A Misdiagnosis Is Still A Diagnosis

Having been diagnosed well into adulthood, it can be easy for people to assume that I went almost 26 years with no answers regarding my health and disability.

While it's true that the Joubert syndrome went unnoticed for that long, even when it was noted on an MRI, I did still have an answer.

For 26 years, I had cerebral palsy or some form of it. It's what doctors noted on my files, what teachers and school staff heard in IEP meetings, and what I used to get various services and participate in disability-related activities. In hindsight, it wasn't an accurate diagnosis, but it was one that fit and made sense at the time.

Yes, there were things that didn't mesh with a traditional cerebral palsy diagnosis, but most of those things were either fixed (extra finger, crossed eyes), or just dealt with as best as possible (frustration, leaning). The important things is everything was handled, regardless of what I was diagnosed with at the time.

So, while finally getting the Joubert diagnosis was great and has made a huge difference, going 26 years without it wasn't all that bad, either.

Cheers!