IEP

It's been more than a month since Teddy's IEP, and I'm finally getting to recap it. His IEP is his individualized education plan, designed to support his needs, which requires meeting with his entire team at least once a year.

This IEP came at a perfect time, as it was shortly after his most recent bite from a fellow classmate, so we focused primarily on his safety at school as well as his integration with his 5th grade peers. 

It was a full house for this IEP, with more people than any other time, even though we were a person short because Dave stayed home with a sick Teddy. (In an ideal world, Teddy would be a part of his IEP meetings to have his voice heard, but that's less than conducive. Trust me. I've tried it.) Given the issues we've been having, the principal joined the meeting, along with a student teacher there for the experience. Then it was the usual crew: his intentional teacher, his 5th grade teacher, adapted PE, OT, PT, speech, nurse, assistive technology and the special education team member. Let's just say I asked for introductions to refresh my memory as I only see nursing and assistive technology once a year, and it's a lot to keep track of. 

I was pleasantly surprised with how the IEP started, as the team proposed a schedule that goes from about 20-40 minutes a day of inclusion to about 2.5 hours of integration. There was only one other opportunity for integration that I raised (thanks to my conversations with his 4th grade teacher, who happens to know him extremely well, about what might work). Instead of only morning meeting and music class, Teddy's new schedule includes breakfast, morning meeting, snack, social studies/science, lunch, recess, music, art and the occasional gym class. 

All smiles for the first lunch in the lunchroom with 5th grade!

Whew, that's almost exhausting to type, much less to be the paraprofessional supporting Teddy in all this integration. I know it's work to help Teddy integrate, and it won't be perfect. It won't work every day and every situation as planned. But the more time he spends with his 5th grade peers, the more he will model their appropriate social behaviors. He proved this last year by learning to raise his hand at appropriate times because everyone else was. The more time he spends in his intentional classroom with behaviors that aren't appropriate, the more likely he is to mimic those behaviors. Additionally, and most importantly to us, he doesn't get hurt in the 5th grade classroom whereas he's targeted in his classroom. (To be fair, he's targeted because he has no personal space bubble and doesn't feel others do either.) 

It's been an adjustment to spend that much time transitioning, but it's been neat to see how excited Teddy was to spend more time in 5th grade. I'm not sure if gym has happened yet, but that was a neat bonus that his adapted PE teacher wanted to try without being aware of the rest of the integration discussion. This is particularly cool because it was initiated because Teddy has made so much progress in his skills (both physical and social) that his teacher feels like he could be successful in certain lessons. 

Needless to say, we appreciate all the work his team puts in to make Teddy successful. It takes a village to support Teddy.  We showed our appreciation by bringing them lunch for the first day back at school - subs, chips and brownies, homemade, of course. And how many people did we feed? A village of 17.

Plus a brownie his team gave Teddy because he asked so clearly and nicely. 

One Heck of a First Day

Summer vacation is here! 

And Teddy had one doozy of a first day. 

The poor kid started his summer vacation with allergy testing. I anticipated this would be horrible, tears, physically restraining him and more medical trauma. So I recruited a friend to help me because Dave couldn't get out of work. It went so much better than anticipated with no tears, minimal restraints and only 3 positive allergies. (That probably contributes to why there was only minimal restraints to keep him from scratching.) We have a game plan to better treat his allergies and a follow up appointment to continue testing to rule out one of his two remaining antibiotic allergies listed in his medical chart. That will be nice to open the door to more antibiotics to treat all the crud he catches.

Then in the afternoon, he wanted to help me unload cinder blocks and didn't realize how heavy they were. His block he insisted on grabbing fell straight down his shin, scraping and bruising it. Still no tears because he's a tough cookie, but ouch!

The finale to the day was after a great bike ride with myTEAM Triumph. Teddy has now mastered the skill of unbuckling from the race chairs (great, but oh no!) and took off running. He fell off the sidewalk and face planted onto the curb. That resulted in a couple more scrapes, a bruised and cut lip and the real kicker ... 2 front teeth chipped significantly. Guess what, though? Still no tears from Teddy although you could tell he definitely felt the pain. AJ, on the other hand, felt responsible because he was trying to catch Teddy, and he cried for almost 2 hours. He has such a big heart.

His new nickname is Toothless from How to Train Your Dragon.

So, needless to say, on Teddy's second day of summer vacation, he went to the dentist. That was uneventful because they need to wait until the swelling is down before they try to seal/cap them. I don't anticipate that appointment will be so uneventful (or even successful), but I guess we'll find out in July!

Now, if the rest of summer break could be fun and we don't actually break anything else, that would be great!

5 People

Five people.

That's how many adults it took to restrain Teddy while the poor nurse practitioner put 5 stitches in his chin. I think that was everyone working on urgent care on Christmas morning.

Nice chin gash on top of his prior chin scars.

And then later that week, he fell while playing near the treadmill. AJ, Dave and I all arrived at the same time to find him in a pool of blood. At first we thought he perhaps had cracked his chin early, but the stiches held. Instead, he had built nearly through his tongue.

In case you don't know, tongues bleed a lot. (All head wounds do.) But tongues heal remarkably well. We know this from prior experience since Teddy jammed a plastic hanger nearly all the way through his tongue a few years ago. We took him to urgent care for that, who looked at it and promptly sent him to the ER. ER looked at it and said, "Eh, it'll heal." 

Since this wasn't nearly as bad as the coat hanger incident, I wasn't too concerned. I still did call the nurse line to discuss the situation. I said that if they wanted a peek at it, they'd be able to see it when we came back to get his stitches out. *Insert facepalm emoji here.*

Moral of the story? I'm not sure. Heads bleed. It takes a lot of people to restrain Teddy. We're stellar parents. 

The Day The School Called Three Times

Last Friday I got a call pretty early in the school day from Teddy's school nurse. I was a bit skeptical because the last time she called, the school's policy involved sending Teddy home because of a rash on his face of unknown origin. ( We worked through that situation without Teddy coming home, as the school is new to Teddy and not familiar with the breakdown that frequently occurs on his face due to his drooling.) This time she was informing me of an injury that involved Teddy smacking his face into a door frame. 

Since she said he seemed completely back to his usual demeanor and not affected by the incident, I told her that an ice pack wasn't necessary unless it was a really significant injury because he has no interest in them. She said that he tolerated one for about 30 seconds, but his teacher had it with him as he continued on with his day.

So I was a bit surprised when the nurse called me again around lunch. She had given Teddy his medicine he gets with lunch and wanted to update me that it looked more like a scratch. I said OK and laughed to myself when we hung up the phone. Seriously, if I called someone every time Teddy got a bump or bruise ... 

And then Teddy came home.

Teddy a.k.a. Scarface

Well, I understood why the nurse called me twice. He looked pretty rough, but of course he was all smiles. 

Teddy's teacher had asked me to call her to discuss the incident. It turns out that Teddy thought he should go to gym instead of his classroom when he arrived at school. So he made a beeline for the gym, probably laughing and running because he knew he was doing something he shouldn't. It was all fun and games until he ran straight into the corner of the door frame. I think the real reason his teacher wanted to talk was to apologize and tell me how terrible she felt. I did my best to reassure her, although I'm not sure that telling her that I smashed Teddy's hand in the door earlier in the week was reassuring ... but it does prove the point that accidents happen frequently with Teddy. 

On the bright side, I don't think I've heard from AJ's school nurse once yet this year. And, honestly, Teddy's school nurse can call me every day this year as long as it's not to inform me that Teddy's had a seizure. 

Doctor's Visits Galore

Let's just say that if there was a prize for most doctor's visits or amount of time spent at and/or commuting to doctor's visits for a 28-hour period, Teddy and I would have been strong contenders.

It all started Thursday morning when I decided to try on one of three shirts I was considering donating. Somehow, in the amount of time it took me to pull on one shirt, Teddy hurt himself with a smooth, rounded plastic coat hanger. My first clue was him crying. My second clue was his mouth filling with blood. There was so much blood in his mouth that he couldn't swallow while screaming hysterically. In fact, when he coughed on the blood, my face got splattered with blood.

It took me a half hour of wiping blood away, consoling him and attempting to peer in his mouth with a flashlight to figure out where the injury was. My best guess is that he stuck a coat hanger in his mouth, fell or dropped to the floor and pierced the bottom of his tongue by jamming that hanger into it. The injury didn't go completely through, but I got a glimpse finally of a wicked looking wound that prompted me to head right to the walk-in clinic.

The walk-in clinic took one look at his tongue and said that something needed to be done, but they couldn't do it there. So they walked us down to the Emergency Room. This was our first time back at the ER since the horrible seizure incident in December, so it's not exactly where I wanted to be. Neither did Teddy. Between the pain and the fear of doctor's offices/procedure rooms, he was crying the entire time despite being snuggled by a carrier to the front of my body. (Umm, can I get a gold star for managing to get him loaded on my front and hooking the back by myself 3 times in 1 hour? That's a record for me.)

The ER doctor took one, quick (not quite sure he saw everything) look and said it would heal itself. He said he could put in a stitch, but that would require sedation and would likely be chewed out within minutes. I was fine with that and figured Teddy would settle down pretty quickly once we left.

But he didn't.

Thankfully Dave came home early from work and then spent all afternoon at home while Teddy cried, whimpered, napped for 30 minutes and cried some more. He finally settled down after supper (without eating or drinking much because of the pain). Let's just say it was a long day from 10:30 a.m. when the injury happened until I collapsed into bed at 9 p.m.

Unfortunately, the pain medicine wore off, so Teddy was crying in pain at 3:30 a.m. That meant that all of us, including AJ, were wide awake by 4 a.m. Teddy settled down about 30 minutes after his medicine kicked in, but no one got any more sleep.

Teddy and I took off at 6 a.m. to head to Milwaukee for a couple doctor's appointments. The first was his ENT, which was extremely quick as usual. We'll be getting a call within a week to schedule surgery to remove his adenoids the end of March/beginning of April. This is a good thing in our minds. It should hopefully minimize ear infections and reduce his chronic runny nose.

We enjoyed a bit of time with my aunt before we headed to his physiatrist appointment. This was one of the recommendations from NIH, and I wasn't sure what to expect. I was pleasantly surprised because the person was fantastic with Teddy and spent 1.5 hours getting a really detailed history, observing Teddy's motions and body and discussing recommendations. She's coordinating with the person who does Teddy's braces to adjust them slightly to give him more toe mobility to help with balance, but she doesn't think we need to pursue different (taller) braces. She said we can discontinue the use of his SPIO compression garments once he outgrows the current pair as they tend to provide minimal assistance once he reaches this size. She's also going to put in orders for outpatient PT and speech therapy and coordinate with them about pursuing therapy now and then for the summer.

In case you haven't gathered, a physiatrist is a doctor of physical rehabilitation who coordinates therapies and adapted equipment. We had never heard of that type of specialist before NIH, but I'm excited to have someone to coordinate all his therapy between outpatient and at school as well as all his adapted equipment. I think this will be a good thing for us, and it will likely be paired in the future with a neurodevelopmental psychologist to help understand how to best motivate Teddy to work toward progress. That'll happen this summer, at the earliest, since it will be a series of lengthy appointments to really get to know Teddy. The physiatrist will look the report we get from NIH once we get it and see if it's sufficient. My guess is that it won't be as thorough as desired, so we'll probably go through the process. The appointments should be mostly play based, which really shouldn't be bad. It's just that we need some time between the week of NIH testing and any more extended testing appointments.

After that, we had our drive back home, getting home at 2 p.m. with a full 8 hours of travel and doctors' appointments. Now, where's our medal?

Teddy's First School Nurse Visit of the Year

I'm sure this won't be the only visit to the school nurse for him, but I hope it's the only one that I cause. Wait, that sounds wrong. I didn't cause Teddy's injury, but I did send him to school with a huge bump and fresh blood.

Around 11, as I was opening the fridge to get Teddy lunch, he fell onto the metal track of the sliding glass door. I'm not sure what specifically caused him to fall because ... again ... I was opening the fridge. He started crying, so I scooped him up, took a quick peak at his noggin and took him onto the deck to let his crying scare the geese out of our yard. (I don't like them pooping everywhere.) Being outside worked it's magic right away on Teddy, so he was over his injury within a minute or two and I still had geese in my yard.

When I set Teddy down to try this lunch thing again, that's when I noticed my  hand was red. He had about a 3/4-inch cut on his head, which hadn't started bleeding when I first looked. Thankfully, it wasn't gushing blood, so I was able to clean it with a clean cloth, rub on some antibiotic ointment and continue with lunch. I also gave him some Tylenol because that would hurt my head.

Fast forward 40 minutes to getting on the bus, and his head looked horrible. I felt guilty sending him, but he wasn't bleeding, he was acting completely normal and he would have been one unhappy kiddo if that bus passed by without him getting onto it. I did send a note to explain what happened to his teacher (and, of course, that was the one day that somehow his backpack never made it off the bus to go into school). I also called her to let her know that if the school nurse looked at it and felt it needed further attention, that I'd come pick him up.

I also called our doctor's office just to confirm there was nothing else I should have done ... as soon as he climbed on the bus. (Hey, there's only so many minutes before the bus arrives. Food and a clean diaper are pretty important.)

And that's his first school nurse visit. AJ's already racked up two, so Teddy maybe feels he needs to catch up.