SPD, Interoception, and Figuring Out Whether a Kid Is Really Injured

In my previous post I wrote about how since Stow always thinks he has broken a bone whenever he twists an ankle or stubs a toe or a finger, we have a difficult time knowing when something is actually serious. This isn't because he is trying to get attention or be melodramatic but because, thanks to sensory processing disorder (SPD), he is hypersentive to touch and also has a heightened sense of what’s going on inside his body (this sense is called interoception). Typically, we have to wait to see how he seems one or two days after any kind of injury to determine whether it requires medical attention.

After taking a baseball to the tip of his middle finger on Wednesday (you know, when I refused to go pick him up because we wanted him to make it through a whole week of school), we waited until Thursday to see how he was feeling. When he said it hurt more, and he felt like he could feel a bone moving 🤢, I called to make an appointment.*** By the time we finally saw his regular doctor, the X-ray technicians had gone home for the day, so it took another day to get the x-ray and results. Late Friday, they confirmed it was broken.

He loved that the X-ray technician told him to “give her the finger”--lol.

The orthopedic doctor's office told me they couldn’t get him in until Wednesday. An autistic kid with a hyper-elevated sense of interoception and a good dose of anxiety who now knows his finger is broken can NOT wait an additional five days to have his injury treated. Just, no.

So, today we went to the orthopedic walk-in clinic in another town and got a diagnosis and the appropriate splint. Fingers crossed that this won’t require surgery (and, yes, I’m aware of my bad pun—sometimes I just can’t help it).

Fortunately, Stow finds humor in the fact that he will be “flipping people off” for the next six weeks because I’m having less fun with this. In fact I’m about ready to never let him leave the house again, at least not unless he’s wrapped from head to toe in bubble wrap.

***If you are wondering why I didn't just take him to the ER: 1) He doesn't like change so wanted to see his usual doctor, and 2) Waiting can be really hard for autistic kids, and I didn't want to add the stress of an interminable ER wait--of course, if we thought it was an injury that required immediate attention, we would have taken him anyway, but since we had it splinted, and he wasn't in excruciating pain, we waited.

Another Call from the School Nurse

When the school nurse called today, she led with, "This time it's not his head" before proceeding to tell me that Stow suffered a jammed (and hopefully not broken) finger when a softball hit his hand during PE. Like the day of the second concussion, the call came when Ren and I were out together. Since Ren and I rarely go out together especially during the academic year, the timing of the call was unsettling. We all, the nurse included, have residual trauma from what has gone on this year.

Stow insisted on talking to me; his voice told me he was struggling to keep it together. He was sure his finger was broken and, even if it wasn't, that he needed to come home because there was no way he could focus in class. I reassured him. Told him the nurse would give him ibuprofen and ice and tape his fingers together and that I would call and check on him. He did not like this solution, but he agreed to it.

When he got home, the three middle fingers of his left hand were taped together with a small ice pack incorporated into the mix. Bless the school nurse. She knows and cares about Stow and can speak his language when he is panicking about an ailment. Stow often thinks his bones are broken, so we will wait until tomorrow before deciding about prompt care. 

Random picture of Bunny Pearl because I couldn't find any other picture would make sense with this post.

Last week, it was consecutive jolts to the head (again in PE) when the basketball came at him faster than he expected it to. Since that led to a headache and nausea, Ren picked Stow up early just to be on the safe side. Concussions and concussion recovery are tricky. 

Having an autistic kid who greatly prefers being home playing video games is also tricky. Once he gets sent home by the nurse a time or two, Stow is much more likely to think he needs to come home if he isn't feeling 100%, and with two concussions under his belt, he often isn't feeling in peak condition. Telling Stow I couldn't pick him up today was hard. I didn't know (and still don't know) if Stow's finger was (is) broken or not, but I knew he needed to stay at school if he could. We've got to get him through a full week of school.

There is no point to this post other than to say we are still here and still making our way through the confusing world of middle school for Stow. The smooth sailing we experienced from the start of school until the first concussion in late October is a distant memory. Just when he seemed to be hitting his stride again, the second concussion happened. Now we struggle to get him to school, to keep him at school, and to help him focus on his school work. He has lost a lot-- his chance to participate in his first bowling season, a band trip to Six Flags, recess, PE, band, his confidence, his memory...

Completely unrelated picture taken by Sky of a train in downtown Chicago. 

Following the second concussion, we had to take some steps I never thought we would have to (I am being intentionally vague here for, you know, reasons). Up until the second concussion, I believed that all of the advocating and educating I was doing ensured that Stow would get the support he needs at school. I mean given all the of 504 and IEP meetings I've attended, I should be a pro, right? But after seeing the way the school handled the second concussion, it became exceedingly clear to us that the school STILL doesn't know how to effectively support and accommodate Stow. As one of his therapists put it, "They treat autism like it's a behavioral issue when they should be treating it as a developmental delay." 

I can't even count how many times Stow has been disciplined for a behavior directly tied to his poor social skills. And I also can't count the number of times I have been told that he needs to be disciplined so he will learn his lesson. Round and round and round we have gone on this as I have repeatedly explained that the lessons Stow learns from the problems in peer relationships are simply not the same as what his neurotypical classmates learn. And over and over I have asked for two things: a full-time autism specialist on staff with the school or the district and constant line of sight support for Stow. To the first request, I have been told either they can't afford to hire an autism specialist or they can't find someone to provide autism support. And in response to the request for more intentional supervision/support, that Stow is fine and doesn't want to be followed around by an adult. If these two things had been in place, we are fairly certain we wouldn't be talking about concussions right now.

Guess what happened almost immediately after I told the case worker we were working with a special education lawyer? The district hired an autism specialist who will start in the fall. And, the conversation about line of sight supervision shifted from whether he needs support to how they could provide it in ways that would be the least disruptive to his efforts to socialize appropriately with his peers. For the first time, folks on his IEP team acknowledged that THEY DON’T ENTIRELY KNOW HOW TO MEET HIS NEEDS and so want to base future decisions about his accommodations on what the autism specialist advises. OMG, you guys, I have been trying to get them to do this for YEARS.

We can't really afford a lawyer, and I don't believe in being litigious, but if the end result is better support for Stow and all of the other kids like him, then it's worth it.