Well-Deserved Recognition

We have spectacular childcare providers, and we've shared that throughout the years. We've unofficially adopted both Bri and Sigrid during the last couple years. Both boys adore these ladies, and Dave and I can't imagine life without them. 

So when AJ saw an opportunity through WisconSibs to nominate a caregiver, he nominated both Bri and Sigrid for the Sibling's Choice Award. He was ecstatic when both ladies were selected for awards!

A week before Thanksgiving we journeyed to Appleton to accept their awards, thinking it was a very information drop-in gathering. Well, it was a bit more structured and fancier than we expected with an official award presentation. We only had Bri with us as Sigrid was avoiding the last of COVID that we had running through the house (hence our masks). 

Most of our motley crew mostly smiling.

AJ and Bri both went to the stage with the leaders of WisconSibs for the awards. AJ even got asked a question and spoke to the entire audience to tell them a bit about his brother. He got a chuckle from everyone when he shared that Teddy has a kind heart and is a great brother, although he can be a pain at times. (Meanwhile I was chasing Teddy around the back of the room as he ran from place to place.)

It was really special to have both ladies recognized with plaques and to be honored for the amazing gift they are to our family. AJ was really proud, rightfully so, of them winning the awards based on his nominations, and he was excited to get a little gift of Christmas cookies to boot for nominating them!

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.

I Heart CDG

No, I really don't love CDG, but that's the button I wore the other week to AJ's school. AJ designed buttons for us to wear while we shared with his class about CDG and Teddy, so I proudly wore mine.

Every year since kindergarten, AJ and I have presented to his class to share a bit about Teddy and his diagnosis. I view it as a great opportunity to help his classmates understand not only a bit more about Teddy in particular, but also how to interact with people with disabilities. (It's easy. Like they're people.)

AJ talked about adapted equipment Teddy uses. 

AJ put so much effort into this presentation, with obvious love for his brother and a desire to help others understand Teddy. This was the first year where he did the majority of the talking with me adding a few things and guiding a few questions. He put together a Power Point presentation and did a very nice job with that. I showed a few pieces of Teddy's equipment, such as his chair and demonstrated the backpack carrier with AJ. We talked about how these things allow Teddy to do the things we enjoy as a family.

The kids listened so well.

Then we played charades with his class. AJ used his list for Valentine's to divide his class ahead of time into three groups, and he even created the charade ideas this year. They were definitely really tough, such as "No bullying" or "I love Oreos." We use the game of charades to help the kids think of what it's like to communicate without talking ... how frustrating it can be to not be able to talk and be understood but also how hard it is to guess what someone wants or means from a few gestures. One boy nailed it on the head when he said, "You can't just give up because Teddy can't tell you."

I have spent time in AJ's classroom on a regular basis, and I can say without any exaggeration that I have never seen his classmates sit or listen as well as they did for his presentation ... at least until he passed around the pictures after about 20 or 30 minutes of talking.

As long as AJ's teacher is willing, I hope to continue this tradition every year. I think it's nice for AJ to be able to share about Teddy with his classmates to build some empathy and understanding. I also think it's absolutely critical that children get exposure to others who are different to demystify things and help them understand that children with disabilities are still children who want to play and have fun in their own ways.

Second Least Favorite Thing

I took AJ for his flu shot today, which he was dreading. As we walked into the room with the nurse, he announced that flu shots are "his second least favorite thing." That prompted me to ask what his least favorite thing was, and the nurse began guessing. She guessed cleaning toilets, laundry, dishes, and vacuuming before AJ interjected, "It's my brother having seizures."

Well, then, yep, that's my least favorite thing as well. That stopped both the nurse and me in our tracks as we agreed that's definitely not a good thing and that the flu shot isn't as bad as that.

I'm often amazed at what pops out of his mouth and how insightful and connected to his brother he is. I was also amazed that the nurse asked if he wanted to pick out a sticker for him and Teddy. I did a doubletake and asked if AJ had said his brother's name was Teddy or how she knew Teddy. I might have inquired, "Does Teddy's reputation proceed him?" She laughed and said that she remembers kids' names and faces from all our visits, and shared that Teddy and AJ were some of her first patients. She then shared that she's loved watching Teddy grow through the years, learning to stand and then walk and that his progress has been amazing.

It was one of those little things where I never quite realized how much she knows and cares about our children, and it was worth the tears for the flu shot.

The Little Things

Last night Teddy and I attempted a run while AJ was at his Minecraft coding class. There's a 45-minute window for us to run that lines up perfectly with a local running group's run, so last week we joined them, broke off early to be back in time and had a splendid time. This week, though, it was cool with gray skies and rain looming. I had checked the radar, and it looked clear for the next hour, so I thought we'd be fine.

The raindrops started before we even began running, followed by the the first lightening flashes within a couple blocks. Within 5 minutes, the rain was picking up speed with lightening and thunder quite plentiful. Teddy and I bailed as quickly as we could into a building just as the skies unleashed their full fury. Whoops.

Fortunately we were only a half mile away from where we started, and we still had 40 minutes to wait out the storm. Once the rain let up, we continued our run back to the vehicle. The streets were soaked from the downpour, and so were my feet as I ran through ankle-deep water.

I threw Teddy into the car as the rain picked up, and he was full of giggles at our adventure. See, Teddy likes the feeling of raindrops. And lightening and thunder don't faze him in the least. This was his idea of a good, fun time.

He doesn't fear the storm. He is the storm. 

After a bit of playing in the car, as Teddy kept opening the door because it was funny to have it rain inside, we headed inside looking ridiculous trying to carry Teddy and an umbrella. Then he discovered the giant gym with built-in bleachers at the rec department and thoroughly enjoyed the rest of our wait running around, giggling and exploring.

He finds so much joy in the little things. Sometimes he's remarkably chill and goes with the flow as our plans unravel and isn't disturbed by things that would concern others like rain storms or waiting for his brother to be done with class. Then again, other times, waiting is incredibly hard for him as was evidenced by the swim class that followed coding class. I get that, though, because it's hard when there's a pool right there that you can't enjoy.

So, we really didn't get much of a run, but at least Teddy enjoyed our soggy adventures.

Guest Post: Big Brother

This is a guest post by AJ, Teddy's older (and awesome) brother. He wanted to share his perspective on life with Teddy.

Hi, I'm AJ. I'm Teddy's older brother. My favorite color is blue. My favorite animal is a penguin. My favorite books are from Dr. Seuss. My favorite foods are from my mom and dad.

Living with Teddy is sometimes frustrating, but we try to work around it. It's fun to have Teddy around, but sometimes he gets into a lot of trouble because he thinks everything is safe. Unless it's not safe, then he just does it for fun.

Working with Teddy is hard at the same time as easy. Playing along with Teddy gets really easy. Sometimes playing with the neighbors with Teddy is hard because sometimes the neighbors don't get along with Teddy.

Teddy has a three-wheel bike with a handle to direct him in case he goes running toward a ditch. Otherwise, he's a good peddler and is kind of safe on his bike. But he aims for ditches.

Teddy's birthdays are really special for me because it's my younger brother's birthday, and it seems special for me to be his older brother.

My favorite thing about Teddy is his joyful little smile and his playful moods. I don't like when Teddy is a little too aggressive and kind of hits or kicks sometimes. But that's only once in a while.

I wish that Teddy could talk and tell us everything about himself. It would really be cool. I also wish that Teddy wouldn't have seizures because it would make life a lot easier not going to the doctors at the ER. But those wishes will probably not come true.

Brothers and goofballs. 

Best Brother

We've often said that AJ is already a better person than we will ever be, simply because he's growing up with a brother with a significant genetic disorder. Teddy's CDG affects every aspect of life for our family, adjusting our version of normal.

AJ has spent 5 years of his life with a brother who has never spoken a word to him. Yet he's learned to understand Teddy's wants and needs, even telling us at a young age that Teddy wanted a drink because he saw Teddy staring at his own cup as he drank. He may not understand everything Teddy tries to communicate, but he's a pretty capable translator.

Not only that, but he interacts with Teddy just like anyone would with their little brother. He talks to him, plays with him and headbutts him more than I'd like to admit. He treats Teddy like a normal human being who needs a bit of extra assistance with things. It's been fantastic to see the times he interacts with others who may have a disability in the same way because it's simply how life is ... for AJ at least.

If you need proof that AJ is an amazing brother, then check out the thank you he wrote Teddy at school last month. I'll translate below in case you're not skilled in the art of reading first grade writing ... of a future engineer.

This is tucked away in Teddy's memory box.

Dear Teddy,

Thank you for being the best brother I've had. You will allwas (always) be my favorit (favorite) brothr (brother) I allwasa (always) had.

Sincerely,
AJ, yoru (your) best brothr (brother)

Wires and Code

Last week AJ and I presented to his class about CDG and life with Teddy. AJ spent an hour making notes on things he wanted to share with his class, focusing on how CDG affects Teddy, ways people can communicate without talking and things Teddy does well.

I'm quite sure AJ lost his classmates when he talked about Teddy's code (aka genes), but I think they got my explanation that it's why some of us have blue eyes instead of green eyes or brown hair instead of blond hair. AJ also lost his classmates when he talked about Teddy's wires not being connected right. (That would be his neural pathways, folks.) But his classmates got the gist of the explanation that there's something that makes life different for Teddy, that he has to work harder to do things that are easy for them and that he's still learning how to talk.

I brought in Teddy's chair (almost as an afterthought) and backpack carrier. I explained that we use these because Teddy has trouble walking long distances and falls often, so these let us do lots of exploring or walk longer distances. I told them that carrying Teddy in the backpack let's us go hiking places where his chair can't go. (Although, trust me, we've taken his Kimba Kruze a lot further on trails that most people would and then just switched out to the backpack carrier. Seriously, who's going to steal a pediatric transport wheelchair 1.5 miles up a trail?)

We shared a picture of Teddy with the class to show his great smile since that was one of AJ's notes. AJ did a nice job explaining ways that people can communicate without talking, whether sign language, gestures or Teddy's iPad.

I tried to end our discussion that even though someone may not respond at the playground when they say hi or may not be able to do everything just like them, that all children want to play and have fun. I told them that even if a child like Teddy doesn't say hi back to them that they can still include that child in their game.

Twinning for a good reason.

Then we divided the class into groups to play charades. I put together simple phrases like "Hi!" or "I want to eat." to help the kids understand how they can send a message without talking. Some of the charades were really easy, and some were more difficult (and my group tried to cheat by listening to what I was telling the person who was acting).

I'm grateful that AJ's teacher gave us the time to share with her class. I know it's important to AJ to educate people about CDG because he wants to share his knowledge and that he loves to talk about Teddy. I like raising awareness of CDG, but I realize a group of kindergarten students isn't going to remember much about a particular diagnosis. My hope and goal is that it raises more awareness and acceptance of others who may be different. These kiddos will be AJ's peers and friends. Even though Teddy won't be at their school, I want them to be accepting of Teddy and all children with different needs.

And I couldn't be more proud of AJ. He loves his brother fiercely and advocates for him, even though he doesn't know that word ... yet.

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.

Biking Boy

Teddy always enjoys climbing on (and then off ... and then on ... and then off ...) every bike we own, even the ones that are obviously too big for him. He scoots around using his feet and thinks he's pretty cool. He's also been practicing biking occasionally at physical therapy, and we've had plans to adapt a tricycle at home for him for months. (The idea is to enlarge the peddles, and secure his feet into the peddles.) The farthest we've gotten is his grandpa cut out the foot peddles for us a few weeks ago.

And then this happened today at physical therapy:

The best response was Dave's when he saw the video:

"My lil HERO!!!! I'm not sure children are suppose to inspire their parents as much as he does for me!!! Guess I got to get those foot pads on our trike!!"