What Schools Need to Understand

PANDAS is a medical disease. NOT a psychiatric one. 

What you see at school is often not what we get at home. My child tries to hold it together in school. He hides his symptoms from you as much as he can. Stores it up until he comes home. And when he's feeling really badly, he can't even make it to school. He can't concentrate, can't think, can't learn. And then he feels stupid.

Any stress affects my child and can trigger symptoms. That includes feeling different at school, taking tests, being asked to do chores, being asked to go for a long car ride, being asked to take a shower when he's having sensation issues with water.

You see, my child doesn't get the flu anymore. Or strep. Or a cold. At least not the way other kids do. Instead, when my child is exposed to germs, his own antibodies attack his brain instead of those germs. The result isn't pretty. The result looks psychiatric. Psychotic. Rages. Laundry baskets flung. Doors broken. Stampedes. Tears. He's not himself. His brain is under attack.

If my child has a fever, call us. That's GREAT news! Our child doesn't get fevers. In fact, his usual body temperature is low. Sometimes when he has a fever, his symptoms disappear. Well, it happened once. He doesn't get fevers.

My child has symptoms, not behaviors. A behavior plan will not really help. But if he's having a tough day, he needs a healthy time-out. A visit with someone who cares about him. At home, I'll hold him. At school, he needs to feel comforted. If he's ticcing a lot, he will be embarrassed and will need to do it in private. Help him find a quiet room. 

If he's not doing well, there might be another child in his vicinity who is sick. Or is a strep carrier. You'll never know. Strep carriers don't wear a big Superman-sized "S." 

My child has OCD and doesn't like to do the wrong thing. He worries that people are angry with him. But he's also a normal kid who is testing his limits and sometimes needs consequences. It has taken us, as parents, a long time to correctly determine between a symptom of the disease and normal childhood behavior. As an educational professional, please first assume that anything you see is a symptom. You don't live with him. You don't know him. Ask us first. 

His disease is invisible to his friends. They don't understand why this once-popular kid now has occasional outbursts, why he might suddenly rage, why he's not funny and easy-going. Some of our friends work with their children to understand that when our son is angry, he's probably not well. When this happens, his close friends understand that he needs space, needs home, needs to recuperate.

But most people don't comprehend this. They just see an obnoxious kid. 

My child will not share his OCD, his fears and intrusive thoughts with you. But these symptoms are there. 

My child needs to wear a hat with a brim because he now has sensation issues. His body is so fragile that the overhead lights bother him. Crowds bother him. Sometimes, showers bother him. Too much noise can bother him. And if he's flaring from exposure to germs, the sensations are even harder for him to handle. 

But he doesn't look fragile. He's a fast runner when his joints don't hurt him. He flashes a quick smile. His arms are getting stronger. When he strikes out at home, he can be hurtful. His fragility lies in the fact that viruses, sensations, stressors, bacteria can all set off an attack on his brain. 

My child's brain doesn't work for him the way he needs it to. He will tune out. It's not ADHD but it can look like it. It's not on purpose. You might need to repeat what you just said.

If my child doesn't speak to you, it's not rudeness. Ask him how he's feeling. One of his recent teachers realized this and asked him to at least knock on the door of the room in which he closeted himself so that she would know he was OK. She got it. A previous tutor (not a teacher) got angry with him and told him that his parents didn't raise him to be impolite. Our kid couldn't even defend himself. The words were all gone. And because he was ashamed, it took him days until he told us.

You might need to give him a word bank because he has trouble with word retrieval. His memory isn't as good as it once was.

He has visual/spatial issues. Math is hard for him. Plus he missed a lot of instruction over the last few years when he was sick.

Hand-writing is tough for him. He needs a computer. He needs to be able to dictate sometimes. 

Reading is harder for him if he doesn't feel well. He has trouble tracking. If he's ill, you might need to read to him.

But he's smart. Oh, boy, is he bright. So challenge him, but not with worksheets upon worksheets. With ideas, with arguments, with concepts. He's creative. You need to be, too. Because creative projects overwhelm him.

Yes, this kid will completely shut down. He needs assignments broken into chunks. He needs to achieve success. Often, he needs someone to walk him through, to figuratively hold his hand.  

Remember, this is a kid who has trouble walking into a supermarket. A kid who doesn't want to leave the neighborhood anymore. Remember, this is a kid who was once fine. Social and healthy. 

He will be again, someday. And that's our job, the parents' job. He will miss school because of all the doctor appointments. We will miss work. We will be working on saving our baby. We need your support.

So please be kind. To him, to our family. Because there are many tears that you'll never see. 

And educate him. Because this child will become an adult who will succeed. 

Maybe he'll even find a cure for PANDAS. Or become an educator.


-Lisa Kilion