Special Needs Resources for Organizing & RecordKeeping

Keeping Track of Everything For Your Child with Special Needs

Kat's Cafe | Organizing and RecordKeeping for your Special Needs Family One thing most parents of children with special needs find themselves needing before long is a way to keep track of all the different test results, new diagnoses, research, doctor’s notes, everything to do with their child’s needs. If you are like me at all, you’ve struggled over the years, flitting from one resource to another or trying to put together your own.

And that’s just the thing. When it comes to organizing and recordkeeping for your family, you collect things: A stray doctor’s report here, notes about a phone conversation there, notes from that last doctor’s visit, questions to ask at the next appointment, research to keep you from going insane.

First things first, remember that this is your child with special needs

Every family is unique, and so are the records of your child–their very life in black and white. Some families need to keep track of more complex information than others. What I’ve found is that utilizing a few readily available resources online and fine-tuning them to my family’s needs is the best way to keep track of everything.

But I’m only human, and guess what? I haven’t done my best at keeping track of everything I wanted to over the years. There are gaps, and there are holes in the histories of Bobby, Andy and Logan. I can’t possibly remember it all, and I always find myself struggling when I’m trying, once again, to fine-tune the records I have kept.

So what to do? I found this is a common concern for parents of these special kids. During the height of massive changes or multiple visits and new diagnoses, we fastidiously keep track of everything, and then slowly pull away from doing it religiously when we can’t remember how frantic we were to piece together our child’s history.

Next, it’s back to list-building 101 for your special needs family

Why? I said it earlier, each family is unique. The records we need to keep may vary widely from the ones you need to keep. Heck, you might even find that you need a way to keep track of things others haven’t even considered before.

I’m listing some resources at the end of this post, and you can check them out and use them to help build your own list. But do put at least a rough list before you start trying to print or download the resources. You will find it easy to become overwhelmed if you don’t.

So, your list? Here’s the first rough sketch of my list as I wanted to revise my own recordkeeping for the boys earlier this year–see if some of these things are similar to what you might want to track as well:

  1. Medical Records (shot records, actual medical files from multiple specialists the boys have all seen over the years)
  2. The above, but specifically test results to log in one continuous file for easier reference
  3. Birth History, Early developmental notes (my own)
  4. Developmental/therapy notes in summary from several years back
  5. IEPs and other school-related notes, like behavior charts, to show development over time
  6. Seizure diary (will be another post down the road with add’l resources)
  7. Social Security information, receipts
  8. Notes from Doctor’s visits and phone calls
  9. Research

Looking at this daunting list, it’s easy to see how overwhelming it can become to start compiling this information or change the way you’ve been doing it before.

But sometimes, we need to take a hard look at the changes we need to make.

For instance, I have two children with sometimes very active seizure disorders (Logan & Bobby), but my other little guy (Andy) has a history of seizures as well. He’s been seizure free for almost five years-but that information still needs summarized any time someone needs to understand Andy’s history and development, especially since seizures can affect development directly and indirectly.

In looking back through our seizure records I see chunks of time when I wasn’t tracking Bobby and Logan’s seizures as carefully, either because their meds were controlling the severity of the symptoms or because I’m human and I just couldn’t keep track of everything. I’ll be posting about resources I’ve found in another post, but think about this realistically.

  • We need long-term history of their seizures and medications they have tried
  • We need short-term logs of more recent seizures and possible triggers, changes, etc.
  • We need daily logs to keep track of more finite details to help uncover patterns in seizures.

If I hadn’t thought through our needs, I would be upset and frustrated trying to cram all the information I need to keep track of in most small forms readily available, especially if I was trying to do it for each detail of their seizure histories.

The same will be true as you look through your own needs of tracking information and resources. So give yourself time to follow this first section of readying your record-keeping and organizational needs.

So what to do now?

If you haven’t done this before, make your list, then look at the different resources, usually called Care Notebooks or something similar, and start thinking about how close they are to your needs and what else you need.

If you are a pro at this, start commenting and sharing with the rest of us – because this learning curve hits parents hard, as you well know. Take the time to examine the methods you have been using to see if they are appropriate, or if you, too, have sections missing.

Links to other Special Needs Resources that might be useful for you: 

Part of an ongoing series
Keeping track of your Child with Special Needs
This is part one. It involves taking a hard look at what you are already doing (and taking a deep breath if this is a first for you … we’ve all been there!) and seeing what is and isn’t working. What bits of information do you consistently need to have available but can never find? What are the most pressing needs of your child right now, keeping track of therapy notes or maybe really taking time to sift through educational records? In the next section of this series, we will look at other resources, and how to help you start filling in the gaps you have found. Start thinking of anything you need help with. Let’s work together to create a better system, personalized for each of us individually. 
Katrina Moody

Katrina Moody

Graphic Designer, Wordpress Addict, Blogger at Kat's Media & More
I'm a special needs parent before just about everything else in life, but also a passionate advocate for my three boys and husband, who all have a bit of awesomeness about them. Awesomeness = Axenfeld-Rieger Syndrome, Autism, Epilepsy, Dyslexia, Cerebral Palsy, and more. It all adds up to some awesome kids and an amazing family.
Katrina Moody
Katrina Moody
  • http://www.adjuvancy.com/wordpress Roy A. Ackerman, PhD, EA

    This is a great list, Kat!
    I think you should strongly consider (and recommend) a free EHR for special needs parents (or older patients) iBioMed. I reviewed it earlier this year- and it has special features that parents (and patients) with special needs will appreciate.
    http://www.adjuvancy.com/wordpress/http:/www.adjuvancy.com/wordpress/finally-a-personal-healthcare-record-phr-worth-using/

    • http://katscafe.org Katrina

      Thanks so much for the share Roy! I’ll definitely check it out! I was hoping for some interactive online options from folks who have reviewed/used them! Thanks so much!

  • http://www.imagodeiphotography.com Xiomara

    Great article Kat! I have found that my record keeping is so helpful in keeping each specialist up to date with changes and new diagnosis as well as simply for my sanity! Honestly, I started mine out of the concern that something could happen to me and/or my husband and so we needed to leave tools behind to make sure our daughter would get the care she needed regardless of whether we are around or not!

    The only item I would add to a record like the one we are speaking of is a family history section. When I talk with the older generation about the health issues dating back through the years in our families, I find it has helped us piece our daughter’s diagnosis together and helped us make sense of what genetically is going on. Since our daughter’s condition is genetic this has proven to be so very helpful. ~Xiomara

    • http://katscafe.org Katrina

      Excellent point, Xiomara! When you are dealing with a genetic disorder having more complete family history is very important (though a good idea, also, in all cases!)

  • http://theblogthatfaithbuilt.com Dena Hamilton

    Excellent info, Kat. I agree with Xiomara, family history is a must…even if you are not dealing with a genetic condition, you never know when the info might help your doc see the bigger picture. There are so many more resources available now. When I was going through this, I would provide all new docs with 2 huge envelopes full of medical records. Of course, more resources means more frustration trying to figure out what works. Take a deep breath and give yourself a break. You are going to forget something, just try to concentrate on what you decide is the most important. It would be hard for the parent of a healthy child to track everything. You are having to do it while in the middle of one crisis after another. And find a buddy to help keep you sane. God bless.

    • http://katscafe.org Katrina

      You are so correct Dena, sometimes you don’t have to be dealing with special needs or new diagnoses at all, but just need that family history both for yourself and in case of emergency. Thanks for the words of encouragement. I think parents tend to be harder on themselves, expect more from themselves, than anyone else. We expect ourselves to be perfect, and we’re not, we expect ourselves to know everything; and we can’t; we expect ourselves to be all things to all people, and we forget about ourselves. *hugs* My friend and thanks for visiting!

  • http://RaisingCEOkids.com Sarah

    Hi Katrina -

    We have special needs issues in our house too and I wish I would have discovered, AboutOne sooner! You can see the review I did on them here: http://raisingceokids.com/2010/12/review-of-about-one-the-answer-for-true-organization/

    They allow you to not only have all of your records SAFE online, but you can access them from your mobile device as well. For $30 a year and a 17 FREE trial, it’s definitely something to check out! http://www.aboutone.com

    I also have all records I need in binders for easy grab and go access!

    • http://katscafe.org Katrina

      Sarah – thanks so much for sharing! I’ll definitely list the resource (and a link to your review) in my next post. I, too, have binders that I can access easily for each child, and a more general family one. I’ll have to check out the service myself as well … anything that makes the record-keeping easier is something I want to try. Thanks again!

  • Beth Moeller

    Hi Kat,
    I read your post and wanted to make you aware of great service I discovered to track medical records online, MotherKnows. I learned of this service through a friend who also struggled with a special needs child and found record keeping records to be one task he could delegate so he could focus more time on getting his daughter the help she needed.

    The service is described in a brief video (http://vimeo.com/28125298)MotherKnows (www.motherknows.com). It’s a secure website and mobile app that provides parents access to their child’s health records anywhere, anytime it is needed. The product allows a parent to simply sign an electronic release and MotherKnows collects their child’s health records from any provider and displays them to a site custom-tailored to the needs of parents. MotherKnows features easy to read graphic displays of immunizations, growth charts, medications and milestones. Parents can also safely share this information easily with any medical provider, school, daycare or caregiver. As you know, having full access to their child’s health records wherever and whenever,we are empowered to advocate for their best medical care!

    Best of luck to you!
    Beth

    • http://katscafe.org Katrina

      That sounds really interesting Beth, thanks so much for sharing with us. I’m going to have to check them out now. :-) I really appreciate you stopping by!

  • Ami F.

    I know this a bit late, I have all my information in a regular heavy duty Binder. When my son was born I went full board documenting everything, then when my daughter was diagnosed later I was lazy until I realized she had so much stuff, she would need her own binder as well.

    The problem I find is there is SO much information the most important (diagnosis, treatments, current drs. information) get lost in the mess. Should there be 1 binder for Medical and another for Therapys? A seperate one for school? My sons binder is HUGE, all of it important, but not on a daily basis. Any ideas for this?

  • http://1000giftideas.com/ Naxysch

    Thank you so much Katrina that’s really a wonderful list you provided, I have seen many people keeping log of medical reports and notes but recording the seizures and the stimuli for them becomes really difficult! I think you should really start some kind of counselling or something for such parents.

    • http://katscafe.org Katrina Moody

      I think it’s a good idea to have more information than what is needed rather than not enough, *grin* … As for counseling? Nah, I’m still learning as we go along too! But thanks so much! I really appreciate your comments!