Therapies, medications, specialists and tests. These alone require a careful coordination and planning. Add 4 other children with their hobbies and activities, our calendar is full every week. Last year, I wanted to spend some intentional time in getting organized and it was time well spent. Now I don’t waste time looking for the same paperwork or phone number. I wanted to share tips I learned along the way.
Scanner is your best friend
I scan every document from IEPs to test results to doctor visit notes. Many of our health team members communicate by email so it is easy to send a copy of something to them. I also don’t have any papers laying around when not needed. Prescriptions are the only things I keep anymore or anything that has an original signature. It’s easy to scan business cards of all the people that help us and keep them in a file.
Smart Phone Apps
Have a need and there is more than likely an app for that. After misplacing my paper calendar too many times, I finally found a phone app that works great for me: Cozi. I color code each family member’s appointments and I could coordinate things with my husband (if he got the app, but that’s another story). It’s also really easy to enter appointments at the doctor’s office as we are checking out. Should something happen to my phone, Cozi has a website that saves all my appointments on. The free version is great, but if you pay you can receive notifications, which is nice. Also, ask around for apps that might help your specific special needs. I know some use a seizure app to easily keep track of seizure activity to share with a medical professional.
This will vary according to your needs, but I have the following information in easily printable Word documents:
Names of all our Specialist/Therapists/Hospitals with phone numbers, what conditions they treat and which medications they prescribe
Names of all medications with dosages and which doctors prescribe them
List of diagnoses with dates
A quick introduction about your child (especially if non-verbal) for first day of school, for church or any day program for reference
Communication device instructions and how Eve uses it. This one is new to us and constantly changing.
Good Ole Pen and Paper
I have a notebook near the phone and one in my purse. I have a running list of questions to our doctors so I won’t forget them at the next visit. I write down names and phone numbers during conversations (insurance, medical equipment companies, pharmacy etc) or I write medical terminology to look up later when at an appointment. It’s best to keep records of conversations when working on a difficult to get piece of equipment (like our year long quest for a medical safety bed) because no one will care as much as you do.
I have a few spreadsheets where I keep websites, grant organizations, school IEP resources handy. My bookmarks are so cluttered and this way I can categorize different topics easily. You may find another way that works for you, but there is always that time that I can’t find a resource and end up searching for hours.
Our local pharmacist is like a part of our family (not sure how he feels about that). We juggle a lot of medications and our doses are constantly changing. Get to know your pharmacist and they may be able to give you valuable information or help you organize your prescriptions. Some are more proactive in getting re-fills or you can ask about automatic re-fill services. There is nothing worse than trying to reach a doctor’s office on a Friday afternoon because you need more medicine (a for instance, that would never happen to us…)
Bags to help organize
My final tip is for those days when you are running from school to a specialist appointment to therapy and pharmacy. Or something like that. I have separate bags for those days making my day run smoother. We need a backpack for school, but don’t necessarily want to drag all that stuff later. I have a smaller bag with a change of clothes, bib, snacks and any documents we might need for the brief doctor’s office visit. Another bag might have the tools we need for therapy. And finally a folder with the necessary things for pharmacy. Eve comes with a lot of stuff so dividing it helps me avoid packing a huge bag.
I’d love to learn your organization tips and things you have learned along the way.