Tag Archives: IEP

Transplant Day 290 and the Back to School Meeting

Today was insane. Brian and I woke up before Patrick, a rare occasion, and were lying in bed talking (we’ve missed each other) when the power went out. And then, a few minutes later we heard sirens. And, well, we hoped it wasn’t but we suspected that a car accident had knocked out the power. We live in a quiet neighborhood, but it’s near some busy streets. And this morning, somehow a traffic accident took down two power poles. Across the street form each other. The power was out all day.

Not the smoothest start, but we pushed on. It was a big and busy day and I needed to make the most of it. So, after sending Daddy off to work, Patrick and I got ready to go do a little more shopping. We still needed some things for school to start. And then we hurried home to meet my sister.

i ended up with 3 big things scheduled today. An allergist appointment, a school meeting, and a speech evaluation. My sister Marcy agreed to tag along for the day to help keep Patrick happy while I did the talking that needed to be done. Patrick doesn’t like us to talk about him.

Well, we got to the allergist and went to check in and they couldn’t find the appointment. Finally they looked it up and told me that it wasn’t until the following day. I explained that I had come at the time told to me and that I couldn’t come the next day because Patrick was in school. They tried to find a way to fit us in.. but with other meetings we couldn’t swing it.

I was disappointed because i really want help sorting out these new allergy test results. They revealed new allergies. They also hint that Patrick might be outgrowing his milk allergy. And I don’t know what comes next. But it had to wait for another day.

We went and grabbed lunch and then headed to a park. Patrick was seeming restless. But we sat down to eat only to discover that Arby’s had put cheese on Patrick’s roast beef sandwich. And with no answers from the allergist, I had to pick out the pieces he could eat. Frustrating.

Anyway – Patrick made a friend and the time at the park was fun enough. And then we went off to meet with the school.

I can’t really describe what school meetings for Patrick look like. This one was packed. We had the teacher, OT, PT, principal, nurse, district special education liason, and two other very big district big wigs over special accommodations in the school. Plus Patrick, me and Marcy.

As I mentioned before, I had talked to Patrick’s teacher and nurse the week before. The teacher and I talked at length about medical accommodations. She was very worried because Patrick needs extra supervision at recess, lunch, and especially with the potty and she just doesn’t have enough adults in her classroom to help with that. Especially since they added 5 kids to the class since last I’d heard. I told her I’d been promised extra help and she asked me how far I was willing to go to make that happen. I started writing e-mails that day. And I got promises that the district would send help to the meeting. (Enter the district big wigs.)

When I talked to the nurse, again, when we started talking about medical needs he said that it sounded like we didn’t have enough support. I told him that we had been promised extra help from an aide and I didn’t know how to make that happen. I gave him some names that I had of people who had made decision and promises. And he said he’d make some calls.

Yesterday morning, I got a call from the district nurse who was helping with Patrick’s school transition. She explained to met that, in fact, she had helped request an aide for Patrick and told me the language to use to make sure that one was provided. And she promised to call around and find specifics.

And so today we sat down and i started to go over Patrick’s needs and I brought up the concern that there wasn’t enough support in the classroom… and the district special resources person told the principal that they had 22 extra aide hours per week for Patrick. Her response was a mix of frustration and relief. Glad for the resources but not so much for needing to produce this extra employee for school to start the next morning.  I can’t blame her for being upset. I’m upset that it took a meeting when I’ve been asking about it for a month. But I’m also partly to blame for taking so long to choose a school.

We went over medical needs. The nurse was really outspoken and trying his best to help. We talked about where Patrick should sit and lunch. (End of the table with friends with safe lunches next to him.) We decided we needed to set a time to train the classroom staff. Only with school starting, he didn’t think we could fit that in right away.  We decided to let Patrick come 10 minutes late to school and miss breakfast. I explained that hands have to be washed with soap and water, not just hand sanitizer which created a fuss about the bathrooms always being out of soap. I offered to provide soap for the classroom. And the district rep jumped in and said I couldn’t do that and promised to remedy the situation.

We talked about potty training. That was one of the teacher’s biggest worries. I don’t blame her. It’s a huge time commitment. Especially with Patrick. I guess there are two kids potty training which makes things even more complicated. Also, the private bathroom I was excited about turns out to be in the school’s “sick room.” I was SO grateful when someone else spoke up and said that wouldn’t work. Not sure that we actually ended up with a resolution, though. They talked about making the school move the sick room. They talked about offering to install a changing table in the bathrooms that are being remodeled, too. We decided to let Patrick wear pull-ups to school while we work it out.

We planned to hold a new IEP meeting in October, once they’ve had a month to get to know Patrick. And we talked about including or re-including some new things at that time like restarting physical therapy and calling in the augmentative team to look at some assistive technology for writing.

And then, after we talked about everything that needs to be done.. the idea was thrown out that Patrick maybe would be better off if he didn’t start school tomorrow. I didn’t know if i was relieved or crushed by that idea. Really, they aren’t ready. Really, I’m not ready. I have felt like I have been only halfway there this year. Not put together. Not giving him time to transition after all the craziness of travel. And so a few more days will let me make his backpack and his lunchbox cute and medical friendly. It will let me train the staff. It will let them try to hire help. It might give me time to figure out this new allergy questions. And to get Patrick back into a routine with eating and potty. It will let Patrick and I have a few more days at home to say goodbye to each other. And to really get him ready for the idea of school.

But I’m kind of sad. It feels kind of like when you’re on a road trip and you finally make it to a rest stop only to find out that the bathroom is closed and you’re gonna have to cross the street to the gas station. It’s only a little further, but it’s the longest, hardest part of the wait. I look around and see so many things that have just been waiting for me to get to them. And they will need to keep waiting.

I feel really bad for Patrick, too. On Sunday, all the other kids will be talking about starting school. And he will have been left a home. Again. He will miss the craziness of the first day of school. But he’ll have missed the specialness of it, too. He’ll be the different kid. The one who came late. The new kid. Again.

They asked if I’d like to come teach the kids about his allergies and immune suppression. I told them about the presentation I gave last year at the start of kindergarten. And I could see they liked the idea. So on Friday afternoon, I’ll be going in to introduce Patrick to his class. And then afterwards, we’ll meet and go over a behavior plan and schedule.

And then Monday morning, he’ll start school. I’ll stay and help the nurse train the teachers. And I’ll maybe stay to help a little more than that if they don’t have another aide by then.

And I know it’ll be good.

I think I’m just a little bit mourning normal. I want back to school to be exciting and happy. This just feels complicated.

But maybe having a few more days to regroup will accomplish that. And meanwhile, we have one last week with the girl who’s been doing Patrick’s respite. And we have a few sweet days where all the kids are in school and we might be able to sneak off and do something awesome without a crowd.

Transplant day 215 and the School Placement Meeting

I find I procrastinate blogging when I am having a hard time processing something emotionally. I’m finding this subject hard to write about. This past week hard to write about. And I was kind of relieved by a brief outage in the blog that made it so I couldn’t write. But if I don’t get this down soon, then I won’t get past it to the things you want to know about. So here goes.

I’m behind in blogging and, given how much has happened, have decided to do some belated day-by-day catch-up. So in this post, you’ll be travelling back with me to June 3. The day of Patrick’s school transition meeting.

Actually, let’s back up to the day before it. On June 2, I took Patrick for his end-of-year kindergarten assessment. We got delayed leaving because it was also lab day and so we arrived with breakfast still in hand because we’d just made it. That’s ok. Patrick tests better when he’s eating.

I sat in the corner and read scriptures on my phone and half-listened. I actually feel like the test was pretty representative and that he did pretty well. It also pointed out to me how much he still struggles. He aced letters and letter sounds, starting sounds of words, and read a few sight words. When asked to write words, well, first he is only identifying parts of words. Second, writing is one of those things that his brain injury makes hard. His teacher pushed him to write starting sounds, which I was pleased with. And he showed her that he still knows pretty well. He struggled a bit with sounding out words, too. His speech delays get in the way there sometimes. But I thought he did pretty well, for him. He counted to 26, though he almost forgot 16. He counted 20 objects. And then he avoided the other math questions.

It felt like a pretty good representation of his abilities as I listened. And when it was done, his teacher kind of talked through the results with me. As expected, he’s better with literacy than math and writing is a big obstacle. She told me that she was worried that he was not going to do well in a writing-focused first grade classroom and I started to fear that I might need to think differently about what I was going to ask for in the placement meeting the next day.

Like I wrote before, the week before the nurse had given me a heads up that Patrick no longer qualifies for medical hub services and so he’d need a special exception to attend Whittier. That was my preference, though I wondered if there might be other better options I didn’t know about. I knew I didn’t think he wouldn’t do well in a typical first grade classroom in a school without support.  He is so far behind the rest of the kids in his kindergarten class after this year.

So, Wednesday morning rolled around. We were combining getting ready for our trip to Nebraska that evening with getting ready for this meeting. Brian tried to sneak in a work call and it seemed that we were going to be quite late. How we managed to find time to still go pick up Dunkin’ Donuts I don’t know. But I do know that I was on the brink of a panic attack when I’d imagined doing that and then didn’t think we could. I’m not so good with change.

Anyway, we dropped Patrick with my mom and then met with the team. At first, we went over Patrick’s current abilities. Strengths and weaknesses. Learning style. Kind of went around the table and his teachers and therapists talked about what he’d accomplished in the past month and where he still needs to go.

And then it was time to let the district representative go over placement options. She offered 3: 1) Repeating kindergarten, 2) A regular first-grade classroom with an aide, and 3) a self-contained classroom called a functional academic classroom.

We’ve talked about repeating kindergarten for quite some time now. When we got home from Nebraska, it seemed inevitable. But Patrick has made a lot of progress and he’s already one of the oldest in his class and this just didn’t seem like the right choice for him.

Then the principal explained why she didn’t think a regular classroom with an aide was a good placement choice. (Please note: the principal at Whittier is one of the kindest, most concerned administrators I’ve ever met. So when she shared this, it was full of empathy and a sincere thought in Patrick’s best interest.) She expressed concern that Patrick would get frustrated with being so far behind his peers. That he’d need a lot of pull-out time. And that having an aide hovering would feel limiting and restrictive to him. Patrick’s teacher had pointed out to me that he often stopped and tried to get her to give him answers or help in his test because he is so used to it.

Then they told us about the functional academic classroom. How it provided a smaller class size and lots more adult support so they can accommodate different learning styles. How the school is closer to our home. How it used to be a medical hub, too, so the environment there is accepting and inclusive. How amazing the teacher is. How they have often sent students there to see them thrive. How some of the IEP team also works there so we would have some familiar faces willing to advocate for him.

We also talked about placement at the school by our house. They gave me lots of pros to that, as well, but I knew it wasn’t right. That he’s not ready for that.

I knew as they talked about the other classroom that they were describing what will probably be the best place for him to learn. They reassured me that being pulled out in a self-contained classroom doesn’t have to be a long-term thing. That he might only need a couple of years to make up for what he’s missed.

But then, I started to imagine Patrick and the little friends in his classroom who have loved him so sincerely. How their faces light up when they see him. How they hold hands on the playground. And I started to cry. I HATE that I cry. But, as much as I know that academically this classroom will help him, I don’t want to see him lose that acceptance and friendship. And it is a total leap of faith. (One I am having a hard time making.) to believe that starting all over again in a new school isn’t going to set him back socially. Especially if he isn’t in a regular classroom. All the inclusive activities in the world aren’t the same as being in the same class.

And besides – it means giving up the amazing people at the school Patrick’s been attending. The familiar faces. The rockstar IEP team. The sensory room and PT gym. And my little oasis next door where I’ve been walking and studying and praying while he’s in school.

So – the meeting ran a bit longer because once I had tears on my face, they were trying to comfort and reassure me. Which made me feel stupid because I know my reaction is emotional. The logical part of my brain knows what’s best here. I’m already thinking of that as his new school. But I’ve got to find a way to make sure that all the i’s are dotted and the t’s crossed to send him there. And make sure that my fears don’t rub off on him.

And once the meeting was over, we sent Brian off to a meeting at work and I went and finished packing for Nebraska. And I was completely distracted all afternoon.  And we were up till 2 a.m. for reasons I’ll describe in the next post.

And I’ve stalled writing this blog post because I still feel conflicted and unresolved. And a bit guilty that I didn’t pull off more of a miracle keeping him up with his class. But here it is. And I’m gonna post this and start another right away.

 

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.

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.

Another IEP meeting behind us.

I feel like a huge weight has been taken off of my chest. Although we have always been very blessed with a caring and cooperative IEP time, hammering out an IEP that meets Patrick’s many needs is no small feat. And this year, with everyone on the IEP team, except the classroom teacher, being brand new to us, I was especially worried.

So I got dressed in my best “I’m competent” clothes, a change from my usual “I’m a special needs mom and you’re lucky I am dressed” wardrobe. I even put on makeup and did my hair. I packed a bag of toys for Patrick and brought along a stack of supporting documents for me. I stopped at the store and picked up some new puzzles for Patrick, even. Then went to Dunkin’ Donuts for goodies since the meeting was at lunch time and I wondered how at least the classroom teacher was going to manage to eat.

Then, as I was sitting waiting for Brian to meet me, I noticed that I’d mixed up my brand new jeans with an old pair of jeans with a hole in the crotch that I’d worn gardening last week. And I crossed my legs and shook it off because I couldn’t let that throw me today.

It seemed like this year’s IEP was all the more important than years past. Before, we were just making goals to help move forward his academic and developmental progress. This time we were dealing with new and worsening behavior problems as Patrick has become aware of his limitations. He wants with all his heart to fit in and make friends, and he just doesn’t have the skills and savvy to do it right. And so he’s taken to hitting, kicking, and pulling hair when he feels frustrated instead.

I had a feeling stress was building. But, I’ll be honest, I’ve been surprised and quite devastated that things got this hard this fast.

As the school year ended last year, I knew that impulsivity was getting to be more of a problem the more Patrick could do things for himself, but still couldn’t be independent. I asked his neurologist for help and he referred me to an amazing program designed to help children with developmental delays and behavioral issues.

But when I started down that path, insurance informed me that the program was through a non-contracted provider. They are a non-profit and we could maybe have made things work, but it was going to cost us more out of pocket than I expected. And, to make matters worse, their wait list was months long… all summer long in fact… just to get an evaluation.

My sweet insurance case manager felt so bad delivering this news that within a day, she’d called around and found a neuropsychologist who they contracted with who could squeeze Patrick in for some developmental testing. I had to fill out a mountain of paperwork. The questionnaire was over 50 pages long. Plus provide a medical/developmental history. (Another 50 pages at least). Then, Brian and I went in for an interview where we talked about all of the things that concerned us about Patrick’s development and behavior. Then it was Patrick’s turn. 4 hours of alternating standardized testing and play therapy and observation. In the end, we got a 25 page write up describing our child. His strengths. His weaknesses. His learning style.

In the end, Patrick was diagnosed as having many physical and cognitive delays stemming from his brain injury. (No surprise there.) And with ADHD. (Also no surprise, though really nice to give it a name we can work with.) The evaluation also included testing for autism and the doctor and Patrick’s therapists and I had a long drawn out series of conversations in which we discussed the way that Patrick’s brain injury sometimes makes him act like he is autistic (sensory processing disorder, social difficulty, quirky little obsessions).. but in the end decided that that diagnosis would only cloud and confuse things for him as it doesn’t exactly fit.

Armed with new diagnoses and 25 pages about how to help Patrick learn (with very specific examples of areas to teach him in), we supposedly had all the makings of a rockstar IEP.

Hence my anxiety over the past month in trying to get things just right. I’ve been e-mailing and talking to Patrick’s new special education teacher (this is an extra teacher who works with him in a regular classroom). I have felt like the super duper stubborn bad guy with my list of unreasonable demands. I really wondered if they were starting to hate me.

But today’s meeting was yet another IEP success. I feel like Patrick’s got a group of very astute and caring team of people working with him. And, in the end, they found a way to give Patrick just about everything we were asking for for him. In fact, a little bit more, even. Like a motor aid to help him in PE. And picture schedule cards for each type of activity in the class. And a more supportive chair for work table time. The occupational therapist offered to work with him on a sensory diet (meaning physical activities to meet his sensory needs throughout the day), which is virtually unheard of in IEP’s in Utah. And the speech therapist offered to build Patrick social stories with him as the main character on her iPad. And, as icing on the cake, they have a written behavioral plan in place for Patrick and are calling in a psychologist to consult and help Patrick learn to control his temper in class.

Of course, the trick now is finding practical ways to make it all work together.. But it is such a relief to feel like we’ve got our feet pointed in the right direction again.

And a big relief to be done with a crazy month of trying to see all the doctors and all the therapists and gather recommendations and write firm but kind “parent advocate” style e-mails that say what they need to, but then have to be trimmed down because, face it, I’m verbose. It will be a relief to be done rehearsing arguments about the IEP in my head all the time.

At least till next fall. Or maybe spring. Or maybe earlier, if things aren’t going quite as they should.

The Orange Rhino Challenge and a whole lot of stars

2013-10-03

Patrick loves school! He is so happy to be back. He is making new friends at a record pace, as well as happily meeting and playing with his old friends before and after school.

But, he’s also been really struggling since school started. At first, the reports were a few here and there coming from the classroom. Then one day, the special education came out to meet me and talk about the problem. Patrick has been growing increasingly aggressive. He’s not picking fights per say, but when he gets mad or feels ignored, he has been using his hands and feet to express his anger. And it’s been getting worse, spilling over into therapy and playdates and church and home.

I loved the conversation with the special ed teacher. (Note, this isn’t the regular classroom teacher. This is a teacher who visits the class a few times a week and, like everyone else, is new this year.) She said she’d heard that Patrick hadn’t had these problems last year in school and asked me if he’d been under any stress at home. I explained that during the first week of school, Patrick had had major, life-threatening medical issues and had needed to travel out of state for surgery. She said, “Well, I know about that. But other than that….” Yeah. She didn’t get it.

Then she asked me what helps at home. I tried to explain sensory processing disorder and how he needs a physical outlet for his energy or he can’t sit still, gets in trouble, gets embarrassed, gets mad, and hits. She told me he gets a regular sensory time once a day. Yeah. She didn’t get that either.

I left the conversation with two clear impressions. 1) Patrick was struggling at school and 2) I was going to need to come up with some answers to help him and/or a better way to communicate with the plan-makers at school because we weren’t going to make much progress otherwise.

I put a lot of thinking and reading and talking and praying into the problem over the next couple of weeks. And I watched as things got worse and worse. It was pretty clear to me that Patrick has been responding to the stress of having his life turned completely upside down… and then having to start school. Not only that, but school twice as many days a week as usual, and in a class that is much younger and more chaotic than last year. He’s feeling overwhelmed and he doesn’t have the words to express his feelings or stand up for himself. So, he’s doing the only thing he can figure out to do. He’s fighting back physically.

And then I remembered something I encountered a while back. An amazing woman who made a goal not to yell at her kids for a whole year, 365 days..  She blogged about the experience and is still blogging and running a Facebook support group to help other parent learn to discipline without yelling, too.

She calls the project The Orange Rhino challenge.

And I realized that I can’t expect Patrick to learn to deal with and express his anger and frustration and overall exhaustion with his situation in healthy ways if I haven’t learned to control my own temper.

But I just couldn’t seem to get there.

And then, a few days ago, I took Patrick to a checkup with his neurologist. We discussed the results of his recent neuropsychological evaluation (a topic that I swear one day I’ll tell you more about, but in a nutshell Patrick was diagnosed with several learning challenges, as well as ADHD) and how to help him learn to work through his attention issues at school, and he offered to have me talk to the department social worker about resources.

That conversation was a lot about how to create a behavioral plan in Patrick’s upcoming IEP. But one thing that stood out was that he suggested using a reward system to encourage the behavior we wanted instead of just punishing “naughty” behavior.

And I just couldn’t get the thought out of my head. Finally, it came to me. And yesterday, Patrick and I had a talk and made a deal. We both need to learn to be gentle when we feel angry. So, any time one of us is going through a hard time and feels mad and chooses to use soft hands and soft words instead, we get a sticker.

I stuck a sheet of foil star stickers in my pocket and away we went.

It was a rough start, with a tantrum first thing in the morning when he failed to earn a sticker by hitting when he didn’t want to take a bath. I thought maybe I was in over my head. But soon, we had our groove.

I took him to school with 3 stars on his head, gave a sheet of stickers to his teachers, and hoped for the best. I picked him up after school to find a dozen more stickers on his head. He was so proud of himself! His teachers reported an improvement, too.

So why am I telling you all this? Well, part of the plan of success with the Orange Rhino challenge is to tell people what you’re doing so that, if you’re feeling weak, you can call out for help. I’m two days in… we’ve had a few almost tantrums from both of us, but we’ve made it so far. It’s easier because we’re doing it together.

My goal isn’t necessarily a year of no yelling. But it is to earn as many sparkly star stickers as I possibly can each and every day.

To know more about the Orange Rhino Challenge, here’s a website: http://theorangerhino.com/