It’s a quiet snowy afternoon and seems like time for an update. This is a busy week comparatively for us. With spring break over, Patrick’s back to a regular schedule with his home hospital school. In this district, they have assigned him a teacher for 2 hours a week. She comes one day a week on Tuesday afternoon and stays and works for 2 hours.
When I heard that schedule I was actually really upset. We had 3 hours a week scheduled as 3 one-hour sessions when we were in Nebraska. Patrick rarely stayed on task for the whole hour. We often didn’t get all 3 sessions in. And I really wondered if this schedule could possibly work.
I would never have expected how well this would work. Ms. Emily is a special education teacher in a “behavioral” classroom in another elementary school in the district. That means that it’s no longer just me with strategies to keep Patrick on task. His teacher is really good at finding a balance between pushing him to do hard things and finding ways to turn breaks into educational opportunities or “teaching play.” It’s teaching Patrick to ask for a break when he feels overwhelmed or frustrated and that is a skill that will go a long way for him.
I really worried about the long sessions, but she’s good at keeping a variety. Patrick earns the chance to play educational games on her iPad when when he completes more challenging work and that seems to make the time pass. (And gives us moments where she stops and teaches me ways to work on the same skills at home.)
I think the best thing, though, is that she is bringing me tools that actually are helping me to make good use of the time I spend teaching Patrick. Not that I wasn’t doing my best before. Thank goodness for the resources of the internet or Patrick would have been much further behind. But there is something to be said for materials prepared by a professional educator for your child’s needs.
For example, she brought me a stack of sight word flashcards. They are printed on goldenrod yellow paper which she says is the color our minds learn best reading from. Patrick was pretty resistant to these when she first used them to try to test his knowledge. But she started to plant the idea of sounding out words to him and pointed out a few sight words that he could use that skill on. Patrick and I sat down that week to run through the cards and before I knew it, Patrick was figuring out words by sounding them out, and asking me for more cards to work with.
He is practicing with about 20 sight words cards right now, most of which he’s mastered at a glance. As he gets good at these, we just add a few more in at a time and soon he’ll have that whole stack memorized. She added to that showing me how to use some touch prompts on his arm to help him sound out and blend words together and he’s really starting to be good at reading most any CVC word, new or not.
In the same session, she gave me a stack of worksheets that she’d cut out of a handwriting notebook. And two plastic page protectors. I really doubted this one… but as it turns out, Patrick is totally in love with this particular workbook. I looked online to just get a copy of it and it’s about $100 off the shelf. Basically, it’s pages where he practices tracing numbers. But it has just the right mix of activities that catches his interest. Trace a number 6 times and then practice drawing that many pictures of a totally simple object for a kid to draw, for example. Who knew Patrick would love drawing suns and balloons and candy canes? And on the other side? We practice counting and patterning. I really need to make it to a teaching supply store and get some tanagrams and counters to match the workbook.. But he doesn’t seem notice they’re missing so far.
This work has been reinforced by another little bonus this school district threw in. To honor Patrick’s IEP, they send an occupational therapist out to work with him for 20 minutes a week. 20 minute, again, sounds like nothing. I feel bad for the therapist who devotes 2 times as much driving as she spends teaching. But her support in handwriting and other fine motor activities has taught us a few helpful things like labeling the lines on Patrick’s page with sky, flowers and grass that help him fit his writing within the lines. And because the therapist comes from the school he used to attend, she brings along familiar things that he worked with before that really make him happy and willing to work.
The grand sum total of this is that instead of spending time hunting for curriculum for Patrick, I’m given tools to work with and all the time that I can fit in for school work is spent working and Patrick’s making good gains.
The more I see how things are being done right here, the more convinced I am that things were done very, very wrongly by Omaha Public Schools. Patrick’s teacher was a sweetheart who really meant well. But I’m certain that several of the rules governing special education were broken. I can tell you I certainly will do things differently if I ever have to work with that school district again.
The upside is that things are good here. It’s still a struggle. Patrick is a little bit TV addicted right now and he isn’t always happy when I pull him away to work. But only at first. He’s always happy once we get started.
And we especially struggle on the days that Patrick doesn’t feel as well. We finally finished the 2 week course of antibiotics. It is so nice to only have to get up to refill formula, not to wake up and stay awake to try to give antibiotics. It took a few days to get Patrick past the insomnia that giving him Benadryl every time he woke up was causing. But finally, the family is getting a little better sleep and that helps all of us do better.
Sadly, though, allergy season hit just as Patrick came off of the Benadryl. He had some hayfever symptoms those first couple of days. Or at least, that’s what we thought was going on. Two evenings ago, Patrick started to sound stuffy, too. By yesterday morning, he was sounding pretty congested. Of course, there was also this massive wind-storm that came through and I thought that was to blame. Then, overnight, it snowed. 6 inches. It has snowed all day today. And Patrick isn’t breathing better with the air cleared out.
We had an appointment with his GI and an intro appointment with the liver transplant clinic today, too. I took him, masked. And his doctor thinks this is likely a virus.. so far, he doesn’t think it’s anything overly concerning. (Though I guess we are watching in case his immune suppression causes a latent virus in his body to get worse. But they don’t think that’s it. It’s more likely he caught something over the weekend when we splurged a bit to spend time with family.) Anyway – so far, we are just supposed to keep a watchful eye. Patrick isn’t horribly sick or getting worse. He’s not running fevers. His oxygenation isn’t the best while he sleeps, but humidifiers seem to help with that. And he sounds pretty cute when his little voice gets croaky and cuts out.
Otherwise, it was a productive appointment. It is actually kind of comforting to know that Patrick’s been assigned a transplant nurse coordinator here in town who can get us a doctor quickly is Patrick needed things. They’ll also be watching Patrick’s weekly labs and making phone calls to doctors, the Nebraska transplant team, and us if anything looks off.
Dr. Jackson and I talked about getting orders in place for Patrick to be able to go back to school part-time. He needs to write a letter summarizing what Patrick’s medical and nursing needs will be as he goes back to school. So we talked about my goals and how what he wrote could help with those. He said would recommend for nursing support for Patrick because, as he put it, a multivisceral transplant makes him “one of the most complex patients in the valley.” I wonder how the district will interpret this. I’ve been trying to get an appointment to talk about and plan for Patrick to transition back to school and need this doctor’s letter first because the district trying to figure out what services he needs to attend school and where he’ll go that those can be offered.
Anyway – in brief summary, this is what the school year is looking at right now at our house.
With a lot of Bob the Builder in the background. Patrick rediscovered Bob the Builder this week. He is thrilled to find that he already owns Bob the Builder toys. He doesn’t remember this was his favorite show when he was 2.
I’m trying to figure out how to make Bob the Builder do math. Surely that would increase the incentive and willingness to work at it. Patrick hates math because counting is boring. (And hard in the midst of his ADHD and brain injury.)
Oh, P.S. As I cleaned off my car this morning, I was pretty sure that that much snow overnight would have shut down Nebraska school. Kudos to Utahns for being hard-core in all sorts of weather.
Patrick Hoopes 