In addition to having type 1 diabetes, James has also been diagnosed as “twice exceptional.” Doesn’t that sound like a nice thing? It is nice in some ways, but really what it means is that he both is intellectually gifted and has attention deficit hyperactivity disorder (ADHD).
Setting the gifted part aside for a moment, having ADHD and diabetes is an interesting and sometimes challenging combination. Both conditions have their drawbacks. To be honest, I go back and forth about which is actually more challenging. Since James’ diabetes is actively managed, it seems in some ways to be less disruptive to his life. We work hard to make sure that he has in-range blood sugars, and when he does, he’s like any other kid. In contrast, his brain almost always functions a little differently with ADHD, and that can be hard.
At the same time, it also makes 504 Plan meetings a little hard. The accommodations that James has for diabetes are so indisputable. They’re calculated to make sure that he stays healthy and functional. I have a harder time asking for ADHD accommodations for James because of that. For example, who can argue that James shouldn’t be allowed extra time during exams to test his blood sugar and make sure that he doesn’t have a major health incident during that time? The consequences could be disastrous! Extra time for exams is also a widely accepted accommodation for ADHD, but not getting it wouldn’t be medically dangerous — which, for me, makes it harder to ask for. (We haven’t actually needed to pursue extra time for exams for ADHD, this is just an example.) Still, we have put accommodations into place to account for the very different way that his brain functions.
The fact that James has ADHD has affected his diabetes care too.
One way is that the ADHD brain is sometimes a little slower to develop in certain aspects, and therefore developmental charts are often not accurate for kids with ADHD. This affected the speed with which James became self-sufficient at things like checking his blood sugar, operating an insulin pump, and learning to change his own infusion set. I have learned over the years to throw out any such charts for all aspects of James’ development, diabetes tasks included. Instead, I try to assess what he is truly capable of and to work hard to teach him and encourage him to master new and more difficult tasks. And once he’s mastered those, to then do it all again, encouraging him to learn new skills and become more responsible — just on his own timetable.
James is only a young teenager at this point, so I realize that college is a long way off yet, but it is always on my mind. He’s far from being “self-sufficient,” as I’m sure many kids his age are. Instead, I have to have a long-range goal. I take what I’d like to see him be able to do when he is 18 years old and in a college dorm room, and I break it apart into as many aspects and skills as I can. Then I look at what he is capable of doing right now, help him get there, and see in what ways I can help him move closer and closer to our ultimate goals.
The approach requires observation and patience. Also, I look at my job as a combination of instructor and implementer. He needs to learn new skills — that’s where the teaching comes in — but even more than that, he needs structure now, so that it will hopefully become so ingrained that it becomes a part of who he is. My role also involves lots of cheerleading and encouragement. And listening. I’m always humbled by how much I can learn from James if I take the time to really listen to his concerns and his struggles.
James is exceptional. Both clinically and truly. His intellectual capacity and his struggles with ADHD and diabetes do not define him, but they do influence the way that I mother him and teach him.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring. Jen and Kim are real moms of kids with type 1 diabetes and have been compensated for their contributions to this site.