I’m sorry I can’t even help myself… 🤣🤣 If you follow along, last week I wrote allll about the feels at school. Today is about IEP stuff… and things we do to make sure Elle can make it through a day of school being somewhat regulated throughout her day…. It’s late May….. schools out on June… and friends….. we just finished up the IEP and BIP… we started the IEP amendment- basically re write- back in January.

My Sonshine’s IEP… super easy. He gets massive anxiety so he doesn’t get timed tests. He has speech. He gets pulled from class 4 times a week for ELA help. His IEP is standard. Super easy. His meetings consist of 5 humans including myself. In and out in 45 minutes. Easy peasy. His are a breath of fresh air compared to Elle’s.

Elle. Freakin Elle. Where do I start… that’s always the question. Let’s start back when she was first given one. First she had an IFSP, Individualized Family Service Plan. They get these until they are 3. Elle’s were easy. We had a fabulous case worker at our local regional center. Elle did ABA therapy full time… once she aged out of the special needs preschool we have here, we decided to do homeschool preschool and do full time ABA….. at the ABA center. Applied behavioral analysis. It was what we felt was best for our girl. People have so many opinions about ABA. It saved her little life. And ours. It was the right choice🩷 The year before she went into Kindergarten, we decided we needed to put her into preschool so she could get the hang of a public school schedule and setting. She went. To a preschool in the school district. She went part time to ease in…. With a one to one from her ABA company. She was the first child to do so. Blazing the way 🩷 After that, another child did the same. I was proud. Anyways..

So the IEP started. It was blah blah. The IFSP was so easy and nice. Elle was Elle. She was seen as a loving little Elle. The moment she aged out and went to an IEP, I felt like she turned into just another number. One of many in the system. Just another number who needed an IEP. Not a little girl who was struggling and needing help to navigate a school day. I did these meetings always without my husband. I’m independent and decently smart. I let him work and I try to handle things until I really need him. It’s what works for us. I always felt supported and no need to have him miss work and come attend honestly. One IEP at the preschool and I was angry. Upset. Felt invisible. Elle turned into a number. NOPE. All the nopes. The year went by just fine… Mainly because I hired and paid for an ABA therapist to be Elle’s one to one aide. But once the year was coming to an end, me being the insane planner that I am, started panicking about the upcoming school year……

Since we were in a preschool part of the school district…. Who knew that would be a helpful thing, I was told that I could ask for assessments for the following school year to be done so she could go into Lindergarten ready to roll. What?! I know, insanely amazing. Most children get sent into school freely, even when struggling. IEP meetings happen the first month or so of school generally. Every ounce of my being wishes this was all so easy, navigating the school setting. Special needs parenting is hard enough. Then kids who are struggling get assessed and help within a couple of months into the school year. I already knew that wouldn’t work for Elle. I asked for assessments in March for Elle. Assessments are good for a year. No one at the preschool knew the laws or what to do. I made some phone calls- once a district is notified that you want assessments, I recommend emailing them, or going to the office and getting a time stamp, they have 15 days to give you a game plan and 30 days to do the assessments. It took all of this to make it happen, and then boom, Elle’s being assessed.

The IEP meeting when we would get the results and such, I brought back up. My husband came. Our regional center case manager came. I was prepared. I felt in control. I did however feel like it was us against the school district. That’s a shitty feeling. Everyone should be TEAM Elle. During these meetings is when I learned Elle had turned into Student 300378 instead of Elliott. This was two parts. I was told she wouldn’t qualify for a one to one. Side note- I’m really good at hearing, she won’t qualify for that, and making them assess and do the things anyways, and 9 out of 10 times, she qualifies. Do all the things, all of the time. Always try. This is something that crushes me. Lots of kids need the help to navigate the day to day in public classroom setting. I think it’s such crap that basically the only answer is for them to struggle or go into a special needs classroom. There’s really no in-between. There should be. It’s bullshit. But everywhere is understaffed and under funded. I did my research. Did the things. We got everything we wanted. Everything Elle NEEDED. Elle was going to head into Kindergarten with an aide. Going shorter days due to her Epilepsy causing stress seizures. And we’d get to go into the school a few days before to meet her teacher- see her classroom- and take pictures of where she’d be so she’d be prepared. I am not going to lie- I felt like a boss. I felt somewhat calm going into the school year….. I felt like Elle’s IEP was pretty good. By somewhat calm I mean….. well… I wasn’t calm. I was a mess 🤣🤣🤣 School is scary.

So anyhow- Elle started school in the fall. My big girl. It went horribly…. See my last weeks blog to hear all about it, so much crying…. On my part🤣🩷 Anyways…. It just wasn’t working. If this was going to be school then I want out. Fuck. This. My girl doesn’t need everyday to suck. On wonderful Facebook, a fellow special needs Mom friend of mine posted that she hired a special needs advocate to help with IEP stuff. I thought, mhhhhh I’m good. Elles IEP is pretty solid. And I’m vocal. I got this. Thennnnn I started following the advocates Facebook page. The Bridge Coaching Services. Look her up. Please look her up. Her business card is pictured at the end of this post. She posted info about a free consultation. I was unsure if I needed her help. I talked to my husband and did a consultation.. After one meeting, I knew I would do whatever to hire this magical woman.. Kaela.

Once I hired Kaela, we went to work. Called for an IEP amendment… y’all know you can ask for one any time of the year if you want?! Yup, you sure can. We met multiple times. We combed over her IEP. Made sooo many notes. Turns out, we needed to scrap the entire IEP basically and rebuild it. Guys. I’m talking hours. We spent hours together, over coffee and snacks. I spent hours on this. I don’t even know how many hours Kaela spent on this. But fing hours. She had so much magical information.

We ended up having 3 meetings for this IEP…. 3…….. 4 hours of meetings with the team at school. It started off rocky. It ended up being such a beautiful masterpiece that I’m incredibly proud of. Kaela taught me to come prepared and armed with resources, info about Elle’s diagnosis and info about her learning struggles, the affects her tumors have on learning, her gestalt language processing, just all the crap. And guess what?! Elle is now staying at school until 1:45 every damn day. Her IEP is full of accommodations and modifications to help keep her regulated enough to make it through her day. Don’t be afraid to ask for what YOU know your child needs. Weighted lap pad? Yup. Built in breaks multiple times a day to keep her regulated? Yup. Special potty to make her comfortable enough to go to the bathroom at school? Yup. Camp chair just for her to sit in a rug time so she will actually sit with the class? Done. Tons of icons and visual schedules are also in there. I get time every month to check in and see her present levels. I know it sounds like a no brainer but communication is super hard when your kid has a team this big. And when your kid can’t communicate her days with you, it’s hard being in the dark. We also now get daily notes home from her aid. About if she went to the restroom and if it was prompted and what time, her over all mood, if she had seizures, and just a little run down of her day. It’s all brought so much more ease into school life. Elles team did amazing coming together, we were heard. Her needs were met beautifully. I have nothing but wonderful things to say about the school my children are attending, but I can only speak of MY personal experience. I hear so many horror stories. And I’m so thankful that our story is going pretty smooth. Another victory down. ✌️

Adding a BIP. Well- that brings us up to party 4. Which we ran out of time at. Behavioral intervention plan. It attaches to an IEP. Who knew…. I sure didn’t. The school Bcba comes in and watches your kiddo and takes notes. Then they make up a plan of action to help stop the behavioral issues at hand…. Which shouldn’t be called behavioral issues…… it should be called, “ this is the kind of crap my kid does and is a tiny butthole but not on purpose, it’s because she’s so damn disregulated she can’t function issues.” There’s generally a reason behind the behavioral stuff. Oh, ok she screams non stop. Well why? What’s happening before? She can’t express herself so screaming bloody murder tends to get her point across….. as does elopement……. Anyways. After lots of back and forth, my advocate and I meeting with Elle’s at home Bcba, we came up with a great BIP. We will work on this stuff at home all summer long. I’m feeling hopeful that next year will go a little smoother… it’s super amazing what can be accomplished with all hands on deck. I wish schools were more open to welcoming outside companies so everyone could be on the same page. That’s one thing we still do, we still do at home speech and OT even though it happens at school. I’ve now signed a million ROIs so everyone can communicate so Elle can progress and grow in a way that works and is best for HER to do so. I like to think it will all get easier… but I don’t know if it will honestly. At this point, public school is working for us. Will it forever? Who freaking knows. But right now, it’s feeling possible. And that’s damn amazing. I lost all hope for a bit. But the power of a good IEP can be life changing, I’m currently seeing that in live time.

The best piece of advice I can give you? And I really hope it sticks…. GET IT IN WRITING. Some teachers are magical and go above and beyond for you. Some are so patient and just know how to help. Some don’t. That’s just life. Well, what happens if that teacher leaves? Or you move your child? You want someone to be able to pick up that IEP and seamlessly integrate your child into their new classroom or space. With minimal hiccups. It is beyond exhausting to explain your child’s needs to the new aid or new staff who can sometimes be like a damn revolving door. I also get super emotional whenever I’m meeting new team players for Elle. Constantly rehashing her differences and struggles is fucking rough. Once I was told that, it totally opened my eyes. Wording, wording is everything. I had no idea how powerful just the rewriting of a statement could be. Phrasing your needs correctly is huge. I often hear, oh yes they do that for my child but it’s not in their IEP, they are just great and do it for us… that’s so lucky and amazing, but it won’t always be that way…… so, get that shit in writing. Never sign the IEP immediately. You can take all of the time you need. It won’t go into effect until you do. But no pressure. I was so scared to tell them I wasn’t signing right away. I really thought I had to….. nope.. nope nope nope. I’m currently sitting here going over Elle’s IEP and BIP. And We’ve finally reached a beautful end. I’ll sign this week. And I feel such immense amount of relief I can’t even begin to explain… Elle has the opportunity to be fully and beautifully supported. I’m feeling so grateful and relieved and hopeful. Fight for your kid. It’s exhausting and uncomfortable and ugly. But I promise- it’s worth it. Do the hard things. I promise it will help. Educate yourself. It’s so important.

This journey has opened my eyes.. this entire special needs parenting situation. I very strongly have felt like I want to get involved somehow and help others in some way shape or forgot. Can’t be a behavioralist, I don’t have any schooling…. So I’m limited. I finally feel like I’m at a point in my journey where I can help others. Be there for others. Support other humans and just listen to other humans who tend to drown like me. And thanks to Kaela, my eyes are wide open. I’ve fallen in love with this process and advocating. And I know with every fiber in my being that this right here, advocating in the school setting, is what I’m meant to do with my life.

I’d love to hear from you all. About anything. About a tiny win like your child putting their own shoes on(my kid still can’t do that correctly so actually this is a big win) and a big huge win like being able to spend a day at school without melt downs and disregulation. Please feel free to always comment on my posts. And find me on insta at mommingforever and feel free to shoot me a message. I love hearing from you guys. There’s something so incredibly powerful in connecting with other people out there who are in the trenches and living this life with me. This online community has been such a source of light and knowledge for me. I hope to do that for others with this space.