Hypotonia

My Hypotonia (low muscle tone) is prominent in between my dystonia episodes. This means I cannot sit or stand without support. I also cannot extend or raise my arms the way I want to. Nor do I have the dexterity to use my hands and fingers purposefully. I underwent a spinal fusion surgery in 2024. Because of the spinal rod in my spine, I cannot band my back.

How To Help

Have your hand behind my neck when picking me up.

Place the objects within reach.

Help me to pick up or hold objects.

Feed me bite-size food.

I have trouble biting off foods like pizza or sandwiches using my front teeth and need you to cut them up for me.

Transfer me to my hygiene chair.

My parents put me on my hygiene chair and supervised me from a distance. While I like my privacy, I still need supervision because my dystonia causes me to fall out of my chair from time to time. My parents try not to let me sit in my hygiene chair for longer than 5-10 minutes.