we went being told that nah, it's just Sensory Processing Disorder, he's just quirky (or some other related label that doesn't get you squat from schools or insurance), I still sometimes worry about having my high-functioning kid fall through the cracks...simply because he IS so high functioning. For which I'm grateful! But still! He's this high functioning because we've been fighting this fight since toddlerhood, to get him services and help and support. 

And I know we will continue to fight the fight, even when -- like today -- it's not really an actual "fight." It's not us vs. the schools or the insurance company, or us vs. who Noah is and who he will always be. It's all of us, together, working to carve out a unique, successful path for one uniquely wonderful individual. 

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Comments

Darra

I'll vote for him.

Jean

He has my vote! As a mom of a high functioning spectrum kid, I offer this advice. When my son transitioned to from 5 to 6 (elementary to middle school - he is a 7th grader now) all the fifth graders spent a day at the middle school - near the end of the year. However, there was also a small group of kids with "issues" (any number of things from spectrum disorder, adhd etc) that went over on a separate day to retour the middle school and to get more comfortable. If you can encourage them to do this, I think it will be a huge help.

Also, the first 3 months of 6th grade were tough, but the teachers in 6th grade are also very supportive they know the transition can be hard. Make sure you get to know the guidance counselor in the middle school. OUr school assigns the same counselor all the way through which I think goes a long way toward developing trustful relationships with adults.

Noah is going to continue to be awesome!

Ang

I needed to read this today. My high-functioning 3rd grade boy moved into a special ed, Austim Spectrum class yesterday. The decision to do this was in an intense IEP meeting during which I cried and cried in a roomful of 8 people (embarrassing! I'm not a crier.), who lovingly and compassionately recommended the ASD class for him because everything we had done to keep him mainstream just wasn't working. This required a change in school for him and his brother (two elementary schools 15 minutes away from each other, but on the same schedule = nervous breakdown for me). I've spent the last couple of weeks ranging between all the possible feels - sorrow, gratefulness, fear, hope, guilt over little brother having to leave his friends, mommy failureness, happy for him that he will be with kids like him and not be the odd man out, worry that he'll still be the odd man out. Just everything. And now you've reminded me how far we have come from when he was 3 and pacing and wringing his hands and tuning us out (and people were just trying to tell me he was still okay), to today where he is a social, dynamic, amazing human who is just struggling in the neuro-typical world and needs more support, which the ASD class will give him. Thanks for lifting my spirits.

Bev

I am so thrilled for Noah, and for you and Jason! My 42 year old son was only officially diagnosed as ASD in 2008 when I arranged for testing before he married his ASD wife. In elementary school he was classified as Learning Disabled and through an IEP was authorized for all available services. In our small midwestern district that meant he was mainstreamed all but an hour a day and had speech therapy once a week. I even had to decide, when he was in first grade whether I wanted that time spent on reading or math; he would not get individual attention on both. By high school, the golf coach was the special ed full day classroom teacher. My heart still breaks as I type this. That is all there was available in the early eighties, no psychological services, no social/peer skills development. My son's life would be much different today if he had been provided the variety and level of support that Noah has available. You are all so fortunate and I am so very happy for the classification and support available in your area.

Jessica

This is great, but I'm sorry, he CANNOT be middle school age.

Elizabeth

I'm pretty sure you accidentally typed middle school. There is no way Noah's close to middle school age. My son is a year young than Noah and he was about 467893775 years before middle school.
This is also our re-evaluation year. Testing is wrapping up. Almost time to schedule the meeting.

Ang - my kids are in 2 different elementary schools, too. My son goes to a school the specializes in high functioning ASD. I was very upset when the told us they wanted to move my son to another school. But it was been great. He is thriving. I hope you have the same luck with your son and his new school. (there were many tears the first few weeks - none of the tears were from my son. ;) )

Cheryl S.

First, I agree with the poster who said you should tour his middle school more than once. We did this with my daughter and it was a great decision.

My daughter has different issues than Noah (Anxiety disorder) but I found her elementary school more than will to put EVERYTHING in her 504 plan so that she could get whatever she needed in middle school (She started middle school this year.)
I also found her middle school to be incredibly understanding/helpful when it came to her issues. That support from the teachers/staff has helped her IMMENSELY. She is doing amazing, and I'm super proud of her.

I hope Noah has a great transition. He's 10 now? So, Noah for president in 2032! (If I have his age right, he'd be 35. Youngest President ever!)

Miriam

We recently had our IEP re-evaluation meeting for my daughter and my sigh of relief that it's going to continue was so surprising given my complete anguish when she was diagnosed. It's so nice knowing there are so many on our kids' side!

Also, so curious to find out how Noah responded to the Schuyler Sisters revision of America the Beautiful during the Superbowl. When they sang, "sisterhoooooood" I immediately thought of Noah and his revisions to the Constitution.

MJ

Noah is very lucky to have you as parents. And vice versa.

Lauren

Bravo mom and dad. You guys are awesome. So is Noah!!!

Laura

I'm a mid 30's gal with no kids who reads your blog regularly bc I love your voice. I also read Girls Gone Child regularly. I hope you guys are able to link your kids up together some day because honestly, those kids together will make things happen! I bet one day Chef Ezra will be cooking the hottest dishes in the DC metro!

Amalah

Our next meeting (in April) will include the middle school's full IEP team (whom I have been repeatedly assured by our current team is amazeballs, also our next door neighbor works in the middle school's guidance counselor office and is already like I WILL FIGHT FOR THAT KID U JUST LET ME KNOW HOW) and yes, we will be touring the school several times. Plus the summer school program will introduce Noah to a bunch of kids attending his specific school. He's excited!

(I'mstill like, holy godballs, MIDDLE SCHOOL NOOOOOO."

Suzanne

Oh, if only I still lived in Frederick. This fall, I start my dissertation research and I need three middle school students with ASDs to use an iPad application with 3D modeling of circles to augment their traditional classroom instruction in calculating perimeter, diameter, circumference, and area.

Why? Because I saw with my own son those oh-so-present difficulties with math. If it isn't concrete, he doesn't get it.

Relax. In the middle school years, there are more people at those IEP meetings and believe it or not, they are MORE invested in keeping those students IEPs intact.

Courtney

I'm so happy that the IEP meeting went in a positive direction, his school sounds amazing! I finally stopped fighting and now we homeschool. And while it has been great for so many reasons, my heart hurts that the school fought so hard against a high functioning kid that needed just a bit more.

Kris

We have already had our 2 meetings. Yay!! We are in a reevaluation/going to middle school year as well. First, the school recommended not retesting which I was happy about because Lordy it's a lot on these kids. And second, I learned that once you are in special ed they can not make you leave. My son will have his next evaluation in 9th grade. I asked, what happens if they think he doesn't need services then and I was told they can't make you leave. Now, that doesn't mean it won't be a fight but they can't kick you out of special ed which was a relief to me. I wasn't really sure how it worked if their testing came back saying "he's fine".

liz

Our local middle school had a week-long summer camp for kids who were anxious about the transition from elementary to middle school. It was sort of a trial run thing to get everyone comfortable with the schedule, the lunch room, etc. My son didn't participate (we had already had him scheduled for a different camp), but several parents said it was very helpful. Does your middle school have something like that?

julie

I loved your ES (we had our kid in there for RECC, but our k-5 is a different school). We are going through the dreaded almost 8 y.o. assessments. Thank you for sharing your family's story, it has helped me and my family as we work to give our kid all the help he needs.

Erin

Yay Noah!!!!! I can't believe he's starting middle school. I was reading this thinking "geez, I wish they gave ALL kids services focusing on social skills and peer interactions." Even waaay waaaaaay back when I was in middle school. That's a weird-ass time in one's life, yes?

Anyway, fist pumping all over the place here for you and Jason, for Noah, and for Noah's fab school system and all the great people who work in it!

Liz Carter

I imagine that at times you don't want to disclose too much information about what is going on with Noah but I have to say that my selfish side devours it all and only wants more. My son is 11 and finally getting a full IEP as he got a perfect standardized test score in English and near perfect in Math, but is failing English (he reads and comprehends at a high school level!) and Science completely. Which, turns out is a pretty big red flag when there is such a discrepancy between test scores and classroom grades. I am actually quite grateful a variety of tests exist in the school system because that was such a concrete signal to them to move forward finally (and that I pushed on several fronts). Noah sounds so amazing in his accomplishments. Emotional regulation is a bear for us. I can't help but feel the hormones are kicking in and if you ever post anything in that vein, please know how much it is appreciated. My son says it is like a switch for him and he can't even understand why some days he is in the green zone and some days ... it's like he isn't even there.

Emily

We have a meeting next week to get my son's official diagnosis from the school (he's in kindergarten). This was a really helpful post that what seems incredibly scary and overwhelming right now might end up OK.

Kris H

My daughter has been on Vyvanse for 5 1/2 years now. We continue to be amazed by how well she can focus and settle now.

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