A Break Due to Heartbreak

It's been months since I've posted because life this fall has been hard on so many levels. 

The last post I wrote was about the start of middle school. Our boys started middle school with me (their mom) pretty darn useless in doing anything beyond caring for myself due to a double mastectomy. Thankfully those surgeries (because of course there were complications that required surgery again the next day) were the extent of my treatment for two microinvasions of breast cancer. 

So the end of August and all of September were spent recovering from surgery and adjusting to middle school. Just as I was getting back to normal activities, my mom was hospitalized due to lung issues (while dealing with her own diagnosis of small cell lung cancer since this spring). That turned into spending the entire month of October in the hospital before passing away the end of October. 

That meant my boys had a pretty useless mom from mid-August through mid-November when I finally returned back to our home. Not an easy start to middle school for Teddy, but he's adjusted remarkably well and loves school. (We had a rough couple weeks while tapering off a med that we trialed for behaviors, specifically aggression toward his brother. It was so nice when I returned home to have our Teddy back with all his happiness, joy, energy and at least his normal not-perfect sleep versus insomnia.)

And we're still grieving. This loss is so hard because my mom was such a huge part of our lives. 

She was AJ's touchstone, one of his go-to people when he was sad, happy or simply needed some attention. She learned to play Minecraft to play with him. She encouraged him with sewing and every other hobby he wanted to pursue and did so many fun things with him. She was his top salesperson in selling fidgets and dragons to fundraise for CDG research. The one regret she had, and AJ has as well, was that they didn't get to do the hot air balloon ride they had planned this fall due to weather cancellations. 

She was always willing to watch Teddy, even as it got to be physically too much for her. She would take him for overnights, even if it meant she slept on the floor because he fell asleep in the living room, and she couldn't carry him upstairs. She always said yes to watching him and did all the fun things with him, which are things that aren't fun for anyone but Teddy. She loved and embraced him fully for who he was, celebrated every accomplishment and was so darn proud of him for simply being Teddy. 

She was here at least once a month, helping me prepare for farmers' markets and spending time with me packaging and selling. She was always willing to help, to spend the time here and to give of herself. The drive here was worth it to make our lives easier. She encouraged Dave and I to take time for ourselves, helping to watch the boys when we did our solo trip to the Virgin Islands (now almost 10 years ago), letting us volunteer together for SkillsUSA and taking AJ on long weekends backpacking. 

There's such a hole in our hearts, and life has been hard to pick up the pieces. So while there's much to update, I'm giving myself grace in these posts and will update here when I can. 

Right on Track

We've reached the end of the first week of middle school, and we're right on track. 

Quite literally, actually. 

We spent several months this summer working with our local school district regarding Teddy's use of a GPS tracker at school. We had to navigate privacy and security concerns (for other students) as well as district policies. We worked with his tracking device company's school liaison educators to ensure our district understands the capabilities of his tracker and why it's best for Teddy. 

It took until an IEP a week before school started, but we reached consensus on how to best support Teddy. We're really happy with the solution as we feel it's best for Teddy to ensure his safety. It's also, hopefully, an opportunity to work toward changing district policy to allow other families to use similar devices.

At any rate, it allows us to know exactly where Teddy is, ensure he makes it to school, to his after-school program and track him should he elope from school ... not that he's ever done that before ... oh wait ... that's a good story.

Gosh, I love these two goofs!

While he does have his older brother at school to advocate and look out for him, AJ has yet to see Teddy at school because their paths don't cross. But several of AJ's friends have said hi to Teddy in the halls, and he has gym with one of the neighbor girls, which he thinks is the coolest thing. (He doesn't care that she's a mature 8th grader, and he's only a 6th grader ... he'll still hang with her.)

Middle School - Here We Come!

I don't know how I have 2 middle schoolers. 

But I do.

And they're at the same school for the first time in 8 years.

The last time AJ and Teddy went to the same school, it was for 3K and 4K. I remember that day so clearly, thanks in part to Facebook memories where we sang about how the Mamas in the Tahoe were so excited for a break with her boys at school for a few hours. I also remember AJ singing because he was so excited to go to 4K. 

Be still my heart! This was when Teddy could barely walk.

And when they went to school together, when they were sweet little 3- and 4-year-old boys, AJ loved every time he saw Teddy riding around school in the wagon, proudly waving and telling his classmates that was his brother Teddy.

Now AJ is a 7th grader, and Teddy is a 6th grader. Ironically, they're both at the same school where they started their educational journeys (as this is both an elementary and middle school). AJ is super excited to have Teddy at his school because he loves his brother ... but he's also worried about bullying and the lack of his extra time in the morning with Dave or me. 

It's a bit terrifying since it's a new school, new teacher (after the same one for 5 years!) and almost all new support staff, aides and other teachers. (He does have the same speech therapist as last year, thankfully, and does have the same nurse from 3K all those years ago, along with same PT from all those years ago when he was a floppy baby boy.) The most terrifying is that it's all brand new kids, with none of his friends who've grown to know and love him the last 6 years. Not a single one will be at his new school because Teddy was not at our home school, meaning all his classmates are going to a different school and now Teddy is coming to our home school for middle school.

But I'm so excited for the opportunities in middle school for Teddy! To highlight a few:

1. He's at the same school as AJ, for better or worse. I love that AJ will look out for him, as will our neighbor girls and hopefully AJ's friends. 
2. Teddy is a social butterfly. He'll make friends incredibly fast and will quickly endear his teachers, paras and make himself known to all the adults in the school.
3. Teddy gets support to attend gym with a whole bunch of his peers, modified with the support of his adapted PE teachers. I think he'll love that overall.
4. Teen life aka home ec. is a modified class for Teddy and a handful of his peers. He is going to absolutely love even the laundry aspect but especially the kitchen skills. This teacher also is amazing (AJ loved her class!) and does a coffee cart with Ted's class. I can only imagine how excited he will be to participate in this learning opportunity. 
5. Band is one of Teddy's classes. We had to select band, choir or orchestra as one is required for all 6th graders. I said I wouldn't trust him anywhere near the string instruments, so that ruled out orchestra, and he's non-verbal, which meant choir wasn't a great fit. So band it is! AJ also does band and loves it and the teacher! So it'll be really interesting for the poor teacher to have a great student like AJ and then Teddy. His para will get a workout in band, no doubt, but I think he'll love all the music and be so proud to participate with his peers.

Those are a few of thing things we're looking forward to with middle school. There's been so many developments here (last-minute IEP, acceptance into an afterschool program and some pretty major health issues I've been navigating), so I'll work on those updates another time. 

For now, we get a good night's sleep because we have 2 middle schoolers tomorrow!

They've gotten a bit bigger in the past 8 years.

A Hiking We Will Go!

Ya'll, life does not slow down. It's about to get extra crazy here, so I wanted to share a quick update since we got our Huckleberry adaptive hiking cart. 

If you've followed our journey for a while, you've seen me post multiple times about hiking because it's a key part of our vacations and our life. While we don't get to hike as much as we'd like with kids (and Teddy in particular), hiking has allowed us to explore so many incredible things. You can read out our hiking adventures ... at least some of them ... here. And you can read the bittersweet end to hiking while carrying Teddy here. 

We truly thought that was the end of our hiking journey with Teddy, unless we could take his adaptive chair on a particular trail. Then we discovered the Huckleberry available for pre-order this spring and ordered one within a week! (A huge thank you to our generous family member who helped sponsor Teddy's Huckleberry!) 

Teddy's Huckleberry arrived in the last couple weeks, and we've taken it for spins around the yard and two actual hikes. It was definitely a learning curve for all of us, as Teddy was pretty skittish and uncertain about riding in it at first, but he's now more than willing to clamber on for a ride. 

Amazing friends help pull (and stabilize) your child!

Yesterday two of my amazing friends joined me for a hike with Teddy, and we had a great time. I'm thankful for strong friends to lend helping hands who love Teddy and have a sense of adventure because we certainly needed it for part of the trail as you can see in the video.

We're looking forward to many more hikes and adventures with this!

A beautiful scenic overlook (up the side of a Wisconsin mountain).

Happy Birthday Buddy!

How is it possible that my little guy is 11?!? 

He's not so little any more ...

Teddy's birthday is often a mix of emotions:

• Gratitude to have another year with Teddy. When we got his diagnosis at 2.5 years old, we read the life expectancy was 3 years old. Given that there are only about 100 known cases of PIGN-CDG in the world, we know far too many families who've buried their children from this diagnosis. Yet Teddy and others continue to thrive and write their own stories.  
• Sadness that comes with comparison. In the words of Teddy's namesake, "Comparison is the thief of joy." Some years it's easy to get lost in the rabbit hole of what Teddy can't do compared to others his age. It's especially easy when shopping for gifts is hard.
• Happiness of the celebration with family and friends. The best thing for Teddy isn't presents, but rather the presence of his favorite people.

This year was extra chaotic because I had a farmer's market the morning of his birthday, so this year didn't come with quite so many emotions. I lived in the land of happiness and gratitude, loving seeing him so happy as he spent his afternoon and evening with his favorite people.

Birthday buddies - Teddy & Collin got to celebrate their birthdays together last week.

We invited family, neighbors and friends, and so many of them made an appearance (whether that was for Teddy or the pulled pork is debatable). I snuck him away for a quick visit for his sitter's graduation party, and he was overwhelmed when we returned home because so many of his favorites were here that he couldn't decide who to play with first! 

We're so blessed to have Teddy as our son and blessed beyond measure to have the community that surrounds and loves on him!

Summer Sickness

 It's weird how things work out sometimes. 

On the Wednesday before July 4th, I was a bit concerned dropping Teddy off at therapy because I was afraid he was coming down with pink eye. He had been rubbing his eye for 20 minutes, clearly in pain, before leaving for therapy. But it seemed to be an eyelash in his eye and then a pair of styes, so I felt it was OK to drop him at therapy.

When his sitter picked him up from therapy, he was definitely not acting like himself, just moping around, trying to take off his shorts and diapers and pointing to his waist. (On the bright side, the eye issue was resolved.) Since he's not verbal, it's really tough to tell what's going on. I was working from home, so I could check his temp and check him out.

He seemed OK from a symptom standpoint that I could find, but something was clearly bugging him. After about 2 hours from when he started acting weird, the mystery was solved when he threw up. Ugh. He threw up twice, which confirmed my gut feeling that we should take him into the clinic.

We had a bit of a poop issue, and then all of the sudden he started scratching. The poor kiddo just turned bright red from head to toe with viral hives. No break for him!

So a quick trip to the walk-in revealed not just the obvious stomach bug, but also a nasty ear infection and then viral hives to boot. Poor kiddo had a 3 for 1 special. But, without the stomach bug (which probably prompted the viral hives), we wouldn't have known about the ear infection to treat that. So in a weird way, it all worked out ...

After a night of medicine (anti-nausea that didn't fully work as he puked up all his medicines, prompting a call to his neurologist on call to sort that out), a long oatmeal bath and some sleep, he woke up feeling much better with the stomach bug thankfully over, along with the nasty hives. 

It wasn't quite the 4th we had planned, but we did manage to get to our land to play in the mud. At least that was Teddy's plan.

Just a bit of mud.

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.)

Springing Into Spring

It's been an unseasonably warm winter in Wisconsin, and that trend continues with an unseasonably warm and early spring. We all think Mother Nature is going to wreck havoc on our hopes (and unfortunately every living plant that has already started growing, not to mention all the critters out and about) with some wicked cold and snow yet. 

But for now we've been taking advantage of the warmer weather. That meant last weekend we spent the day at our land with light jackets (or no jackets when hiking) enjoying the sunshine and fresh air. It was a perfect day for tractor rides for Teddy, an outdoor picnic, ranger rides, fishing for Dave and some small but fun hikes. In other words, it was simply a perfect day.

Teddy found the swings and invited me to join the fun.

Aside from weekend fun, it's been busy here. We're on multiple wait lists for ABA services for Teddy, and that has come with a couple assessments. Most recently this week we had an assessment to start parent training, which is something one provider could offer as soon as next month until we can start services. (Wait lists for services range from summer to next January for the ones we're on, with plenty longer than that.) We're still praying and exploring and honestly waiting as we determine what therapy routes are best for Teddy. 

We also did an assessment for speech therapy and are going to attempt outpatient speech therapy again, at least to finish out the school year. That assessment was really tricky, though, because Teddy freaked out at that part of the clinic, and I literally had to carry him into the room. I'm not sure what triggered him, but I'm nervous it's going to continue as we attempt therapy. If that's the case, we won't make any headway with therapy because he'll never settle and be comfortable. So we'll see what happens.

He's also in a program called Advanced Development Motor Program, a program that partners UW-Oshkosh physical education students as part of their curriculum with kids with disabilities to provide a fun program for them. It's essentially 1.5 hours of gym, so Teddy loves it! In the past he's had a consistent "teacher," but so far this year he's trained 3 different "teachers." It's really a neat program that we're lucky to be able to access.

Aside from that, our next big challenge is finding childcare for summer. I know I've talked often about our amazing childcare providers. Unfortunately, neither of them are available for the hours we need this summer, so we're back to the drawing board. I like to think of this as a chance for us to "adopt" another person into our family. Ha, we probably won't be that lucky, but please do wish us luck as finding childcare for Teddy is always a challenge. 

Rare Disease Day: 2024

Rare Disease Day is always celebrated the last day in February, and it feels extra special when it falls on February 29 because that's extra rare. It's a day to focus on rare diseases and raise awareness of them. 

One of the common sayings you'll hear is Show Your Stripes. The reason is that often the medical community thinks of the most common diagnosis just as people most often think of a horse when they hear hoofbeats, for example. The challenge is to consider rare explanations as well, such as a zebra (or in Teddy's case PIGN-CDG).  This year, I was on top of my game and created these little key chain cards to share with Teddy's team and classmates at school to raise awareness. 

Another PIGN mom gave me the idea for these key chains. 

I time traveled this week, reading this blog post from 8 years ago in 2016:  Teddy's Triumphs and Trials: Rare Disease Day (teddystriumphs.blogspot.com) This was 3 months after we first learned Teddy's diagnosis. In the past 8 years, so much has changed. To name a few of the most significant:

1. Teddy's diagnosis is now PIGN-CDG, a more encompassing and accurate description than his original diagnosis of Multiple Congenital Anomalies-Hypotonia Seizure Syndrome 1 (MCAHSS1 for short because that's still not a mouthful.)
2. Instead of knowing less than 5 families with this diagnosis and being the supposed 15th in the world, our .community has grown to closer to 100 with the diagnosis and their families. 
3. Teddy is now 10 and capable of doing so much more than we could have imagined 8 years ago. Not to mention, he's thriving and has made an outright mockery of the life expectancy (3 years) given in the first medical research papers. 
4. An Internet search of PIGN-CDG now yields 6,360 results instead of 3 for MCAHSS1 in 2016. Seriously, that blew my mind that Google didn't have results for our son's diagnosis. 

Yet one significant thing has not changed: 8 years later, and there's still no treatment for this disorder. AJ does a great job explaining this in this Facebook post. (For whatever reason I couldn't get the video directly into this post.) If you'd like to support AJ's in fundraising for PIGN-CDG research, you can place your fidget order here.

This fundraising is so important because research is expensive. While there's much interest (and therefore money) dedicated to researching treatments for wide-reaching disorders and diseases, there's not much interest and money in researching treatments for a diagnosis that affects approximately 100 known people. 

But trust me, the effect this disorder has on those families (and their families, friends and communities) is far reaching. It's an honest statement to say Teddy's diagnosis has impacted every single aspect of our lives. Some of those impacts have been beyond positive: friendships forged, connections created and memories to last a lifetime. Others have been beyond challenging: sorrows shared as we lose children with PIGN (2 within a week of each other this month), trauma from seizures and sicknesses, endless appointments and therapy, elopements and other scares. 

For each of us impacted by this disorder, we care deeply about a treatment. We want to change the fact that we grieve the losses of our children every year. We want less hospital stays and better quality of life for all. Honestly, we want to sleep at night without fearing our children won't wake up in the morning. We want hope, not only for our children, but for those who have yet to receive this life-changing diagnosis.

Daisy: The World's Latest Love Story

One of our CDG children went viral this week, a sweet moment of Daisy dancing with her caregiver at the Taylor Swift show in Australia. You can see the clip that spread like wildfire on TikTok and Instagram here. 

Before anyone realized Daisy was a worldwide sensation, I had shared with our nannies the picture of Daisy heading to the concert. I love sharing what our PIGN kiddos are up to, and the girls are Swifties. (Heck, they're the reason Teddy starts dancing as soon as he hears Taylor Swift.) I wanted them to see how adorable Daisy was as she saw their favorite singer. 

Right away, one of them said, "I saw her on TikTok!" and sent me the link. 

Daisy with her caregiver and friend. 

Of course, I shared the news with Daisy's mom Libby, along with the link. In a matter of hours, Daisy had more than a million views and was well on her way to 2 million. The next day, people walked up to them in Melbourne saying they recognized Daisy from the video. Libby was able to connect with the TikTok creator and share more of their story. 

So later that week, the creator was interviewed on a morning show in Australia about why that moment captured his attention. I joke that I even got my 2 seconds of fame in Australia, referencing "a mom in Wisconsin" telling Libby about the video. 

And the next day, Daisy was featured on the front page of a newspaper in Milan, Italy. The story focused on how Italians want the freedom to enjoy concerts like Daisy, focusing on accessibility for those with disabilities. 

It's incredible how Daisy has captured such attention throughout the world, and that night was such a special moment for Daisy and her mom. "The best thing I witnessed was no one saw Daisy's chair for once," Libby said. "They only saw the girl in sparkles. And that made all the difference for Daisy."

If only we could all learn to see people for who they are, not their disability or adaptive equipment. 

For the Love of Sleep

If you've followed this blog since the early days, you know that sleep has been a challenge for Teddy through the years. Generally speaking, it's improved much in the last several years in terms of sleeping through the night, though we still have a much earlier "Teddy" alarm than we'd like most days. Trust me, if you need a good alarm clock to pry your tired self out of bed, I highly recommend one that involves 80+ pounds kicking a wooden door while moaning loudly. Works like a charm for us. ;-)

Of course, travel is still hard, which means vacations are challenging, and we rarely sleep anywhere aside from our home and our land where Teddy is accustomed to the setting. We drive 4, 5 or 6 hours in a day to make day visits to family rather than spend the night because we know that sleep will be hard to find.

But, generally speaking, Teddy does sleep better. We've worked with his neurologist to find the right combination of medications to both help manage seizures and help us all get rest at night. The trouble is that most of them help more with falling asleep (and restless legs, which he has as well) than remaining asleep. 

On Groundhog's Day, he woke up at 3:30 and was up for the day. I took the early shift that day because I didn't have to work my office job, so I figured I could catch a nap perhaps while he was at school. Given that I already had plans to run with a friend at 5 a.m. and it was warm enough to bring Teddy, I bundled him up, loaded his chair and headed out the door shortly after 4:30 a.m. If you're wondering what warm enough to bring Teddy is for Wisconsin winter, I aim for right around 30 with minimal wind. He was so darn excited to go running! While my friend was a bit surprised, she pitched in pushing him. I joked to him that though it was Groundhog's Day that we weren't repeating this. 

Can you see his excitement?

Post run - still smiling despite the early hour.

Of course, I lied. That was Friday, and Tuesday morning he was up for the day at 2:30 a.m. (We think he fell out of bed that morning and woke up when he hit his hard floor. Game over. Up for the day.) Dave took the first 1.5-2 hours, and then I took over. Again, it was warm enough, and I already had plans for running, so off we went for a 5 a.m. run. My friend are great, so this friend was a lifesaver when my fingers were numb in getting Teddy out of his chair and buckled into the truck. 

Groundhog's Day repeated. Still all smiles. 

Now if you're wondering if he napped at all either of those days ... nope. Not at all. He was definitely tired but powered through the whole day. 

The good news is he had a neuro appointment last week, so we were able to discuss his early morning wakings. We did a medication adjustment, so hopefully once he gets adjusted at the new dose (and over this virus that causes coughing fits that wake him up now), we'll all get some better rest. 

Diagnosis Day 2.0

We have a new diagnosis day: January 31, 2024. 

Last month we did neuropsychological testing with Teddy. It was not a pleasant experience, nor did I expect it to be. Teddy isn't fond of medical offices nor is he great at standardized testing. We requested the referral because we're struggling as a family ... and have really most of last year ... in how to best support Teddy. So we felt it was worth the challenge of the testing to hopefully unlock additional resources.

This behavior, laying on the ground after school, is one of those behaviors that challenge us.

His testing resulted in him meeting the criteria for 2 additional diagnoses: Intellectual Disability, which I already thought (incorrectly) was in his chart, and Autism Spectrum Disorder. Honestly, we were expecting an autism diagnosis, especially after our first parent meeting with the neuropsychologist. 

Still, it's something to process. It's surreal to go from an extremely rare diagnosis, so rare that 3 medical research papers were the only information available online when we got the PIGN-CDG diagnosis, to one so common. We received a laundry list of potential resources when we got the autism diagnosis, and within 4 days we had a one-year membership in a local autism resource group, a discount to attend a statewide autism conference, a full booklet of resources in our area and a paperback book to learn more about autism. It's a bit overwhelming as there's so much information and so many resources, but in a good way. 

Despite an abundance of resources, it's going to take patience and effort to get services started. An autism diagnosis is required in Wisconsin to qualify for ABA (applied behavioral analysis) therapy, which was specifically recommended as something that could highly benefit Teddy. A number of providers do not serve children as old as Teddy, so that limits our options. A lack of qualified staff means that wait lists for after-school hours are 8 months to a year. Yep, you read that right.

So Teddy is on a wait list for a local provider in Oshkosh that serves only after-school hours for Teddy's age, with the potential to start in fall but realistically next January. That provider would be extremely convenient as it's after-school hours, but it's only 8-9 hours a week. While that might seem like a lot, and it's far more than he's receiving now for therapy, I'm not sure it'll be enough to help him make the progress we want for him. 

That means he's on a second wait list for a provider in Appleton, about 30 minutes away. That provider already has done a parent assessment (a detailed 1-hour interview with me), and Teddy is scheduled in May for an in-person assessment. Their recommendation is 10-20 hours of therapy a week, leaning toward the 20 hours to accomplish the goals we discussed including toilet training. Needless to say, that's daunting, though I can see how beneficial it could be. The tentative gameplan is that he'll hang on the waitlist until summer and then start therapy 4 hours a day (9-1) 5 days a week. Then we'd hope and pray that come fall he could get slotted into afternoon hours (1-5) and set up his transitional IEP to middle school to accommodate this. I'm not as concerned about the transitional IEP as I am in getting the afternoon hours because the wait list for the 3-5 time slot is 8 months to a year right now. But we'd have to figure out afternoon hours or else he'd never be in school.

It's hard to know which is the better option, though it's easy to know which is least disruptive to our lives. But the disruption may be worth it to eliminate reduce the daily challenges. So we'll continue to pray, ponder and wait. 

And how we make any of this work, I don't know yet, even for the summer hours, because we still have to line up childcare for this summer. But I remind myself we're doing this for good reasons, and while ABA therapy is a lot, it's exactly what we hoped in terms of additional resources and ways to better support Teddy. 

Shoe Sponsorship

All shoe companies, listen up. I'm offering you the rare opportunity to work with a 1-of-a-kind partnership for your brand. This kid is one in a million (actually more rare than that!). He has a smile that lights up a room, he loves shoes and he's mighty convincing. I can't tell you the amount of times I heard someone say, "I'm not doing that," only to be doing that minutes later. Oh, and he'll never speak a negative word about your product. 

Yes, Teddy would be the perfect candidate for a sponsorship with a shoe company. Heck, he's content to live within his means, so he would really be OK with no actual cash transactions, just new shoes as often as he needs them. (Let's be real, he would take the cash and buy a bus. Or a train. But probably a bus.)

This kid is burning through shoes. As his SMOs (braces to support his ankles and help him walk properly) grow larger, the struggle to find shoes that fit them only gets more challenging. It takes a men's size 7 to fit his braces currently, and even then we can only find a handful of special shoes that will fit over his braces. While we could try going to larger sizes, then we create the clown shoe issue where he'll be tripping (more) because his shoes are so big compared to his feet and body. 

We used Billy shoes for a while, and they were fantastic at first. But lately they've just fallen apart within weeks. Literally, the last 2 pairs did not even last a month without serious amounts of shoe goop. I'm not certain if the additional weight and force of Teddy's movements is the issue or if they changed something within their quality, but it's not worth buying $50 shoes each month. This was so disappointing because they did work so well for a few years and look so darn stylish.

So we tried a new brand My Friendly's at the end of October. They seemed more durable, still fit over the SMOs and looked nice as well. But they're no longer wearable because the zipper pull literally pulled apart today with no hope of fixing it. And these parents don't want to invest $90+ in shoes every 3 months. I mean, I don't think it's unreasonable for a shoe to last a child close to a year ... or at least a school year.

Aside from the zipper, note the wear on the shoe. 

So, I clearly think sponsorship is the best route to go. As an added bonus, we can provide feedback on durability and quality of the product. But, as we've discovered, not all shoe brands fit SMOs. While you might view that as a limiting factor in this sponsorship pursuit, I only see it as an opportunity to help them become more inclusive and open up a brand new market that will be loyal customers for life if they have a quality project that fits over braces. 

Win. Win. Win.

Now, hit me up if you have any connections to shoe companies please. 

Winter is Here

Despite having snow for Halloween (thanks, Mother Nature!), we had no snow for most of November and December. In fact, we had unseasonably warm temperatures in December, balmy (for Wisconsin) 40s and may even warmer. 

But we're paying for it now that January is here. We had two snowstorms last week, with one actually counting as a blizzard due to the volume of snow and wind combined. The kids were home from school Tuesday, and we got a few inches of snow that day, but it wasn't as bad as forecast. So held out hope we'd have school on Friday, but those hopes were dashed when my run ended at 6 a.m. to see the texts that school was cancelled. Friday definitely was a snow day as that was our blizzard day that continued into the night. 

Fortunately I had a friend offer to take AJ to her house for a sleepover when she headed home from the office, so he got to have plenty of fun with a friend playing video games and Dungeons and Dragons. As I was chatting with Dave when he finished up work late in the afternoon, I suggested we invite the neighbors over for breakfast Saturday morning since we'd all be snowed in.

A few text messages later, and we had at least a few takers, so we thawed some meats and left extra cinnamon breads for the bakery unfrozen. The next morning neighbors showed up around 8 a.m. to enjoy sausage and bacon (of course cooked outside on the grill and griddle ... we grill year-round here), cinnamon bread, sourdough, hot cocoa, tequila sunrises and adult breakfast smoothies (aka the leftover pitcher of margaritas from Christmas with the neighbors). 

Not the whole crew, but quite a few. Teddy made himself comfy.

Teddy was so excited when the first neighbors arrived, happy to play with their 2 girls. His excitement only grew as we had 13 friends join the fun. He spent time in the basement playing with the kids, and dragged a few adults down to the basement to play as well.

It was such a nice, spontaneous gathering to make the most of the snowstorm and fact that no one was dashing off anywhere bright and early. It wasn't fancy, but it sure was fun!

 

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.