07/21/2026
Hey besties......the last 2 days have been quite a lot. Let's start with the non-scary part.....I am officially diagnosed with level 3 autism! Why is that the non-scary part? Because autism is at the forefront of research and awareness these days. They have loads of resources for autism and to be honest we already knew what the result would be. Here's where things went sideways:
My new doctor at Kennedy Kreiger Institute is very concerned that there is something BIGGER happening. She said even with my down syndrome( T21) and my level 3 autism and my cancer journey something's not right. She has explained to Mom that I need to see a very special doctor another neuropsychologist ( who has an EXTREMELY LONG wait list) but she told Mom to dig in and find one while my name is on the list for that doctor because we need answers quickly. She told Mom to call my case manager and see if anyone else near us would take me on as a patient to get looked at. She did tell Mom that if she wanted to go a doctor faster there are ones that take self pay but the visit would probably be about $5,000 dollars. She also told Mom that she is ordering at least 12 other tests and after those results come back she will be ordering an MRI of my lower spine. I have to be completely fasted and very calm and stress free when we go get the 12 other tests because they are very particular and Mom has to call the lab and arrange for them to happen since some of them must be put on ice and shipped out as soon as collected. The doctor told Mom she needs to meet with a special social worker and she needs to fill out a bunch of applications to get me on waiver lists and I have to increase my therapies. Mom has to find ABA therapy near us because she reccomended 40 hrs of just that a week. I also need additional speech, occupational, physical therapy and feeding therapies on top of the ones I receive in school. She said I also need swimming lessons( I shook my head at the idea of water splashing my face) and a gps tracker in case I escape. Mom is scared of the unknown.....we don't know which rare genetic mitochondrial or metabolic disorder will show up and some of them have unpleasant outcomes. I told Mom we will face this one step at a time and I know with her and sissy as my advocates we will get to the right places and get me some help. I'm sorry for the long post but I wanted to let you all know we once again are "fighting the unknown"- Love y'all - Thoren
