Whenever a new school year begins, I become nervous as I will need to "explain" my daughter to many people (her main teachers, specialty and extra curricular activities instructors, supporting staff (like the cafeteria staff) and any caregivers that might be in contact with her.
People can get intimidated and overwhelmed and I can’t blame them. So, I compile a PowerPoint document (could be done on Word) that I entitle “CASTALIA 101 for Caregivers.” Caregivers can read it before I talk to them and have their own copy to go back to if needed. Each year, I add and delete some pages as needed.
I start with a simple explanation and picture of what EA/TEF is. To make it more user friendly and easier to organize, I divide the slides into categories and then subcategories. For each issue, a new slide presents a paragraph explaning the issue, how we treat it (medicine and dosage included,) how it presents itself and how the caregiver needs to respond.
For instance it could be structured as such (with every subtopic being a slide) :
Feeding: timing and drinking
Feeding Tube care
Sleep Apnea issues
Repeat Ear Infections
Stressing Hand washing
Hearing loss, needs to sit upfront
Low muscle tone, shortness of breathe, needs to be monitored in PE
I hope this will be a useful idea, contact me if you need further help.