Organize Medical Information for Your Special Needs Child

In the beginning, I had to organize medical information in a medical binder for my special needs child, and that was just to keep my sanity.

The first thing that slams into you is the weight of the diagnosis, then, following is usually a swift kick from some of the various findings at numerous appointments for eyes, ears, heart, and lungs. It is all seriously so overwhelming in the beginning that it is easy to lose track or to even be unsure of how to organize it all.

I know I felt this way. I think I was still in shock, from our postnatal diagnosis of Down Syndrome, as I sat in a cardiologist’s office reeling and trying desperately to grasp the information and diagrams that were being shown to my husband and I. I simply remember nodding, uh-huh.

But to be honest, at times it was like listening underwater or hearing the teacher in those old Charlie Brown cartoons speak…just a lot of words, lots of paperwork and a haze.

I realized pretty quickly, though, that I was amassing so much paperwork that if I didn’t find a way to keep it all together in some semblance of organization, I was going to miss something. I had to organize medical information in something I could readily use, access and keep track of.

I had already received paperwork from a cardiologist, our pediatrician and I was sitting on referrals for audiology, ophthalmology, and numerous others I had yet to learn about.

I found that it made me feel like I had some sense of control if I could just hold on to all of the swirling information and keep it in one place.

That is when I started my binder.

None of my other children required a binder (and I have 5 others) but this new little one definitely did.

I went out and purchased a 3-ring binder with a few tabs, a purchase that set me back less money than the peace of mind that it brought knowing that I could now keep it all together.

I then started to organize the different specialists’ information so that when I talked to that nice lady, I actually could recall her name. The best practice I can share with you, especially in the beginning of your journey with Down’s Syndrome, is to write everything down and write down people’s names.

I cannot tell you how helpful it has been for me when I can just go back and see the name and date I spoke with someone because if it weren’t for that binder, in the beginning, I would have been lost.

It was a pretty simple design really, I just used some tabs and kept a 3 ring hole punch handy so that after each visit with a specialist I was able to add their paperwork to the appropriate section. I also found this hugely helpful when it came to pediatrician visits as I could just bring along my 1” binder and answer any questions my pediatrician had by recalling with accuracy what was done and said at each specialist appointment.

I made sections based on all of the referrals that those of us who get a Down Syndrome diagnosis usually have. There is a page for cardiology, pulmonology, endocrinology, ophthalmology, audiology, and early intervention. I added plain notebook paper behind all of the tabs to take notes but also added in the summaries I was fast collecting from each provider. This gave me a simple way to just use a 3 ring hole punch and then add the information into the appropriate places.

The best thing though, making this binder kept me sane and I was able to access what I needed to help Cedar by keeping it all in one place.

You can have free copies of what I created by simply signing up on the email form and then getting a link to download and print all you want. The link will come in a welcome email from me and it is titled “FREEBIE” just click that link, download and print! I hope you find these printables as helpful as I do to organize medical information, in the future I may have to come up with more but in the beginning, these suffice.