Sunday, May 08, 2022

As it Was

I think, a few years ago, I just got tired of Fragile X being the biggest thing in my life. Well actually it will always be the biggest thing. Unless there happens to be a cure someday, and even then, my boys are at a point in their lives where even if DNA repair could happen today, or a drug could be given to them that would completely alter what the Fragile X gene does to them, they have experienced enough of life as people with Fragile X that it would be hard to come back from it, completely. Not that they couldn't recover. I think they could, in many ways. But you can't have something this powerful take over the first dozen years of your life without expecting it to affect you for the rest of your years.

Anyway, a few years ago I decided that although our lives will always be ruled by Fragile X and what it does to my sons, it didn't mean I couldn't have secondary interests. A side job. I justified it by picking a secondary interest, a side job, that is tied to my own children's needs and could possibly help me help them, in the future. I got a degree in Human Behavior. I have always been interested in people who think differently than the majority. What drives people to do what they do, act the way they act? I knew that if I was going to see this through, I better pick something that totally interested me and wouldn't be something I was just trying to get through, in order to reach another goal. And it wasn't. I loved online school. Most of the reading and the online discussions were intriguing, and when I wasn't working on something for school I was thinking about it. I loved being a student, and the fact that I had something else I was working on, taking responsibility for. That I was bettering myself.

After I got done with school the need to get a job was an added stress-or, but I somehow managed to worm my way into the very position I have wanted for years, at the school I'd been working as a para at for the past four years. I was a Mental Health Practitioner for one school year, and I loved it. It felt like a dream come true. It lasted one year, and then unfortunately the state changed its rules and I could no longer work on the MHP paperwork without being licensed. Luckily I anticipated this and began working for a company that provides mental health assistance to people with a wide variety of diagnoses and difficulties. This was a huge change, but I took to it easily. I loved my clients. I loved that I had "clients."

Then one day I got a phone call that changed my trajectory. A woman I'd come into contact with through one of my clients asked me if I'd consider coming over to her company and working for her residents. She liked what she'd seen me do with one of my clients, how I'd tried to help her with respect and dignity but at the same time tried to help their staff, who had trouble dealing with her behaviors. I agreed, and my job as a person-centered advisor and behavior specialist was born. I've been there ever since. I have loved working with these residents and advocating for them through their many hardships and triumphs. 

All this time, Fragile X has continued to be the mainstay of our lives. The boys continue to struggle with toileting, feeding themselves, appropriate behavior in public, and coping with sensory difficulties. It continues to be and all day, every day, fly in the ointment of our lives. 

I've stopped updating this blog regularly, but feel free to browse and read our story.


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