Teddy goes to Camp

Yep, you read that correctly. And if you've ever watched the movie Ernest Goes to Camp, I'm pretty sure there were just as many adventures, just different kinds. We can only imagine how the week went exactly because we dropped him off Sunday afternoon ... heard nothing all week ... and picked him up this morning. 

No news is good news when your child is at camp, though it leaves quite a bit to the imagination. But we felt as comfortable as possible in leaving our non-speaking, adventurous, thrill-seeking child who likes to test boundaries and explore without limitations who takes a whole regimen of medications (mostly for seizures and sleep challenges) could be. 

Seriously, this camp through Easter Seals is specifically designed for campers (both kids and adults) with disabilities to enjoy a full camp experience tailored to their needs. The application for camp was incredibly thorough, and then there were countless forms to complete after he was accepted to camp. We even had to do temp checks the week prior to camp in an effort to prevent any illnesses from coming into camp. 

Upon arrival, we were greeted by a flurry of smiling staff and had the 3 counselors assigned to Teddy come greet us and walk us through the check-in process. (He wasn't staffed 3:1, but he got their full attention until another one of their campers arrived. There were 3 counselors assigned to Teddy and 2 other boys, so he had plenty of support and supervision.) Check in included another temp check and quick medical screening, meeting with counselors, spending time with an on-site nurse to review his medications and medical needs one more time and then finally hauling his gear to his cabin. Oh, and I signed a waiver to allow him to do a ropes course ... just in case. (Turns out he just wanted to watch the others and didn't want to join in the fun.)

Teddy was teaching his counselor how to play piano during check in.

And because we weren't sure what to expect, we brought all the gear. Loads of diapers (apparently 2 more packages than needed), extra clothes, his chair in case they needed to travel long distances or go for late-night walks to calm down for bed and 2 bean bags just in case they were needed as landing pads for his bed. We were told upon arrival that they could place his mattress on the floor as well. We lost one of his crocs on the way to unload his belongings, but someone found it before we left, so all was well.

(Fun fact: When we picked him up today, he was missing 2 chewy necklaces and a chewy toy. But he inherited a fake plastic mustache (weird!), a pair of shorts 2 sizes 2 small and a pair of socks. I can only imagine trying to keep everything straight when the campers can't do it themselves or voice whose belongings are theirs, even with everything labeled! Heck, I know what it's like with lost and found at a traditional camp!)

Before we left, the camp director came to us and said, "I know I've only known Teddy 10 minutes, but I already love him! He's so much fun!" And then she proceeded to show us a selfie of them. We heard pretty much the same report when we picked him up today, hearing about his smiles, giggles and his ticklish nature. 

While it was weird to have Teddy at camp, we tried to make the most of it with a few meals out, a couple nights camping, some hiking and biking, a waterpark visit and time at our land relaxing, reading and working on projects. AJ commented on how weird we were (especially me), but I told him this was simply us less stressed. It was such a wonderful week for us with memories made. 

We hiked to Devil's Door at Devil's Lake, definitely not a Teddy-friendly hike!

As for Teddy, we won't know the full extent of his adventures. But I know he had so much fun and was so tired from his adventures each day that sleep wasn't an issue! He got to go swimming, play on playgrounds, eat s'mores, dance party fun and field trips that included tractor/wagon rides. His counselor said he had a great week, and the camp director showed us a bike that he commandeered (that she has no clue how it got on camp grounds) and had a blast riding. 

We're all so glad for this experience and looking forward to next year! (Even if it was a really rough return home because he's extra tired, and we're all feeling all the emotions of coming back from camp ... it's just so much fun it's hard to leave and adjust to real life again.)

Final Days of Fifth Grade

Franklin Elementary School has been home to Teddy for the past 6 years. After spending his 3K and 4K years at two different schools, we were excited to settle into Franklin Elementary School for the foreseeable future. Though I was disappointed at the time (OK, I recall sobbing hysterically) to learn that Teddy wouldn't be at the same school as his older brother, Teddy was meant for Franklin.

This little guy started kindergarten wrapped in love and support.

As I searched back in time to find pictures of the early years, I was reminded of so many memories and milestones. Though I'm sure I'll miss some important events or notes, here's some of the highlights:

1. Teddy's first field trip (and all the subsequent ones). His kindergarten teacher set the bar high for inclusion, and I loved witnessing Teddy with his friends. (I also loved when I realized the school would send paraprofessionals with Teddy, so I didn't have to chaperone every field trip. Sorry not sorry for letting them attend plays with Teddy instead of me!)
2. Birthday party invitations and the chance to hang out with friends outside of school. Teddy made his first close friend on the bus, followed by others. Now Teddy's friend Brad is his only friend who will be at his new middle school. The two of them are wonderful friends, and it's so fun to see them hang out together.
3. The power of advocacy. I witnessed that in his kindergarten year when I shared my feelings on this blog, only to have them read by others in the school and then I heard from the principal. I learned valuable lessons about channeling my advocacy first to the appropriate channels and then determining how much I shared here. But I did learn that asking and advocating will open doors like the next one.
4. Teddy's first concert. He wasn't included his kindergarten year, so we engaged his team to make sure he was included every other year. In fact, he even played the ukelele at his final concert this year!
5. Elopement. This experience was surreal (particularly the circumstances unfolding when I heard firsthand what happened the next day) and is irrefutable proof that Teddy has a whole team of guardian angels (who apparently all took a break at the same moment). We got darn lucky this day, and I don't think it's something his team will ever forget. While it still didn't get 1:1 support for Teddy, it did put in place 1:1 support when outside of the school building in a safety plan. Though that safety plan never got tested fully right away because ...
6. A global pandemic shut down all schools for the remainder of the school year. And then we did a modified school year for two entire school years. (Holy cow ... I can't believe we lasted 2 years with that child in a bubble to protect him.) His teacher wore full PPE for that first year (mask, gown, gloves and face shield ... which is just insane to consider now but was so appreciated at the time.
7. A paraprofessional who asked in January or February 2020 whether we ever would be interested in childcare for Teddy, and I answered yes before she finished her question. Because of the global pandemic, she actually stepped in sooner than intended for childcare, moved in with us for a period of time, spent holidays in quarantine with us and became a part of our family. It's weird to know that this wouldn't be the case if Teddy went to any other school.
8. Beautiful art projects, including some of my favorite Christmas ornaments and homemade gifts. It's so wonderful that his team helps him to create these little masterpieces because he is truly proud of the work he brings home. 
9. Fantastic bus drivers and aides. We've made a lifelong friend who commandeered a bus to bring to Teddy during the COVID years to give him his bus fix. These ladies have always watched out for Teddy, and I've always rested easy when Teddy was in their care.
10. A DARE and 5th grade graduation ceremony where he scampered up to get his DARE certificate ... and then tried to run away in the opposite direction. After a break from sitting (riding on his chariot of a bike), he came back for the 5th grade promotion. Yet he was very particular about the magnetic toys and organizing them back in the box, so his teacher had to physically redirect him to get his certificate. Yet afterward, his teacher commented twice on how good Teddy did. Not only did that make me chuckle, it also makes me wonder what most school days look like.

Now he's a big 5th grader celebrating graduation with his amazing teacher.

This school has been home to Teddy for 6 years. While we're so excited for the opportunities in middle school and think it'll be amazing for him, it's bittersweet to say goodbye to Franklin Elementary. As I mentioned above, only one of his classmates will be joining him at his new middle school (the downfall of not being placed at our home school that feeds into our home middle school). This is one of the bitter parts because all the kids at Franklin, every grade, know Teddy by name, and most are excited to see him. I watched the kids at graduation cheer extra loud and give extra high fives to the kids like Teddy and the ones who need a bit more love (like the little boy who immigrated this year from Africa knowing no English ... funny story, Teddy's universal language of gestures and smiles convinced this kid to join him on the carpet when everyone was supposed to be sitting at their desks ... still makes me chuckle.)

This week will be a hard one for me, as mom, to let go of the elementary years. Right now it's less about the uncertainty of middle school and more about the sadness of leaving behind the friends, teachers and support staff who have embraced Teddy fully for who he is, helped him be his best and loved him (most moments at least when he wasn't testing those boundaries). 

Happy World CDG Day!

Happy World CDG Day! Today is a day to celebrate (aka raise awareness) of Congenital Disorders of Glycosylation. There are more than 160 different types of CDG, and Teddy is affected by PIGN-CDG. PIGN is extremely rare, as we were told it appeared Teddy was the 15th in the entire world when we got his diagnosis in 2015. We now know of approximately 100 cases of PIGN-CDG between research and our global PIGN community, which feels like so many compared to the handful of other families we first met virtually in January 2016.  

An oldie, but goodie for World CDG Day!

Today is about raising awareness. AJ, Teddy's older brother, is doing his part in presenting at his school. He's done this every year since kindergarten, at first with me leading the way and then him creating and sharing more and more each year. In fact, this is the first year I think he's flying solo for his presentations because I'll be at a conference presenting about building your community and connecting with others when your child has a unique diagnosis. AJ does a phenomenal job with his presentations, and he also manages to tie in his fundraiser where he's 3-D printing fidgets and dragons for research. If you're interested in ordering from him to support his fundraising, you can click here.  

Speaking of fundraising, I'll put in a shameless plug for our overall fundraising effort. We, as a collection of PIGN-CDG families, are working with scientists, doctors and researchers to research potential treatment options for PIGN-CDG. The current approach is drug repurposing, which evaluates thousands of known compounds (including medications, supplements and other compounds) to see if any of them may potentially benefit PIGN-CDG. This is expensive and time-consuming research, and it's all being funded by donations and fundraising as 100 people in the world doesn't tend to pull in the interest from big pharma. The progress we're making is exciting, with a handful of compounds that show promise to test on skin cells. Teddy provided a biopsy last year, so that his cells and specific mutation may be included in this testing phase. (Fun fact, of the 100 families with PIGN, very few are affected by the exact same mutation ... many of our kids have unique mutations that impact their overall functioning.) If you're interested in helping to fund this important science, you can donate here. 

If you're wondering why you'd want to donate, simply watch the video at the end of this post. This video represents a large number of the individuals affected with PIGN-CDG. You'll notice little doves by some names. Those are the sweet souls who we've lost, as this disorder takes our children from many of our families far too soon. 

Now, if you're still reading and wondering what in the world CDG is, I'll give you the cliff notes version. It is not Cute, Daring and Goofy, though that is what sometimes I feel is true for Teddy. Congenital means it exists from birth. This is a lifelong, genetic condition. Disorder seems to be pretty obvious, meaning that something doesn't function as intended. Glycosylation is the tricky part of this diagnosis, both to say, understand and do (for those affected). Glycosylation is how the body processes sugars on the molecular level. This has nothing to do with eating sugar but rather the building blocks of cells and how cells process those building blocks. Essentially if you think of each cell as a mini factory, there's a defect in the assembly line and the sugar block can't be added to the protein chains. These chains are what help our bodies do every function, which is why CDG-PIGN affects someone on every level. This site does a much better job of explaining glycosylation than my jumble of metaphors. 

So, there's my bit of education, awareness and fundraising for World CDG Day! Now enjoy the sweet, smiling faces of PIGN that bring so much joy into this world! (I'll try to get the video directly embedded in this post, but for now, here's the link to the reel.

Intentional Learning

Whew, life is busy. 

So, it feels good to spend some intentional time learning and leaning into how we can best support Teddy. This intentional time makes life even busier, but it's a worthwhile way to spend our time.

This month we started parent training through a local organization. Parent training is a component of Applied Behavioral Analysis (ABA) training, and it can also be a standalone component. Although we're on the waitlist for actual therapy services, this gives us 1 hour a week to learn about ABA components and start practicing some of the techniques. I love that we're doing it in our home with Teddy present, so we can brainstorm on specific situations. What we've found to be helpful, in and of itself, is simply taking an hour each week to talk through situations and collaborate on how we could handle things differently to better support Teddy. 

So often, in the moment with high emotions, it's a matter of just surviving that moment and getting through the to-do list for the day. This intentionality and collaboration with both parents and a trained therapist helps us slow down to do better. We know none of this will chance anything overnight, but we're getting ideas and hopefully will see progress over time. (Heck, I've had 3 days where Teddy has come inside after school without flopping on the ground in the past week!)

Now I'm at day 2 of a 3-day statewide Autism conference. I'm a learner by nature, and this is a great way for me to embrace this new diagnosis for Teddy. It's refreshing in a unique way to attend this conference because some of the social norms don't exist here. In fact, this was the start of the conference for me:

This is brilliant!

Seriously, I think every conference should have these stickers. Let's be real. I'd probably be yellow at some conferences. I've seen people doing the things they enjoy that help them focus (like building Legos) during sessions. There's more fidgets (or focus toys depending on your viewpoint) than you can imagine. There's so many helpful vendors here in the exhibition hall to learn about amazing things, even if they don't apply to Teddy. 

It's a lot of information to process, but I'm grateful for the opportunity to pause and invest in learning. 

Final Elementary Concert

Tonight was Teddy's last elementary school concert. We have come so far in his elementary years in so many ways. Here's just a few:

1. Teddy wasn't included in the school concert his kindergarten year. It was one of those awkward questions of whether we should be coming to the concert as we hadn't heard anything. When we saw his kindergarten graduation and how he loved participating in the 3 songs at the program, we immediately decided there's no reason he couldn't join for every future concert. After conversations with his team, he was included in every single concert since. 
2. In the early years, Teddy needed someone right by his side for every moment. Each year, it seems like we've celebrated in whispers of, "Oh, look! He stood where he was supposed to by himself for 10 seconds ... 30 seconds ... a minute." That time has increased, and he's gotten much better focus.
3. His dance moves now include his para joining in. This year he made her clap, dance and readjusted her because she wasn't standing correctly, according to the world of Ted. And through it all, she was smiling and happy to support him. This was actually the first year he didn't have his main teacher Mr. Skaaland supporting him (that I recall) because he was helping another student. 
4. He's learned to play the ukelele. Well, that might be a stretch, but he got to play the ukelele this year. He was sooooo darn proud. We've been talking about this for more than a week, and he was so excited about his concert and especially playing the ukelele.
5. Everyone knows Teddy and roots for him. He literally got nearly a standing ovation from the 4th graders taught by Sigrid (our childcare provider who also happens to teach at Teddy's school). He had so many people come up to him afterward and tell him what a good job he did. He had friends come up and say hi.
   

The timing is a bit coincidental because yesterday I got a voicemail inquiring which elective Teddy was taking next year: orchestra, choir or band. I chuckled as I called his soon-to-be new middle school back. My answer was along the line of, "Well, Teddy is non-speaking, so I think choir isn't the best fit. I don't trust him anywhere near a stringed instrument, so that rules out orchestra. He does love music, though, so he'd absolutely love band if he could play some sort of percussion. I'm not sure the band teacher would love that, though." 

Apparently I was wrong because, clearly, he did play a stringed instrument tonight. But it didn't have a bow (aka a weapon), and I think they give him the ukelele that's already been loved the most. We'll have the more serious conversation about middle school and electives and integration opportunities starting at his IEP next week. Now to prepare for that while watching ukelele videos ...

House of Cards

Ya'll ... I was so excited but busy preparing for our spring vacation that I didn't get a post done in advance. I was going to share all the details, the highlights of what we'd see and all the preparation and planning that went into making this trip happen. (Seriously, we're talking prepping for flights months in advance with discussing medications with neurology to help with any challenges on the flight, coordinating to bring one of our amazing childcare providers along and weeks of discussing the flight with Teddy and watching videos to help prepare him, not to mention all the packing.)

Last week Monday, Teddy woke up early (around 4 a.m.) which isn't that extraordinary for him, but with all the pre-flight jitters, we were a bit concerned. So we temp checked him to find a mild fever of 99.3. Now, most people, wouldn't bat an eye at that, but when you combine that with a history of seizures and a flight to Arizona the next day ... well, that meant we got the prize of being the first people at walk-in clinic at 7 a.m. 

It's great that the doctors at walk-in clinic recognize us, right? *Sigh* At least they are understanding of why we brought him in on the first day with this minor symptom. He checked out OK, but they gave us the option of running the respiratory panel. We went ahead with that, hoping for more information to help reassure our vacation plans .... and we got a diagnosis of RSV.

That's a new one for us, though research indicates I'm sure both our kiddos have had it in the past. It's the first time we recall actually getting the diagnosis, though. I spent time with the nurse discussing and trying to determine if we were still OK to travel. She indicated we should be fine, as long as he could mask around others to avoid spreading it to those more vulnerable.

After a lot of tough discussions, including weighing in with our childcare provider who nannies for other families with little ones, we made the incredibly hard decision to cancel our trip. A trip with a child like Teddy is like a house of cards - a ton of fun and work to create but easily destroyed. There were lots of tears. Ultimately, though, our childcare provider couldn't risk bringing it back to the families she cares for, especially as one of the moms is due this week with a brand new little one. Also, we had no idea how Teddy would fare with RSV, whether it would be really mild like a cold or whether he'd be miserable.

And we made the right call. This was what we woke up to at 3 a.m. Tuesday morning. 

That's really high, especially since he had Ibuprofen before bed.

This would have been what we discovered waking up to get ready to fly out, and we would have had to cancel the trip that morning and not perhaps be able to get credits and refunds on most everything. That would have been even worse, though cancelling a much-anticipated trip is one of the hardest things to do.

But had we been on vacation, we would have been up between 3-4 a.m. in hotel rooms for the first 4 nights (and then only sleeping until 5ish for the next couple nights). It's truly for the best, though it wasn't what we planned.

We did still manage a bit of fun at the end of the week, as Teddy was feeling better (though he still hung onto a fever for about 6 days). He got to enjoy a farm show two different days, as did AJ. Both of them had a great time with that. We also checked out the Chicago Museum of Science and Industry, which is a whole other story.

As for that vacation? We'll see if we can't squeeze it in and rebook it yet this school year before the weather gets too warm in the desert. We know we can't wait until fall when it cools off because the start of a school year and fall means we're almost guaranteed illnesses all the time. 

Monday Musings

With beautiful weather this evening and an extra hour of daylight, we headed outdoors after supper to enjoy it. AJ and Dave went for a walk, while Teddy and I logged some running miles. As we ran along, I noticed that while not everyone smiled and interacted with us, the vast majority of folks did indeed smile at us. 

Now Wisconsinites are generally pretty friendly, so it's not unusual to greet strangers. What I noticed, though, was that most of the people who smiled at us were smiling as we approached. I realized, and said aloud to Teddy, that he simply brings people joy. I'm sure that his excitement to be outdoors and running was what brought a smile to their faces.

At the end of their run, Teddy and I visited a park to play for a few minutes while we waited for Dave and AJ. He loves parks and asked for it each time we ran past.

Teddy's a fan of parks any time and any where. Dave, not so much.

There were a couple boys around Teddy's age who had waved at us as we ran by the first time and waved again when we stopped at the park. I asked if they knew Teddy, and I heard them acknowledge they did. Teddy ran right up to them, and one of them hopped off the swing for Teddy to take a turn. 

When Teddy ran off to the playground structure to climb, the one boy encouraged the other to go play with Teddy. So, they did ... after singing the Barbie song. I figured Teddy was fine playing with his friends, so I walked his chair over to the picnic area before coming back to stretch.

It was really sweet to see them all playing together. The 2 boys included Teddy, offering him turns to race down the slides with them and encouraging him up the playground structure the one time he struggled because he was trying to scale up the wrong spot. I hadn't caught their names when I asked them the first time, so I tried to fish around to figure out which classroom at his school they were in to piece it together perhaps. 

I asked if they were in Teddy's classroom, and they both said no. Imagine my surprise when both of them said they went to different schools. *Whoops. I clearly misheard them when we first arrived at the playground.* 

I asked how they knew Teddy, and they said they didn't but they just liked making new friends. Then one of the boys said, "Not to be rude, but does he have a disability?" I shared that Teddy has autism and a genetic disorder. 

Well, the second part prompted quite a few questions to help them understand what that meant. I explained that Teddy doesn't talk like us, but he uses a tablet, sign language and gestures to communicate. The one boy said, though, "Oh, he's just like other kids but he doesn't talk." I said that it takes Teddy longer to learn to do things, like walk, but that he loves to have fun just like they do. 

The autism part they understood, so they questioned whether I knew every autistic child they knew. The one shared about his brother's autism diagnosis and how his brother loves to read about the things that interest him. 

The boys complimented Teddy's chair and thought it was really cool. They asked how far we ran, and I told them we ran 4 miles. The response was awesome from one of the boys: You're mom of the year! So I told them Teddy runs in races with it, and that we use it for biking.

That prompted the more outgoing boy to share that he loved riding bike with his dad, but his dad wasn't able to go for bike rides now. I got the sense where he was going before he said his dad was locked up for something he didn't do ... and that he won't see him until 2026. That broke my heart for him and made me realize, yet again, how blessed our family is to have a stable family unit despite the challenges that come with Teddy. 

That's about when Dave and AJ arrived, so we had to leave. I walked away a bit in awe of what had just occurred. Given how the boys interacted with Teddy, I would have sworn they were peers at his school. Instead, they were just being good humans who didn't think twice about including someone new, lending a helping hand where needed and seeking to understand and make connections. Seriously, I didn't even mention that Teddy didn't talk until the end of the conversation because, again, I thought they all knew each other. 

It was just a heart-warming moment of the best of humanity ... from two 5th grade boys. (And lest you think they were angels dropped into our lives, I can assure you they were 5th grade boys who also swore at least once and one bagged the other by accident. Pretty sure they're human.)