Parents of kids with Type 1 remember being there: it's shortly after your child - and you as a parent -- just have been backhanded by the diabetes diagnosis, and you're trying to get all of your proverbial ducks in a row to return life to a "new normal." There's determining insulin-to-carb ratios. Adjusting mealtimes to eliminate carb-laden foods. Filling out endless forms so the child can head back to school. Securing childcare before or after school - or instead of school because the child's not old enough for school.
There in lies a question that can stick for many parents: "How can I find someone who can look after my child and his diabetes management needs while I'm at work?" This then rolls to an even bigger question like the elephant in the room: Can I continue to work?
For some of us, there's never a question: you need to go to work in order to get the insurance coverage or money - or both - to pay for the medical care, devices and drugs to treat your child's condition.
Yet for others who may feel that they have more of an economic choice, it's a question with multiple answers which typically change as the situation changes. No matter what the decision, it can be fraught with guilt, particularly when your child's health and safety are at risk.
An article was recently passed to me that cited that more than half of the parents in Britain are leaving their jobs to care for a child after a Type 1 diagnosis. The Brits feel the need to do this because teachers and other staff at the schools are too poorly trained to administer the insulin needed. That's a pretty big - and scary -- statistic particularly if you need to work for whatever reason.
Here in the States, the ADA (Americans With Disabilities Act) and section 504 of the Rehabilitation Act of 1973 should help to ensure that your child is on an even playing field and getting the right care. With the ADA, it is illegal for both daycares and schools to discriminate against a child with a disability, which diabetes is considered. Creating a diabetes management plan (with the help of your endo and CDE team) and reviewing and applying it with your school or care provider will begin the process of ensuring your child's safety. The next step is to have a 504 Plan put in place.
Ultimately, though, it will be up to you to check in on your child and advocate, advocate, advocate if you don't feel that he is getting the care he needs when he needs it. There is nothing wrong with being a squeaky wheel, which can take time and mean an additional balancing act with work. You also can consider using a program like MyCareConnect, which is an online monitoring tool that keeps parents in touch with caregivers/school throughout the day for BG checks, insulin administration, etc.
Another alternative may be to consider asking for a modified work schedule, possibly using more telecommuting or modifying your hours so that one parent is home with the child (if this is an option). Although you will still need a caregiver, you can at least be home and available to help a caregiver get acclimated to the routine.
If you need extra time to set up appropriate care that is trained in a way that you are comfortable, consider asking for extra leave via FMLA (Family Medical Leave Act), which will allow someone to take time off for a child's medical condition. This time may be needed not only as you begin your child's diabetes management. The journey rarely offers calm waters, and issues can come up when you least expect, at times requiring time.
Turn also to resources that can help you interface with schools and caregivers/daycare:
- Your endocrinologist or CDE team may have suggestions.
- Local support groups
- Website resources with forums: like the ADA forum for parents and the school and daycare discussion thread on the Children With Diabetes site.
In closing, when it comes to parenting, there can be as many answers as there are people. Your decision may change as your child's needs changes, or his school changes. First and foremost, you need to do what's right to keep you child safe.
Published On: May 26, 2010