Having a child being diagnosed with diabetes elicits in parents many emotions and thoughts: shock, fear, anger, denial, loss of control, being over whelmed... the list goes on and on. And everyone, parents and kids alike, reacts differently.
When diagnosis comes when a child is young, there is little doubt that the parent or guardian will step in as the exclusive or primary caregiver. Even parents of ‘tweens and younger adolescent take comfort in the knowledge that they as parents will be close by to oversee and influence the child's care - although these age groups of kids often are ready and willing to take on managing most or all of their diabetes care regime.
But what happens when your child is diagnosed as an older adolescent or young adult (essentially a big kid) and no longer lives with you - such as a child who is away at college? What do you do then? What if your child lives a several hour drive or even several hour flight away? I begun to wonder this when, last week, our local papers featured articles about Georgetown Hoya basketball star Austin Freeman who just was diagnosed with diabetes at the height of the college basketball season. These articles made me wonder what parents would do, whether living near or far, if their college-aged child was diagnosed with diabetes? Freeman has the added burden of having his diagnosis being closely followed by the media and Hoya fans alike, which is a tall order to live up to.
It's almost impossible for anyone not a part of the "D" circle, to grasp that Type 1 not only is a long term, chronic disease that does not goes away, but it's also a day-to-day condition (some will argue hour-by-hour or even minute-minute) whose demands and threats never cease.
At initial diagnosis, most people are pretty sick, often ending up in the ICU, or at least in the hospital for a several day stay. Parents then are at their kids' side, joining them on the long road to educating themselves on the many facets of the disease as well as learning and testing the many tasks needed or the daily management, including the constant and consistent BG testing (even in the middle of the night), administering the right dose of the right kind of insulin at the right time, counting carbs, and understanding the impact that activity, stress, and weather have on blood glucose levels in the blood.
Once the first few days have passed and the child is out of the hospital back home in either apartment or dorm, parents wrangle with many questions. As can be imagined, answers to these questions, unfortunately, are not formulaic and vary from person to person, situation to situation.
First off, the question of "What next?" puts itself front and center. Do you bring the child home, possibly pulling her from school? The answer to this depends on the kid's ability and, even more importantly, willingness, to commit to the unending management demands of diabetes, particularly under peer pressure. You must consider how reliable and extensive a child's support network is while she is away from you, like does your child have a room mate that she trusts and who will be willing to be on the lookout for dangerous situations, like BG lows. Furthermore, is this person comfortable with glucagons and what to do if it is needed.
Another question is whether you as a parent put your life on temporary hold to move in with the child for the initial few weeks to be close by? This depends on your other commitments - to other children, your spouse or even parents, or to your job. Too, can you afford to take the time away? From and employment perspective, one area to research is the Family Medical Leave Act (FMLA ).
Maybe you're considering allowing the child to give it a try on his own and you will monitor remotely? Fortunately, with people being so well wired from texting to email to videoconferencing, you can stay in touch better and monitor BG numbers and send reminders to test or snack if you think it may help. But it can be tough if you're not there in person for support.
Managing diabetes is as much an art as it is a science and it takes a lifetime to master. Yet no one can deny that the first days, weeks and months are the toughest. When thrust in these situations, parents and older children who have at first decided on one course of action may then adjust as management issues either resolve or arise.
Hands-on management aside, practicality next will step up to be considered. First, if you have insurance coverage, you will need to see if your coverage extends to doctors that are out-of-state. If your child is in college, you may want to compare your family coverage to those offered by the college. Too, you will need to determine where your child wants to establish a permanent relationship with an endocrinologist and diabetes management team (CDEs) - whether that be at home or at school.
One thing is for sure: diabetes demands respect. Err on the side of caution to protect your child's health. It's okay if the child - no matter how big - needs some extra help managing, everyone does from time to time.
Published On: March 12, 2010