The WholeStory Foundation began as a simple solution to a problem I had that was driving me crazy. I have a son and daughter on the autism spectrum, and I have rheumatoid arthritis. Keeping track of the appointments, doctor’s visits, special diets, school staff, IEP, home therapies, equipment and all the accompanying pieces of paper was bringing me to my knees. We had excellent medical care but I was desperate for help coordinating all their care (and mine!) Everything I did to stay organized and prepared for appointments seemed so cumbersome and inefficient. I longed for a tool to use that would be universal enough to encompass the variety of items I had to manage. Most importantly, my kids were growing up fast, and I had no idea how to start teaching them to manage everything when I was having so much trouble?
I was doing some graduate work at the time and was introduced to the use of ‘mind maps’ by a sociology student. From this concept I created a visual ‘map’ of all our providers, and then expanded the idea to include a visual to-do list that helped me organize everything. Combining my academic and professional skills with my life experiences I began to play with the ‘map’ and to-do list. Before I knew it, I had created a full blown web-based database called Tim’s Trees, along with a system of management and advocacy tools.
Let me tell you a little bit about myself. In addition to being the family healthcare manager, I’m also a consultant in the field of developmental disability/advocacy, a member of the faculty of the ArizonaLEND program, and the Founder and CEO of The WholeStory Foundation, Inc. Probably just like many other busy moms I spend a lot of my time trying to balance my career with making sure my kids get the attention they deserve. (For more information on my background, click here.)
The WholeStory Foundation website will be providing articles and tools to help us all keep that work-life balance. Topics will range from sharing personal experiences, to translating academic information into practical advice.
I hope that you will use our tools to help manage your day, guide you in preparation for your appointments (IEP worksheet), and IEP meetings (IEP Meeting Agenda) and help build confidence in your skills as an effective advocate. I know when I use them I feel organized and less stressed and as a result have more time to actually play with my family!
Together, we can shift the focus from the ‘must n’ts’ and the ‘never haves’ to what can BE!
Founder and CEO, WholeStory Foundation, Inc.