Life Keeps Us Busy

Life always seems to be busy, which is why there's some time between posts. Let's see what updates I have from the past several weeks ...

Broken Toe/Foot This healed well, thankfully! He got the all clear to spend some time barefoot at his final checkup. We were advised to have him wear his brace and shoe for most of the time to protect it through November to make sure it's fully healed. This was great news, though, because it allowed us to return to our own bed and allow him to sleep by himself for the first time in 2+ months.

School He loves school. He loves his friends, his teachers, gym, music, recess and pretty much everything about school except following directions or doing what he doesn't feel motivated to do. (Not that atypical for a child, now is it?) He got to venture to a wildlife preserve on a field trip the other week, and he was ecstatic to ride the bus!

Shoes Ugh. Buying shoes that fit over his AFOs is the worst. We've used Billy Shoes for several years, and we initially had really good success with them. But the last year, he's destroyed them almost faster than we can buy them ... certainly faster than we care to buy them. In fact, the last pair we got took less than 3 weeks for holes to be worn into them. We spent more than an hour trying on everything we could find (and suggested by the sales staff) but couldn't find anything traditional that fit over his AFO without looking like clown shoes. We finally ordered Friendly Voyage shoes, and we're optimistic. They seem to be good quality (as I'd hope they'd be for the price), and they fit on his feet like a dream. The only problem is we have to rig up something to ensure the zipper stays up because it tends to work its way open with all the movement Teddy makes, and he's stepped out of the shoe once. 

Halloween Teddy had a great Halloween, making up for missing last year due to COVID. He went to a fun Halloween party his friend hosted at a bouncy house and had a great time. We went to a neighborhood party, and he got to do the limbo and had so much fun, once he got over the different costumes. He went trick or treating as Handyman Hal and loved visiting everyone, plus getting candy. It's interesting because he won't let you carry his bag, and he's not the least bit coordinated, so everything spills everywhere. We resorted to frequently emptying his bag (after every house or two). Oh, he does not care for scary costumes at all. One house had someone dressed up as a decoration who then scared kids, and Teddy was done after that with anything that looked remotely scary or suspicious. 

And the final randomness in this post is that Teddy got a paint your own cookie to decorate (since his mom runs a bakery after all). Here's how it started:

There's already a bite out of it, but he's actually painting.

But within 2 minutes it evolved into this:

No further painting was done. Only eating.

Sedation Dentistry

If you recall, Teddy's first Monday without school this summer was a hit. Literally. As in he hit his face on a curb and chipped out his 2 front teeth. 

That resulted in a trip to our regular dentist, followed by another visit a month later when the swelling was gone to attempt to repair them with laughing gas. The idea that would work is downright laughable, so we ended up with a referral to a pediatric dentist who does sedation dentistry. That visit last month led to Teddy being scheduled for dental surgery today.

Dave will not let me change his name to Theodork.

Sedation dentistry is the only way we'll get this work done, and everyone seems to feel like it's the best way for him. Tell him that as we have to check in, go through all the questions and then try to get him to actually sit on the bed ... all while he is asking to leave and getting more and more agitated. The team asked if we could get him on the bed, which obviously we can because there's 2 of us and one of him, and we're still stronger. But I'm sure it was a bit comical because he acted like he was superglued into his chair and then proceeded to wriggle like the bed was electrified to get off it. So, yeah, that was not pleasant for any of us. 

That's when they realized he needs something different, which I thought I had already covered with them that he wasn't going to settle down until they started knocking him out. They asked about one of us going back with him because they thought that would be less traumatic than ketamine. False. It's far easier to give him one shot that forces his body to relax and allows us to settle him on the bed, so they can wheel him back and put him fully to sleep. 

Once we explained that, he got the shot and crawled back in his chair. Then I carried him to the bed, where he fought for one or two more minutes before the medicine hit his system, forcing him to relax. While it's unpleasant to see him like that, at the same time we know it causes the least trauma because we just need to get this over with as no amount of soothing is actually soothing to him.

So now he's back getting his front teeth capped, his back molars sealed, a thorough cleaning and x-rays done to make sure there's nothing else to address while he's snoozing. Then we'll see whether he's tired the rest of the day or whether he's back to his usual energy level of non-stop movement.

 And hopefully it's another 10 years before we need sedation dentistry again, though I know that's too much to dream. 

Chomp, Chomp, Chomp

Teddy's been in the school system for 7 years now, and this is the first year that he has a child who bites in his classroom. Given that Teddy's in a self-contained classroom, which means he's in a classroom with other high-need students who aren't in mainstream classrooms, it's not surprising that his classroom looks a bit different than other classrooms. It's not uncommon to have different behaviors (like Teddy's flop and drop or food stealing) like yelling, occasional hitting, clothes that leave the body and more. But most of those, aside from the hitting, don't actually cause harm to others. 

Teddy's been bitten 4 times in the first 3 weeks of school. He's become the main target because he has no personal space boundaries and doesn't realize other people have boundaries. The worst was getting the call last week Monday that he was bit again while he still had a giant bruise on his other arm from Friday's bite. So I spent much of my time during his therapy and at night laying with him while he fell asleep e-mailing and trying to advocate for additional resources. 

One of the latest bite marks.

Believe me when I say I'm fully supportive of his teacher and the small team that works in his classroom daily. In addition to trying to educate our children, they're also spending all their time redirecting and modeling appropriate social behaviors, not to mention trying to curb negative behaviors and ensure safety. It's almost laughable some of the suggestions that others in administration suggest for solutions. OK, I'll be honest, I might have chuckled and asked if they've actually spent time in Teddy's classroom. I was kidding, but I also realize that what might work well for many kids likely may not be the best interventions for kindergarten students with significant behavioral challenges. 

After e-mailing quite a few folks, and several discussions with his teacher, it sounds like they are pulling in a variety of resources to hopefully resolve the behaviors quickly to ensure safety in the classroom.

But I also firmly believe the underlying issue is inadequate staffing. I reached out to the Director of Special Education at the start of the school year when I realized there were 7 students in Teddy's classroom with only one teacher and 2 paraprofessionals. (We've advocated since early on to have 1:1 staffing for Teddy due to safety reasons, not to mention to meet his learning needs, and we've never made any headway with that.) To compensate for being short staffed with high-need kids, the best solution at the start of school was to place a practicum student in the classroom who's there about 50% of the time to be an extra body. At the start of school, the district was short 20 para-professionals, with at least one of those open roles in Teddy's classroom.

I don't know how many para roles are still open, but the one in Teddy's classroom still is, along with others in his school I believe. These roles are critical to students' success and safety. Right now it's next to impossible to hire people for roles like paras because there is such low unemployment in Wisconsin that gas stations and other entry-level roles can pay as much or more as caregiving roles and paraprofessional roles. Everywhere you go, you see now hiring signs. Seriously, I just did a search on career postings, and a gas station is starting at $15/hour and the Oshkosh School District paraprofessional role is posted at $15.48. 

So I've been advocating and reaching out to others in the district to see what is being done beyond the standard recruitment for these roles. I truly believe that unless they make changes to overall compensation that they will not fill these roles that are so critical in keeping our students safe and helping our students learn. Thus far I've learned that a comprehensive review of each paraprofessional job description is being done starting next month to evaluate roles, responsibilities and compensation. That's a starting point, but we need to do better as a community. We're failing all of our students when we can't fill these and other critical roles. 

It Took 10 Years ...

... but Teddy finally has his first broken bone. At least, the first one we've realized was broken because honestly, only God knows how many concussions he's had and if anything else ever was broken. I mean, there was the time we were certain he broke his nose, but that was just a ruptured cyst that resulted in a couple intense surgeries and some quality time with a good ENT doctor. 

Anyways, back to the current situation. A week ago Teddy was trying to load a 4x4 wooden post into the back of a UTV (think about as high as his head) when he dropped it on his bare foot. Dave carried him into the house screaming (Teddy, not Dave). He's not a big fan of ice packs (or bandaids), but we tried to apply ice, gave him Ibuprofen and snuggled him while we ate supper. He was still crying after supper, which meant it really hurt, so we headed to the walk-in clinic to get it checked. They did x-rays just in case, which went much smoother than I expected. Results were expected the next day due to the holiday.

The next morning he was limping, but he was walking on it (mostly walking on the side of his foot). So we knew it still hurt, but we figured it was just bruised. Nope, turns out the kid was walking on a fractured toe/foot. I say foot because the break is higher up in the toe bone, so it's what you'd consider the top of your foot in non-medical terms. The walk-in nurse who called with the results said to ice it (which he won't tolerate) and keep him non-weight bearing until he saw orthopedics. I believe I kindly informed her that without sedatives, there was no way to keep him from being weight bearing.

So the next day we sent him to school with a detailed note and his chair, noting that he'd still be walking and moving because we know Teddy but to please try to limit his activity and use his chair. We finally got his ortho visit scheduled for Friday (so 5 days after the incident) and confirmed with his primary care doctor that we could and should try to use the boot we borrowed from a neighbor. Up until that visit, while we tried to limit his activity as much as we could, he still proved he could walk, run and jump with a fractured toe. 

Fractured toe is not enough to slow down Teddy.

The irony is not lost on me that my last blog post was about saying farewell to our backpack carrier because less than 2 weeks later we had a child who was supposed to be not weight bearing. We used his 2 chairs that we have (one for transports at school and the bulkier fun chair at home before/after the bus). We put a trike in the house to encourage him to ride it rather than walk. And we carried him up the stairs every night and encouraged him to butt scoot down the stairs. So, the child carrier still would have been handy for the next 5 weeks in other words.

Ortho believes it's not completely broken all the way through and wants to have follow-up x-rays again in a week to be certain nothing's out of place. We discussed a cast but determined the boot or his AFO/shoe is sufficient, but he's not to bear any weight without that additional support. That means he's even supposed to wear it at night, which seems so darn miserable.

He's tolerating the boot really well, except for when he gets home from school and just wants it off. As long as he stays busy, he'll leave it alone. We also have tape to wrap it if needed, so he can't just remove the boot. Because we can't stand the thought of wearing the boot non-stop (and it does rub on his leg just because he never stops moving), Dave has been sleeping with him at night. That way we can forego the boot and just put it on right away when he wakes up before he starts moving around. 

It's still going to be a long 6 weeks (hopefully only that if all heals as expected), but at least we have one week done!

The End of an Era

As the years have progressed, we've used our backpack carrier less and less. That's understandable as Teddy has grown. Physically, he's now close to 4 feet tall and weighs 80 pounds. When I'm only 5 feet 2 inches on a tall day, there's not much height difference between us. He's also grown steadier and stronger in his walking, though his ability to listen hasn't grown in equal proportions unfortunately. 

For the past several years, each time I pulled out the carrier I was reprimanded by my loving husband and mother ... truly from a place of love and concern that I'd injure myself by carrying Teddy. I insisted on bringing the carrier last year on vacation (and used it on one hike for just a short stint when the listening ears and all other attempts failed). When I didn't pack it for vacation this year, I knew it was time to pass it along to another family in need.

We had to do one final "ups" before mailing the carrier. He still fits. ;-)

Since it was hard for me to give up this season of life, I wanted to give it to another PIGN-CDG family who could benefit. As I type this, our carrier is on its way to Colorado where I hope it brings a sweet 4-year-old boy and his family as much as it did for our family.

Look at that toothless grin! We loved exploring together!

This carrier (and its predecessors) allowed us to get through the basics of life. It made grocery shopping possible when I needed my hands free. It made shopping trips possible when I couldn't wrestle Teddy into carts anymore due to his size, especially combined with my height. (There may have been a couple times we upended the shopping cart when I was trying to wrestle Teddy out by myself.) It allowed Teddy the snuggles and closeness he needed when he was in a mood and needed all the extra love ... yet I couldn't just hold 60+ pounds of sad Teddy.

We did plenty of hiking at our land with the carrier. Ted had to take an important call.

Beyond making the ordinary moments easier (or simply possible), this carrier traveled the country with us. I'm pretty sure this carrier has visited more national parks than many Americans. So, I couldn't resist searching back in time and sharing a handful of places we've been and memories we've made with this carrier. I'll be forever grateful for what this carrier gave our family.

You couldn't always see Teddy in the selfies, but you can see Black Canyon of the Gunnison.

It's completely safe. He's strapped to my back at Olympic National Park.

This was when Teddy still had pacifiers attached to the carrier at Rocky Mountain National Park.

Again, perfectly safe to walk up a river with a child strapped to your back. 

No way we trusted Teddy around the ancient ruins at Mesa Verde.

Not pictured are the ladders we climbed to get to this view in Canyonlands.

Sometimes I even let Dave carry Ted, like here in Great Sand Dunes.

Respite

Last week we had the opportunity to enjoy a bit of respite in the form of a backpacking trip with only AJ for a couple days to Pictured Rocks in Michigan. This trip is an annual tradition for us, with this being the 6th time we've went in the past 7 years (darn you COVID in 2020!). 

It's incredible to watch AJ transform on these short trips as we all truly relax and enjoy life without the daily stress and challenges that come with living with Teddy. A highlight this year was watching AJ create a lounge chair out of sandstone slabs propped in the middle of the river. He spent probably close to 2 hours creating this masterpiece and relaxing in it, knowing there would be no guarantee the waters wouldn't claim it overnight. (It did survive until morning, so he got one more relaxation break there!)

Hiking and camping are my happy places. We have so many family memories that I cherish, but hiking and camping are difficult to near impossible with Teddy through the years. That's why this trip is so incredibly special because we get to do things we love without being fully responsible for care 24/7. 

We're grateful for our village, particularly our one sitter who has spent lots of quality time with Teddy including mornings far earlier than she enjoys, to make this respite possible.

I can't help but share some of my favorite photos from the trip. And we're already looking forward to next year!

All set to hike in to our campsite!

I'm not sure how many more years we can all squeeze in one hammock.

AJ is relaxing in his chair.

We hiked to Spray Falls with AJ, first time since he was 11 months old!

This is my happy place.

Best Brother Ever

It takes a village to raise Teddy, and he's so lucky to have his brother AJ in his village!

AJ is the most empathetic, kindest, thoughtful kid I could imagine. When we started fundraising for drug repurposing for CDG-PIGN, AJ wanted to help. 

He developed a fundraiser with an online order form to sell 3-D printed fidgets with all money going to the fundraiser. He/we cover printing costs and donate his time to make them. He did well with that and decided to take advantage of my connection with the farmer's market to sell them at a couple markets.

He did 2 farmer's markets this summer, raising almost $800 and a lot of awareness. He did a fantastic job making his display board, and his dad helped create a really awesome board to display the fidgets. It was a great learning experience for him 

The real magic was listening to him interact at the market. He's incredible talking to people and explaining his mission. We're so proud of him.

AJ works markets like a pro.

Teddy may not realize how lucky he is to have AJ as his brother, but he does know how much AJ loves him.