As Adam’s advocate I have found that the one secret to getting the resources he needs depends on the vocabulary or terminology I use.
So here’s a tip for parents.
Find someone or go online to help you learn the terminology they are likely to use. Before going to any important appointment or doctor consult have a list of terminology prepared or memorized. If you hear a word used repeatedly write it down, look it up. So that when you talk to this person or team again you will seem more informed and be taken more seriously therefore increasing the chances of getting what you want from the meeting or encounter.
For Example, Adam has epilepsy, he has been hospitalized for two weeks.
During this stay I learned that:
twitch, spasm and jerking are each used differently.
Jerking is the most visible, forceful movement. This can be seen in Grand Mal Seizures.
Spasm is a less aggressive movement and is a little slower (still repeatedly). Twitch is quick tiny movements.
I also learned that the term “rhythmic” is code word for sure sign of seizure (at least for this neurologist). So to explain a movement that you believe may be a seizure describe the area, the style of movement and the duration.
You could say for example, I saw _____’s left arm start twitching at 9:30. It turned into a (heres the helpful terminology) more rhythmic pattern and eventually a jerking movement. This went on for ___mins.
Side note: here is more seizure vocabulary
Clinical Seizures: May be used to describe VISIBLE seizures/ symptoms.
Sub-clinical: seizures that occur in the brain and DO NOT show visible body movement.
Status: status epilepticus (SE) is a life-threatening condition in which the brain is in a state of persistent seizure. Definitions vary, but traditionally it is defined as one continuous unremitting seizure lasting longer than 5 minutes, or recurrent seizures without regaining consciousness between seizures for greater than 5 minutes. It is always considered a medical emergency.
Postitcal State: the resting stage that follows the seizure. The person is extremely exhausted and requires rest.
It’s sad that hospitals and doctors function this way, I worry for parents who may not have the ability to advocate for their children in such ways. If you have any tips or suggestions please feel free to comment.