My eye opening awakening into the privilege associated with 504 and IEP plans

If any of you have seen your child struggle in school, you know the pain and frustration that comes with helping them succeed. My journey with this started when my oldest was in third grade, and this year she started middle school. I was a nervous wreck for this transition and I have to keep totally cool so she feels confident.

It was her teacher to helped us recognize that she had ADHD when she was 8. We were 3 weeks into third grade and she had all Ds. We had just started a new school so we reached out to her to meet and ask if we should drop her back a grade since she was new and no one knew her anyway. Her teacher talked us out of it, and she helped us navigate the IEP/504 process.

We FOUGHT for our kid to have 504 accommodations, and the school fought us tooth and nail for anything we asked for. It was infuriating. And even scarier, I have since learned that teachers are kind of afraid to speak up too. It took a long time to connect the dots, but thinking back—her teacher was always telling us she couldn’t put certain things in writing, only wanted to talk on the phone, and regularly told me that she “shouldn’t be telling” me this.

Still, even with 504 in hand, she continued to struggle. Her Ds moved to Bs and Cs, but her confidence kept falling. And then covid happened and seeing her struggle with virtual and screens was so apparent. This time, we didn’t have a teacher to support us through the system, so I fought like hell to get her the help she needed. We have close to ten 504 meetings during the school year last year, and while I fully understand that it’s hard for teachers to accommodate students, but this is what you signed up for. It is literally a teacher’s job to help their kids.

And still, it wasn’t enough. Push back. Lack of follow through. Infuriating.

This summer, I paid for outside testing that the school wasn’t willing to do. What she had done in third grade showed areas of weakness but nothing was “low enough” to warrant anything. But with outside testing, they can dive deep on areas of concern, and after five hours of testings, they uncovered a splattering of processing issues and dyslexia. My husband and I felt so much sadness and relief for her. All of these struggles, and the school couldn’t (wouldn’t?) help us get to the root of them.

We are beyond fortunate to have the means to go outside the school to make this happen, and it makes me so angry for all of the kids that don’t have this support. It makes me want to shout from the rooftops all I’m learning as we navigate this complicated system and it makes me want to push the schools to support EVERY kid who needs it. Not just the ones with parents down their throats all the time. Especially the kids without parents doing that.

I’m just now learning more about modifications that I need to advocate for, and my biggest advice is to look on Instagram and YouTube for people who are advocates, coaches, or supporters of special education. In just one night of prep, I learned more than I had for hours of researching formal sites online specific to the disabilities. There’s just more transparency with social channels, right?

A few key tips I’m learning:

1. Advocate for what’s “appropriate” for your child, and never use the term what’s “best” for your child. Words matter. (I have found mine twisted and used against me more times than I care to admit!)
2. Talk to others with IEP/504s. There are so many things I can ask for that I would never think of. Part of the benefit of paying over $1000 for outside testing is they will tell you exactly what to ask for. BUT, without that luxury, take some time talking to other moms or looking at others’ social accounts (I’ve been using @theiepmom this week). Did you know I can ask for a modified curriculum? A different style of testing? If a child has dysgraphia (like dyslexia, but for writing) then they spend so much physical and mental energy forming words with a pencil that it’s hard to complete work. You can ask for a SCRIBE to write out their thoughts. Or use a computer. Or ask for fill in the blank tests instead of writing sentences. ADHD? Ask for a printed copy of notes from the teacher so the child can focus on the content and not worry about losing the information before it even makes it to the paper.
3. Don’t sign anything in the meeting. You can sign the attendance sheet, but that’s it. Make sure they know you mean business. Tell them you need time to review the proposal.

As I prepare for our meeting next month, I’ve also learned that we need to set SMART goals to show that the IEP/504 is working. This is the hardest part of the plan, and in my experience, we haven’t had a ton of support here. I’m hoping middle school is better! But here are a few I found from @theiepmom this week that I am going to tweak for our needs:

• By the end of the 3rd quarter, given a 6th grade-level text, the student will support inferences with at least 3 pieces of text-based evidence with 90% accuracy on 3 out of 4 assignments. (what?!?! How good is that?)
• By the end of the year, when given a list of words, the student will be able to decode 36/40 words correctly as measured by teacher records.
• By the end of the school year, the student will read sixth grade-level text orally with accuracy, appropriate rate, and expression at 90 words per minute with 90% accuracy, as measured by teacher records on 3 out of 4 tries.

Even though we’ve had a 504 plan in place for almost three years and evolved it as needed, please consider this only the beginning of my understanding into the special education system. What is clear to me—schools are understaffed to support the needs of kids, and without significant push from parents, students are unlikely to receive the appropriate resources and accommodations.

What’s been your biggest lesson or tip with navigating 504s or IEPs? We’re just starting the IEP process with both kids and I don’t want to mess it up for them or miss something I should be advocating for. Email or DM me, please!