Keeping Track of Everything For Your Child with Special Needs
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:
- Medical Records (shot records, actual medical files from multiple specialists the boys have all seen over the years)
- The above, but specifically test results to log in one continuous file for easier reference
- Birth History, Early developmental notes (my own)
- Developmental/therapy notes in summary from several years back
- IEPs and other school-related notes, like behavior charts, to show development over time
- Seizure diary (will be another post down the road with add’l resources)
- Social Security information, receipts
- Notes from Doctor’s visits and phone calls
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:
- Care Organizer | The Center for Children with Special Needs.
- Make a Care Notebook - Children With Special Needs - About.com
- Building Your Care Notebook | American Academy of Pediatrics
|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.|