Wow. Hi guys. It’s been a long, long, time. The drowning has been real and present in my world. We’ve had so much going on.. from school crap and sleep regression, to Elle having some medical stuff and to her leveling up; the challenges have felt never ending.

Side note- You all heard from me two weeks ago🤣I wrote this before the blog I recently put out- I released them in a different order then I had initially planned . I have wrote in a month. And I sat and wrote three blogs in one day🤎

It’s not secret that my girl has been struggling with school. And I’ve been trying hard to find a place for her within the education system in our rural small area. Like I mentioned in a previous post- Elle is in this limbo where she doesn’t belong. Too special needs to access her education and stay regulated in a gen ed setting and yet not special needs enough for the special needs school in our area. Where does she go? There’s been so many emotions I can’t even explain them fully.

I’ll paint a small picture- I was picking her up everyday and she was so dysregulated. She would basically shut down. Shut herself in her room. Was non compliant. My Elle was just… she was lost… lost to her autism… lost to her extreme constant dysregulation… lost in herself… It became too much for me to bear. Bare? I’m not sure the correct spelling 🤣 anyways… after a couple weeks of things going wrong everyday- eating rocks at school- eating play dough- undressing in the gen ed classroom from getting water on her shirt- getting her hair pulled multiple times- I lost it. Everyday her note from her aid showed how dysregulated she was- every single day was a mhhhhh day or bad day for her. I couldn’t take it anymore. I can’t accept that for my girl. I see her bright light. Our family sees her bright light. And her world at school, they weren’t. And that’s just fucking sad. I cried everyday in the car for a solid two weeks before realizing, nope. Something major has to be done. I don’t know what it is- but enough is enough. After giving school a long try, it’s just not working for her. It’s doing more harm than good. I instantly called my legal advocate… who has also just become this pillar of support for all things school and Elle.

I didn’t know what I was looking for. I just went into action mode. My mind was flying a million miles a minute. I instantly started emailing anyone I could get the email address for like a lunatic… or a fierce, loud advocate- I’m not really sure🤣 After touring the special needs school, I went into a deep depression. Everything’s just felt heavy and sticky. It’s an amazing place. I cried the entire tour…. It was a mixed of sadness and pure relief. Something about realizing she could thrive there, it was a piece of acceptance that I needed to feel I guess. I don’t even know. I couldn’t rule it out without seeing if Elle could fit there.. and she just may. We are getting assessments done to put into our pocket just in case that’s where life takes us.

So, the first thing I did was get in touch with our legal advocate. Then, I messaged and had a meeting with our BCBA. Next, I emailed our RCRC worker and another company we are working with, a crisis intervention team per se. I instantly thought, fuck this, I’m going to homeschool her until maybe she’s mentally a little more ready to handle a school day and school setting. From there, I spiraled. But what if she’s just never fully ready? Am I the one holding her back? What changed can we make to make her thrive and actually access her education, and at this point, her happy little self?

I basically shut down every aspect of life to figure this out. It’s all I could think about. I was in fight or flight mode majorly. It wasn’t very pretty. What the fuck do we do? What’s the right thing? It always comes back to, what’s in her favor or what will hurt her and stunt her progress? The weight of it all is suffocating at times…. I have so much decision fatigue right now, I can barely decide what to make for dinner most nights.

Anyways, this amazing crisis intervention company, they are a god send. Elle’s got a team. Here’s who I deal with in a very, very regular basis

• School – here’s who I communicate with regularly.
• BCBC
• Resource teacher
• IEP case manager
• School nurse
• Gen Ed teacher
• Speech therapist
• Occupational therapist
• One to one aide
• Principle
• School psychologist

Next for non school things:

• Pediatric Neurologist

• GI specialist

• Psychiatrist

• Aba therapists and the BCBA

• Speech therapist – I also meet once a week for parent AAC device training.

• Crisis intervention company (calling it this to make it easier to explain)

Here’s the thing… Elle needs the same rules and to be learning the same things across every provider and therapist.. but how the f do you make sure everyone’s working together and using the same techniques and styles and same curriculum per se? How do I get the teams to communicate? How do I make sure everyone knows about her seizures and the little part of her brain that’s dormant and how that could affect her learning? How do I ask the school to work with our home team and to make sure my girl is fully being seen? I’m fully aware of how understaffed and over worked most school staff are.

It’s a dang lot. A lot of constant communications and meetings and emails to make sure everyone is in the loop and knowing things. This crisis intervention company- they met with me, got a million ROIs (release of information) signed, and they, they are trying to bridge the gap to get providers communicating with each other without me being the middle man. For example- right now- they are building this wonderful write up so when we get a new teacher or a new therapist, I can hand it over, and that new team player can get a huge upstanding of all things Elle- her strengths and weaknesses, her medical needs, even down to her gestalt language processing. This company was a saving grace. They popped into our world right when I needed the teams to communicate. There’s a big gap in communication between at home providers and schools. To me- that shouldn’t happen. It’s detrimental to these children that everyone works together to better THEM. It often feels like it’s you again the school district, it’s a disgusting feeling. But this time…. for the first time, I felt like we were all Team Elle. It was unreal.

This last IEP- I wasn’t alone. I had a team, a wonderful bad ass team. I had my husband, my legal advocate- our bcbc and behavioralist, and a wonderful lady from our crisis prevention company. We prepped hard. Collected data from the school. My husband and I met with our advocate for two and a half hours a few days before the IEP to come up with a game plan. I met with all of her other providers countless times to discuss how big this change was going to be and how much it would impact all of our daily lives. Anyways, we came a dream plan. It’s so important to build a dream plan. And then a realistic plan. And you just hope you win.

We did a huge 5 part IEP last school year, and it was long and hard to make sure Elle could get everything she needs to access her education. I was so nervous I wanted to vomit walking into this IEP. They are scary. I was armed with dessert to share like usual, it always helps lighten the room. My team and I walked in. It’s always really shitty to walk into a meeting to hear about how far behind your child is and how crappy things are going. And guess what? She was seen. We had soo many people from the district and school system there. We started off by saying positive things about Elle. And it just.. changed my entire day. It changed the entire vibes of the amendment. It started things off so happy I couldn’t believe it. We then looked over her raw data… around 90 verbal outburst and 100 cases of elopement…. Within the first month and a half of school… and she had missed a week due to being horrible sick… Then you guys, I told them my dream schedule for her. And instead of saying hell no, they all said, how do we make this happen. How do we get her needs met and for her to access her education and be and feel safe? And we did it. The amount of collaboration was mind blowing. We are still doing it. With lots of hard work and beautiful effort and crazy good communication from every single person involved in our world. I feel like our district and little school went above and beyond for us. For Elle. They saw that this wasn’t working for her, even with her iep and supports in place. And it feels fucking beautiful for her to be seen and her to be giving a chance to access her education. It’s pretty amazing what can be achieved when you are surround by a strong team.

One of our amazing team players told me it was a pretty amazing IEP to see and be a part of. We made big waves for our special girl. And he said something that will forever stick with me. He said I seek help. Which is funny because man, my husband offers to do the dishes and I’m like, no thanks you’ll do it wrong 🤣🤣💀 But he said, I seek help with Elle, and I listen and try to come up with what’s best for her, not what’s best for me. I welcome the ideas of others on the professional side of things. And that’s a big part of her success. I learned something recently…… I am a strong, fierce mother. A strong, fierce caregiver. And a strong, fierce, fierce special needs advocate. But the power of a great solid team, it’s detrimental in this journey. This forever journey that we are on. I feel so very honored and grateful for every single player on our team surrounding us with guidance and support and love right now.

Life’s weird. And after a medical stay and this school stress, this week feels lighter then it has in a long time. And it’s beautiful. Times like this, when you can see the calm, and hear the giggles and see the love coming through, the sheer easiness of today, it makes all of the hard days feel so much more rewarding and worth the fight. I’m going to write today. And breath. And try to enjoy this lighteness that I’m being soaked in at the moment🤎 I’m so full of gratitude… and I need to try to remember to soak in it when I can.

Ps. I’ve already started writing my next blog post- it will be about my experience with Aba therapy- even though it’s so controversial. And how it’s changed our lives in the best way. And how on days I want to say fuck everything- it’s the one thing I’ll never get rid of. I respect everyone’s needs and process on this journey. What works for some 10000 percent will not work for others. But it’s a major part of our success story so I’d love to share🤎

Also- if you enjoy me in any sense🤣🤣🤣 Please make sure to pop on over to The Mildly Thriving Podcast on Insta and Facebook… my dear friend and fellow special needs Mama and I are launching a new podcast on YouTube🤎

New podcast coming soon……find us on Insta and Facebook