So, I haven’t posted here in quite some time. That’s not to say that there haven’t been interesting and insightful Koan stories to share, but I’ve discovered I’m nearing my personal capacity to relate them. Last summer, I started a new job — my first new job in nearly twenty years. While it was a really tough decision to leave my previous employer, my new gig has been everything I had hoped it would be and more. What it does not leave me with is a lot of time to tell all of the wonderful, fun, sad, and stupid Koan stories that he’s blessed us with since July. I do have some time today, thanks to the weather. So, here are some highlights from the end of 2018 and early 2019.
Jeri and I were more than a little concerned with Koan’s transition to start the school year. There was a ton of newness. We had to figure out a new respite schedule for before and after school. And, there was a new building with new teachers, staff, and lots of new kids. The team at Prairie Ridge did such an unbelievable job of meaningfully integrating Koan into the culture and day to day life. This doesn’t happen by chance and only comes from thoughtful and planful design work. I knew the teachers at Prairie Creek, Koan’s new school, would love him. That’s not one of his disabilities but rather a strength. But, I did worry about how he would be integrated and mesh with his peers and the rest of the school. It’s pretty easy to imagine scenarios where kids like Koan only see one room and one set of kids all day.
While I haven’t been able to visit Koan at Creek yet this year, the anecdotal evidence would suggest that things are going well. Certainly, and maybe most importantly, Koan still loves, loves, loves to go to school. I also underestimated how much the staff would connect with him. The new teachers are always sending via email and text fun, silly, and adorable picture of him. His new paraprofessional is awesome, too! They are almost spoiling him. Here’s what I mean — to start each day, they take off his shoes and socks and rub lotion on his lower legs and feet! I mean, really, who would not love to start the day off with a foot massage?… Jeri and I have a running joke that we are concerned that we are going meet the school bus on a Friday and he won’t be on it because Ms. Megan will have kept him for the weekend…
Probably the coolest thing that’s happened since Koan has been at Creek was a casual encounter at Target. As I’ve said before, Koan is kind of a rock star. When we go shopping at places like Target, people are always stopping to say hello. In this particular case, a girl (Koan’s age) and her mom stopped us to say “hi” to him. The young lady knew him pretty well. And, it was clear from Koan’s reaction that he knew her, too. Often with strangers, Koan will be coy and act shy –even though he is far from a reserved person. On this occasion, he made eye contact and cooed his friendly sounds. The girl turned to her mom, after talking to Koan for second and said something like, “This is Koan. I’ve told you about him! I get to eat lunch with him.” What caught my attention particularly was her use of the word “get”. Eating with Koan was not something she had to do, but something she was privileged to do. Incredible!
Not all the stories during this time are so much fun. The election in November was a profound disappointment to our family. We experienced the re-election of Governor Reynolds as a slap in the face. I think most people with disabilities and caregivers felt the same way. In a weak moment the morning after the results came in, I foolishly punched a very solid wicker basket. To my dismay (and embarrassment), my hand took the worst of this — several large cuts and significant bruising.
The reason for my frustration is this — largely, the continuation of the Reynolds administration means that privatized Medicaid will be around for the foreseeable future. This makes me very sad indeed. I would encourage everyone to continue to pressure the Reynolds administration on Iowa’s Medicaid system. This impacts all of us. Everyone is just one accident or mishap away from needing the services Medicaid provides. Being (mostly) eternally optimistic, I hope that with her election, Governor Reynolds could take a different policy path than her mentor. Time will tell.
On another terrible note, in December Koan had a significant injury. It was my fault… About a week before winter break was to start, I was giving Koan a bath. As I’ve said before, this is a favorite event — a high-point of the week for him. Koan splashes a lot in the tub. So, in order to stay dry(er), I sit outside the bathroom with the door open. On this particular day — a Sunday — I decided to multitask some of my evening chores while Koan was in the tub. I began to gather empty the various garbage pails around the house to prep for the garbage collection the following morning. When I came back through to empty the container in our bathroom, I noticed Koan had (not surprisingly) grabbed a wash cloth off the edge of the tub and pulled it into the water with him. That wasn’t a big deal, just a little more clean up for me later. As I got the last of the garbage around, I saw that Jeri was prepping Koan’s meals for the week.
This is something new for us. Since we now have both morning and afternoon respite help, we began to make all of his breakfasts and suppers for the week on Sunday afternoon. The reason we did this was we were concerned that our workers may not be giving him his medication — he gets a dose of anticonvulsant mixed in with breakfast and supper. In late October and early November he had an uptick in seizure activity — about three in four weeks. Since we’ve been doing the prep work on his meals, that (knock on wood) has stopped. In any event, this meal prep takes a good bit of work. Each breakfast requires two containers of yogurt, about a half of a cup of infant cereal, and his medication. Each supper is three yogurts, closer to a cup of cereal, and the medication. So, that’s 25 distinct containers of yogurt — about a laundry basket full of containers…
So, I decided to help Jeri get all of this done. I had left Koan in the bathroom for about five minutes — too long as it turns out… Just as I was opening the door to our garage to dump the laundry basket full of empty yogurt containers in the recycling bin, I heard Koan screaming from the bathroom. To be honest, I didn’t freak out. He is often very vocal in the tub because he’s having a good time. I was also far enough away that I could not discern if this was a happy or distressed sound. On my way to the back door, I asked Jeri to check on him — she was in our laundry room and could not hear him. I went out to start the process moving the trash and recycling to the curb.
In order to get the bins out of our garage, I need to back out one of the vehicles into the driveway. This time, I selected our van. Just as I was putting the van into park, I could see Jeri — looking very distressed — signaling me with both arms to get into the house. Of course, my first words to her were, “What happened?” She let me know Koan had burned himself. I ran into our bedroom. He was on our bed, screaming. From his waist down, all of his skin was bright red — a horrific moment.
While I was helping prepare the meals for the week, Koan had grabbed the washcloth that he pulled into the tub earlier and lobbed it up in the air. I’m guessing he was hoping for a splash. It landed over and around the hot water faucet. This is a circular faucet that Koan can not turn on his own. But, the washcloth was the perfect tool. As he pull the washcloth back into the the tub, because it was wrapped around the faucet, it turned the faucet on. Initially, I’m sure he was delighted. He loves to play in the water while it’s filling the tub. But, of course, this water was really, really hot. It still breaks my heart to think about this…
We cooled him down with wet towels and ice. He continued to scream. While we could see no initial blistering, it was hard to know the true severity of the burns. So, we decided to take him to the emergency room at St. Luke’s. We threw a diaper on him and a loose fitting tee-shirt. Then wrapped him in cool wet towels across the lower half of his body. Even in his agony, he figured out pretty quickly that we were going to take him for a drive. Of course, as soon as he figured that out, he stopped crying. In fact, I think that was the last time he cried about these injuries. He’s a tough kid.
At the ER, the team looked him over. The initial thought was to have us take him to the U of I for a consult. But, since he didn’t seem in distress, they backtracked on that. Everything below his waist was still red, but it looked better. We also noticed that his left forearm was really red, too. The doctor initially wanted to give him Fentanyl (a really strong opioid) to help him with pain. But, since he was in no apparent distress, they walked that back to a big dose of ibuprofen. Fortunately, the only part of his body that blistered was his forearm — and boy did that blister. His legs, feet, belly, and groin were all fine the next day. It took about three weeks for the forearm to heal fully.
The coda to this story, aside from the significant guilt I feel for leaving him unattended and letting this happen, is I now have a new worry. I’m so please that Koan was able to cope with the pain of this event so well. But, I now worry about what that might mean for him later in life. Will this high pain threshold and coping make it easier to mask abuse or neglect? This goes right to one of my most profound anxieties. What will happen to him when he leave our home? Like all significant problems, there are no easy answers to this one.
We can’t end this first post back on such a down note. So, here’s something a little lighter. Today I’m at home because my office is shut down due to the extremely cold weather. I’ve also started another ten-week session at Farrell’s. For those of you that don’t know about Farrell’s, their tagline is “Extreme Bodyshaping”. It’s 45 minutes of kickboxing and strength training six days a week. I’ve done it before. It sucks, but it’s really effective (at least for me). With my new job, my afternoons and evenings are often booked with meetings. So, I’ve elected to do my Farrell’s workouts at 5:00 AM. That way, I can be back in time to assist with our morning routine with Koan. We lost our morning worker in November. I knew today was a weather day, but I didn’t want to break routine. I rolled out of bed at 4:30 to get ready. The gym is only about a mile from my house. So, I threw on my shorts, socks, and a sweatshirt. Still in the dark, because I didn’t want to wake Jeri, I tripped over a laundry basket of clean clothes, barking my shin then and made my way to the car. The air temperature this morning was -25 and with the strong northwest wind, the windchill was somewhere around -60. With my teeth chattering, I rolled out of the drive and off to Farrell’s. As I approached the gym, I saw it was dark. They had apparently closed. As it turns out, the notification had come to my personal Gmail account and been routed to the “promotions” inbox instead of my primary inbox. I was actually relieved. It was a kickboxing day. I hate kickboxing.
When I got home, I noticed that the garage door had not shut. At first, I thought I had neglected to close it in my sleep-deprived, near freezing coma. But, once I got in the garage, I discovered that some snow, ice, or other debris was tricking the door sensor into lifting again just as it closes. I’m not sure if anyone else has this problem with garage doors, but it’s the bane of my existence. I got of of the Civic and felt a blast of the wind. I decided right there I was not going to fight with sensors — do the “guess and check” to see if I could get them not to believe there was something blocking the door. I just reached up and grabbed the door release (disengaging the door lift drive) and manually pull the garage door down. I then walk straight to our bedroom — again tripping on the same laundry basket (it was still very dark) and climbed into my still warm bed.
About an hour later, I could hear Koan playing with one of his toys through the monitor. About ten minutes after that, he started to do his “car alarm” sound — repeated loud yips. I rolled out of bed, again, to get him up and dress. Jeri had been getting up with him all week, so it was my turn. The rest of the morning went along uneventfully. Farrell’s was opening at 8:45 AM. I decided to get it out the way and do it as early as I could. I got ready to go around 8:20, but could not find my keys — more precisely my key fob. I was not totally awake when I came back in the house earlier and I wasn’t sure what I did with my keys. I borrowed Jeri’s set so I could make class.
As I was driving to class, I realized that the Civic had not unlocked when I grabbed the door handle. The car will automatically lock when the fob is more than 20 feet away. I then had a sinking feeling. What if in my half-awake state earlier, I had set the fob somewhere on the Civic before reaching for the garage door release…? The only way to know for sure would be when I got back to the house after class. If the car automatically locks (meaning no fob is within 20 feet) then that would mean in all likelihood I had lost my keys somewhere on the way to Farrell’s in -20 weather…
When I got back from class, as I feared, the car locked as I approached the back door. I let Jeri know what happened and I threw on some additional layers to see if the keys were in the driveway or near the house. They were not. That was several hundred dollars down the drain — fobs for both the Civic and the van. I was bummed. Meanwhile, Koan was still coming to terms that the school bus was not coming for him today. He was not happy. It’s kind of funny — Jeri pointed this out to me just yesterday. When Koan is frustrated by this sort of thing, he gets vocal. He starts a babbling sound that clearly goes from a conversational tone, to frustrated, to angry, then back to normal. It’s strangely cyclical. And, like many boys of his age, when he’s frustrated, he gets a little destructive.
He had been spending his morning, while I was kickboxing, yelling at his mother and scooting in and out of our bedroom. We keep Little Baby Bum, Koan’s favorite Netflix offering, running continuously on the TV in our room on days like today. While in our room, again, being frustrated, he was doing his best to “toss the room.” He had pulled some books off the shelves and dumped and distributed the clean laundry I had tripped over both coming and going to bed. We had let him do this to feel some sense of agency or maybe Jeri and I were just being lazy. Once he was done with this particular cycle of unhappiness, I decided to finally clean up and take a shower. As I walked back through the bedroom, I saw — low and behold — my key fobs were in the middle of the room! Koan had found my keys!
I think what had happened was upon my return from Farrell’s and my second tripping on the laundry basket, my keys slipped from my sweatshirt pocket into the basket. I would have eventually found them, of course. I don’t know what things are like in other houses, but sometimes a basket of clean cloths can stay in that basket for a few days. So, Koan’s tantrum had put the keys right in my line of site. So, I guess, this is just another one of his many mixed-blessings!