school placement – Patrick Hoopes

Some big changes

It’s the beginning of a new era for the Hoopes Family. Our lives are filled with packing, cleaning and painting right now. Why? Well, because as of Monday, we own a new house. It’s about 20 minutes north of here in a quiet little neighborhood.

I can’t remember if, when I was writing about Patrick’s tonsils, I also wrote about his name having come up in the lottery for a special needs charter school. I was so buried in tonsillectomy recovery with my husband out of town that all I could think to do that week was complete the required paperwork.

Well, things settled down a bit and we decided we’d better figure out what needed to be done to know if we wanted Patrick to attend that school. I’ll be honest, my first impression was that I didn’t want to give up all of the great things I had going on right then and didn’t see any reason at all to move.

BUT I did follow through by setting up some school tours and meetings with the school principal. And, well, given the length of the drive (and the added complication of having to use the freeway for the commute,) I decided to look around the neighborhood in case Patrick did great at the school and we wanted to consider living closer.

Well, from that moment on, we just couldn’t seem to leave the investigation alone. A house caught our eye, we looked it up. Found flaws. Then another appeared. I couldn’t stop thinking about it so I drove out to see it. It wasn’t right. Nor was another. And we didn’t really think we were house shopping. Just getting to know the neighborhood.

Until… Brian spotted one nearby but NOT in the neighborhood we were looking at. We did a walk through and as we talked about it we could see so many great things for Patrick’s future in that house. A quieter neighborhood, proximity to parks, proximity to a great school, space for a bedroom downstairs and away from us when he gets older.. and the list went on and on. As we talked, I was filled with this sense of total peace.

So before we found an answer about the school and just 2 weeks after even discussing the possibility of moving, we put an offer on a house.

The rest has fallen into place very quickly. Through a ton of quick work, we cleaned up our house, did some staging, held and open house. And found a buyer. In fact, not just a buyer but one we’re really excited about selling the house to so we don’t feel quite as guilty for leaving. The financing came through in record time. The sale came through without a hitch.

And so by the end of this week, we’ll be moving. I’m not ready. It’s gone SO fast! And I’ve got just this week (one Brian’s working evenings in, even) to repaint the entire basement, finish packing, be present during Patrick’s last 2 weeks of school, tie up loose ends with PTA and church.. and be ready for the movers to come on Monday.

I am exhausted and I hurt everywhere. And there is so much still to do.

That brings me to another new thing in our family. Mostly, another new thing for me. Remember that post a few months back where I said that I just kept developing tendonitis everywhere as I tried to get in shape? And did I mention as I wrote about Patrick having EBV that we think I had it too?

I know I didn’t mention that at the end of November one morning I woke up and I just couldn’t walk. My knees were swollen and unsteady and it felt like I was ice skating. It took about 4 weeks to finally get to the point of doing cortisone injections which restored function pretty immediately. Except that things weren’t quite right. Not in my knees. Or my wrists or my elbows.

Well I finally got enough of a moment of quiet to go to the doctor who said, no, none of that is normal results of going from inactive to active. She ordered several blood tests looking for autoimmune diseases and other things.

And, well, one came back positive.

As it turns out, I have rheumatoid arthritis.

Our theory is that it was kind of there latently.. but when I started to exercise it brought it to the surface. And then, when I got sick (possibly with EBV) it triggered the auto-immune response.

RA is a lifelong, chronic illness with some pretty scary possible outcomes if left untreated.

The good news is, it’s one of the ones they are having success in treating. And we caught this quite early, we think.

So with immune suppressants, my new doctor thinks that he’ll be able to put the disease into remission and really minimize it’s effects.

It’s scary. The drug I am on is some very serious stuff. I’m now scheduled to have labs and follow up visits as often as Patrick is. This is a HUGE life change.

On the other hand, I’ve only given myself just one shot of the new medicine and it gave me 3 wonderful days with very little pain. The doctor said that in about 3 weeks it may be built up enough in my system to be considered remission. And it’s great to know that this hasn’t been all in my head, or because I was out of shape, or wimpy, or bad at taking care of myself.

And I’m thankfully so very busy with the move that I can’t really think too much about it right now.

It’s been such a whirlwind that it’s kept me, in part, from thinking too much about all the things that we’re leaving behind. I did lie awake fretting about that a lot at first. We really do have a beautiful home with wonderful neighbors. I’m going to miss my kitchen, my gardens, just being in the neighborhood of my family.. and most of all, I’m going to really miss my friends.

The only thing getting us through is this amazing peace that I feel whenever I drive out to our new home. The Lord is providing that in ample doses. And I know it’s where Patrick and we belong.

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.

Summer school and still planning for first grade

Well, as I mentioned in my last post, Patrick has started the extended school year program. Extended school year is a funny thing in our neck of the woods. I don’t know if it works like this everywhere, but Utah has such large families and our school district is one of the most established and biggest in the state so they are very efficient in what they do.. that, well, here you don’t get extended school year in your IEP unless you have a really darn good reason for it. I’ve tried in years past and was told that it really is reserved for children whose disabilities are so severe that they wouldn’t make much progress elsewhere.

I didn’t even imagine what that meant until this last week when I dropped Patrick off in his class. Patrick was placed in the amazing medical school in our district for the summer because he is still so newly post-transplant. Unlike the school that he’s been attending which serves children with medical needs but also the local community, Hartvigsen is a dedicated medical school for the district’s most severely disabled students. What an undertaking!

There are at least a dozen buses that bring students to this school. Their teachers and aides meet them and bring them to class. There may be fewer than a dozen crazy parents like me dropping their children off at school. (I prefer to do this anyway, but really had no choice if transplant medications were going to be given exactly as ordered and on time.) I was instructed to walk Patrick into his classroom. His teacher was excitedly waiting.

It’s possible he was the only student added to that class for the summer. He was also the only student who was verbal and not in a wheelchair.

I took a deep breath, a leap of faith, and kissed him goodbye.

Meanwhile, I headed over to the office for a meeting I’d scheduled with the district representative to talk about my concerns for his placement in 1st grade. The buses were late, so my meeting was late. And I got to sit and watch the students and teachers some into the school. And I saw Patrick come meet the office staff. He was very happy.

Now, about the meeting.. I know in my heart that he’s too behind right now to be comfortable just starting in a 1st grade class. But I also have just felt unsettled about the class they proposed putting him into.

So – we talked about it. She was amazing to listen to my concerns and express solutions. I told her that I am incredibly worried about him not being challenged if he’s only taught the goals that we come up with for an IEP. That he often surprises us by mastering things beyond the skills we think he’s stuck on. Sure, he’s struggling writing his name, for example, but I discovered that he can write about 60% of the rest of the alphabet with reasonable approximation.

I’m also very worried about him socially. I know that he behaves best, learns best, participates best and is happiest when he has friends. And so I’m worried that placing him in a class where he doesn’t have typical peers to socialize with.

And as I expressed these concerns, the woman I was meeting with mentioned that she wondered if he’d do better in a different self-contained classroom. They’d suggested that he be placed in a lower functioning classroom because of low IQ test scores. However, she said, there was another class where the students were closer to normal functioning, the class followed more of a typical class schedule, etc. She tried to describe the difference to me, and then offered to take me to tour the schools and classrooms (albeit without teachers or students) in a couple of days.

Tuesday, I had a much delayed appointment with the oral surgeon who helps keep me from grinding my teeth to bits and causing crippling migraines. So Wednesday was the next day I could. Meanwhile, Tuesday I happened into a couple of conversations that proved good reconnaissance on this issue.

For one thing, Patrick’s home hospital teacher, who he has clicked so well with and learned so well from, called to check in. When I mentioned the choice of classrooms, she didn’t falter. She said that hands down, the first placement we had been offered was too low-functioning for Patrick’s abilities. She offered to call around to some of her contacts in the district and then get back to me. And she did.. giving me some names and some specific behavioral strategies that she thought I should have put into Patrick’s IEP to help him. She hinted that she thought he should get into a typical classroom as quickly as possible, too, which made me falter a bit in my thinking.

Then, that evening, I had the chance to talk to a friend of mine whose son with autism is just finishing his 6th grade year in the higher of the two programs we had talked about. She only had good things to say about his experience at the school and we had a really good conversation about transitions and self-contained classrooms. It helped a ton.

I went into Wednesday morning pretty confident about what I wanted. We toured the lower classrooms first. The school was beautiful. I loved the layout of the classrooms. It’s only 5 minutes from home. And as we stood there, I told her that I was hearing from the teacher who has had the best results with Patrick that she didn’t think he belonged there.

Then we drove out to the other school. The one that sounded like the best fit. It was a long drive and kind of hidden in the middle of a windy-road subdivision. I didn’t love the classroom. At the second school, the self-contained classrooms are in portable classrooms, a.k.a. relocatables. The room seemed run down and bare. I could imagine Patrick cowering at the sound of rain on the roof. The classroom had steep aluminum steps and the nearest bathroom is inside the school building and I could just imagine Patrick having to go up and down them in the snow to go to the bathroom every couple of hours. The custodian was very helpful, answering questions about where the kids line up, where the buses arrive, and even the morning routine. He pointed out that they have a breakfast program where all the kids eat a district-provided lunch at their desks. Most parents would be thrilled. With food allergies and oral aversion and new transplant, I’ve been worried sick about lunch. Two meals at school, and one in the classroom, really bothered me.

I’d mention concerns, and my guide would do her best to offer accommodations they could offer to make things work. And I found myself saying, well, we’ll have to do this or that and make it work.

Still as we were leaving, my district representative asked me if I wanted to just start planning for Patrick to attend the more advanced classroom in the second school.. and I told her I needed to talk to my husband and Patrick’s therapist and get back to her.

I think I know that Patrick needs a higher functioning classroom. But I so wish that I could have him closer to home in a beautiful classroom in a school that used to be the medical hub so they are wonderful at medical inclusion. And I don’t know for sure what to do about these worries. Or if I can really do anything in the middle of summer.

They tell me we can move him if we pick one school and it doesn’t work. I hate the idea of him being continually bounced around.

Meanwhile, after a week in his extended school year classroom at Hartvigsen, the principal called my helpful district representative and asked me if I’d consider moving him into a higher functioning classroom. And when I picked Patrick up Wednesday, they brought me all of his school medical supplies again. He’ll be moving to a new classroom at the school immediately next door to Hartvigsen called Plymouth Elementary. They have one class there. It has 7 students of all grades. But I’ve seen them. (They were waiting for a late bus while I was waiting for my meeting Monday) and he will fit in better there. And learn better there. He keeps asking me if his new friends will have wheelchairs. And he’ll still get to swim on Wednesdays.

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.