A New School Year: Training Your Teacher Allies

The start of a new school year is full of excitement, anticipation, and a little apprehension. It’s the start of a new stage, a mile-marker, leveling up in the game of childhood. Buying the endless array of school supplies is a little painful to the wallet, but who can resist the rows of colorful pencils, the potential of packs of unopened paper, or the childlike thrill of picking out the notebook or folder that best represents who you are to your classmates. Battling the raging hordes of consumers is no fun, but helping the kids pick out their supplies is. I get nostalgic every time and start trying to think of excuses why I,too, might need three Superman notebooks and some smooth-writing mechanical pencils in four shades of glitter.

But for parents who have children with medical conditions and disabilities, the start of a school year means something else, too: educating the new teacher and staff about your child’s condition, daily needs, and their responsibilities. This can be a daunting task.

Last year was tough for Gabe. In retrospect, we know that he was struggling with symptoms of ALD for a long time and that they were becoming increasingly problematic as the school year progressed. We sought help and tried a variety of medications, but it wasn’t until his adrenal crisis and subsequent ALD diagnosis that we found out what was going on with him. Unfortunately, we had a negative experience with educating his teachers about ALD and Adrenal Insufficiency and ensuring their cooperation. It was the tail end of the year and Gabe had already been well and firmly established as “a problem.” When we explained his diagnosis, I don’t think that they were able to understand at first that problem behaviors (mood lability, difficulty concentrating, disorganization, ADHD behaviors that were unresponsive to medications…) were being caused by his condition and not by a personality flaw or failure of parenting. We clashed and argued several times between his diagnosis and the point at which they got it. Further complicating this was the fact that Cutler and I took for granted that the teachers would understand information that we passed on to them and would be able to draw accurate conclusions about his symptoms, medications, behavior, etc.

Eventually, 3 months after fighting for cooperation, the school understood how serious Gabe’s condition is. It took me practically blowing up in the office about Gabe being given his medication while on a school trip. The short of it is that they didn’t seem to take it seriously and then seemed surprised that I would refuse to allow him to go on the trip if he couldn’t take his medication. No one thought that was it was fair for him to miss the trip, but I was finally able to make them understand that this medication is extremely important – life or death important – and they made sure he would get his meds. After that, they called me every time Gabe got a bruise or fell on the playground. I’ll take overkill over nonchalance or medical negligence any day!

So, you can imagine the trepidation that I have with starting a new school year. I don’t want to go through that again!  I need for his teachers to be my allies, not to butt heads with them at every turn because they don’t understand his condition and needs. Gabe was originally assigned to a teacher I know and like, but the school decided to put all academically gifted students into one class. We found this out on Thursday evening, 3 days before the start of the new year. I was extremely anxious at first because I don’t know the new teacher at all.

I felt pretty bad about dropping a bomb on the new lady as soon as we walked through the door. Our introduction went something like this:

                    “Hi, we’re the Kornegays. This is our son, Gabriel. We’re very excited about the new school year and glad to meet you. Listen, we need to arrange a time to meet ASAP before school starts Monday. Gabriel has a degenerative genetic disease that causes a life-threatening condition called Adrenal Insufficiency. He needs to take daily medication at school and you will need to help him. He also has to have an emergency shot if he gets sick or hurt and we really need to train you on administration by the start of school. I’m an EMT and, unfortunately, I’m working this weekend so I can’t meet you until after 6pm. When can we talk?”

Mrs. M seemed, understandably,a little taken aback. I wasn’t sure if she was paying attention and wasn’t sure how much info to give her right off the bat. I’m sure I overwhelmed her, and she probably thought I was crazy, but it was necessary to arrange a meeting right away. What if he breaks his wrist the first day of school by jumping off the swing? She'll have to give the shot and call EMS. Because she couldn’t meet after 4pm and I couldn’t meet before 6:30pm (even later if late calls came in – which they did), we agreed to a conference Monday morning 45 minutes before school starts. The school nurse was, thankfully, on hand again and agreed to join us to talk about injection training and an IEP plan. The nurse had received her packet from Adrenal Insufficiency United! I encourage all parents of AI students to get a packet for their school. Order here:    Thanks, Jennifer Knapp of AI United !!

I am a list-maker. I write lists of every dang thing. It organizes my mind and determines my approach, helps me make sure I’m not forgetting anything… So, first I made a list of what lists I needed to make for the teacher! I decided against a food restrictions list. Gabe is educated enough about his diet and I can just tell her “low fat, no peanuts, no fried food, no grease, no junk” and that should suffice. Besides, we plan to pack his lunch. I decided that she needed a step-by-step list of instructions on the indications and administration of Solu-Cortef, his emergency med, a transport instruction and demographics sheet to give EMS if she has to call, and a list of daily medication instructions. NC Kid Base has an EXCELLENT form for children who are at more advanced stages of the disease. You can find that sheethere:

The sheet linked above has everything from basic info to special technologies and an anatomical figure to shade for diminished sensations, paralysis, and ports. The Transport/Demographics form that I created is much more simple and is suitable for children who, like Gabe, are less severely affected by ALD. It’s my opinion that this would save me, as a new EMT, time on-scene and I could probably transport faster if I have all the info I need already gathered for me (like when we respond to patients in healthcare facilities)

I found a great training video on administration of Solu-Cortef that I encourage everyone taking care of a child with AI to watch, whether they are a guardian, a teacher, an in-home health provider, or a babysitter.

I created a step-by-step instruction list based on this video. There is a step missing that appears in our IM injection protocols. This goes after inserting the needle and prior to depressing the plunger. It is to aspirate for blood. One would pull back a little on the plunger to see if blood enters the syringe. If you draw up blood, you’re in a blood vessel. Withdraw the needle and reinsert into muscle. The video leaves this step out. I talked to my paramedic training partner about it and it may be that this step is just confusing to a lay-person and appears to be unnecessary by CDC standards. So, if you’re not comfortable doing this you can probably skip it. Just be sure that you’ve inserted all the way into the muscle.

Lastly, I created a simple list of instructions for daily school medication administration and blood glucose testing. ALD parents, feel free to borrow any of these forms and modify them for your own use. 

Pencil cases make excellent emergency kit containers!  We picked up a couple of bright yellow-green soft box cases and turned them into kits. Inside is everything that the teacher would need to administer the dose (Solu-Cortef, syringe, gloves, 2x2 gauze, alcohol wipes, and bandaids - I went with Superman bandaids to remind Gabe that I love him and he's my strong superhero), a copy of the administration indications and instructions, and a copy of the EMS sheet.

By all appearance, the new teacher is eager to learn about what to do for Gabe, especially in an emergency. I’ve been exchanging emails with Mrs. M to educate her as simply and straightforwardly as I can about the disease and adrenal insufficiency and to provide her with the forms before the meeting. I’ll bring in hard copies for her to keep. This way, she will have time to formulate questions and we can make the meeting briefer so that she can start her first day with her new students on time. I appreciate that she is taking the time to meet with us and her response.

I feel prepared and positive about the new start! Good luck to all the returning students. I wish you a happy new school year full of fun and learning. And to you parents out there: I wish you a stress-free start, patience, and some quiet moments of peace.