The amount of information can feel almost paralyzing at first, but when handled correctly, it becomes manageable. One important aspect of making the information digestible is taking the time to organize it. Here are my top tips for organizing hearing loss information.
Though it may be tempting to throw all your books and papers in a box, being a little more organized with your child’s information is vital because you will have to refer back to information eventually. At points, you may need to access information to find a specific date. Or, in some cases, the information is necessary for grant and insurance purposes. Once your child hits school age, it will also be important to organize records to specific school-related plans. Taking a few hours to organize your child’s hearing loss information will likely save you countless hours in the future.
But how exactly should you go about doing so?
While we live in a world where much of this information is electronic, there is still a surprising amount of papers involved. Purchasing a large 3-ring binder will make your life much easier in the long run. Having tabs within that binder is also important. I highly recommend breaking your papers into the following categories (or similar ones based on your own needs): Audiology, ENT, Therapies, School, Medical, Genetics, Equipment, Resources, and Team. Having these tabs easy to access makes it much simpler to quickly find the exact information you are looking for. If you’re looking for a simple way to do this, Advanced Bionics has created similar tabs/binder inserts called My Child’s Hearing Adventure, and you can request a free copy of this be mailed right to your door.
As I mentioned before, so much of the information we are given these days is electronic. Still, it can be easy to misplace or lose completely. Keeping something in your inbox forever is unrealistic (in my opinion), so having a specific folder is a good compromise. This eliminates the clutter from your inbox, but also ensures that you have the important emails and links to refer back to. I keep emails from my son’s doctor and audiologist here, as well as any communication with equipment manufacturers and insurance.
Obviously this can be done in the traditional sense, in actual books (you will likely be given a few as resources). But after our diagnosis, I was also bombarded with links to various websites, which got overwhelming quickly. Instead of trying to remember them all, I created a folder where I could bookmark hearing resources and easily find them later.
For a while after our diagnosis, I kept everything. But with time, I came to realize I didn’t need to. For example, after-visit summaries from all of our appointments were about four pages and took up a lot of room. These exact summaries are already organized and available through our clinic’s online portal, so I didn’t deem it necessary to keep them all in my binder. This will also be the case with various handouts and instructions. In order to determine what is important and what is not, consider whether you will a) need it in the future and b) if it is available elsewhere and easy to access.
This is helpful in every aspect of the journey, obviously. But beyond talking to other parents for general support, don’t be afraid to ask them specific questions. Ask what worked the best for them in terms of organizing their own child’s information, how often they refer back to the info, what they do and don’t recommend keeping, what they wish they’d done differently, etc. They will likely have some insights and views that hadn’t crossed your mind.
Of course, when it comes down to it everyone’s needs and child’s needs are different. No binder will look exactly the same, and that is okay. As with anything, you have to find what works best for your family and run with it.