Following my son’s diagnosis, sitting in the little room at the Joslin Diabetes Center, learning how to be a nurse, a doctor, a pharmacist, and a math scholar–it never crossed my mind that I would have to be a lawyer too. It wasn’t until I sat in another little room in the school building, surrounded by well educated professionals telling me “we can always call 911” that I realized–I needed to learn how to advocate for my son, learn how to educate people about diabetes, and learn the laws and regulations which guide schools on dealing with students with a medical condition/special needs. I realized quickly that I needed to take off my rose colored glasses and put on my big girl pants. I also realized–I needed help and I called the American Diabetes Association Safe at School helpline. (1-800-diabetes)
Diabetes management in schools or management of any special needs a child may have is about medical safety and inclusion. Parents do not want to burden already overburdened schools–we just want our kids to be safe in our school buildings and be allowed to participate in all and everything schools offer–just like everyone else. That’s it. We don’t want the rules changed to make it easier for our kids, we don’t want them to get a free pass–we want them to be able to participate and if that means a nurse, an aide, or special accommodations are needed during the school day or at after school clubs, dances and activities–what is the problem?
Recently a parent of a student with special needs (not diabetes) shared with me a letter sent to parents of special needs students by a school principal in our district. ( not all parents mind you-just parents of children with special needs) The letter came after a school dance. The parent requested an aide to attend a school dance with her child, the aide was provided but the parent was told it was a ‘one time thing.’ The dance was a huge success–for the child and the child’s friends who were able to enjoy such a special night together. Then came the letter–notifying parents that aides would not be provided for future events-in effect-excluding all children with special needs from such activities. WHAT???
Stuff like this gets me hot under the collar–whether it’s my child–or a strangers child.It’s not just our school district–unfortunately I hear about exclusion from many parents, different districts. Sadly it is few and far between to find a district getting this right-they are out there–and a huge HURRAH to them! Schools have a legal obligation to make sure all students can participate in activities after school–even if such activities are run by the PTA/HSA, an outside group, or by school staff–even if the activity is not on school grounds. Schools are indeed getting federal and state funds to do just that. Why is it so difficult? Why does this group of children/parents get such a runaround? So much ‘we need to find out,’ ‘PTA/HSA events are not school events’ and ‘let us check with our lawyers.’ It took me less than 5 minutes to find regulations regarding extracurricular activities on the Department of Education website. It took me less than 10 minutes to get on the phone with the Department of Education Office of Civil Rights and confirm what exactly qualifies as a ‘school sponsored event’ and find out a schools obligation to students with a disability-but everyday, in a world of ‘Dignity for all Students’ and character education programs–kids are being excluded. Legalities aside–where is the compassion and common sense?
I spent a few years going to bat for my son to ensure his medical safety during the school day. I was fortunate enough to have the backing of a great legal team provided by The American Diabetes Association’s Safe at School program. So, let’s fast forward…year 4 of taking diabetes to school=SUCCESS: faculty has been trained in diabetes-including how to administer glucagon in case of emergency, school district now has a written policy which put in writing that faculty can be trained and can administer glucagon, and Frankie is able to manage his diabetes anywhere in the school setting–including the bus.
Success stories: Frankie’s teacher learned what diabetes is–and the first words she spoke to him at the beginning of the school year…”I’m proud of you!” Priceless! The encouragement and understanding Frankie has received from his teacher this year has turned his pleas to be home schooled into up and at ’em, can’t wait for school excitement. Frankie has been able to manage his diabetes himself in his classrooms but also has support from his teachers when he needs it-if his glucose is too low/high, when snacks are served, and when he just doesn’t feel quite right. Frankie has had 2 diabetes issues on the bus this year–a severe low glucose (39BG) and a pod (insulin pump) malfunction. Frankie’s fabulous bus driver, one of the first to volunteer to be trained and to learn how to administer glucagon, handled both calmly and with her constant smile. With the low-she made sure he was eating and kept an eye on him–got him home safely and with an increased glucose level. When the pod malfunctioned–she called the garage and had her supervisor call us at home to inform us we needed to meet the bus–and delivered him safely to the house. This past week, the week before the holidays- which can create havoc in diabetes management because last minute treats can be served, glucose levels get wacky because Frankie is excited, and in the mix of parties, special events and cozy days- diabetes can easily be forgotten. Not this year! An ice cream was served last minute in Frankie’s lunch room-and instead of being excluded from having it, or given it without thought to diabetes–the teachers in the lunch room attempted to contact me for direction. Unfortunately, their was no cell phone reception in the cafeteria–so the faculty asked Frankie if he wanted to call from the office and Frankie chose instead not have the ice cream. Here comes more FABULOUS…the Principal called me to tell me what happened and to ask about coming up with a plan should this occur in the future. WOO HOO! The next day, another call from the Principal in the morning to notify me that the school nurse was out sick and there would not be a school nurse in the building at all times. The Principal let me know that a nurse from the building next door would be over to administer insulin at the designated times for students, and let me know who was trained in glucagon should an emergency happen when there was not a nurse in the building that day. At the top of the list of faculty, trained and willing to administer glucagon that day–the Principal herself.
This has been a wonderful school year for Frankie thanks to the help we received from the American Diabetes Association, persistence, and diabetes education-but Frankie is still excluded from after school clubs and activities unless a parent can be present–because an adult trained in glucagon administration is not provided by the district for after school events. Frankie is a successful cub scout, member of our church’s youth programs, and participates in various recreation programs around town. Trained adults/accommodations are provided in each of these programs without question-so Frankie can participate. So Frankie is safe in school during the school day–as for after school activities, for our family –we are handling those like the movie “What about Bob?” We repeat the refrain…”baby steps Bob, baby steps.” but we won’t just sit back and look exclusion of other children in the face and turn our heads either. As parents of a child with special needs–we are all for one and one for all.
What are the reasons behind this exclusion? Tell us–to our face. Better yet-look our children in the face and tell them why they can’t go to the dance, be in after school clubs, and all the rest. Is this about money? Okay-tell us straight up-so we can ask our Parent Councils and PTA/HSA’s to create funds to pay for trained aides, nurses, and any accommodation that may be needed. I think these groups don’t realize children are being left out and would support these children without question. (Maybe my rose colored glasses are still on–but I don’t think this idea would get rejected.) Is this about liability? If yes–schools are creating a valid reason for parents of children with special needs to bring action against them. When the answer is ‘we need to consult our lawyers’ –you better believe it.
Parents, all parents, need to be considering this issue in their school districts. As we teach compassion and acceptance in our homes–lets make sure our children are seeing the same in their schools.
Together we can stop the exclusion and bring about inclusion in schools.