I’ve spent the last 12 years fervently trying to navigate my daughter’s complex diagnoses, development, and treatments. I’ve been in countless specialist offices and know fancy terms and definitions for conditions most parents will never need to bother with. I’ve heard the frustrated stories of other parents in similar situations as I wait patiently in therapy lobbies. I’ve attended lengthy IEP meetings to advocate, persuade, and fight for the accessibility of our girl’s education. It has been isolating, frustrating, and heartbreaking. My husband and I have felt very alone in the journey. It HAS to change.

A few months ago, I walked into an Exceptional Child Resource Fair hosted by our local school district, only to find the room FILLED with support organizations that I never knew existed. I’ve been a mom of a girl with complex challenges for 12 years and had never even heard of these supports and opportunities! I walked from table to table behind an 84-year-old grandma who is currently raising her exceptional grandson – ALONE. There are no next steps available to her. No transitional programs – there’s a 12-year wait. She has limited years left – and she’s TERRIFIED. At every table, she would lean in and ask, “Are there any support groups where I can just be sad with other people like me?” Only to be met with no solutions. After the third table, I looked her in the eyes and said, ” I’LL start a support group – even if it’s just you and me on my back porch! I’ll start a group.” It HAS to change.

But recently, I’ve found myself in a particularly challenging place – it’s as if none of my past effort and experience matters at all. I’ve hit road bumps, come to dead ends, and even had a few fender benders – having spent hours, days, and weeks trying to run down point people, organizations, and processes – filling out the right paperwork, supplying the right documentation, standing in the right line, spending chunks of days on the phone trying to speak with the right person – only to find myself right back at square one. Time after time after time. It HAS to change.

My husband and I are making life-altering decisions about schooling for our girl – having spent so much time and effort advocating for things that are clearly never going to happen in general education and not being able to afford private specialized schools – having spent our retirement and savings on treatment – we’re pivoting to use that same effort to help our girl connect and engage with what she’s learning by homeschooling. Teaching to her strengths. Supporting her weaknesses. To test things out, I designed a summer camp for her – and the anxiety and stress she wrestles with on a daily are drastically different. She pops out of bed EXCITED to get going on her to-do list. It’s night and day different. Who knew? It’s terrifying, and we don’t know how to make our jobs work around it all, but we know one thing for sure: It HAS to change.