One helpful thing that I learned early on was that I would need to figure out a system to get myself, and Nick's many records, organized and keep them organized for many years to come. There were a few key tools that I used then, and continue to this day to use. First was a calendar to track the many appointments with doctors, speech therapists, clinic visits, etc. Second was a notebook or journal where I kept current and important information and recorded my own observations of the events or tasks to be done. Third was a set of files that were readily accessible for use at any time. At the end of each year, I would review each of these and transfer to an upcoming calendar or file folder information that I would need in the future or just needed to have accessible as a reference or an historical document. I still do that, even though Nick is now an adult. The categories are just a bit different and include items such as pay stubs, tax filing information, SSI and Medicaid, etc.

The other thing that I did was to assess what categories of information might be useful to share among professionals. So, for example, the results of a most recent audiology report were something that his speech therapist, pediatrician and ear/nose and throat doctor might all find useful. I tried, therefore, whenever possible, to get reports in duplicate or triplicate from any given provider to share with others. If the provider was unable to provide multiple copies, I would have them made elsewhere. After a few years, I figured out that it was easier and less expensive over the long haul to invest in a copier/fax machine than it was to purchase those services on a routine basis.

Another technique that I would learn as we grew in our journey, and I became more informed and aware of the services that my son was entitled to, was to always go to appointments or meetings prepared to participate as an equal partner in the decision-making. A strategy to "level the playing field" between myself as a young mother and the many professionals we interacted with was to do as much homework as possible and to have questions written down (in my notebook, of course) and ready to review with the providers, whether they were doctors, teachers, or therapists.

One of the important and difficult lessons that I had to learn was the fine art of give and take. For example, when Nick was young and constantly ill, we saw many, many, many doctors. We attended lots of clinics at the Children's Hospital of Michigan and saw (or taught) many pediatric residents. After a number of years I finally made an agreement with the multiple physician specialists who provided care to my son and, thus, our family. The agreement was that Nick would not be seen by residents on every visit, wherein they always wanted to go back and have me repeat everything from my prenatal history forward. Rather, I would negotiate "teachable moments" with the residents. I expected that they would have reviewed Nick's history, which was available in his record, before coming into the exam room. We would then talk about his various conditions, what diagnostics or treatments he was undergoing and what we were there to discuss with the specialist on this particular visit. This provided the residents an opportunity to learn, didn't exhaust me with repeating the same old story, and cut down on the length of time we had to spend in clinics. Furthermore, at times I just let the specialist physician know that I did not wish to interact with the residents at the upcoming visit.

I also learned that I needed to think not only about Nick's safety as a child but also about things that might occur well into the future for which we would need to be prepared. So, for a safety example, Nick was fingerprinted during a child safety program when he was in elementary school. That set of prints sits in the "Nick's Important Documents" file even today. As an example of looking ahead, I realized about the time that Nick turned 17 that at age 18 he would have to be registered with the Selective Service System. So I needed to learn about the requirements and be prepared to help him meet his civic responsibility and learn about it during the process. Now that was 16 years ago and thus it required going to the local post office, getting a form, completing the form, getting it in the mail and waiting for his selective service card to arrive. Of course it had to also be filed with "Nick's Important Documents," but he also proudly keeps his wallet-sized card with him at all times. Even though he will never be called up to serve he is known to the system, we have done what is required by law and Nick and I both learned things in the process. Today, all one needs to do is to get access to a computer and go to the Selective Service Web site, and complete the process online.

The number of things that can be done now online which could not be done previously is amazing, which brings me to another point regarding the organization of information. To the extent possible, keep your records in electronic files and back them up on a floppy or CD. Then store them in a secure place, such as a safe, locked metal file cabinet or safety deposit box. In addition, when doing estate planning for your child, it is useful to provide electronically stored information as a part of the plan.