We've got 8 children, 6 with Type one I diabetes. Our first diagnoses came 15 years ago, and I'll give you my reactions to that first diagnosis. Our son (7 at the time had been sick for a while, just feeling really punk, and then started wetting the bed. One day was so hungry he stole some candy from a store, and that was what made things begin to click in my mind. I took a good look at him, realized he'd lost weight, and took him in to the doctor. The diagnosis was immediate, and he went right into the hospital.
We were stunned, and wondered how we'd ever feel normal again. We didn't feel up to all the challenges of dealing with this chronic disease, and certainly overwhelmed by the worries of Chris' long-term health, the trauma of testing and shots, maintaining good blood sugars, and the expense of caring for the disease. We felt like we couldn't manage all the different parts of the situation. We also began wondering why, and thought right away of my husband's brother with Type I, and my parents reminded me I had several cousins with it.
So we felt some guilt, as well, thinking we should have been more aware and possibly undergone genetic testing. But the nature of the disease is such that you don't get lots of time for reflection early on, you just have to jump in and provide the necessary care, and establish the system for testing and shots at home and in the classroom.
You asked what is the hardest thing to deal with; well, there are several things. One, guilt for passing on a horrible gene, two, dealing with people who don't know the difference between Type I and Type II and feel free to give advice, and three, just the day-to-day worries of management and concern about the future. My brother-in-law with Type I is 40, and a mess physically, and it is so distressing to see what might lie ahead for my kids is we don't do our best. It's a clear and present danger to our family each day.
As far as important things to know about sending your child to school, there is a lot to do.
1. If your child is newly diagnosed, talk with the school/district nurse and ask her to set up a meeting with the team before the child comes back to school. Chances are they’ve dealt with diabetic children’s needs before, but your child’s individual needs and concerns need to be clearly spelled out before he or she gets back to the classroom.
Think through all the different places your child will be a in a school day: the bus (both ways) or a car, classrooms, hallways, bathroom, cafeteria, gym, and outdoor recess. Carefully consider all the things your child will need to be prepared for—make a plan, spell it out on paper, get medical approval (while you’re still with your child in the hospital would be great) and present it to the team with all the things they will need to implement it. The hospital’s nurse educators will have given you lots of information—copy it and pass it on to your child’s support team. The more education they have, the better chance your son or daughter has of keeping his care low-key and simple.
2. Ask to meet with all the school personnel who will deal with your child: school nurse, teachers, principal, bus drivers, aides, recess monitors, librarians, custodians, office staff, and physical education teachers. Ask the school nurse to help present information relating to general diabetes management, and you be an advocate for your child’s individual needs, especially if there are other medical, emotional, educational, or social considerations. If your child is newly diagnosed, talk with the school/district nurse and ask her to set up a meeting with the team before the child comes back to school.
Think through all the different places your child will be a in a school day: the bus (both ways) or a car, classrooms, hallways, bathroom, cafeteria, gym, and outdoor recess. Carefully consider all the things your child will need to be prepared for—make a plan, spell it out on paper, get medical approval (while you’re still with your child in the hospital would be great) and present it to the team with all the things they will need to implement it. The hospital’s nurse educators will have given you lots of information—copy it and pass it on to your child’s support team. The more education they have, the better chance your son or daughter has of keeping his care low-key and simple.
If you prefer, ask to meet with each individually. You can talk about your child’s needs, give them a pictograph of what high and low symptoms look like, and ask what questions they have.
3. Establish a diabetes care station in the classroom—don’t let the school insist on testing in the office or nurse’s room—that will open up your child to walking around the hallways with low blood sugar. In the station keep testing supplies, treatment for lows, water bottles, insulin, syringes—everything he’ll need.
Educate your child’s teacher/team about diabetes, how to recognize signs of lows and highs, and stay in touch! Don’t ever stop educating and working with them. They are the guardians and second eyes on your child. When there is a dispute or difference of opinion, ask your doctor or the school nurse to back you up. You are the primary advocate for your child, and your diplomacy, patience, and persistence will smooth over difficulties.
4. Make a class presentation if your child is in elementary school. I’ve gone to several classrooms to talk with the children and answer their questions about their newly-diabetic classmate, my child. This also applies to a new school year and classroom with a patient who's had the disease for a while--new classroom means more education. I discuss beforehand with my child what will be presented, and work to assure his dignity and privacy will be respected, while teaching his classmates as much as possible. We want to make the diabetes manageable and minimal.
The kids’ questions abound: Does it hurt to get shots? Does testing hurt? Can I try it? Is diabetes contagious? Why did your child get diabetes? How did your child get diabetes? When will they get better? How come he got diabetes if he’s not fat? Did he get it ‘cause he eats too much candy? Can he still play? Did he get surgery in the hospital?
Dealing with situations where you won't be able to watch over your child? Got to educate the adults, for sure. I give his friends' parents a pictograph of what hypoglycemia looks like, good instructions on how to manage food, and leave my cell phone number. I do everything I can to make sure blood sugars will be reasonable, but also step back a little to let the child have normal childhood experiences, without emphasizing his 'other-ness'. Type I kids can eat anything anyone else can, they just match insulin to carbohydrates. So, it's a matter of good sense about the practical, and realizing it's okay if control isn't perfect at a party. We don't do sleepovers in general, because kids tend to do dumb things at them (in our family's experience, at least), but at late-overs I'm willing to run over to a friend's house and administer a shot halfway through the fun. I hate it when teachers don't let a kid with diabetes have the same snacks and treats that other kids get. Establish a working system that makes it so your child gets to be normal.
My greatest support has been my rock of a husband, who has, like a workhorse, hitched himself to the plow and walks steadily on, loving the kids, accepting the incredible financial and emotional burdens of 6 kids with it.
As far as treating the actual disease, I can't say enough good about our pediatric endocrinologist and his team. There are social workers, dietitians, amazing nurses and nurse educators, and our doctor is always learning and evolving in the way he helps us manage the disease. They are wonderful, and so supportive, and we feel blessed to have them in our children's lives.
Another great source of information is the internet; search out credible sites like the ADA and Lilly and the Disney site. Please advice your readers that using only homeopathy and natural treatments for Type I are not appropriate; they are dangerous.
With careful planning and preparation, going to school can be less worrisome for parents and children with type 1 diabetes. A great resource, from a collaboration between Disney and Lilly Diabetes, is a family friendly type 1 website – www.family.com/type1– where families can find inspiration, education and practical advice about type 1 diabetes. The collaboration also provides a resourceful book, Coco Goes Back to School, which is available through local Endocrinologists’ offices nationwide. This book focuses on a fun-loving monkey with type 1 diabetes, who is returning to school after her type 1 diagnosis and goes through how she deals with a variety of situations.
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