Worst Case Scenario
“…y’all learn to take care of the things that are smaller and sweeter than you.” -Beasts Of The Southern Wild
It was almost two years ago that my son nearly died at school. Not until now, Henry’s third year in a new school system, have I been able to put the story on paper.
When Henry was entering into kindergarten we chose a very small private local school. It seemed ideal. Henry—who is funny, sweet and extremely bright—can be slow to commit but when he loves you, boy does he love you. With his new diagnosis he was brave, he was healthy and he was cooperative, but he was also really scared. If you’re bright like Henry, your mind is soaking up everything you read, everything people are saying, all at once. The thirst for knowing more is an intense drive…but couple that with a young and tender heart? It’s almost too much. The two things have trouble working together, and this is where the problem started.
From the first day of school, the teachers seemed so positive and excited. Like we do with everyone, we told them about the worst case scenario—really low blood sugar. Henry would be able to check his blood sugar levels on his own, but in the rare case that his blood sugar dropped really fast, he would need someone to help. We provided a low kit, gave instructions, wrote everything down on paper. We made little cards for quick reference. The teachers assured us that they were comfortable, that they could help.
One afternoon at pick-up, while I was checking on his low supplies one of the teachers was talking to me. There were only three kids in the kindergarten class, Henry and the sons of the two teachers at the school. The two boys were cousins and had been raised almost like twins. The teachers said Henry was having trouble connecting with the boys. I asked what games the two boys wanted to play. The teachers told me they loved to play knights and castles. Henry was obsessed with Tintin at the time, pretending to be the boy reporter on adventures across Europe.
“Oh. Do your children play Tintin with Henry?”
“And so he doesn’t play knights with them? And they don’t play Tintin with him? Doesn’t that make it about even?”
She stated that Henry was autistic, after only knowing him for two weeks. Uncomfortable, I looked out of the window and spotted Henry, lying on his back in the grass next to one of his girl friends from a grade up. They were pointing up at the sky and laughing. I was angry they were so quick to blame him.
Keep in mind that Henry is not an ordinary kid. His father Thor isn’t either. Growing up as a gifted child, my husband had a hard time connecting with people. He had trouble looking at people when they talked to him and didn’t relate to kids his own age very well at the time. Henry gets along better with older kids and adults and we work with him to make eye contact and to connect. People also expect more from him because he can speak like an adult, but he’s just a child. A child still grieving the scary diagnosis that changed the landscape of his entire life.
The fact is, Henry is just Henry. There is no one quite like him. I printed out three images of three kings, King Henry and two others with the names of the other boys. Then I printed out the major characters from Tintin. I explained to Henry that if he played knights with the boys, they might want to play Tintin. With his printouts in a folder, he couldn’t have been more excited to share with his classmates. I told the teachers, who smiled and said they would share Henry’s folder but I couldn’t shake the uncomfortable feeling I had from the conversation the day before.
After school, coming up to the garage doors, Henry’s eyes filled with tears as he said,
“Mama, why don’t my teachers like me?”
“Why do you think that? Of course they like you!”
“They wouldn’t look at my folder. They told me to put it away.” Inside the house, he walked to our bedroom and lay down. I sat beside him and held his head in my lap. I felt so bad for him but didn’t know what I could do.
That decision would soon be made for me.
The next day one of the students would celebrate her birthday right after lunch. I let the teachers know that I would be giving Henry enough insulin for the birthday treat. Having already explained about insulin, having sent them videos and having trained them that he needed his carbs to match his insulin, I made sure to remind them that he needed his treat on time or it could be really dangerous.
My phone did not ring once before pick up. Thor picked Henry up from school that day. On the way up the stairs at our house, Henry wobbled and shook, slipping off the step. Thor caught him before he fell, carried him up the stairs and we tested his blood sugar.
54. Dangerously low. We’d never had a blood sugar this low.
Henry looked pale and sick. I took him to our bed and he started crying. He told me how hungry he was at school. He said the teachers wouldn’t let him have a snack. He told me they’d said, “HALT! You may not have a snack, you are being a BAD BOY!”
Henry never used the phrase, “HALT!” He wasn’t making this up. After checking with a few other parents I found out he hadn’t had the treat. He hadn’t been at the celebration. He was denied what I had given him insulin for.
I was furious. I asked Henry what had happened. He said he had started to not feel good, really hungry. I asked if he checked his blood sugar and he said no, he was scared and asked the teachers to call me.
When they said no, he told me he had kicked a chair. With his blood sugar dropping precipitously they shut him in a room by himself while the rest of the school enjoyed a birthday party. When he tried to leave the room to get food to treat his low, they yelled, “HALT!”
I felt sick, I felt angry and I felt scared. What if he had passed out alone in that room? What if we’d given him more insulin for a bigger treat and his blood sugar had continued to drop?
All I could think of was my son, abandoned by the people I had trusted to take care of his little mind and body.
I left a message on their voice mail. I was calm. I stated the facts as I knew them and announced I was withdrawing him immediately.
Next, I got a phone call from none other than the father of the two teachers. When presented with the events, he said he was “not in the habit of believing children.” He insisted that none of this was true, that my son was in fact a danger to society and a violent psychopath. That my son’s blood sugar was not dangerously low when we picked him up. That they would sue me if I ever said anything to anyone about what happened. That I should be quiet, because it was such a small town.
You don’t call me or my child a liar. You cannot argue with a glucometer. Don’t mess with my on-point insulin math. Don’t you imply that I don’t know what I am doing and do not call my kid a psychopath because he kicked a chair when his blood glucose (BG) was rapidly falling and trusted adults were denying him the carbs he needed.
They sent several emails over the weekend pleading with me not to share what had happened. It was too late. Since it was a private school there wasn’t much I could do. I called the ADA and I called the sheriff, not really expecting them to understand.
“Did you say type 1 diabetes?” the sheriff said. “That’s what your son has?”
I braced myself for him to say something awful. I was just so beaten down.
“My nephew has type 1. Do you want to press charges? I’m going over there RIGHT NOW!” He seemed angrier than I was. It was the first moment I felt like other people were in it with us. It wouldn’t be the last.
We settled into life in a new public school. What with lots of communication about his 504, we got to know the teacher. Even before he started, he visited the classroom. Months later his amazing kindergarten teacher strapped his continuous glucose monitor (CGM) receiver to her waist at recess. If he felt low during story time they would wait for him to check his number. They cheered on his bravery when he poked his little finger, his friend marveling at the little drops of blood he squeezed out with no tears in sight. When his numbers were high and he was upset, the teacher built him a little nook of his own where he could drink water and read a book.
It was almost two months ago that my son nearly died at school.
Henry’s pancreas decided to work one day, along with the insulin he was given at lunch. His blood sugar once again dropped precipitously, causing him to lose control of his body and emotions.
The staff at his new school didn’t lock him in a room. They didn’t call him a bad boy. They tried to give him the sugar he needed orally. When that didn’t work, they gave him glucagon, one of the hardest things to do for someone with type 1 diabetes (T1D). The needle is big and scary, the shot is like pressing the panic button. Henry, with his mind addled from low blood sugar, fought his teachers tooth and nail, kicking and screaming.
It would have been so easy for them to say he was bad. It would have been so easy for them to write him off. But they held him tight and gave him what he needed to save his life and even though he was a sobbing wreck when we picked him up, I knew that my son was truly safe and truly loved.
For more from Sara Jensen, her story on caregiver anxiety.