just for kids

september 99

Ever year about this time parents of children who have special needs at school begin to worry about how the new school year will go. Will the teacher be sympathetic, overindulgent, rejecting, downright harmful, or can this be the year of calm, learning, and few phone calls from the school? The question is, who to share what with and how may it be modified as our child matures, but there are certainly things we as concerned parents need to come to terms with and then act on. First, we can not pretend at any age that our children will never need someone to help them out during the school year. Second, we cannot assume that a person will know what to do to protect our child. And so, we must do that thing that all good parents do, protect our children with the least intrusion on their autonomy based on their age and competence, knowing that we may have to reconsider our methods if the situation changes. The good thing about having a child with diabetes, if we can actually state that without getting letters to the editors, is that you have a health care team to bounce ideas off of and from which to get information. Use them. Before school starts is a good time to have your child's checkup to see how capable he/she is to verbalize needs and care for him/herself. It is a good time to discuss normal ego development, that's, how a child of their age looks at and reads the world, both internal and external, and will react under various situations. It is the place to get new information about medication, testing methods, research interventions for high and low glucose levels, and suggestions on how to share information with school personnel. Sometimes, we think that we are asking the same questions time after time, but as our children mature, these questions have different answers and we as parents need reassurance that we are helping our children to grow into independently acting and thinking young people. To compose this article we have examined what experts in the field suggest and are happy to share their suggestions with you, understanding that no one knows your child as well as you and your health care team do so please bounce ideas off of those who know and presumably care most about your child. Some of the articles I read state that you need to share more about diabetes with the school personnel of younger children than older. It makes sense that the school nurse and teachers may have to help a first grader more than an eleventh grade teenager, but there needs to be informed and considerate people available for all children with diabetes. Think of the times during the day of a teen when hypoglycemia may be a problem and the repercussions on testing and grades, and you know that a visit to the school with your child to explain diabetes is very important. As an aside, I, as a diabetic, would not think of embarking on a novel experience without knowing that someone was my safety net, so why would we expect out children to not want the same. We all know that children with diabetes are due a "free and appropriate" education under the law in any school which receives federal funding. This is based on the Individuals With Disability Education Act and Section 504 of the Rehabilitation Act of 1973. Your child has the right to have a written plan (an Individualized Education Program, IEP, which spells out the accommodations that the school will make on his/her behalf. Certainly the plan would include time and help, if necessary, for checking glucose levels and giving insulin injections, eating when necessary, participating in extra-curricular activities, having lunch at an appropriate time with time to finish, access to water and the rest rooms, and finally no penalties for extra sick days due to diabetes. You have the right to meet with the school personnel and to bring experts to the school to explain your child's needs. You have the right not to sign an IEP that does not meet your child's needs as spelled out by you and/or your experts. You have the right to be notified of any changes that the school makes in the IEP, and to be included in any of these changes. You and your child have the right to expect and receive confidentiality about what is said and done in these meetings, results of tests, medical information, and the IEP, itself. You have the right to sue if the school does not provide what your child needs and to go before a mediation board. Stand firm. No one knows your child better or cares more for them than you. Sometimes our discomfort is only a gut reaction to begin with. Take your time, get a paper trail, and make suggestions to those in school who are most understanding. Schools and teachers differ in their ability to deal with the "differences" of the world, but if you keep looking you'll find a teacher in a school so that your child will be O.K. Before you judge, remember your first response when you learned you had a child with diabetes. Here are some suggestions for how to proceed before school begins. If your school has already begun, it's still not too late to implement this list. Meet with the principal to find out what the school policy is for children with diabetes. For example, something as simple as where a child tests for glucose levels may need negotiating. Find out the names of adults who will come in contact with your child. The school bus drivers is an important as the sports coach, the teacher, or the librarian. Meet with your child's teacher or teachers. Bring information to help them from the medical team and other sources that explain diabetes. For younger children this will be your chore. As your child matures they will need to come with you to describe how it feels to be hypoglycemic, the symptoms, and the specific needs of someone with diabetes. You will want to educate the teachers, not scaring him/her, but merely sharing facts. The ADA and FDF have fact sheets for teachers that you can use, but I bet your health team has them also. Allow the teachers to digest the fact sheets which will describe what diabetes is and what a child must do on a daily basis to control it. It should also describe hypoglycemia and what to do in case it occurs. Make sure the teacher understands all of this and that you answer questions. The shoe may be on the other foot and you are the teacher's teacher. Find out when your child will be eating lunch so that you can make changes in meal times, modify insulin needs, plan for snacks, etc. Share your plans with the teacher. We all have different symptoms of hypoglycemia and it's important that the school personnel know about your child's. This includes everyone from teacher to bus driver, to coaches, and even the custodian. Give the teacher a supply of snacks for hypoglycemia and for normal mid-morning carbohydrates. Ask what facilities she has for storing these. You don't want to leave a half gallon of milk with someone who has to leave the classroom with no coverage to get 1/2 cup of milk. This will get very old, very fast. Make sure the staff knows never to leave a child who they suspect is having an insulin reaction alone and why this is very important. Give those who need to know a fact sheet about your child with the understanding that it is confidential. Have a meeting with the gym and sports teachers and share parameters for exercise and interventions to exercise if blood glucose level is over 240 mg/dl so that blood sugar will not rise very high causing ketoacidosis. The experts at Joslin Diabetes Center in Boston state that children with type 1 diabetes should not exercise at all if the blood glucose is 400 mg/dl or higher. No exercise with low blood sugar without carbohydrate snack can keep a child from becoming hypoglycemic. Make sure they have a teacher information sheet with descriptions of symptoms of hypoglycemia and suggested interventions. Have a supply of glucose tablets, juice, candy such as jelly beans that can be counted out, or soda. Taking glucose levels and why that is important needs to be discussed and understood. For younger children, you and the school may feel better if you can be reached by pager. As your child matures and takes more responsibility, this can be scaled back. Share worrisome signs and behavior with those who need to know. They may not understand when it's important to take you out of a business meeting or when a phone call after hours will suffice. Whatever you do, keep the lines of communication open both ways so that you feel comfortable to contact the school about your concerns and they feel safe to contact you when they have concerns about your child's behavior. Remember, you all should be on one team, and that is your child's. What should be included on a teacher information sheet? Child's name Parents' names, address, home and business phone numbers Alternate person to call, relationship to your child, phone numbers Physician's name, address, phone number Signs and symptoms of your child's hypoglycemia Time of day it may be more likely to occur Most effective treatment Time for morning and afternoon snack and types supplied Suggested "treats" for child during school parties Behavior that needs to be shared with parents. For young children or those who do not have a glucometer with a good memory, you may want to have a time sheet at school to record the time blood is tested and results to help the health team keep tight control. Ask the principal about policy of sharing with classmates facts about diabetes. Your child may wish to give a bit if information, or he/she may want to run and hide if the subject is broached. Discuss this tricky subject with your health care team who can speak with your child about the pros and cons of having friends know about their diabetes. Again, there are sheets available, but your child and his or her class may not fit into these guidelines and in fact, probably won't. None of us as human beings fit cookie cutter recipes for interventions all of the time or even most of the time. You can contact both the Juvenile Diabetes Foundation and the American Diabetes Association on the world wide web (look in our "links & letters" for their address) or through your local chapters to get teacher information sheets, information to share with other students and guidelines for diabetes care. Your health care team or diabetes educator and physician will also have information for you. Also, many companies that manufacture diabetic supplies have experts write pamphlets and fact sheets for distribution. Here's a recipe that kids of all ages will love making: Brown Sugar and Raisin Baked Apples (makes 1 serving) Teach your children how to make these delightful baked apples so next time they invite a classmate for dinner, he or she can "show off" their cooking skills. The recipe can be easily expanded, and even a younger child can help with some of the preparation. 1 medium Golden Delicious or Jonagold apple, 5 ounces (150 g), cored and cut into 5 rings 1 tablespoon (5 g) dark raisins 1 tablespoon (15 ml) fresh orange juice 1 teaspoon (4 g) light brown sugar ground cinnamon 1. Preheat oven to 350°F (180°C), Gas Mark 4. Cut a 12-inch (30 cm) square of heavy-duty aluminum foil, placing the foil flat on a work surface. 2. Pile the apples in the center of the foil. Sprinkle on the raisins and orange juice. Dust the apples lightly with brown sugar and cinnamon. 3. Bring the corners of the foil together and pinch foil to seal. Place bundle on a baking sheet and bake until apples are tender, about 20 minutes. 4. Eat out of the foil and spoon into a bowl. Per serving: 140 calories (4% calories from fat). 1 g protein, 1 g total fat (0.1 g saturated fat), 36 g carbohydrate, 4 g dietary fiber, 0 cholesterol, 3 mg sodium Diabetic exchanges: 2 1/2 carbohydrate (fruit)