Tag Archives: kindergarten

Goodbye to kindergarten and the beginning of change

Today was Patrick’s last day of kindergarten. It was over almost as soon as it began. I think it finally sunk into him this morning what I was saying because he was very worried as he got ready. Worried about missing his friends and worried about there not even being familiar teachers in summer school. To help with a little closure, I did a quick google search and found some printable thank you notes he could color for his teacher and aide. And then we were off.

I don’t know much about his day, except that he came out laden with gifts. His special education teacher came out with him at the end, too, which I thought was very thoughtful of her. He was given the “jolly rancher” award for always being so happy. And we had to linger a little bit at the park by the school to let him finish a popsicle he’d been given. Then, we met Brian downtown where we went out to lunch to celebrate the occasion.

It hardly seems real, except that getting Patrick needs several bags of supplies and safe snacks for school and all of that is in my kitchen now.

The last day of kindergarten represents the kickoff of a very big transition week for us. In less than a week, Patrick will have his broviac line removed. I am counting down the end of a week’s worth of those supplies in amazement and a bit of fear.

I’ve had some horrible dreams this week. I dreamed that Brian was on TPN, only it wasn’t available and his blood sugar was crashing. I dreamed I had a line that needed changed to a port and I felt so helpless and out of control trying to convince the nurses in the hospital to follow the pre-op directions I’d been given about my medications. It made me realize just how Patrick must feel, which was kind of crushing. Then I dreamed that Patrick was in surgery for his line but 5 hours had passed. That is really REALLY bad for that kind of procedure and brought back some horrible memories. Have I mentioned that it’s common for patients and caregivers dealing with this chronic illness, especially transplant, to suffer from a form of PTSD?

I’m just trying to push forward and take care of what needs to be done to get ready for what’s coming in the next couple of weeks. It is hard to keep them in the right order when new things keep needing my attention.

For example, yesterday I dropped Patrick off at school and ran to Walmart. The goal was to pick up a fruit for dinner and some entertainment for the plane ride to Nebraska. But as I headed to the checkout, my cell phone rang. It was the district nurse calling to give me a heads up that a group of district nurses had met to review the medical needs of students for the upcoming school year. And they had determined that Patrick no longer requires full-time nursing at school.

This is great news. He’ll still have an aide to help him with his many needs during the day. But it’s kind of bad news, too. It means that he no longer has to attend the medical hub school that he’s attending. And they wanted me to tell them where I want him to attend next year.

That’s not exactly a simple question. The school next to our house is quite small and not really given a lot of resources. Sending Patrick there would be very complicated and require bringing in a small army of people to work with him. I think we’ll be asking for an exception to be granted and for him to be able to continue at Whittier, at least for one more year.

It also means that I need to add making a list of care that an aide needs to be able to provide to Patrick, independent of a nurse. By Wednesday, when we’ll meet to also work on revising his IEP to get him through till the next IEP meeting.

In addition to that, Monday Patrick and I will meet with Patrick’s favorite Child Life specialist to help to teach him about having a port. On Tuesday, he’ll have his end of year kindergarten assessment. I’ve got to get orders for supplies for Patrick’s port ordered and delivered before we leave, and prescription refills ordered before we leave.

And in the midst of all of this, our church responsibilities have us pretty busy this weekend. Especially for Brian.

This is just the beginning for this summer and I’m having a hard time wrapping my mind around all of it.

But at least one thing is under our belt. Patrick’s a kindergarten alum. Now if we can just get him caught up a bit over the summer and make the right school plans for next year.

I’m also coming to the realization that summer is coming and that, in the past, I’ve been an amazing mom in the summer with lots of plans for fun and education. I am nowhere near that prepared this year. I am just trying to get through the next couple of weeks. But my mind is starting to hatch some plans and I hope I can make some of our traditional summer magic.

Kindergarten Take 2

Yesterday, Patrick went back to school. As I said before, to help protect him and ease the transition, he’s only going to attend school part-time for the rest of this school year.

So, yesterday we headed out about 10 a.m. We stopped at the grocery store on our way to get snacks for the classroom. (Since they are instructed not to feed him anything not parent-provided or approved.) Then, since we’d had a little mishap with Patrick’s g-tube coming disconnected during the night and feeding his stuffed animals instead of him, we swung by McDonalds to get him some french fries to tide him over.

Finally, it was time to go into school. We checked in at the office. Because he’ll arrive late every day, we will check in every day. And then we headed over to the resource classroom.

His special education teacher had a little Patrick height banner in the door welcoming him back to school. It was fairly adorable and made him feel really special. While he worked with her, I sat down with his new aide to give her a little crash course on his needs.

Then, we headed over to the classroom. As we walked down the hall, a little voice shouted out, “That’s Patrick!” Followed by a little chorus of excited friends announcing “Patrick’s back!’

We were a touch earlier to Patrick’s class than he’d been expected and so we waited at the door while they cleaned up centers. All the while, little friends would sneak away to come hug him and welcome him back. Patrick was dying to go help clean up, but was obedient and waited.

Finally, they gathered at the rug and I sat down to tell them about where Patrick had been. I explained that the doctors had found a new belly for Patrick. That he’d had a transplant, which means that they took the old belly out and put in a new one. One voice chimed in, “I bet that hurt!” And I answered honestly that it did hurt. A lot! Then, I explained that Patrick doesn’t need his IV tubes anymore and is learning to eat and he told them how excited he is to be back at school with them.

We talked about washing hands and being careful about germs. Patrick’s best friend asked if having a cough meant they couldn’t sit together. So we talked about catching your coughs in your elbow.

The feeling in the room was pure excitement. I am so glad that Patrick was able to go back to this class that has so willingly accepted him and embraced him for who he is.

I left Patrick and went to talk to the school nurses and to clean out the supplies that Patrick doesn’t need anymore. And then, before I knew it, it was time to go. And hour is going to go very quickly.

Patrick’s first preschool teacher was waiting to greet him as he came out of school.

This is going to be a different phase for us. Patrick was so excited when he got home that it took a long time to get him settled to nap. When he got up, there was barely time to get dinner made.  And then, because he napped late and because he was excited, he didn’t sleep again until almost midnight last night.

Short school days at a school far from home means that it doesn’t make sense for me to come home while he’s in class. I’m planning to use that time to start walking and hopefully get myself in shape a little bit.

But, it also means a minimum of an hour and a half of what used to be my most productive time of day that I don’t have anymore. And it’s going to take some adjustment for all of us to learn to get things done with this new schedule.

Tuesday especially are going to be difficult. My own version of Monday. Because they start with a nurse visit, then school, the Patrick’s home hospital teacher will still come in the afternoon.

But we’ll get there. It’s only a month of school and I can tell you, by the joy in Patrick’s face when he got up this morning, that it is worth trying to make it work. At least, if we can keep him healthy enough.

Transplant Day 180 and School

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This picture was taken 6 months ago at Pumpkin and Mustache Day in Patrick’s kindergarten class. I didn’t know it then, but the Halloween parade and party the next day would also be his last day of school.

6 months ago, I tucked him into bed and then I went and wrapped up his birthday presents and I went to bed, but before I fell asleep my phone rang and our lives changed forever.

I dare say, at least as far as I can judge right now, for the better.

Today, I had an IEP meeting with Patrick’s school. Can I tell you what an amazing school he is in? They were completely behind me asking for a slow transition back into regular school. In fact, they were good with just about everything I asked them to consider. This meeting was amazing!

Here’s the gist of things. There is a month left of school and Patrick’s immune suppression goals have been adjusted down because it’s been long enough since transplant to try. And the transplant team said that about this time we ought to consider starting to ease him back into the normal life that they did the transplant to hopefully give to him.

So, after a very thorough discussion today, the decision was made to start letting Patrick attend school for an hour each school day. He’ll attend the last hour of every day. He’ll spend the first half of that time working with a special education teacher to help him to make up as much ground as possible. And then he’ll spend the last half of the day with his kindergarten class so that he can work on relearning the classroom routine and social skills. Also, once a week, I’ll bring him in a little early so that he can spend time in occupational therapy as well rebuilding his strength, working on writing and other fine motor skills, practicing eating, and so forth.

Because he’ll only be in school part time, he’ll also still qualify to work with his in-home teacher.

And, when the school year is done, he’ll take a short break, and then get to participate in the extended school year (or summer school) program this year at another medical school that is actually even a bit closer to our home.

The mood in this meeting was so positive. I genuinely believe that this team is happy that Patrick gets to come back to school and eager to help him succeed in every way that they can. How many people come out of an IEP meeting saying that?

That doesn’t mean that his IEP meetings aren’t still intense. There is a lot to coordinate and I am constantly amazed at the efficiency with which they run these meetings. (Also, with their stamina to do so many back to back to back at this time of year. They had already done several that morning with several more to go.) We made plans for how to drop Patrick off and what to do if classmates are sick and an aide to be with him in the classroom and what physical activities he can participate in and what to do when he needs to stay home and how to make sure that he gets the absolute most bang for the buck out of his hour a day at school.

For the rest of this school year, they’ll be reimplementing the amazing IEP that they wrote for him the week of his transplant. Then we will reconvene in a month to figure out where he is on his goals and what the best plan for school next fall will be.

The most amazing part? I thought we’d be waiting a week or two more for medication changes but the team in Nebraska says that because he kept swinging too high, they brought his dose down and he’s already there. That doesn’t mean he’s not immunocompromised. But this is about the best it’s gonna get for a while and so we might as well let him live.

We are taking the next few days as a family to celebrate Patrick’s 6 month transplantiversary and half-birthday (because, face it, transplant is an awesome birthday gift but a sucky birthday party.)

And then on Monday, Patrick starts school.

I’m trying to wrap my mind around gathering all of the supplies, emergency plans, paperwork and other little details I need to have ready by Monday at 10:45 a.m. I’m hoping this is as good of an idea as it sounds. That he has the strength. That he can stay healthy.

It’s strange to think that a month ago, I answered a phone call and our lives stopped and reset.

And now, 6 months later..to the day.. we’re trying to kickstart life again.

Patrick is bouncing off the walls excited.

Kindergarten – untraditionally

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.