Validated

LAST WEEK--- I participated on a miniature Zoom call with two of my favorite people and little did I know one of them would ask me about my disability. It was such an eye opening moment for me to understand that sharing my information with people is only gonna help them know who I am. I didn't know how else to approach this question without a need to respond and kind of vaguely explain what my so called life is. 

For those of you who have never known this about me, I have a genetic disorder called Fragile X Syndrome and it is basically where those X chromosomes do not work like they are supposed to... which if you ask me is kinda annoying-- but you get the idea?!! (There is more to tell about this but here is just a preview--but my mom also has it and my twin sister deals with seizures on a regular basis and I am kind of like her roommate if that makes any sense?? She and I can either one day be like best friends or each other's worst enemy... which for most siblings it is a fairly common thing that we deal with from time to time.) It is also known to be a lot worse in males than females--who like myself do not struggle with reading and writing or let alone much of anything that relates back to academics. It is also such a hardship for me in trying to learn abstract things and not knowing how to process the idea of what is being said-- but I can honestly admit that it does turn into something I wish never existed. 

With being an extrovert in this world, I have certainly gotten my fair share of not being appropriate in social environments. I may never understand in a million years why it is that I am not able to control this kind of behavior and learn that there is extra room for improvement. As I have struggled with on and off experiences with trying to keep my mouth quiet or feel an urge to get my opinion across in an brutally honest way. 

One of the hardest things about my disorder is that I may not know if there will ever be a legitimate or permanent cure for something like this. I am not necessarily gonna hope for that to come up with in the next few years or whatever-- but I do know that it will never define me!!! Without going into much more detail about this on a personal level-- I am grateful for the many things that I can do and not have others tell me what it is I am more capable of being able to take on. I will continue making endless mistakes in situations that never should happen and not having a clear understanding of how someone else perceives me to not take what they tell me close to heart. They might not have known in that moment of them bringing tears to my eyes and leaving it out there for me to take care of and not knowing where to turn afterwards. I've continued to have my NINJA friends reach out and remind me that if I ever feel a need to reach out to them as well as have someone to talk to--- I can simply just count on them to give me heartfelt advice whenever it is necessary. I am grateful for their support to me throughout this unprecedented year more than anything in the world and without them to catch up with on a occasional basis-- My so called life would not be what it is right now. I've even gotten invited to participate on another IL Centers online Zoom activities and what an amazing experience it has been for me to feel included despite the fact-- I am not one of their youth consumers. It has given me a second reason to not only participate on more virtual hangouts with friends, but to learn a lot of new things from them every single week!!!

(End of Part One)