Paying It Forward and Back Again
Sometimes it takes a network to make school changes stick.
Editor's Note: While this columnist is no longer writing for dLife.com and we have ceased to update the information contained herein, there is much to be read here that is still applicable to the lives of people with diabetes. If you wish to act on anything you learn here, be sure to consult your doctor first. Please enjoy the column!
May 2008 — A while back I wrote a column about paying it forward as it applies to parenting a child with diabetes. For those of you who missed it, basically it talked about offering support to another parent with a child with diabetes, especially a newly diagnosed family. I suggested what a huge difference the support of someone who has been there means to a newly diagnosed family. This concept has significant meaning to me because my belief in this concept inspired me to write a book about my experiences as a parent. I believe that after your child has had diabetes for several years, you begin to see another result of paying it forward to other families. The sharing you have done with other families comes back again to you in another way. After awhile, you begin hearing from those families (or from yet another person) the ways in which their lives were made better because of your support or suggestions. It is an amazing feeling to know you have been helpful to another family during such a difficult time. It also makes some of the difficult times you have had with your child's diabetes, school, or other issues seem less awful because something worthwhile came from those experiences. If you have learned enough from your experiences to help another family, or maybe even several other families, it doesn't feel like it was all for nothing.
You don't have to write a book in order to reach another family in a way that is helpful. I have spoken at many support groups in favor of parents developing 504 plans for their diabetic children. Over time, I have heard back from many of these parents that they have gone on to develop 504 plans for their children to resolve many issues that they had within their child's own school. If it weren't for the difficulties we had in my son's school, it is likely that I never would have heard of a 504 plan, much less know how to develop one and put it in place for my son. You also don't have to have been the guest speaker at a support group to reach other parents in this way. Talking to another parent one on one, whether it is about a 504 plan or any other form of advocacy for your child, can reach countless other families through the concept of paying it forward. If the one parent you talk to finds your suggestions helpful, imagine how many other parents she or he may pass those ideas on to as she encounters them facing the same issues.
Over time if you have had difficulties in your child's school, you may become known as a local "expert" in the area of dealing with difficult school issues such as advocating for your child to be able to test his or her blood sugar in the classroom rather than going to the nurse's office, making field trips go smoothly, or making sure your child's school is not following illegal practices regarding field trips, including telling you that your child cannot go on a field trip unless you go on the trip too. From my own experience, our local Juvenile Diabetes Research Foundation office has referred many parents to me who have had significant trouble in these areas because they know that I have had the same difficulties and managed to navigate through them over the past several years. At the time that we were fighting the battle over field trips in our own elementary school, it didn't feel that it would ever be worth it. This was especially true when my son moved on to middle school and nothing changed for the next diabetic student who was in the same elementary school. In our case, it went so far as the school nurse trying to keep a newly diagnosed family unaware of our family's existence because she didn't want them to have us as a resource. Where most school nurses would want a Mom who was a diabetes advocate serving as a role model for a new family, our school nurse wanted to keep the advocacy to an absolute minimum so she could call all the shots and stay in control of everything, including telling this new Mom exactly how she was going to run things for her son. It was as if all the work we did in educating that school was for nothing.
But then the word traveled within our community (in true pay it forward fashion) that there was a Mom who knew how to advocate for children with diabetes, how to get things changed in schools, and how to make schools take notice that you know that what they are doing is against the law. It felt great when I realized that the Mom in my community was me. And even if the schools haven't implemented those changes automatically in the school where you originally did all the work for your child, that is OK. Once the word gets out that you know how to advocate for your child, the parents will come to you for advice on how to make changes in their own schools. Your work won't only pay off in the school where your child used to be, it will reach families in neighboring schools and communities. And before you know it, the pay it forward cycle brings it back to you again and you really do get back what you give.
dLife's Viewpoints columnists are not all medical experts, but everyday people living with diabetes and sharing their personal experiences, most often at a set point in time. While their method of diabetes management may work for them, everyone is different. Please consult with your diabetes care team before acting on anything you read here to find out what will work best for you.
As I mentioned in an earlier post, one of the benefits that made it cost-effective for me to go with the real healthcare (HSA) plan rather than the phony (HRA) plan is that my company is now covering "preventative" medicines at $0 copay. The formulary for these, as stated by CVS/Caremark (my pharmacy benefits provider), covers all test strips, lancets, and control solutions. I dutifully get my doctor to write up prescriptions for all of my testing needs, submit...