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.

Shattered

Sometimes when I sit down to do a blog post, it writes itself. Other times, the story that needs told can't find its way out of my head to the keyboard. This is the latter, so bear with me as I wrestle it to the page. And know going in that I am not going to be able to tie this up into some kind of neat parable or object lesson.

*****

The day before I flew across the country for a four-day conference, the school nurse called. I don't know if you ever get calls or emails from school, but they often start with "First, I want you to know that [child] is fine." Or, they don't. And in our case, when they don't, I know I am about to hear something that will upend my day. This call started with, "I'm really sorry, but I have bad news." I braced myself and would be lying if I said my first thought wasn't a combination of panic and the word"f#ck." Because it was.

Ren and I had just pulled into the Target parking lot to pick up things I needed for the trip, and before the nurse even told me what had happened, I knew my day was going to go sideways fast. (My motto isn't "Every day goes south in its own way." for nothing). 

Stow had gotten another concussion. This took me a minute to process. What did she mean? What did THIS mean? How could one kid be THAT unlucky? The nausea set in after I pressed for details. All she knew was that he was hit in the head in PE, but I could tell from the way she said it, that he wasn't hit in some kind of sport accident. I asked her to put Stow on the phone. Stow told me that another boy had hit him. I asked if it could have been an accident. He said, "No, he punched me in the head." 

Now, I can't tell you more than that about what happened because of a lot of reasons I can't go into.

Ren and I quickly finished our business and got to the school. Going in I told Ren I wasn't leaving until I talked to the principal or vice principal. We went to the nurse's office to find Stow, and the nurse told me the results of her concussion evaluation. Stow had all of the symptoms he'd just spent two months getting over--headache, sensitivity to light and sound, nausea, foggy thinking, and dizziness. He was terrified that the second concussion might cause permanent damage and cried when he recounted what happened. Heightened emotions are another sign of a concussion.

Ren and I waited with Stow through the end of the principals' lunch duties and a fire drill (!!  !!!!). Finally, maybe 45 minutes after we got there, the vice principal came to talk with us. I can't tell you what we discussed. I can tell you that Stow went home and to bed, and I talked to his primary care physician and then to the pediatric neurologist we now have as part of his extensive support team. They both told us to keep an eye on him and to put him back on concussion protocol. 

The next day, I flew to the conference that I just couldn't skip, and Stow missed school. He spent most of the next few days in the nurse's office trying to deal with the headaches, nausea, dizziness, and inability to concentrate. Over a week out, he still hasn't made it back to all of his classes. He had to drop out of the bowling team, and he has spent hours with therapists talking about what happened and how to deal with it. I have spent hours talking to various people about what to do.

*****

The day the he got the concussion, Stow was wearing a brand new pair of shoes. He hasn't put them on since. He says they are bad luck. The shoes are the thing that is most noticeable on the grainy video of the incident--the only way I could find him in the crowd of students. Now they sit in our garage, something he was so excited about and is now afraid to wear.

*****

Recently I shared this blog with someone interested in a parent's perspective on raising autistic children. As we have traveled on this path, I have become much more sensitive to my position in this whole thing. I am not a victim. My kids are not broken. They do not need to be fixed. But, and this is a HUGE but, being a "neurospicy" kid in an ablest world is tough. And, watching my kids struggle through this breaks my heart in ways I didn't even know it could be broken. 

Yesterday we saw the video of what happened, and it absolutely shattered me. The incident was hard enough to watch, but what happened after is what undid me. Stow looked so absolutely alone. I could see him at a loss for what to do, searching in vain for someone who might have seen what happened and who might be able help him.

It made me never want to let him leave my side ever again.

Their journey isn't about me. I get that. But, man.