Winter Walks

In Wisconsin, we get what you could aptly call a winter wonderland. We get a blanket of snow, perfect for sledding, traipsing through, snowshoeing, skiing, building snowmen and forts and the like. We also get beautiful days in the 20s or low 30s that are perfect for enjoying the snow and nature. We also get days where it's so cold that it hurts to breath outside. With the exception of a few wickedly windy or cold days, we're able to enjoy time outside most days as long as we dress appropriately.

Despite temps around 10°F (without factoring in the wind, which always makes it feel colder), we went for walks on Christmas Eve and Christmas Day. It was wonderful to be in the woods, enjoying the stillness and the natural beauty that exists even without snow. The day after Christmas, Dave and Teddy did a nice mile loop while AJ tried out his new bike and I chased him huffing and puffing for 3 miles. Let's just say that a 7-speed bike increases his pace that I'm going to have to do some speedwork to hang with him this upcoming summer. Then on Sunday we explored a new-to-us wetland with a boardwalk into the water and a trail of sorts through the woods. 

The challenge on all these walks is whether we chase Teddy, who doesn't have the stamina for a mile-long walk, takes off running in random directions and sometimes flops to the ground and refuses to move. That's a challenge if we still have a long ways to get back to our starting point, so for longer walks we'll take his chair. He can get out for portions but can also be safely contained and transported rather than a fireman carry as he actively resists. So we took his chair to explore the new wetland place, which worked great for the boardwalk and part of the trail. Then the trail became non-existent aside from markers on trees. Dave and I each took a handle and pulled his chair backward to navigate the rough terrain. So on the way back, we took to the ice for a much smoother (and more fun) ride. I could even spin Teddy 360° in his chair on the ice. AJ had fun exploring the bubbles in the ice and all the other little wonders of nature.

Note the "trail" as Teddy enjoyed peering through a hole in the ice.

That afternoon we got several inches of snow. I bundled Teddy up and headed to a park that was empty. We spent close to an hour playing in the park, whizzing down the slides. (For those of you not native to winter wonderlands, a sprinkle of snow makes slides faster. As a child, we'd carry handfuls of snow to the top of the tall slide and dust them on to make our trips down even faster.) It was really enjoyable to just follow Teddy where he wandered and let him do his thing (aside from the construction equipment that we weren't going to explore). We both love being outside, and it was great to enjoy it together. 

This face mask keeps him warm and lets him chew on something-double win.

On a side note, I'm grateful my new snow bibs fit both our sitters because they have many snowy days to play with the boys. Lucky them, right?

Merry (Belated) Christmas!

 I hope you enjoyed a wonderful Christmas, Hanukah or whatever holiday your family celebrates. For us, our Christmas looked a bit different yet still was merry and magical. We missed the large family Christmas party and what a fun time the cousins will have when they all get together again in person! We got to see both sets of grandparents, although nerf gun battles while wearing masks is a bit interesting. 

Christmas is full of magic for our boys, from our elf Bernie who visits for the season to the surprises from Santa under the tree. We were even gifted a kit to grow candy canes from seeds this year, which was so special to see. I'll tell you, there's something about a freshly grown candy cane!

Some of the magic is lost on Teddy, although he fully embraces the fun of opening presents. He seems to find that most exciting when they're not his and when he's not supposed to open them. We had to keep our gifts in boxes tucked in the back of the tree or they all would have been opened by Teddy. Yet, on Christmas Eve, he had no desire to unwrap his last present, so it stayed under the tree untouched. 

Teddy, however, fully appreciates the time with family at the holidays. He was so excited to visit with both sets of grandparents. He jumped for joy to see them and then promptly dragged them off somewhere to play with him (often the basement). The best was that when Teddy wanted to go outside, he knew exactly who to approach. He got his coat and boots on and then went to grab Grandpa's hand. If anyone was going outside when it was 15 degrees, it was going to be Grandpa. He also learned that if he was dragging Grandpa to the basement to play, he needed to let Grandpa grab his mug of coffee first. 

We were blessed to spend a bit of time with my grandpa, who is 98 years old. There's something so special to see him and Teddy interact. Neither of them listen (because one's partially deaf and the other is Teddy). Both think they are right no matter what. Both lack a concept of safety (because one's 98 and the other is Teddy). Yet that doesn't stop Teddy from hopping on Grandpa's lap, even when there's no room, or trying to push him down the stairs on his walker. (We put the kibosh on that one.) Teddy pushed Grandpa into the other room, and the two of them were in there alone arguing with each other over whether Grandpa would get on the floor. (As in, Teddy kept instructing Grandpa to get on the floor, and Grandpa kept refusing because we'd never get him up.) Teddy seems to realize Grandpa is not going to comply with all his wishes and instead climbs on his lap, pushes him around and shares toys with him. I  love watching the two of them because they've both come so far from when my grandpa would ask me, "When's he going to talk? When's he going to walk?" Teddy's learned to do so much, and my grandpa has learned to understand Teddy even without a word spoken. 

These two melt my heart (and crack me up).

Despite some rather chilly days, we managed walks every day of the long holiday weekend. I absolutely love being outdoors, particularly in the woods, so those were highlights of my days. Teddy also could happily spend most of his time outside and seems to have little regard for how chilly it might be. 

Everyone complained it was cold, but no one else would carry the portable heater.

All in all, it was a wonderful Christmas. We're so blessed and grateful for our health, memories made and all the good of the past year. 

Sitters and Semantics

I struggle to find the right word to define our childcare providers. I tend to lean toward childcare provider to give more credibility and professionalism to what they do, but sitter is a lot shorter. With the amount of time they spend in our home, nanny is also an appropriate word. The reality is they are an extension of our family.

We've been blessed with a number of amazing caregivers for our children in years past (Ms. Jenny, Miss Kaitlyn and Miss Melanie), but our reliance on and appreciation for our current two is at another level. Some of that may be the result of the pandemic and the need for tighter circles, but Miss Sigrid and Miss Bri are both incredible young ladies.

They take our crazy chaos and roll with it. They know that sometimes I'm more excited to see them when they arrive than the boys are because they ease our stress. We know the boys are completely cared for and in good hands, despite that occasional text that Teddy swallowed a nerf gun tip or fell down the stairs. (That happens with us, too!) They have done countless library or school pickups to save us trips and time out of our work days. 

We joke that Sigrid is our oldest child, so she joined family photos.

They spend countless hours playing imaginary with AJ and working through his moments of frustration when things don't go as planned. (That boy takes after me in that regard, and unfortunately life doesn't go as planned.) They encourage his creativity, help him with his handwriting and engage him in physical activity while making it fun (Wiii sports or games chasing around the house).  

They shuttle Teddy to every appointment and actively work with him through therapy sessions and then report back to us what to work on at home. They even update his "school" list with new things to work on. They are his primary teachers this year, working on all his academic skills at home through the course of their play and some intentional school work time. They give Teddy his medications and both know how to respond should he have a seizure. 

This was in 2019 when Ms. Bri made a Packers bike ride possible. 

With the weirdness of COVID, they've shared countless meals with our family and spent nights in our spare room to assist the next day (or to avoid their roommates in quarantine). We all enjoy each other's company during the meals, and another set of hands minimizes the risk of Teddy running off with a knife or something else dangerous or messy. They walk the line between playing with the boys and serving as an outlet for adult conversation for us. 

The sound of Ms. Bri's laughter always makes me smile because I know how much fun they're having. Ms. Sigrid has hauled Teddy on bike rides throughout the summer, with AJ pedaling along side her. They've done nature walks, hikes and road trips. They've joined us for holidays and family photos. 

They have made the pandemic better in so many ways, in all our interactions, their creativity, their safety awareness and their positive attitudes. They have made the pandemic possible by working the hours they do to allow us to continue working. 

When we count our blessings, Ms. Bri and Ms. Sigrid are near the top. For Christmas, Ms. Sigrid gifted us with a photo of her and the boys, so we don't forget her while she's gone student teaching ... as if that's possible. These ladies will forever be welcome in our home. 

Thanks to Variety!

Yesterday we got a package in the mail from Variety, a Wisconsin-based organization that supports families who have children with disabilities. Variety assists with everything from adaptive bikes to allow children with disabilities to just be kids. Variety also hosts a variety of activities to give these families a chance to enjoy different outings and activities that might not otherwise be available to them. Their goal is simple, according to their Web site: Enriching the lives of children with physical or developmental special needs and their families. 

Last year was the first time that we joined any of their events as many are further away from where we live. But they hosted holiday gatherings throughout the state, with one near us, at local movie theaters. Our family was able to go to a movie, visit Santa (and creeper stare at him as Teddy is fascinated by him but not so sure about up close and personal) and got a few treats for the boys. It was a great experience, although predictably Teddy watched very little of the movie. He enjoyed himself exploring the theater, and it wasn't a bit deal that he didn't sit nicely the entire time. It was a welcoming and inclusive environment, which was so appreciated. 

This summer they did summer picnic baskets, so we used that as an excuse for an outing to make the drive to pick up the goodies. The boys had so much fun with the treats, and we enjoyed a break from the usual pandemic routine.

The holiday gatherings didn't happen this year, but they offered Christmas goodie bags. We didn't want to commit to making the drive in case the weather was bad, yet they mailed a box of fun and goodies for both our kiddos to our house. We're waiting to dig into it until this weekend but are looking forward to it.

It's little things that make a big difference. Variety is less about the treats or goodies and more about the inclusion and acceptance. 

Teddy's Gift

 It might sound weird, but during these pandemic times I make a point to deliver goodies to others with Teddy in tow. These visits are brief, distanced or through glass doors and masked as best as Teddy masks. Sometimes, though, it's worth the glass barrier or greater distance because then they can see the gigantic smile on Teddy's face.

I know that for many who we visit the greatest gift isn't the little treats. It's that classic Teddy smile. It's him showing off a few new dance moves (or his boots during today's visit by shoving his foot out the window). It's the giggles that he gets when he's being silly, like dropping a ball for me to catch through the car window. 

These are ordinary moments in our lives, things we get to see daily. Yet I appreciate how much joy they bring to others who know and love Teddy. That's why he accompanies me on the visits or comes to the glass door to high five through the glass when people stop by our house. 

I may bake the cookies or bread, but I know those brief interactions with Teddy are the true gift that makes people's days brighter. 

It's a Small World

As I alluded to in my last post, we often have an instant connection with other families whose child or children have CDG-PIGN. Each of our children is incredibly unique, yet there are so many commonalities ranging from sleep struggles to heart-warming smiles. We've discovered that many of our children sound similar, walk or move in nearly identical ways and other common threads that are tough to find when your child is like no one else in your community. 

Thankfully the Internet allows us to connect with others across the world. One of the first families we met on our PIGN journey is from Poland. The mom is an incredible advocate for her daughter who started our Facebook group that has brought so many others into our world. We often get a beautiful Christmas card from Poland (specifically addressed to Teddy, of course) with snippets of Polish and English translations. I will say, once again, how impressed I am at how well others can communicate in English. But that's another conversation on how Americans, in general, lack the language skills many other countries foster.

This card is like a hug from Poland.

This is about gratitude that Teddy's diagnosis has made the world smaller, connecting us with others around the world who I consider our PIGN family. We've met a handful of these families and have high hopes to meet others. There's two little boys in New York that I would love to see interact with Teddy because I swear one of the boys is his brother from another mother. Then there's the two older boys in Florida that I'd love to meet as a glimpse into what the future may hold-I'm only mildly jealous Dave got to meet them in February. Oh, then there's the little girl in Germany who I jokingly call my German goddaugher. And the family in Poland. As you can tell, in reality, I'd love to meet as many of these children and families as possible. 

For those we've met, there's an instant comfort and understanding. There's no need to explain our children or apologize for their unorthodox behavior. For me, there's often a sense of awe as I marvel at the similarities or creative solutions other families find. So, when we can travel again, we'll continue to reach out to meet up with those along our path.

For now, we treasure these Christmas cards and the friendships that span languages, countries and oceans because of the common thread of a variation on a single gene that alters lives and forges friendships. 

A Loss We All Feel

Ironically my last post was titled Feel No Pain, yet pain is exactly what I feel right now. Yesterday, one of our PIGN kiddos, passed away. Although we never had the opportunity to meet this little boy or his family, we feel his loss in an incredibly personal way. He had a sweet smile, wonderful personality and was adored by his family. He had an older brother who loved him fiercely and interacted with him at his level, just as AJ does with Teddy. He had devoted parents who adored him despite the challenges that come with the intense needs of a child with CDG. 

His parents' grief touches my heart because it could so easily be our grief. I've felt this grief before when we've lost other children in our group. It doesn't get any easier. In fact, it gets harder. 

Although it's most likely that Teddy will die because of his CDG-PIGN diagnosis (or related reasons such as his utter disregard for safety), I manage to disassociate from that thought most days. It hit home when good friends of ours lost their son unexpectedly early this year. His dad made the comment that his son's genetic disorder didn't come with a shorter life expectancy like Teddy's disorder. That comment struck a chord with me, as did Dave's response when I shared it with him. Dave's response confirmed the reason he spends so much time worrying, and worries so much when Teddy gets sick, is that he recognizes that any illness could be the one that takes Teddy away from us. Dave believes this worrying will help prepare him should that day ever come, and I acknowledged I don't feel there's any way I can mentally prepare for that.

Despite having those conversations, that thought still too much for my heart to hold. So I continue to distance myself from those thoughts. Yet times like this hurt my heart for this sweet little boy, for his family and for what could be our future. I know there are others around the world, whose children have PIGN, who are crying the same tears and sending prayers and love. So if you're a person of faith, please include this sweet soul and his family in your prayers today. 

Feel No Pain

First, let me state for the record that Teddy does feel pain. His testing through NIH showed that his nerve receptors function fairly normally, and he will cry from pain. However, he has an extremely high threshold for pain unless he is tired or crabby. Those factors seem to impact his ability to tolerate pain, where we'll see tears. However, those tears never last as long as they would for most people.

The other weekend, I was making a quesadilla for my lunch in a skillet. Teddy had already devoured most of his lunch, so I quick ran downstairs to get him an orange. When I came back upstairs, he was holding a spatula, poking my quesadilla and looking quite proud of himself. I shooshed him away because I didn't want him to get burned (and candidly wanted to not have my lunch mangled). We both finished our lunches, if you consider Teddy eating part of my quesadilla me getting to finish my lunch.

About an hour later, I was playing with him and noticed a nearly 3-inch mark on his arm. I instantly knew that he had burned himself. He never yelped, cried, made any sound or had any noticeable reaction to burning himself. His burn even blistered, so it was a significant burn and will leave a dandy scar for at least a few years.

These are the things that are tough with Teddy. His safety skills are non-existent because unsafe things are fun. The more dangerous, the more fun. And when something is fun, he tends to get the giggles. The giggles diminish his ability to walk straight, much less stand up without falling down, which means it's even more dangerous. Combine that with a high pain threshold, and there's plenty of mystery marks we never quite know how they occurred. 

I wonder how many concussions he's had through the years, but I'm quite sure I really don't want to know. 

Happy (Belated) Thanksgiving

I know it's a few days late, but I hope you enjoyed a safe, blessed Thanksgiving. Our Thanksgiving looked different than years past, as was the case for many people. Traditionally Dave has spent Thanksgiving up north hunting with his dad and brothers (although last year he opted out of hunting for the first time in a long time). I head to my parents' house on Wednesday, spend a hellish night because Teddy is possessed and doesn't sleep, get up early to run the turkey trot with my brother (followed by beer and cheese curds because I live in Wisconsin) before heading home to celebrate with my family and the crew there for deer hunting. 

This year, for the first time, we bought turkey and planned to make our own Thanksgiving dinner. The advantage is we could make what we wanted: turkey breast, mashed potatoes, gravy, Grandma buns, green bean casserole and pumpkin churro cake. It wasn't just the 4 of us, though, because one of our childcare providers opted to stay in town for the holiday. She's an incredibly responsible young lady (and I'd say that even if she didn't read the blog), and she felt it was safest to stay within her circle rather than heading home to her parents' house for the weekend. We're truly grateful for all she does for us, including her conscientiousness to protect Teddy from potential exposure to COVID, so we happily welcomed her into our home for the day. Trust me, it makes our lives easier to have someone to help wrangle Teddy. She manages to dance the line between playing with the boys and having adult conversation with us, so we all enjoy the time together.   

Two turkeys did the turkey trot/bike ride this year.

AJ and I headed out for our turkey trot, with him on his bike, and enjoyed 5 miles of fresh air. The boys snacked on pumpkin pie before we started making our meal. AJ was enthralled by the parade, and Teddy periodically stopped to dance when the music caught his attention. We watched the dog show and provided our own commentary as we enjoyed a delicious meal. 

Our afternoon was rounded out by some time outdoors, a Christmas movie and some leftovers when we had a bit of room. Then we went to opening night of a choreographed Christmas light show designed and programed by an 11-year-old in a nearby neighborhood.

I know Thanksgiving was different for so many this year, especially those who lost loved ones. There's a few people who hold close in our hearts this holiday season, knowing that the joy of the holidays brings new waves of grief for them. Yet, we have so much to be thankful for and enjoyed a truly blessed Thanksgiving.

Progress, not Perfection

The other week Teddy and I went for a run together. Given that we live on a cul de sac road that heads into a busy highway, our runs always involve driving to another neighborhood to run. This time we parked at a local elementary school, the one where Teddy spent his Early Childhood year when he was a mere 3 years old. That was the year we went from both kids home to both kids in school, at just 3 and 4 (and then 5 since AJ had his birthday right after school started). 

That was right after Teddy had learned how to walk, so he was only taking a few tentative steps. He spent most of his time crawling, or actually bunny hopping, to get around. When his class went anywhere, he rode in a wagon every single time because he couldn't walk more than a few steps without falling. AJ would get so excited if he spotted Teddy's class, so he'd always wave and call out, "Hi Teddy!" I know that AJ was only in 4K, but it gave me so much comfort to have them riding the bus together and to know AJ was at the same school to look out for Teddy. 

Partners in play, running the streets and the playgrounds.

Back to present time, we decided to take advantage of the empty playground at the school near the end of our run. Teddy was so excited to be able to play, and he had to check out everything. The first thing he did was a rope bridge that was probably 10 feet across. I encouraged him to hold onto the sides, and he made it 3/4 of the way before he stumbled and fell. I asked him what he was going to do, and he used the ropes to pull himself back upright and finished the bridge. 

For most kids, a rope bridge is nothing noteworthy. But, I was so proud of him because he's come so far. The last time he played on that playground, he couldn't do anything without assistance. Now, he could do just about everything, except for monkey bars and the like, which are understandably tough. It was no big deal for him, just another wonderful playground to explore. For me, though, it gave me the chance to pause and reflect on all the progress he's made with a truly grateful heart. 

Epilepsy Awareness Month

 November is Epilepsy Awareness Month. Teddy's seizure disorder means he fits into this month, another one to celebrate along with Rare Disease Day and World CDG Day. Epilepsy gets its own month, though, and certainly is deserving since it affects a large number of people in significant ways. 

Yet, strangely enough, I don't think of Teddy as someone with epilepsy most days. I think there's a level of denial for me despite the fact that he's had multiple seizures. I think perhaps it's because the seizures are the hardest aspect of his diagnosis. 

I know I've written recently about how life with Teddy is hard. The developmental and cognitive delays are tough, particularly on some days. But every seizure stops our world for as long as the seizure lasts, and the aftermath lasts days, if not longer. There are few things more terrifying that I can imagine occurring than watching your child losing control of their body, becoming unresponsive and sometimes failing to breath. Then picture that happening periodically, unpredictably.

For us, we know that illnesses, particularly with fevers, can trigger seizures. That means we're hypervigilant during flu season (or a pandemic) and any time Teddy is ill. We're on alert, watching for a fever, watching for signs of seizures. It's common for Dave to sleep with Teddy when he's ill, just in case, because there's always that fear of a seizure while he's sleeping that we don't catch.

Teddy recovers from most seizures remarkably well, bouncing back with no loss of skills or apparent lasting harm. However, he's stopped breathing during seizures. He's had multiple seizures last more than 5 minutes. He's been intubated because either the seizures disrupted his breathing or the medication to stop the seizures diminished his breathing to the point that was necessary ... to this day, I'm still not clear because he never became responsive from that series of seizures until hours later when he was quite agitated to discover a tube shoved down his throat. 

We're used to daily life with Teddy, and we're grateful that seizures aren't a part of daily life for Teddy. For others with his diagnosis, seizures are an every day occurrence. Rescue medications for them are a weekly or monthly need, as opposed to our rare times with Teddy. 

But we know seizure activity can change over time. The medications that work so well may not always work their magic for Teddy. Puberty is tough, with all the hormonal changes, and tends to increase seizure activity. 

I pray to God that seizures never become such a regular occurrence that they don't' phase me. We celebrate the periods between seizures, yet acknowledge that more are likely. Generally, we say, "It's really going to suck when he has a seizure again." It's been nearly 1.5 years without a seizure, and we're so grateful for that.

So what can you do during Epilepsy Awareness Month, instead of ignore it like I usually do? Check out: https://www.epilepsy.com/make-difference/public-awareness/national-epilepsy-awareness-month There's basic information on what a seizure looks like and how to respond if someone has a seizure. That basic information can be critically important, yet it's truly easy steps. 

Mickey Mouse

 Apparently, Teddy's ambition in life is to be Mickey Mouse. A couple weeks ago, I found his Mickey ears lying on his floor. I thought it was odd, perhaps Dave and him had played with them, and put them back up on his shelf. They stay up there since they're a lovely embroidered pair from his running buddy that would be trashed if Teddy had his way with them for any amount of time.

Then, about a week later, I was trying to juggle work calls, AJ's school, housework and keep Teddy out of trouble. Let's just say that after Teddy thought we should turn the kitchen into a water park that I determined he needed a bit of a time out. I put him in his room to finish the dishes and decided I'd tackle a bit of school with AJ afterward when Teddy was quietly playing in his room. As AJ and I were reviewing his assignment, a clatter arose from Teddy's room. I flew in there, swear words perhaps a bit uncensored, to discover him standing on top of his 4-foot tall dresser holding onto his shelf that he had just ripped out of the wall ... right next to the shelf with the Mickey ears.

AJ helped me clean up the immediate mess since Teddy had disassembled a tractor figurine, and I had a shelf holding on barely with two screws. That incident made it clear that Teddy could scale his dresser, but we were perplexed how it happened because his dresser is out of view from his camera. I presumed he was hooking his leg on his window ledge to boost himself up, similar to how he scales the back of the Tahoe using the rear windshield wiper. (It's a miracle that hasn't broken yet.)

We determined we needed to figure out how to reconfigure his room because the dresser is important not only to hold his clothes but also to keep the wires to the camera and night light secure from his grasp. But before we could figure that out, I found him with Mickey ears on his floor again. Dave adjusted his camera, so the dresser was in full view. And a few days later, Dave saw him in the early morning hours amble to his dresser and do this:

I still can't believe he was using the tiny handles, that stick out less than an inch, to scale his dresser. That kid needs to try rock climbing when he's safely hooked into a harness. I bet he'd have a blast.

And Dave created a wooden box that is secured to his dresser, preventing him from getting a solid grip on the top ... at least for another year or two. In the one day that box didn't have a top on it, Teddy filled it with every toy in his room and was playing with an empty toy tote when I went in his room.

Never a dull moment with him. Ever.

It's Tough to Be Teddy's Mom

 Last week I ended up in tears one night. I'm sure it was a combination of stress from work, COVID and everything else in life. When I looked around our house, all I saw was the disaster of toys that is constant, unless I pick them up once Teddy goes to sleep. (And by toys, I also mean the random fork or bowl that he runs out of the kitchen holding and then deposits wherever he loses interest. And shoes all over the house.) When Dave asked me what was wrong, my answer was simply, "It's hard to be Teddy's mom sometimes." 

In many ways, Teddy is a toddler in a very tall and strong 7-year-old body. When he doesn't want to do something, it's challenging at best to redirect him. I can't easily physically redirect him like I could when he was younger, so we better stop our battles of wills before he becomes any stronger. When he wants something, it's harder and harder to keep him from it. We can only lock and childproof so many things, especially now that he's getting tall enough to reach our top cabinets. Any parent of a toddler knows that it's only a phase. The terrible 2s will pass, although any parent will tell you that 3 is worse than 2. There's no comfort when you live in a perpetual toddler stage with no end in sight ... at least not for the things that wear me down.

Don't forget that he has the coordination of a drunk monkey or a newborn giraffe. That wall there? Didn't see it and ran into it. The little flute in my mouth? Impaled that on the roof of my mouth when I fell on my bed. The stairs? Tumbled down them while mom watched but couldn't do anything because she was out of reach. Without the ability to tell us what hurts, beyond crying, it's tough to know whether he's injured. When you throw in the incredibly high pain tolerance (as in no tears for a full flight of stairs tumble), it's really tough.

Let's not forget the constant worry that Teddy will become ill, develop a fever and have seizures. After a few ambulance rides and an ICU stay, that's a constant worry. It increases every winter with flu season, and it's fair to say that living during a pandemic is not without it's fears. Even once a safe vaccine is developed, it still will be a concern, just as the flu is, because no vaccine is fully effective. We'll have to rely on those around Teddy to help protect him from himself because he clearly isn't capable of that (as I'm pretty sure one ambulance ride was caused by licking the plane seats on vacation to Disney). 

And I can't even start on all the things I fear he'll never do, like tell me I love you, speak, and all those "big" dreams we parents dream for our children.

When I start to spiral down these chain of thoughts, Dave's response comes to mind. "It's not easy to be anyone in Teddy's life." It's certainly not easy to be AJ, to be Teddy's brother. It's not easy to be Teddy's grandparents because they too have similar hopes for their grandchildren (and let's face it, their children as well). To see the struggles, to worry for all of us, is a part of their role as grandparents to Teddy. It's not easy for his cousins, with the chorus of "No, Teddy" or "No Teddy's allowed" as Teddy unknowingly destroys their creations or games. (And it's not easy for me as a mom to hear those refrains, even though I understand why they're said.) 

This imp pushes the limits and then rewrites them.

No, it's not easy to be in Teddy's world, at least not if you have a substantial role. But it is rewarding. He's learned to give the best hugs, not because he squeezes you tight and makes you feel like everything is all right. Rather, his version of a hug is most often going close enough to you that you can hug him, as though he's royalty allowing us peasants to be in his presence. When he's excited to see you, which could be anything from walking into a room unexpectedly to not seeing you in a longer period of time, his face lights up like Christmas day with genuine joy to see you. Teddy also redefines friendship and acceptance. It doesn't matter who you are, as long as you appear kind and smile, you are a friend. He smiles at so many people and reminds you how you can brighten a day with the power of a genuine smile. When something is fun or funny, he wants you to be a part of it to share in the wonder and pleasure. There is so much joy in such simple things in Teddy's world.  When he's finally sleeping, you can lay by him on those days that it's tough to be Teddy's mom and simply be with no judgement and pure love. 

This Kid ...

This child is going to be the cause of any and all gray hairs on my head. He is constantly in motion, moving from one thing to the next like the ball inside a pinball machine. (On a related note, one Halloween costume ideas was to make him a pinball and Dave and I the little flappers that whack the ball back into play.) It's no exaggeration that while you attempt to clean up one mess that he created that he's busy creating the next one ... or two or three. Some days there's victory when we manage to fix something he broke or re-engineer something to keep him safe, but it's almost a guarantee that something else is broken that day or needs re-engineering.

Thankfully, most days it's just things. This evening he toppled all the way down the stairs, and I'm not quite sure how because I only heard it rather than seeing it. He laid at the bottom for a moment, dazed, and then sat up, stood up and was off to see what was next. No tears at all.

He's resilient and determined. I thought I was stubborn, and I am. I'm just not sure that my stubbornness is a match for his. When he sets his mind on something, or determines that he's a comedian and that it's hysterical to climb something, there's no stopping him unless gravity wins (or occasionally I think his guardian angel gently trips him to let me catch up). 

Trust me, he was trying to climb higher still.

There's also no stopping his love for his brother. He adores AJ, and we're so blessed that Teddy has AJ for a brother. Teddy mimics AJ, for better or worse, and wants to be doing what he's doing. If AJ is reading in the car, Teddy needs to read a book. If AJ is writing, then Teddy needs a pencil and paper, too. Let's be honest, the book he was just reading will suffice as paper. 

Teddy loves to lay where AJ is to read and tonight copied his pose.

I'm not sure where else this is going, other than there are times that Teddy drives me absolutely crazy and exhausts my last bit of patience ... like when I'm wrestling him off his beloved tractor or trying to convince him to get up from a flop and drop. But then he looks at you with his impish smile and unaltered love and wiggles his way back into good graces. 

Brotherly love at its best.

A Milestone Marked by String Cheese

Never in my wildest dreams did I think that someone opening a string cheese would be notable, certainly not seen as a significant accomplishment. I couldn't have imagined how excited I would be, even to the point that I'd tell the world about it a week later while still grinning. 

But here I am, about to tell you the story. It's not an exciting story. It's actually quite unremarkable. I was preparing Teddy's lunch, and he helped himself to a string cheese from the refrigerator. I told him to give it to me to open, but instead he headed to the table by himself. 

It's not unusual for Teddy to self-serve food from the fridge. If it's mandarin oranges, he squishes them while clenching them tightly, not realizing we need to assist him in peeling them. If it's frozen waffles or pancakes, he runs off with the entire bag as frozen breakfast items are a staple in his diet ... still frozen, of course. If it's string cheese, he sometimes tries to bite it through the plastic and other times asks for assistance. 

This time, however, he sat down and proceeded to work on opening it by himself. He used a pincher grasp to hold each piece of the plastic and started to pull them apart. He got about 1/3 of the way done and then held it to me to finish. I told him he was doing great and to keep going. He continued pulling the plastic apart until he had it all the way done. Then he pried out the string cheese and promptly ate it in about 3 bites, par for the course for Teddy. 

I was amazed at his focus, his pincher grasp, his persistence to finish the task rather than ripping out the cheese as soon as the plastic was partly undone. All such simple things, but all combined to a big moment for him. 

And he did it while rocking his dad's stocking cap because that's how he rolls. 

Mr. Independent managed to open his own string cheese. 

See Something Positive? Say Something Positive!

 Last week, out of the blue, someone who Dave and I work with through our volunteer work with SkillsUSA (a career and technical skills organization) sent me a message. This year, she transitioned to teaching special education for the first time after a couple years teaching in a traditional classroom. It was just a simple message:

I just want to share with you, now that I am teaching early childhood SPED, that I absolutely love seeing all of the hard work you and Dave do to support Teddy and make sure he is able to be successful!

That certainly put a smile on my face! It wasn't solicited, it wasn't in response to anything and it was just a simple, genuine compliment. Those little words of kindness, which probably took a minute or two of her day, rippled kindness and happiness through my day. I'm still smiling thinking of it a week later.

So, my challenge to you is this: if you see something positive, say something positive! Don't be afraid to reach out to those you know and love or even complete strangers who are doing a great job. If you've never tried to navigate two toddlers through a store, I can guarantee you that many parents in that position could use a boost from someone recognizing their parenting. If you see a young child wearing a mask well, what better way to show that you notice how great they're doing than to compliment their mask? (It's probably best to just leave it at, "I love your mask!" not "You're doing such a great job wearing a mask unlike that adult over there who can't be bothered to wear one properly.") 

Spread a little kindness. Make our world better. 

Progress (and a Neurology Visit)

 Last week Teddy had his neurology appointment. He sees his neurologist every 6 months. Honestly, these are my favorite appointments to attend because his neurologist is absolutely everything you could ever want in a doctor: he's incredibly intelligent yet can explain complex matters in understandable terms, he genuinely cares about Teddy as a person and wants the best for him, he spends time educating himself on the little information there is about Teddy's diagnosis, he has incredible rapport with Teddy, he's understanding of our challenges with Teddy and he also cares about us as Teddy's parents. He's the only doctor who's ever asked me what's on my heart. He's also one of very few doctors or therapists or people on Teddy's school team who addresses me by name rather than "mom." That little thing speaks volumes because it means he knows my name and not just that I'm Teddy's mom. 

Anyways, Teddy has been practicing wearing masks. He's gotten better about tolerating them, although he still licks the inside of them, which really isn't fully effective. But he did absolutely fantastic wearing his mask in the waiting room for his appointment, even though they were behind schedule. He even wore his mask the entire time the nurse was checking him out, never attempting to remove his mask and allowing me to adjust it the few times it went into his eyes or below his nose. Since it was wet, I removed it once the nurse left as he'd been wearing it for 30 minutes. That's a world record for Teddy.

Rocking his mask and his mystery scar. 

When the doctor entered, I went to put it back on, and he was comfortable with his PPE with Teddy not wearing his mask. He also was willing to sit on the exam table with Teddy when Teddy asked (or more so told) him that he should sit up there by Teddy. I tell you, our neuro is one a million. You may never find the doctor who's as perfect a fit as ours, but don't be afraid to move away from a doctor who doesn't meet your need. That was our original neurologist who spent perhaps 5 minutes with Teddy and had no connection with him or us. 

As our appointment ended, our neurologist leaned in to Teddy and said, "I'm proud of you." I'm proud of Teddy as well and grateful for all who support him to be his best self. 

Ughhhh...

 It's hard enough being a parent. It's extra hard to be a parent of a child with special needs. Do you know how much I hate calling to schedule therapy appointments through the scheduling system? I hate calling insurance more, no doubt about that, but my 25-minute call to schedule therapy had me just about in tears.

Mind you, we waited probably close to 6 weeks for the insurance companies to once again deem that Teddy needs therapy. I guarantee you that 6 minutes of observation would demonstrate that need, but let's wait 6 weeks without him getting necessary services. Then, both his OT and speech approvals came through within a week of each other, so I could schedule all his appointments with a single call.

I started with PT to add whatever appointments I could since you can schedule 2 to 3 months out and things fill up fast, and then the same person could help me with OT. Except, she really couldn't help much. She offered me an appointment next week, which was great, but the next available appointment after that was December.

Yes, December. The authorization we just waited 6 weeks to get approves Teddy for 18 visits prior to December 31. Yet, the next available appointment except for one lucky cancellation is the month his authorization expires. So, I asked about other therapists, even though Teddy has seen Ms. Kathleen for 6 years. The response was, well who else can he see? I said I'd assume he could see any available OT, and she corrected me and told me that wasn't possible as they had different specialties. Guess what? It's a moot point since both of them are booked until December as well. So, I took what I could get, sent a message to his therapist to see if she could find any available times in October or November that aren't on her schedule and then got to hold to transfer to the person who schedules for speech.

Fortunately, scheduling for speech was simpler, with much more availability. That still doesn't change the fact that I hate calling central scheduling. 

To Find Joy ...

"Learning to live in the present moment is part of the path of joy." - Sarah Ban Breathnach

I came across this quotation this past week, and it resonated with me. It's similar to a saying I've heard before that essentially says to love the life you have, not the one you wished you had. When we can find joy and happiness in our present circumstances, we can appreciate what we have. Sometimes, that joy and happiness first needs us to accept our present circumstances, rather than spending our effort wishing things were differently. 

We had plans in August for a long weekend backcountry camping with AJ, our third year with this tradition. My parents had graciously agreed to spent quality time with Teddy to allow us to go. The week before our planned trip, we determined that felt too risky given the pandemic and changed our plans to spend a weekend with only AJ at our land. Then essentially a hurricane hit Iowa, and my folks headed there to help my brother with much-needed storm clean up. Completely understandable, yet still disappointing.

So we decided that even though it was a horrible time for me to be off work, we'd attempt to do a long weekend at the land with AJ last weekend as there won't be nice enough weather much longer for us to do that. All went as planned until it didn't, and we ended up at the land for the weekend with Teddy and my parents there. My folks were awesome and intentional to divert as much of Teddy's time as possible to allow AJ and us to do some of the things we hoped and planned to do, things that are impossible with Teddy in tow. We managed a hike up the side of the "mountain" that would have been impossible with no trail and Teddy on my back. AJ went through a box of matches and spent hours working on building fires from a flint and striker. We did some woodworking projects and cut plenty of firewood. 

This kid makes the best faces smooshed in the window.

AJ was initially in tears when our plans changed yet again, and my dad apologized profusely that the weekend didn't go as planned. I said it went how it went, and that was perfectly OK. When I asked AJ what the best part of the weekend was, his answer was "spending time with everyone." That wasn't part of the plan, yet it ended up topping his list (even though he carved a pumpkin with a machete). 

Still, I'm not going to lie. I'm disappointed I didn't get to check off one item on the wish list for the weekend: Sleep for 12 hours straight.

COVID Continues

You guys, normally I'm proud to be a Wisconsinite. We're the dairy state, so cheese and ice cream abound. We have four beautiful seasons (although winter sometimes wears out its welcome). We don't have nasty big critters like grizzly bears or panthers that want to eat us alive, nor do we have many smaller, nastier critters like poisonous snakes, scorpions or spiders. We're also Midwest nice, which means little things like holding doors for people, waving at neighbors (or anyone in rural Wisconsin), lending a helping hand and more.

Unfortunately, "more" doesn't include wearing masks (despite a state mandate), physical distancing or limiting our social gatherings. Wisconsin is breaking COVID records daily and weekly, topping national lists for hotspots, and we're feeling the impact. Our hospitals are enacting crisis plans as they're near or at capacity, our schools are closing their doors, and the impacts are close and personal.

Last week Oshkosh schools transitioned to virtual learning. That had no impact on us as AJ was already in virtual learning for the school year, and Teddy's 60 minutes a week are still intact for now. Last week our church did virtual sessions for catechism due to exposure. Again, that had no impact on us because AJ is doing a homestudy program, thankfully with my mom, via technology. See the pattern here of how we've intentionally reduced our interactions and risk?

Yet, despite all our efforts, COVID still impacts us. We have two in-home childcare providers that ensure the boys are alive and well while we work. We're extremely blessed to have two young ladies who are beyond wise for their years, care deeply for our children and take COVID very seriously. Still, two weeks ago, one of our providers tested for COVID, which meant she was unable to work until she was cleared ... and that we spent much of our time worrying until she was cleared. Ironically, the same day she was tested our other provider learned that her two roommates were both quarantined due to known exposure. Fortunately she hadn't had direct contact with them since their exposure, so she was still able to work but didn't have a good place to safely quarantine from her roommates. So, she temporarily moved in with us into our spare bedroom that was overran by AJ's LEGOs. 

Two of my my kids' favorite people. I think I like them even more than my kids.

It worked out remarkably well for us because all AJ's LEGOs were picked up, perhaps not perfectly, but the room actually had space to move around. Our provider had a safe place to quarantine, and our boys absolutely loved having some extra time with her in the evenings. I don't think Teddy fully realized that she was living here, as she would often intentionally "disappear" before bedtime to ease with that transition. The look on Teddy's face when she came upstairs in the morning was  priceless each time. We're grateful she was willing to take us up on our offer of a safe place to quarantine as it certainly made our lives easier.

We continue to be fortunate that most of our family and friends have been safe from COVID. The last few weeks have been stressful, but we'll deal with the inconveniences and the stress and remain grateful for our blessings. 

I Remember When 2 a.m. Was Bedtime ...

 ... a long, long time ago the semester I lived in Spain. Even when I returned stateside, I had no desire to be awake at 2 a.m. That hasn't changed in all the years since college as I firmly believe 2 a.m. is meant for sleeping.

Teddy, on the other hand, determined that 2 a.m. was the perfect time to wake up Sunday morning. We were at the land, and he began stirring and moving around. He was sleeping on the bed next to Dave, and I was on the couch.  I checked my watch and realized it was 2 a.m. and hoped he'd settle back to sleep quickly. Then I heard him cough and realized we had forgotten to bring his rescue medication for seizures down to the land. Immediately, my mind was wide awake piecing together that obviously since our childcare provider was being tested for COVID that Teddy was probably sick and that's why he woke up, he had a fever and would start seizing and determining which one of us would call 911 to get an ambulance to meet the other en route to the hospital 20 minutes away. All because of a single cough. I spent the next 30 minutes worrying about all of this for two reasons:

1. When your child has taken two ambulance rides due to seizures (one of them intubated), the fear of illness and the associated seizures is very real. We spend every winter on heightened alert because of flu season. We worry that when Teddy wakes up in the middle of the night that its because he's ill and has a fever. Trust me, there have been too many times he's woken up in the night for us to discover her with temps over 100. When you add in potential COVID exposure, your mind goes to bad places, no matter how much you rationalize that potential exposure as minimal. With all these fears, the obvious thing would be to check him for a temperature immediately, right?
2. Except for the fact that when Teddy wakes up in the middle of the night, he will not settle back down if you acknowledge you're awake. Once he realizes you're awake, then he wants to play. Or wake up everyone in the room. Or go for tractor rides. Or do anything but sleep.

At 2:30, I heard Dave give up and acknowledge he was awake. Then I spent the next 30 minutes trying to tell myself I could fall back asleep because Dave would check Teddy for signs of illness. Dave attempted to get Teddy to snuggle back to sleep to no avail. 

So at 3 a.m. Teddy and I headed out to the Tahoe. That might seem odd, but middle of the night drives are fairly common to get Teddy asleep or to occupy him while others are trying to sleep. We drove (often at idle speed) around the land, down the road to the county park and back around the land. After an hour of driving, I was hoping Teddy might be tired enough to sleep because I certainly was. I knew by the occasional giggle that he probably wasn't, but it was worth an attempt.

After 10-15 minutes of blatant disregard for sleep, Dave took Teddy back to the Tahoe. He put in a movie for Teddy to watch, reclined the seat and attempted to get some sleep. (I had offered to go put a movie on for Teddy in the vehicle, but I planned to lay down a seat, bring a sleeping bag and pillow and snooze with Teddy securely strapped in his carseat. (It's one of the few ways that Teddy is truly contained, so it would be safe to rest.) I got to go back to bed for a few hours, until I woke up at 7 a.m. and texted Dave that I could take over (out of a sense of obligation, not because I was well rested). He brought Teddy into our garage, and Dave got a couple more hours of sleep while the boys and I ate breakfast, went for ranger rides and even a short tractor ride. 

Teddy fared remarkably well that day, only a few minor meltdowns and some whining on the drive home. He was exhausted but had no desire to sleep until he finally crashed at 7:30 p.m. How that child can manage to be awake from 2 a.m. to 7:30 p.m. with no caffeine is beyond me ... heck, me being awake as much of that time as I was even with caffeine is beyond me. 

2 a.m. to 2 p.m. and going strong. 

Happy Birthday to the Best Big Brother

Nine years ago today, our dreams of becoming parents came true when AJ was born. With a little help from a lot of people, we celebrated his birthday quarantine style so well that he declared it to be the "best birthday ever!" I had reached out on Facebook to ask for a little extra love on his birthday, specifically cards to brighten his days. I intentionally said he didn't need presents but said that if folks wanted to tuck a dollar or two in the card that he's saving money for charity. The kindness and generosity of our family and friends means that he now has right around $100 to donate to the charities on his list. 

Happy 9th birthday AJ!

We still are quite careful regarding COVID and precautions, so that meant a birthday party with our two childcare providers replaced the usual gathering with all our family. Teddy was ecstatic to have both babysitters here at the same time and couldn't decide who he wanted to boss around with so many different options. We still did very small family celebrations, which spread the celebrations out to celebrate with each set of grandparents, and we have a virtual party planned to spend time with his cousins. There were a handful of masked visits, including much love from our myTEAM Triumph family. Masks might hide the smiles, but trust me, they were there for every visit. 

MTT friends surprised us with a cul de sac distanced birthday celebration. 

Today was an incredible day celebrating an incredible boy. We're so blessed to have AJ as our son and Teddy's big brother, and we're so grateful to all who made this day special for him. 

Guest Blog Post by AJ

 AJ wanted to do a guest blog post, sharing how Teddy hurt his ear from AJ's perspective:

We were setting up the Yi camera, and I checked on Teddy. He was clanking on a piece of wood, and 5 minutes later *CRASH* I was worried on what he did now, and the squatty potty was tipped over. The wood was on the window cell, and it was in his ear. He fighted his way out, and he cut his ear. It was bleeding, and we cleaned him up and saw cartilage, which gave me the creeps and got me nervous.

That sent us to the hospital, and he played on the family tablet on the way there. We got there. They set up my room, and he got a spring light toy, then got numbing medicine (which did not help much). Then they gave him the drowsy medicine, and he needed a headlock, and he hated when the curved needle went in. I built a Minecraft jail and palace and a get away home. He had to get 4 stitches, and then on the way back to the land, we cleaned up and went home and then finished the rest of the day. Then dad slept with him for bed.

First Day of School

 After countless phone calls and e-mails (and discovering that the director of special education for our district knows Teddy by name and personality) and an IEP meeting two days before school started, we had our plan in place for Teddy's education this year. We're still working on approvals for outpatient therapy (particularly getting OT extended and speech approved for the school year), but thankfully PT is set for the rest of the calendar year. Teddy has settled back into his music therapy sessions without missing a beat. (Pun intended.) Our childcare provider is working with him on academic activities daily at home, which he's excited to do because it's new materials to explore. It's super fun to watch him concentrate on an activity because his tongue either juts out of his mouth or into his bottom lip, so it's easy to tell when he's truly focused. 

This week was the first week Teddy went to school for his academic time. If you recall, we had advocated for homebound education for Teddy due to all the risk factors, but that was oddly enough deemed too risky by the school district. So, we're doing homebound at school, which means that twice a week Teddy goes for 1:1 instruction in a designated room. We had coordinated with his team where that room is located, how it would be sanitized and that PPE would be worn by his teacher. 

We felt comfortable with all the pre-work done as his school designated a room immediately inside the building, so Teddy doesn't have access to take off to explore the rest of his school. His team even took the time to explain, without us asking, the two different levels of cleaning products they will use to sanitize the room prior to Teddy's time learning there. Still, I was a bit surprised when his teacher commented on the first day of school about his PPE and pleasantly surprised when he sent a photo at the end of the day.

Guys, Teddy's teacher wore full personal protective equipment (PPE) to teach Teddy. He wore the same level of PPE that is used for interacting with known COVID positive cases in medical settings (aside from a cloth vs. surgical mask). He wore a mask, face shield, gown and gloves. While this might seem like overkill (and candidly was more than we were expecting), this all but ensures that even if Teddy's teacher has COVID that Teddy would not be exposed to it. And you might not be able to tell from the picture, but I can tell you that his teacher did this with a smile to support Teddy with his learning. 

Teddy was a bit intrigued by the PPE but still had a great session.

Right now it feels like our world is returning to normal with little regard for those who are most vulnerable to COVID. We often feel like we're in the minority in doing the right things like wearing a mask, physically distancing and keeping a small social footprint, but we don't feel like we have a choice to keep Teddy safe. That gets disheartening, but the effort made by his school and team to safely educate Teddy truly gives me hope and warms my heart. He matters to them. His education. His safety. They're working with us to make it safe for Teddy to be in this world, and we are so grateful for their support. 

Often I hear of how people are tired of the PPE they have to wear to do their jobs. I'm sure that no teacher expected to wear a mask to school, much less full PPE like this. Life is different right now. It won't always be different, but we'll always be different because of it. We'll forever remember the helpers and those who eased the stress of these challenging times. (And we'll probably at least know how to properly wash our hands.) 

Back to Sch ... Home

School looks different for every child this year. That's a given, whether your child has significant disabilities or an IEP. Schools have put considerable effort into planning how to safely return to educating students, whether in person, virtually or some combination. That's quite the challenge in and of itself, without taking into consideration the individual needs of students like Teddy.

We've been in discussions with the school district for 1.5 months with more questions than answers on what school might look like for Teddy this year. We all mutually agree that:

1. Teddy will not physically distance. It will require hands-on physical redirection, frequently, to make any effort at distancing.
2. Teddy will not wear a facemask. We are practicing with him to get him to tolerate one for short periods of time, with the goal of being able to wear one appropriately into and out of appointments. The mask still ends up in his mouth, which negates the entire purpose. 
3. Teddy will not be able to integrate with his 2nd grade peers this school year, which is a critical part of his education.
4. Teddy's seizure disorder means that COVID presents a high risk to Teddy. We've taken ambulance rides because of strep throat and spent time in the ICU with Teddy on a ventilator for a perfect storm of other ordinary illnesses. We don't want to see what COVID does to Teddy.
5. Teddy is not a candidate for virtual learning due to his attention span, desire to manipulate technology and overall comprehension.

I didn't expect the school to have all the answers, so we began piecing together the best plan we could for the school year. Although the school district is willing to accommodate Teddy's inability to wear a mask and distance, that means they will also accommodate those needs for the other students in Teddy's classroom. That means he'd be entirely unprotected, which is problematic given #4. We are still working on piecing that plan together, even though school begins tomorrow. 

One of the easiest starting points is to address therapy, as Teddy gets OT, PT and speech through the school district as part of his IEP. Rather than wait for the school district to propose how those services could be done, knowing that virtual was likely the option we'd hear, we are pursuing outpatient therapy services. Teddy has attended through Children's Hospital all summer safely, and we're comfortable with the precautions and measures taken there. The challenge is in obtaining approvals through both his primary and state insurance as typically insurance won't cover outpatient therapy during the school year due to duplicity in services. Right now, OT is authorized through late September, PT is authorized until the end of the calendar year, and speech is pending. The unfortunate part is that authorizations only go for so many sessions and/or through a certain date and then need to be reapproved. That means there's often gaps in services, which doesn't happen in the school setting.

Anticipating that Teddy wouldn't be in the school building, we also reached out to his music therapy location. We had put services on hold through the pandemic thus far, but we went through their safety protocols and Teddy's needs. We feel comfortable with the measures in place and the risk there, so we are resuming music therapy this week as part of Teddy's curriculum. He adores music (and has the best dance moves) and really benefits from the sessions as they address fine motor, gross motor and speech all using music. 

With all the outpatient therapy sessions, the only remaining pieces were actual academics and the minor detail of childcare. For academics, we advocated for homebound school, which I never had contemplated prior to this year. Essentially, homebound education is for children who are too medically fragile to be in the classroom where a teacher comes a couple times a week to the home to provide instruction. This required obtaining a letter of medical necessity from Teddy's doctor. 

The response from the school district is that homebound education is deemed too high risk during the pandemic, so it's not an option. They could do his homebound instruction virtually, which again isn't an option due to #5 above. I know it's out of the control of everyone whom I spoke to, and I understand the reasons it's deemed too risky for the school staff. But it's completely asinine in my opiion that it's too risky for 1 person to come to our home wearing PPE but it's OK for me to send a non-masked, non-distancing Teddy to school with 400 of his closest friends. 

So after an IEP meeting last week Friday, the plan is for Teddy to begin his academic instruction next week. He will attend school for 30 minutes twice a week for 1:1 instruction with a special education teacher. His team did a fantastic job in finding a space that is right inside the entrance of the school, so Teddy will literally walk into the building and right into the room, which will be sanitized prior to his visits. His teacher will wear PPE to protect himself and Teddy. His teacher will also provide us with worksheets, activities, art projects and the like to work on at home when he's not in therapy. 

We're going to focus again on a visual schedule for Teddy, which we attempted earlier this summer until he dismantled it as a toy rather than tool. We will attempt each day to focus at least on one activity for reading, writing his name, matching activities, turn-taking games, colors, numbers and a handful of other things within our play. We've put together a school cart for Teddy that can conveniently be rolled into the bathroom and locked there when he attempts to dismantle and do everything at once. (Our bathroom is the only sacred place on our first floor where we can lock the door to keep Teddy out. We need a larger bathroom.) I'm hopeful that with time and repetition that we'll be able to settle into some routines to work on these skills throughout the days. The fact that we are rotating two childcare providers with us filling in a few gaps will make it tougher from a consistency standpoint but will help with our patience hopefully. (And when our one childcare provider finds full-time employment elsewhere, I will cry. I'll be happy for her, but I'll cry.)

It looks so nice ... until Teddy touches it.

Do I wish Teddy got more than 1 hour of actual instruction a week from the school district? Absolutely, I feel like he deserves more. But I also recognize that if we felt it was safe for him to attend school that he'd likely be attending 5 days a week, possibly even when the rest of the school moves to virtual due to risk. The district understands that children with as significant of needs as Teddy has desperately need that structure and support of daily routines and reinforced learning to not regress, much less learn.

I feel that puts tremendous pressure on us and our amazing, phenomenal childcare providers more than ever to do our best to be occupational therapists, physical therapists, speech therapists, music teachers, art teachers, adaptive gym teachers, special education teachers, chauffeurs and playmates ... while ensuring AJ gets the academic and emotional support he needs. We will make it work, and we'll strive to have grace with each other and ourselves. At least this year should make any future back-to-school season a piece of cake.  

If You Give Teddy A Mask ...

 ... there's a chance he'll wear it. There's even a chance he'll wear it properly. That chance is slim to none.

There's also a chance he'll lick it. There's even a chance he'll chew on it. That chance is the one you'd bet on if you were in Vegas.

We are practicing mask wearing with Teddy because it would be extremely helpful if he could wear a mask, even for short time periods, like waiting for his therapy appointments or potentially school visits for brief academic sessions. (School is still an unknown for us, which is why I have yet to post. I don't have much nice to say about the fact that school starts in less than week, and sometimes I try to remember my mom's advice to not say anything if I don't have something nice to say.)

Teddy understands the concept and shows some willingness and even interest. But the time periods he'll wear a mask are extremely short and require redirection to keep it in place even for those short periods. The latest practice attempt at home lasted 2 to 3 minutes, and he really enjoyed watching himself wear it in the mirror. He thought he looked pretty cool.

Thanks to the Rare Diseases organization that sent us this cool mask!

And then he attempted to eat it. Practice session over. I washed the mask because it was remarkably slimy from all his drool despite being completely soaked from chewing on it. Rinse, dry, repeat again tomorrow.

Rinse & dry the mask, not Teddy.

Early Mornings that are Worth It

I used to like mornings. I would define myself as a morning person and enjoyed that quiet space when I could be productive, get a head start on baking projects, go for a run with friends or watch the news. But with my children, Teddy in particular, there is no sanctity in mornings anymore. Both my boys are early risers, but AJ is independent and knows better than to intentionally wake me unless he needs something (although sometimes he's noisier than he intends). Teddy, on the other hand, is contained to his room until we let him out. Sometimes our efforts to entertain him with toys that we set in there after he falls asleep works. Other times he empties his clothes drawers, despite the child safety locks, and dresses himself. Or takes the picture off his wall that he shouldn't be able to reach. Or kicks at the wall or the door until we come to do his bidding. There's nothing peaceful about mornings with Teddy, and there's definitely no sleeping in with him, unless Dave and I rotate turns on the weekends.

But, Teddy usually wakes up happy and rewards you with smiles and giggles, along with his demands. The challenge is that he wakes up incredibly early at our land. What's incredibly early? 4 a.m. is the earliest ranging as late as perhaps 5 a.m. I think his sleep cycle is really light then and that at home he can often doze back off, or at least roll around half asleep for a while. At the land, he rolls around and discovers there are others in his bed, so it must be time to play. 

Dave deserves sainthood because he's the one who usually takes Teddy in those wee morning hours. They often head to town to fill up the vehicle with gas, drive around our property looking for deer and generally just kill time until it becomes a more acceptable hour. I've offered to help, or at the very least tag team, so that Dave can get some additional rest. He finally took me up on that offer this weekend, so he took Teddy from 4:30 to 6:30, and I took Teddy from 6:30 to 8:30. 

Such pretty mornings. They'd still be pretty at 6 a.m. instead of 4 a.m.

Teddy and I first took a drive around the land in the Tahoe, mostly because that's where Teddy was when Dave handed him off to me. Then I loaded him into his running chair to go for a walk. We checked on the fire and walked down to the river. After about an hour, we headed back to the garage. We played LEGOs inside our hanging tent chair, which is large enough to fit me, him and the LEGO bin, but not with much room to spare. We had breakfast and finally woke up Dave for some family cuddles.

Early morning smiles. I think he's happy to have a stick to whack me.

For someone who wakes up at 4 a.m., Teddy handles it much better than most people would. He is in remarkably good spirits for the day and loves being at the land. More than one day gets pretty tiring, but it's amazing to see how well he holds up. If only we had his energy ...

We Won the Lottery 4 Times!

It's the time of the year where my stress levels naturally rise, wondering about the school year and what will happen. This year defies all odds, as we're looking for full-time in-home childcare who will take COVID seriously and follow precautions outside of work to keep our family safe. And that childcare provider is also filling in as the virtual learning supporter of a 3rd grader on top of whatever Teddy's education looks like. Right now, Teddy's schedule includes traveling to Appleton or Neenah for therapy 4 times a week. So this childcare provider needs to be an educator, therapist, chauffeur, entertainer and childcare provider for a non-verbal child who never stops and rarely listens. Sounds simple enough, right?

Actually, it sounds like an incredibly impossible order ... but I have faith. As I look back at the last 5 years, we have been blessed with absolutely incredible childcare providers. 

The first of our in-home childcare providers was a nursing student, Miss Katelyn. Miss Katelyn was fun, great with both boys, reliable, dependable and made our lives so much easier. We discovered that nursing students were a great match for Teddy's diagnosis, as the fear of seizures that got him kicked out of one in-home daycare, was not a concern for them. (And, thankfully, we've never needed that skill set when he's been in their care.)

Miss Katelyn was so amazing that when she could no longer work all the hours, we were concerned that she left too big of shoes to fill. But she referred her friend, who quickly became Miss Melanie to our family. Like Miss Katelyn, she was reliable, dependable, fun and a great fit for our family. She ran a slightly tighter ship, leaving our house as clean as it started every time, which is no easy feat with Teddy. She also diagnosed our boys successfully with impetigo, when we thought they just had a rash that would go away. Whoops! Unfortunately for us, both Miss Katelyn and Miss Melanie graduated and moved along to become real nurses. I'll remain forever grateful that after our ICU stay Miss Melanie was willing to come work with Teddy again for a day when we needed her. 

We had someone for just a couple weeks, who didn't work out well at all, before we landed on another friend referral from Miss Melanie. Her friend was pursuing a degree in human services but had her CNA license. That was the start of our time with Miss Bri, which thankfully hasn't ended and has just had a few breaks. Miss Bri took the bar and raised it even higher. She took the kids on so many adventures, heading to her family's lake house, inviting us to her graduation dinner, journeying to Bay Beach and taking the boys to the water park as she'd recruit friends to help her watch AJ. She spoiled our kids, not by giving them things, but by giving them great experiences and so much fun. We convinced her to stay on after she graduated for the summer and then miraculously convinced her to come back for another summer after that. Although she's looking for full-time work in human services now, she still does respite for us and is going to help us out temporarily as we start the school year.

If you have human service job leads, I know someone pretty awesome.

We transitioned to an agency for childcare during the school year, which worked out well for the first year but became a struggle with staffing last school year. They actually gave us notice right before Christmas, which meant we were looking for another agency this past spring. We found one, used them for 2 weeks, and then COVID happened. That meant we needed in-home care and needed it quickly. Fortunately one of Teddy's paraprofessionals had mentioned her school schedule didn't work for her to continue in his classroom but that she'd love to still see him. I offered her the chance to do respite, which with COVID evolved into childcare multiple days a week, which then became full-time summer employment. Miss Sigrid helped us through that rough transition to at-home learning and had as much success with Teddy as anyone would, especially with her background from working with him at school. 

Miss Sigrid has truly become a part of our family, especially with COVID. She took the virus as seriously as us, so we had no concerns that she would put us at risk. (Seriously, I think once she made it 5 weeks without grocery shopping!) We couldn't go out to eat, so we'd invite her to stay occasionally for dinner, which made it more fun for us and saved her on that grocery bill. She's been limited in the fun things she can do with the boys, but that doesn't stop her from making every day as fun as it can be. She's willing to pull Teddy along for bike rides, take the boys on walks to explore and has kept the peace during the times they drive each other crazy. When your circle of human interaction without a mask is as limited as ours, it's amazing how quickly she becomes a part of our family. 

So why do I know things will work out for the fall? It helps that we have Miss Sigrid helping as much as her school schedule will allow, which covers at least 16 hours a week. It also helps that Miss Bri will help out at least temporarily another 16 hours a week. That only leaves us with two mornings to juggle, which we'll figure out. But I also know things will work out because there's no way we're so darn lucky to win the lottery with our childcare four times in a row. God entrusted Teddy (and AJ) in our care, and he's been faithful thus far. He will provide for our childcare needs ... we just need to put forth the effort.