So, there’s a pattern developing. Ben is being sent home, more often than not over the last few weeks (stretching into at least two months), on either Thursday or Friday for symptoms that appear at school, but disappear once Ben arrives at home.
I had a nice, long talk with the school nurse, who also has experience working in a different capacity with children with special needs, explaining my concerns and comparing that to what she’s seeing and the reports she’s getting from staff. On the one hand, Ben is not an effective communicator, so when he shows signs of illness or distress, they have a responsibility to respond. He can’t tell us when he’s sick, so they have to use his behavior as a strong determinant. On the other hand, he’s not “sick” at home, he’s losing a lot of educational time, and there is too much of a pattern for it to be coincidental. The nurse and I agreed that we could understand where each side is coming from, but also agreeing the current situation needed to be addressed in a new way.
Something isn’t right about this. The way I see it, either the staff is getting tired of Ben by the end of the week and finding reasons for sending him home or Ben has learned how to manipulate staff and is contriving reasons to get sent home.
If it were Alex, especially Alex as he was a few years ago, I wouldn’t be suspicious, because Alex was underweight, undernourished, prone to infection, and had a lower than normal immune response. In more old-fashion terms, Alex was a sickly child. Ben is not. Ben’s weight and nourishment are both up. He has a healthy resistance to infection and a strong immune response. He’s not sickly. In fact, Alex has made sufficient gains that he’s not sickly either any more, but the point is that Ben never really was.
But Ben does know how to make himself throw up. He does express his resistance in a variety of different ways, some of which can be misinterpreted as signs of illness, but are more accurately signs of distress—a different kind of distress. And they are seeing a variety of those ways at school. He’s stubborn and strong-willed. He doesn’t communicate in traditional ways, but he’s very clever and is usually pretty good at figuring out how to get his way. Mark and I know this, and we also know that giving in reinforces the behavior, so we don’t give in, even when we’d really rather not fight with him. The long-term cost of the temporary relief just isn’t worth it.
This time (last Thursday), Ben was acting out of sorts and they’d documented him paying a lot of attention to his ears. They suspected he had an ear infection. So, I came in and, in front of the nurse, I pressed on the backs of Ben’s ears, I stuck my index fingers in his ears, I pulled on his ears. I explained that he probably wouldn’t let her or other staff do any of this, because his ears are so sensitive, but that he lets me do this. (I didn’t bother explaining about the trust bond between a mother and a child; she got that all by herself.) I also explained that, considering how sensitive his ears are naturally, he’d be screaming and thrashing if he actually had an ear infection.
I also explained what’s required to check his ears (professionally speaking) for an ear infection—how the pediatrician who has worked with Ben since he was born would press Ben on the clinic bed, use one hand to hold Ben’s head at the right angle, use his other hand to hold the tool he uses to look in Ben’s ear, use his knee to pin Ben’s torso down, while I held Ben’s legs and arms. It sounds very dangerous, but it’s actually quite effective and safe. (Much safer than trying to stick something in Ben’s ears while he’s thrashing around.) It sounds horrid, and it is. The only reason I can stay in the room while this goes on at all is because I know it would be far more traumatic for Ben if I wasn’t there.
Ben’s ears are very, very sensitive. A lot of people worry on a regular basis that he has an ear infection, but none of them have ever actually seen Ben with an ear infection. The difference is unquestionable. I remember one of Ben’s therapists who frequently brought up the possibility of Ben having an ear infection through observations of Ben’s (ab)normal obsession with/aversion to his ears. Then, Ben actually got an ear infection. She stopped raising the issue for (ab)normal behavior after that.
I understand their reasoning. In a child whose ears are less sensitive, Ben’s normal behavior would be a good reason to suspect an ear infection. I get that. But, once I explain what it takes to really, definitively check Ben’s ears, people understand why I don’t go running out to do that every time Ben “starts” pulling at his ears. I explain that my mother-in-law is a nurse practitioner who has taught me some tried-and-true ways to test Ben for a pain response that helps us to avoid unnecessary traumatic trips to the pediatrician.
The nurse understood. And I made sure she knew that I understood the position they’re in. But something has to change.
After my conversation with the nurse, the principal called and we worked out a few different ways to take a closer look at what’s going on. Hopefully we can figure out what’s bothering Ben and get this all under control. I’m going to be visiting his school this Thursday and Friday to see if my mommy-radar can detect something they might have missed.