Naughty Versus Nice

I swear I was good this year, but apparently I made the naughty list. And somehow, miracle of miracles, Teddy made the nice list?!?!

That must be the case because what else could explain Santa bringing this to our house for Teddy?

Not-so-little drummer boy.

Yep, that's right. Santa brought Teddy a full drum set. 

Santa, aka Dave, saw how darn happy and content Teddy was at Thanksgiving playing the drums at my aunt's house for several hours. We've never really spoiled Teddy for Christmas, and, honestly, he's gotten very small gifts several years because there's been nothing we could think of that he would enjoy much. But Santa made up for that this year. 

Pure joy in the form of non-stop drumming. Don't worry, he took turns and made everyone play the drums. While they've lost a bit of their luster (literally and figuratively) in the past week, they are very much loved by Teddy. We know that every new visitor to our house will be shown the drum set, given a performance and then a lesson in proper drumming according to teacher Teddy. 

Last year felt very much like getting through Christmas was the goal. This year, I think we all felt a bit of joy. 

Holiday Happiness

This year has brought so much more joy than last year, which was, quite simply, hard. It's been so good to enjoy the holiday season with less sadness and tears, to read our story a day until Christmas, celebrate St. Nick's, head to multiple holiday concerts, and decorate with our big kids. 

Yes, AJ is taller than me.

St. Nick brought us ugly Christmas sweaters. The great thing about the boys getting older and bigger is that now I can steal their clothes, so I have even more holiday sweaters to wear! (The downside is I can never find my clothes because they get sorted into their drawers!) St. Nick even brought all our big kids holiday sweaters, which will make for hopefully some fun holiday pictures.

We also continued our 3rd year of Christmas baking and decorating with the big kids. It makes the double batch of peanut butter balls go much faster with more hands, plus Teddy is all in to hang with everyone else. We always have lots of laughter and end up with goodies made for us to enjoy (as much of my baking in December is for the bakery until I get through my last farmer's market). 

Teddy worked on that peanut butter ball for 45 minutes.

It's not the presents or the gifts that matter, but it's the presence. The time spent together with family and friends who become family. The laughter, shared stories and ability to lift each other up. We're so grateful that Teddy's care needs have helped us build this incredible tribe. 

Our cookie and candy crew is all smiles (and aprons)!

Santa & Smiles

Teddy loves trains. Teddy loves Santa. Teddy loves the Santa train we have done the last 3 years. We snag extra brochures, so he can talk about it all year long (because his way of talking usually destroys a brochure after a few days of incessantly showing it to everyone). 

This day trip is always a highlight of our holiday season. It's perfect for our family because it's a bit low-key, not usually jam packed and ends up being a bit more sensory friendly for us. The hour-long train ride includes carolers, official ticket punching and a visit from Santa and Mrs. Claus, along with a treat from their elf helpers. 

Teddy loves the jingle bells of the carolers. And the fact that most of them are teenage girls.

Teddy is drawn to Santa, and he invited Santa to sit next to him. He was also trying his darndest to convince the elf to squeeze into the foot of space between him and Santa, but AJ took one for the team and squished in there. I felt this Santa was extra attentive to Teddy this year, giving him (and AJ) plenty of time before moving down the train.

Teddy was still trying to convince the elf to join him.

AJ had prepared Teddy's talker for him, so Teddy had several buttons he could use to engage with Santa. He told Santa what he wanted for Christmas (twice to make sure he heard him) and told Santa his name, along with sharing that he loves trains. This was the first time Teddy used his talker to talk directly to Santa and, candidly, his first time using his talker in public. 

It had snowed quite a bit the night before, which made the train ride beautiful. It's one of the traditions we have that aligns with many other family traditions. The only difference is our children our older, but Teddy will enjoy the magic of Santa for years and years to come. 

Merry Christmas Eve

There's something nostalgic about trains at Christmas time. Whether it's the somewhat more recent Polar Express or the idea of a train around the Christmas tree, trains simply go with Santa. This year one of our gifts for Teddy was to head to the Mid-Continent Railroad in North Freedom, WI for the Santa Train. We did this in early December, and it was the perfect family adventure.

Teddy was so excited about this trip. Though he can't talk, he told everyone who came to our house about the train ride by showing them the brochure and pointing specifically to the Santa picture. This was for a couple months leading up to the adventure as we had the brochure on the fridge. 

The trip didn't disappoint for him, as he was so excited when we pulled into the train station. The only disappointment for him was that the museum had hardly any train cars you could climb on to explore, unlike the one we visited in Duluth earlier this summer. He thought he should be able to explore every car, even trying to sneak onto a few because that cord across the stairs is clearly not meant for him. 

The train ride itself was pretty darn perfect for us - about 1.5 hours with enough going on to keep Teddy mostly in his seat. As a parent, I appreciated that all that was advertised was a quick visit by Santa, so everything beyond that was a pleasant surprise. Santa started in our train car and made his way with Mrs. Claus to take pictures with every family and have a quick chat. Of course, Teddy invited them to sit down by him. 

All smiles for Santa and Mrs. Claus.

After Santa moved along, we heard a reading of T'was the Night Before Christmas and got little stockings with a few treats for the boys. Oh, we also got a rubber duck dressed as a conductor that Teddy thought was pretty cool. 

Showing off his rubber ducky.

The train only went a short distance down the line before it turns around, so we didn't cover a lot of ground, but it was very scenic. On the way back, just as Teddy was getting a bit squirrely, we had a group of high school students come into our train car to sing carols. Teddy thought that was the best to have a group of pretty girls (with a few guys, too) standing right by him, smiling and singing to him. His absolute favorite was Jingle Bells because he got bells to play through the song.

It was a truly wonderful experience, something we all could enjoy. Afterward we checked out a candy store on the way to our second main destination, Buffalo Phil's, a restaurant in Wisconsin Dells. We had wanted to check this place out for a few years due to two features: food delivered by trains and all the Lego displays. Let's just say neither disappointed for AJ, especially the entire Star Wars Lego room with nearly all the Lego Star Wars in existence. However, Teddy was freaked out.

Now, to be fair, eating in a restaurant with Teddy is usually a quick affair as he has no willingness to sit still for any amount of time, wants to socialize with others, etc. Sometimes he's just in a mood, slithering out of the booth and seeming to intentionally create chaos. This time, though, was different. Something he saw or experienced in the restaurant freaked him out, whether it was all the life-size characters or who knows what exactly. But after our drinks came and he went for a walk because he was a bit antsy and there was a lot to see, we could barely get him back in the booth. In fact, he and I stood by the booth just waiting to have our food come to put it in to-go boxes for him and Dave because all he wanted was to go back to the car. 

This type of thing is happening a bit more, where he gets genuinely freaked out and needs to leave someplace because it's simply too much for him. While it's frustrating to not be able to enjoy a restaurant we thought was about as close to a sure thing for our family as would exist (with the trains), it's understandable when it's truly fear versus just being sassy, so to speak. I wish we could figure out, though, what triggers these moments of freaking out to better navigate them.

Regardless, it was a fantastic family day and definitely something to repeat! We'll just skip that restaurant next time. 

Merry Christmas ... Better Late Than Never

Christmas has come and gone, and it's been weeks since I last posted here. We managed to have Influenza A run through our house, taking out Teddy, followed by Dave, then AJ with me on the tail end. Add in the business of bakery in the height of the holiday, plus our own holiday gatherings, and it was quite the December.

We wrapped up our illnesses and bakery baking the week prior to Christmas. We enjoyed a few holiday traditions: checking out Christmas light displays, decorating cookies, making our family favorites, spending time with Christmas and hanging out with Santa at every opportunity.

One of the joys of Christmas is Teddy's joy in Santa. He loves Santa. He gets so excited every time he sees Santa and loves to visit with him. Before COVID, he was just starting to come into his own with Santa, loving him from a distance but still wanting to keep his distance. He was fascinated by him, but he wasn't comfortable being close for any amount of time. 

Now he'd spend all the time with Santa that he could. He asks to visit Santa again, even after his time/turn is done. He lucked out this season with 3 different Santas to visit.

We stumbled upon Santa at Cabelas and were able to sneak in for a visit, even though we didn't have a reservation. The picture turned out great, even though our boys clearly weren't dressed for a Santa visit. After our turn, Teddy asked to go back to see Santa, but he didn't get that second visit and settled for watching Santa instead.

He also got to see Santa at a Sibshop event. That's where he did get to visit Santa twice. He got his turn with Santa and freaked out with happiness. At the end of the event, when they were leaving, he saw Santa again and freaked out all over again. So he got a second turn to sit on Santa's lap, and he loved the second visit as much as the first.

More often than not, Teddy is looking and smiling at Santa. This is a great picture!

He  got to see Santa at the farmer's market two different times. Last but not least he got to see Santa at his last adapted gym class. Oddly enough, that Santa knew his name and that he's sometimes naughty at school ... perhaps because that Santa is married to his paraprofessional. He loves to visit Santa in every form and fashion, and we love seeing his joy in Santa.

What's interesting is that Teddy loves Santa because he loves Santa. He doesn't associate Santa with presents as best as we can tell. He just finds joy in Santa, and we find joy in that.

I hope you had a wonderful holiday season, filled with family and the joy of the season.

 

Tis the Season

It's beginning to look a lot like Christmas!

One of Teddy's favorite things about the holiday season is that we bring ladders into the house to decorate. And he loves ladders! He's gotten much better about safely coming down ladders versus simply letting us catch him. He's also gotten much better about taking turns, letting us actually do our work and then taking his own turn simply to play.

Teddy is part mountain goat!

More Christmas and holiday adventures to come!

Merry Christmas from Wisconsin!

I hope your Christmas was filled with peace, joy and a bit less excitement than ours. Our day started with a 5:30 alarm (because apparently AJ was afraid he wouldn't wake up Christmas morning). That woke him up, along with us because he was sleeping in our room due to his aunt, uncle and their  puppies in his room. We heard Teddy stirring, so we decided to bring him to our room for family snuggles until 6 a.m. when we'd go downstairs to check to see if Santa came. 

Teddy was so excited to come into our room so early that he somehow stepped in a basket (that isn't anywhere in the walking path) and cracked his chin on our dresser, knocking down several things with a clatter that accompanied his cries. We saw quickly that he was dripping blood, unfortunately from his chin. That's a tough area to get to stop bleeding, especially when he wouldn't let us apply pressure and barely would let us keep dabbing it after the first couple minutes. After just a few minutes he was done crying and wanted to bounce all around our sheets, rolling around with his face on the sheets. Let's just say we got to do a couple loads of blood-stained laundry. 

After a bit, it seemed to stop dripping blood, no thanks to liquid skin which only resulted in protests. A shower seemed to help stem the bleeding and at least get him clean. So we went downstairs to see what Santa brought while debating whether we needed to head to the hospital for stitches.

We had excited kids for opening presents but determined we really did need to take him in for medical treatment. Fortunately urgent care was open with a short wait posted online. (Urgent care is a much quicker process and typically way less traumatic for Teddy as he has really bad memories from the ER.) We had family at our house to hang out with AJ, so we took Teddy in for a Christmas visit to the hospital.

This was before the trauma of treatment started.

The doctor and nurse realized pretty quickly that it did indeed need stitches ... and that applying a bandage with numbing cream wasn't going to work. That sent Teddy into hysterics because he really does not like bandages on him, and I'm sure it felt funny to have it being numbed. So instead they rounded up probably all the doctors and nurses working at 7 a.m. Christmas morning to have a team of 4 people to assist. 

We did a blanket wrap, literally restraining his arms and legs with a blanket and then applying pressure. It took 5 of us holding him while the unlucky doctor put in 4 stitches into a hysterical Teddy. There are few things worse than having your child hysterical (or lifeless after seizures) and being unable to do anything to make it better. 

However, as soon as the stiches were done, Teddy bounced back quickly, smiling as we left the hospital and excited by the time we got home to ring the doorbell and see everyone inside. 

Once we got past that excitement, we had a splendid Christmas. The highlight was seeing my 99-year-old grandfather and making memories with him and the boys. The kids loved their presents, and we even managed a Christmas morning run for some of us. 

Unseasonably warm weather allowed Teddy to join us for our Christmas run. 

We're not too excited we get to start the New Year at urgent care because that's when Teddy's stitches need to come out, but that should be less traumatic for all of us.

Santa at the Zoo

Last weekend we headed to the local zoo with Dave's parents (while he was home recovering from a minor surgery). It was great to see the animals that were out and about, and I think it made me appreciate some animals that normally aren't that interesting to me. We saw huge snowy owls, ducks with funny-looking mohawks and my favorite little monkeys. Teddy really enjoyed those guys!

There happened to be a scavenger hunt searching for monkeys dressed as elves, so AJ had a blast searching for those. In fact, we were nearly done walking through the entire zoo when he said that after we found all the monkeys that we'd have to go back to look at the animals. 

AJ's highlight was getting to see penguins up close and personal. They are one of his favorite animals (along with groundhogs and then cats for domesticated animals). He thought it was pretty cool to see them up close and hear the braying sounds they make. 

So close to his beloved penguins!

Teddy was pretty excited to see Santa. He's gotten braver with Santa through the years. He's always been fascinated by him but on his own terms. He's always so excited to see him that it's hard to get a picture with him looking at the camera rather than Santa. But we got a really good picture with me and the boys and a pretty good picture with the grandparents as well.

I swear I was crouching to hold Teddy. I'm taller than him still.

In Wisconsin, you have to embrace winter and still find the fun things to do to get fresh air. This was a great way!

All smiles, who cares if we're not all looking at the camera?

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. 

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. 

Live in the Moment

Christmas is a wonderful time of the year, celebrating togetherness and the spirit of giving. It's also a time of the year that brings back memories of Teddy's very first seizures on New Year's Day and seizures that landed us in the ICU right before Christmas another year. So we enjoy the season, but we're a bit skittish as well. We made it through Christmas relatively healthy, although Dave was under the weather, which dampened his fun (or maybe that was my family visiting ... just kidding).

Although Teddy enjoys playing with toys, he truly lives for the moments spent playing with others. He tried to unwrap a few presents from under the tree, but he spent most of his time bouncing around from person to person, ecstatic to have my entire family (plus 4 dogs) here. I spent much of my time watching him appreciating how much he lives in the moment and enjoys what's right in front of him rather than worrying about what will happen next.

"You'll shoot your eye out!"

When he opened his stocking, he found a peanut butter cup and immediately tried to open it. I lent a helping hand, and he shoved it in his mouth. Then he dug out an apple and headed toward the kitchen table to eat that, ignoring the rest of his stocking. Teddy loved that we had snacks on our counter for a couple days straight, helping himself to giant handfuls of cheese curds, nuts at random intervals and hey look there's cookies here for the taking!

It was unseasonably warm, so we got to spend some time outdoors for a few walks, even one Christmas night through the dense fog to enjoy the Christmas lights in the local park. I think I preferred the daytime Christmas Eve walk in the sunshine to the brewery, where it was warm enough to enjoy a beer and popcorn outside.

Enjoying a Christmas Eve stroll.

It felt weird to leave Teddy home with my mom while the rest of the family went to church, but it truly isn't worth the fight to have our entire family at church, even for Christmas mass. (Don't worry, my brother and sister-in-law and I accompanied Mom to Mass the next day, even if we went for a run while she went to church.)

Teddy enjoyed his gifts, and it's nice that simple things can entertain him (for as long as his attention span lasts). Even though we have oodles of magnets, we now have more. Same goes for giant waffle blocks, so they'll be able to build incredible creations. Teddy and AJ will get hours of fun with a gift certificate to the children's museum in Appleton.

I love, though, that the greatest part of Christmas in Teddy's mind is spending time with all the people. That's what Christmas is meant to be, and for now at least, he gets that.

The Giggles

One of the wonderful traditions in my husband's family is a Christmas party where the majority of his mom's family gathers at a hall. They need to rent a hall because his mom is one of 13 children, so there's lots of aunts and uncles, more cousins and now more second cousins than most in attendance can name. All the little children tend to gravitate to the gymnasium, which I swear they barely heat in winter, to run and play.

Teddy loves the bleachers in the gym, climbing up and down them, making others sit next to him and generally spending a lot of his time there. That is great, until he notices the stage, which is supposedly off limits. Other children go on the stage, but we do our best to keep our children off to avoid getting into trouble, particularly Teddy. Once he notices the stage and how fun it appears to be, it's sometimes a physical struggle and tears to keep him off both sets of steps, one on either side of the stage.

This year, however, it became a game that was great fun for him and a pretty darn good speed workout for me. He'd take off for the stairs, and I'd dash past him and sit on the stairs. He'd start giggling and turn back toward the other side. I'd beeline past him, sit on the stairs and he'd keep giggling. We continued this for quite some time, with Teddy laughing so hard that he fell over ... twice.

For whatever reason, it was hilarious to him, and I couldn't help but laugh as he collapsed into giggles. We both had a great time instead of a great fight over whether he could go up the stairs, which made for a great afternoon (although I was rather tired by the end of the party).

It's hard not to attend these parties and think back to the first years with Teddy, where it was so hard because we couldn't stop comparing him to the other children his age (or younger) who were far ahead of him developmentally. Time has helped us to appreciate the joy in what he can do, which is an awful lot. This little boy was running, giggling and loving life. And I was able to be present (physically and mentally) to soak up the magic.

Can't Stop The Feeling!

Teddy loves music, as long as it's catchy enough to grab his attention. When he hears the infamous "Baby Shark," he immediately stops what he's doing to find the music. When a song starts playing during movies or television shows, he often stops everything else and starts dancing.

Dancing for Teddy looks a lot like jumping, which is one of my favorite things. A few years ago, jumping seemed so far out of reach for him because of his balance and coordination, but now he jumps to show his excitement, to dance, and to convey all the joy inside his not-so-little body.

We discovered a few Christmas seasons ago that Teddy really enjoyed those annoying toys/characters that play music. So now we have a collection of about a half dozen that play various songs. When we first pulled them out of storage, Teddy couldn't contain himself as we loaded them with batteries and started the songs. It's been two weeks now, so they're not the constant obsession anymore, but they're still high on his list of likes.

I'm sharing both videos because they're just so fun!

Merry Christmas ... A Few Days Late and Vacuums Later

A belated Merry Christmas from our family! We spent the past week with good neighbors and family and are enjoying a quiet night before celebrating Christmas and birthdays with the other side of the family.

Highlights of our celebrations included a last-minute Christmas gathering with our neighbors from our cul de sac. Everyone happened to be available Friday night, so we had our 6 families gather at our house for an evening of margaritas, food galore, laughter and fun. We created a saran wrap ball for the kids, which was followed by a plethora of presents from neighbors. I was amazed that the boys received gifts from three different neighbors. One neighbor gave all 6 kids lights for the wheels of their bikes, which was pretty cool. Teddy kept taking one neighbor down to the basement to ride the exercise bike with him, and she was a great sport about it. It's really fun and relatively easy with Teddy to have our neighbors to our house, so there's already talk of a Father Time gathering for January or some other contrived excuse to gather and drink margaritas.

Saturday my family began arriving, which made the boys quite happy, particularly when their aunt and uncle showed up Sunday with the two fun-loving dogs. Teddy adores Zed and Rook, perhaps a bit too much since he lets Rook lick his face non-stop. (She's a puppy who's still working on boundaries ... lots of similarities to Teddy). He loves to chase them, wrestle with them and play with their toys.

Complete disregard for personal space & perfect for each other.

It's nice when there's a house full of people because there's more eyes to keep on Teddy and more people to play with AJ when he needs a break from Teddy. We added two more dogs and three more people Christmas Day with my uncle, his girlfriend and my grandpa. My grandpa usually winters in Texas, but he's been stuck here in Wisconsin much longer than he'd like while waiting for heart surgery. (Apparently that happens when you're 96.) That meant I got to spend Christmas with him for the first time since I was in elementary school, and my boys got to spend Christmas with him for the first time ever. That was the absolute best present I could have gotten this year, and I soaked up every moment.

96 years old wearing my super stylish Goodrs.

The boys got a plethora of cool presents. As soon as Teddy realized the presents under the tree were fair game, he was under the tree unwrapping as he laid there, regardless of whose gifts were in his hands. He was less interested in his pile of presents and preferred to go around the room opening whatever gift caught his interest, so he helped just about everyone. Among his gifts were two vacuums. One is a real one my aunt snagged at Goodwill, and the other is a toy Dyson from his running buddy. His face lit up when he realized he was getting vacuums for Christmas.

A boy and his beloved vacuum.

It's always a bit stressful to have extra people and dogs who don't always get along perfectly, but it's absolutely worth it for the memories we create. From card games to saran wrap balls to incredible Christmas light displays to a Christmas day run, walk and bike ride event, we made many memories ... and learned a few things to make next year's saran wrap balls even more fun.

MyTEAM Triumph Holiday Gathering

During summer Teddy and I spend most Monday nights running with myTEAM Triumph. We've been regulars the past 2 years at the training runs, so we've gotten to know many of the other regular captains, their families, angels and volunteers. The only problem is that we don't run through the winter months, which means we hardly see our MTT friends. 

It's taken a while to realize this, but Dave and I discovered at Halloween how easy it is to invite people over to our house during the winter months. Teddy has our entire house, which is Teddy proof, to play without any fear of him taking off (which happens often when we're outside) or breaking things (which happens at other peoples' houses) or getting into a lot of things he shouldn't (which happens pretty much every where). Our house is relatively easy to supervise Teddy whereas just about everywhere else requires constant 1:1 with a whole lot of redirection and physical wrangling.

So, we invited all the Fox Valley MTT group to our house for a holiday gathering. Despite the short notice, we had a total of 4 Captains and their families and 3 of the crew join us. We spent a couple hours snacking, talking, enjoying each others' company, sharing all our cool toys, snoozing in our comfy circle chair and playing cards. It was an absolutely perfect afternoon.

MTT friends who become like family.

AJ was the best host, getting drinks for people, handing out candy canes and sharing all the cookies and treats. We ended up with quite the spread of snacks, thanks to everyone's generosity. Dave set up the tripod to capture the entire group picture. We got to spend a couple hours with people who we see often but don't always get to have the in-depth conversations with since I'm usually chasing after Teddy unless he's strapped into the race chair. 

The host with the most.

One of the best parts of MTT is how accepting and understanding everyone is. Things that set us apart in the community, like taste testing every non-food item, are perfectly acceptable among this group. Toys that might be considered not age appropriate are really quite fun for a wide range of people, and that's perfectly OK. Teddy can invade people's personal space with no issues ... aside from us keeping the baby from being squished by a loving Teddy. (Even Teddy's gentle version is a bit rough for newborns.) Everyone keeps an eye out for each other's needs and steps in to help where needed, whether a helping hand, a supervisory eye or simply not being convinced to undo the child safety locks. (Nice try, Teddy.) 

Teddy loves babies almost as much as Ann. 

Simply put, acceptance is such a wonderful thing. Not being so terribly different is nice sometimes. In fact, I think 3 of the 4 Captains all have had mattresses lying directly on the floor in their bedrooms because it worked for them, Teddy included. Another Captain had his bedroom closet doors removed, which is exactly what we've done in Teddy's room because it's apparently quite fun to kick the doors when you don't want to sleep. 

We had a house full of people all day, with play dates for each boy this morning and this gathering this afternoon. House full and hearts fuller. 

Music, Cookies and the Slightly Creepy Big Guy

Last weekend we went to a Christmas music program sponsored by Easter Seals. I happened to see a flyer for it shared on Facebook and thought both kids would really enjoy the music program, which was led by a music therapist. Music therapy is about the only therapy we haven't done with Teddy, largely because I never came across a program.

Teddy loved the music and all the people. AJ loved dancing and singing and playing instruments. I loved that since it was geared for special needs that I didn't need to apologize for or even explain Teddy. Teddy moved around the room, sitting in every open seat for a few minutes and sometimes other people's laps. He didn't know any of them, but he's a very social little boy who doesn't have any respect for personal space. In other settings, that usually requires at least a quick apology, redirection of Teddy or explanation to his newly chosen friend. This was somewhere he could just be himself without the need for that.

Santa Teddy was pretty excited to be there.

By far the music and the people were Teddy's favorite parts of the event. AJ liked decorating the cookies and doing a craft as well. Then we went to see the big guy.

Now Teddy historically is a bit freaked out by costumed characters. He's becoming much more intrigued by them, but it's the only time he respects personal space. His bubble goes from non-existent to at least 3 feet, preferably more.

Note the skepticism on Teddy's face. 

This particular Santa lilur Teddy in with his bells, and Teddy got close enough for me to sneak a picture. Then when Santa helped Teddy into his lap, Teddy climbed down and ran away. So AJ stayed chatting shyly with Santa until Teddy and I returned from a safe distance. We even managed a few photos of the four of us with me serving as the safety barrier between Santa and Teddy.

All we're missing is Dave, unless he's really Santa?

It was a phenomenal event just because it was so welcoming for everyone with excellent volunteers. I'll definitely be looking to see if we can attend again next year.

Cookie Decorating ... Err ... Sensory Activity

This past Friday I headed to Teddy's school. After meeting with his physical therapist (finally for the first time since school started), I headed to his classroom to help with a sensory activity. That's what I called it when I offered to come help his classmates decorate sugar cookies because the school district is rather particular about any sort of homemade treats for children. But how can I help it if the kiddos eat their perfectly edible sensory activity?

He doesn't need to look at what he's doing ... ever.

Anyways, Teddy and two of his classmates enjoyed decorating their cookies. His classmates put on multiple rounds of frosting because it kept falling off their cookies ... right into their mouths. Teddy actually had no interest in eating his cookie because he was having too much fun decorating and showing off. A few other classmates watched from a distance and came to enjoy the finished products. 

I made the sprinkles easy to shake onto cookies.

It was a simple activity, lasting no more than 20 minutes, but it was well worth the time and effort to put things together. It was nice to see Teddy in his classroom setting, and he was certainly excited to see me come into his classroom. 

He was very excited to see me and the cookies, too.

Perhaps we need to do another sensory activity around Valentine's Day?

Holiday Fair

Teddy's school does something called a Holiday Fair, which is quite the event with raffle prizes, Santa, cookies and games. But the highlight, which the $3 admission includes, is that each child gets to shop through donated gifts to pick out presents for whomever they'd like. The best part, in my mind, was that kids got to do this on their own because there were volunteer "elves" there to help with the shopping, according to the information about the event.

I thought this sounded like a perfect opportunity for Teddy to participate in something at his school, like the other kids, and thought we'd perhaps see some of his kindergarten friends there. I wasn't quite expecting the massive amount of people, but I had at least anticipated that I should take Teddy's Kimba Kruze to make it easier to navigate. I figured if I was going to hand him off to a strange elf that I should at least somewhat immobilize him to facilitate the experience actually being productive rather than destructive. I mean, really, it's just not fair to hand a stranger Teddy and say, "He's non-verbal. Can you please help him pick out something for his 7-year-old brother, mom and dad. Good luck, too, because he'll want to get into everything."

We waited patiently in line, seeing one of Teddy's therapists from last year, who he unsuccessfully tried to convince to release him from his chair. We didn't see any of Teddy's kindergarten friends as far as I could tell, which I'd only know if someone would have greeted Teddy.

Soon enough, it was Teddy's turn to go into the room to pick out his gifts. As I was about to explain to the volunteer what assistance Teddy would need, she simply said, "OK, you can go in that room."

A bit surprised and disappointed, I pushed Teddy into the room. When I saw only a single very hands-off "elf" to help a half dozen kids with their shopping, I understood why I didn't even have the opportunity to explain what Teddy needed.

Sure, I could have taken the time to ask, explain and make the request. But that's hard to do when you already know it's extra work for your child to participate. If someone makes it easy, then you don't feel bad about the inconvenience of the extra work. But when you have to stop the process and go out of your way to request it, sometimes it just doesn't feel worth the effort.

So, I helped Teddy pick out two gifts for AJ. I figured with all Teddy does, intentionally and unintentionally, to annoy AJ that he probably deserves all three gifts that Teddy could have picked. Then I picked a gift for Dave from Teddy because I didn't see much point in me picking out a gift for myself.

It's one of those cases of expectations not meeting reality, where I ended up with tears in my eyes. I had hoped it would be a great way for me to feel like Teddy really belongs at his school, and I just didn't. But the reality is that Teddy enjoyed himself, got two cookies out of the deal and AJ will be thrilled to have a couple gifts from Teddy. So while I didn't love the experience, I think it was indeed worth it because Teddy enjoyed himself. That's what matters most.

Teddy Sat on Santa's Lap ...

... for 5 whole seconds!

Santa with the boys, as Teddy was making his exit.

Teddy is fascinated by costumed characters but only wants to encounter them on his terms. That means that when he was younger and lacked any other means of communication, he screamed bloody murder. As he got older and more mobile, he simple scooted away from the Easter Bunny while giving it the death stare. We had good success with Clifford the other year, which was fun.

Now he's to the point that he can simply walk away from characters he doesn't like, which he does. But then he'll stop a safe distance away, smile and stare at them. Basically, they're cool, but they're too creepy to be that close.

So we didn't expect Teddy to remain by Santa for long, if at all. I expected him to bolt immediately when Santa scooped Teddy up and placed Teddy on his knee. Instead, Teddy looked quizzically, puzzled I think by Santa's real beard. And then, after a few moments, he scooted off Santa's lap. He was willing to stay right there with me by his side, which was also progress.

I think it's partially because this Santa is rather much like a real person, much more realistic than most Santa costumes. Yet, it's the same Santa we've seen in past years, so there's definite acceptance on Teddy's part.

He had a great time tonight checking out the Christmas lights and the sleighs with AJ, in addition to meeting Santa. AJ said he didn't want to talk to Santa, and my reply was perhaps not the best, although it was effective: You have to. You're the only kid who can tell Santa what you guys want.

Think Teddy liked the sleigh much?

AJ came through like a champ, listing off the three things he wanted to Santa and then suggesting two ideas for Teddy, like the awesome big brother he is. Santa commented on how organized he was, which, I mean, what parent doesn't beam with pride at that?

Breakfast with the Grinch

In addition to licking public toilets last weekend, we enjoyed breakfast with the Grinch. Wait, that sounds like we enjoyed licking public toilets ... Anyways, we did enjoy breakfast with the Grinch and some of our closest friends.

Both boys enjoyed their food, and Teddy did much less playing peek-a-boo under the tablecloth and trying to put his feet on the table than last year. We managed to get a tattoo on Teddy's hand, and AJ sat patiently for the most incredible face painting he's ever had (a very detailed penguin). We got a good picture of the kiddos with the Grinch, thanks in part to our friends who put more people between Teddy and the Grinch and helped corral Teddy on the bench for a few quick photos. Teddy is intrigued by costumed characters, but he only likes them on his terms, which means he typically won't sit near them.

I love that there's one child by the Grinch and the other two appear to be at Breakfast with Teddy.

After that, we got in line for a horse-drawn wagon ride. The kiddos ran around while I held our places in line, and we miraculously got all four children in the photo display at the same time. Funny thing is Teddy is the one who was smiling and looking at the camera the best.

How Teddy is one of two looking at the camera is beyond me.

Teddy absolutely loved the wagon ride. I think he's particularly fond of horses since he does hippotherapy a couple times a month. He had a huge grin on his face for nearly the entire ride and was bouncing on my lap to show his excitement.

Hey, he can't look at the camera all (or most of) the time!

It was a fabulous day with friends, including the part when we headed to our house for some baking while the children entertained each other.