The Best of Both Worlds

We're in our third week of school, and we got off to a fantastic start with Teddy's first day. Today we stopped by the school to install a mini wall that we built to help Teddy's teacher create distinct spaces within her classroom. We had the chance to talk to both Teddy's teacher and his kindergarten teacher.

There was so much positive that his teachers shared in the short time that we were there. The kindergarten teacher wanted to discuss two upcoming field trips with us that she, in her words, would "love" to have Teddy join. One is a trip to a farm, and the other is a play. The only caveat is that since Teddy's classroom still needs the aides to support the other children is that we need to supply a chaperone to help Teddy be successful. Given how much effort his team at school puts forth to ensure Teddy has opportunities to integrate and participate in a wide range of activities, I have no problem with us attending as chaperones. (That's something that's normally fun to do, anyways, right?)

OK, I do have one problem with us attending. The play sounds a wee bit like torture to keep Teddy contained for 45 minutes during a show, but who knows, maybe he'd be so fascinated that he'd be an incredible listener and follow the lead of his friends. I'm hoping Dave is the one who gets to find out rather than me.

His kindergarten teacher shared how excited the children are when Teddy comes to the classroom. She said she makes an exception to her 4 children in one play area rule when more children ask to play with Teddy. (Doesn't that just make you smile?) She said there's two children in particular who have taken quite a shine to Teddy.

It was interesting to hear the questions her students had for her before Teddy first came in the classroom. She had talked to them about how Teddy doesn't talk, so she had quite the range of questions: Is he a robot? Does he have a mouth? Does he have ears? Can he hear?

She said it's been a great experience for all the children, including Teddy. She also said if she's having a tough morning that Teddy's smile always makes her happier.

This smile. But he's definitely not a robot. 

Then Teddy's regular teacher said that Teddy just has a way of connecting with each child in her class. She teared up as she told us about a child who does not like physical contact or interaction with others, yet Teddy can sit right next to him without any issues.

I think all this makes up for me wanting to sell or trade Teddy yesterday ...

All My Titles for This Post are Inappropriate

In other words, today was one of those days with Teddy. He woke up in a good mood, which converted into his mischievousness, destructive mode as soon as AJ left for school. I only had Teddy home from 7:15 (when he normally gets on the bus) until I took him for his 8:45 a.m. annual checkup. I tell you, that 1.25 hours (because we left the house by 8:30) felt like forever.

In that time, he ripped down 3 of our 4 shelves of movies, rolled around in them laughing hysterically and managed to rip open a few cases to schmutz the discs. Most people would find this at least mildly annoying, but since I'm extremely weird and need our movies in alphabetical order ... well, let's just say it's hard to alphabetize anything while Teddy is still a whirling, twirling machine of destruction.

This kid. It's not like he'll even watch 5 minutes of TV, much less a movie.

Sometimes Teddy gets into moods where he is just bound and determined to destroy things, whether it's pull things apart, knock things over or whatever else he can do to create chaos. And he does this all while laughing. It's not that he is upset or mad and throwing a fit. He's extremely pleased with himself to render things a complete mess. I'm not sure if it's the reactions that he's going for or if he just thinks it's funny to be a dink.

I would have been relieved to drop him off at school, aside from the fact that he was limping from his flu shot. He literally was staggering and needed a hand for assistance while walking. I'm not sure why that was the case from a flu shot, but he seemed better when he returned home from school. Granted, I spent most of the time he was at school wondering how he was doing ... something as simple as a flu vaccine causes paranoia for Dave and I given Teddy's propensity for seizures.

And when I say he was better when he came home from school, I mean his limp was gone. His mischievousness remained, so I was quite glad when it was finally late enough that I could pick up AJ for his CCD class. That at least meant Teddy contained in a carseat where he could inflict relatively minimal damage. Teddy ended up riding on my back for the last 30 minutes or so before dinner, so that I could get food ready without it all being stolen or thrown or dishes dragged everywhere in the kitchen.

At least when I picked AJ up from his after-school program, the staff made a point to tell me how well AJ reads and that AJ reads much better than many of his peers. And when I asked AJ how his homework was, his reply was, "Way too easy!"

Now, to figure out if Teddy will be the Tasmanian Devil or a bull in a china shop for Halloween. I'm leaning towards the latter.

Teddy's Puppies

This past weekend we had two young dogs visiting our house for AJ's birthday party, so Teddy was in dog heaven. Teddy is fascinated by dogs and loves to play with them. Unfortunately, most dogs aren't too fond of Teddy's methods of playing, which are the same as when he plays with people: he likes to sit on top, push, pull and ride. He doesn't mean to be aggressive, but his interactions with dogs usually include careful supervision with plenty of reminders to be gentle and  physical redirection when he tries to ride the dog, which inevitably happens.

That's not the case with the dogs who were visiting. Zed has known Teddy for a year and loves to wrestle and play with him, and this was Rook's first time meeting Teddy. Rook was incredible with Teddy, very mellow and chill except for one time that Teddy sat on her when she was tired. (He's a lot of weight for her since Rook is still very much a young pup. Teddy better watch out when she outgrows him.)

Teddy had an absolute blast playing with the dogs, wrestling them, snuggling into them, sharing toys and playing tug-o-war. (Never mind that he was using his teeth to play tug-o-war, imitating Rook.) When I tried putting Rook in the backpack carrier one morning, Teddy kept trying to unbuckle the carrier because he wanted to wear the carrier with Rook on his back.

Teddy was so proud of himself for carrying Rook!

Thanks to John and Lindsay for raising Zed and Rook to be awesome playmates for Teddy!

I Love This Kid!

AJ had his first CCD class, which is the Catholic way to teach our children more about our faith and prepare for the sacraments. He wasn't too thrilled about the prospect of this lasting for 10 years (hey, he asked how long he had to go!). But he really enjoyed his first class, and I couldn't have been more proud of the conversation we had afterward.

He told me that he prayed for Finny because he wants his fish to feel better (since Finny is sick with disappearing fins) and one other thing that began with a T and ended with a Y. He said he prayed for Teddy, so I asked what he prayed for Teddy. His reply, "I prayed for God and Jesus to help Teddy talk and walk better." He continued to explain that it would be nice for Teddy to be able to talk without his talker because we don't really know what Teddy's vocalizations of "eh" mean. He added that he also prayed that Teddy wouldn't have any more seizures because AJ really didn't like the one last December where Teddy had to go to the emergency room and then Milwaukee.

Dang, kid. Those are pretty much my same exact prayers for Teddy.

Teddy's the little brother who's loved in a big way!

A Fantastic First Day of Kindergarten

Teddy had an absolutely fantastic (albeit exhausting) first day of school yesterday. It began with discovering that his morning bus driver from last year, Lori, is his driver for his rides both to and from school. Lori told me the first thing she did when she got her schedule was to check to see if she had Teddy on her route again. That put a smile on my face to start the day.

When I walked Teddy into his classroom, he immediately found cool things to play with and was content to be there. One of the classroom para-professionals (paras) knows of Teddy from working the Early Childhood program last year even though she didn't work directly with him, and two other people greeted Teddy by name. One was the program coordinator for special education services in his school, and the other was someone who was a substitute teacher for him last year who recognized and remembered him. I tell ya, the boy makes quite the impression on people. 

Teddy could care less that I left his classroom because he had all these new people to play with and things to explore. I'm sure he will keep his teacher and all the paras plenty busy. From little bit I talked to his teacher afterward and the note that came home, he had a great day. He did well at lunch time in the little lunch room and was working independently on a matching game when I arrived.

Teddy was all smiles, as was his teacher!

After school was done, we met with the kindergarten teacher who will be working with Teddy's teacher to provide Teddy opportunities to interact and learn with his age-group peers. This is something that we feel is incredibly important because Teddy learns from watching others, so time spent with other kindergarten students will help Teddy to pick up on social skills, routines and who knows what else. We recognize fully that the skills gaps between Teddy and others his age will only increase as he gets older, so we view these early school years as the best opportunities for him to have as much natural interaction and integration as possible without preventing the other students from learning. Last year, we really had to push for integration, and it only happened at recess and then periodically when staffing was available because Teddy needs a para directly supporting him for it to be successful.

This year, though, the kindergarten teacher spent time on the first day of school to meet Teddy, talk through the plan they've created and left me feeling so hopeful. I recognize the plan might not work perfectly and might be adjusted based on how things go in real life, but there's actual, intentional thought on how Teddy can spend time with his age-group peers. Quality time. The plan is that once things settle down next week and the kindergarten students are familiar with routines that Teddy will join them for the first 1.5 hours of their day, except for the days that Teddy has gym class. That means Teddy would get the opportunity to eat breakfast (they do breakfast at his school, which is just weird to me), enjoy play time and morning meeting with his age-group peers. 

The kindergarten teacher had a spot at the table for Teddy with his name, along with an extra crayon box and crayons that she had. That means that Teddy belongs in the classroom, that he's a part of it rather than just fitting him in as a visitor. The kindergarten teacher gave Teddy his first homework project to create the same "All About Me" poster that all the other students are doing, so that everyone can get to know Teddy just the same as all their other classmates.

Teddy sitting at his spot in the kindergarten classroom.

Last, but not least, she talked about how they do sharing time during their morning meeting. She said she's already given Teddy's regular teacher the list of questions, so that we can program Teddy's talker to have his answers. That way, his para can help Teddy answer questions like, "What's your favorite color?" just like the other students.

Are you crying yet? Because I almost am.

It's just so amazing to have Teddy be so welcome, supported and accepted at his new school. Now, let's hope it lasts once they get to know the very opinionated, mischievous side of Teddy. 

An Incredible Weekend

A couple weekends ago we spent a short weekend in Chicago. The boys and I met Dave in Fond du lac at 11 Saturday morning and headed south. We checked out a donut place in Milwaukee, which was nothing too remarkable aside from serving vegan donuts. We also snagged some cheesecake from the Cheesecake Factory for the adults' treat. (Let's just say it was a rough week at work, and I was finally to the point that I was eating my emotions.)

Our first stop in Illinois was Legoland, which had lost a bit of its magic for Dave since we first visited two years ago. I think Teddy enjoyed it more this visit. We rode the few rides together, and AJ watched two 4-D mini movies. Teddy soaked himself with the water area, and AJ could barely leave the store with all the enticing LEGO products. Amazingly, though, he left without purchasing anything despite more than $100 burning a hole in his pocket.

From there we headed to visit Sammie and her family. Sammie is an 11-year-old girl with CDG-PIGN, the same diagnosis as Teddy. We first met Sammie, her brothers and parents two years ago at Legoland, and it was such a blessing to actually meet another CDG-PIGN kiddo for the first time. When we reached out to them a week before this short trip, we were able to make plans for dinner together, so we headed to their house.

Spending time with Sammie, her older brother and parents was the best part of this weekend for me because it's just so incredible to see someone else with this diagnosis and all the similarities. In a world where Teddy is just so rare, moments where you see another child and think, "Wow, that's so much like Teddy!" don't happen. Sure, there might be kids with braces like Teddy or charming smiles, but it's different to see someone with similar (of course, more advanced) communication styles, gestures, attention spans and personalities.

They have a ball pit. It was awesome.

I loved watching AJ play with Sammie, falling right in step with games of hide-n-seek to help her find her older brother. He understood Sammie so well that he only once or twice asked for help understanding her, despite her not using her talker, because he's so accustomed to Teddy's methods of communication that he could piece together between that background and Sammie's limited vocabulary. That's a pretty incredible skill for a soon-to-be 7-year-old child.

We enjoyed our favorite deep-dish pizza with them and watched the children run around while we conversed as much as we could. I wouldn't say their house was completely Teddy proof, but they understand the art of physically blocking spaces and redirecting children who want to be elsewhere. It was so comfortable to just let Teddy be Teddy with minimal efforts to keep him contained or any need to apologize for his lack of social skills or appropriate behavior. They just get it because they've lived it.

So hard to get both Sammie and Teddy still for a picture, much less looking at the camera.

I hope they get something out of our visits because we spend so much time asking questions to understand when Sammie reached milestones or what challenges still exist and what things have gotten easier over time. It's like a window into the future of what could be, and it gives me so much hope.

After several hours of fun together, we left to catch a quick dip in the hotel pool before bed. We hit the jackpot of hotel pools with a warm pool for once! We didn't stay in it long because it was late, and we had more adventures the next day.

AJ was slightly afraid of sting rays. Teddy wanted to go in their pool.

Sunday's plans were the real reason for our short trip to Chicago. We headed downtown to the Shedd Aquarium to meet Teddy's running buddy from I Run 4, Heather, and her husband Steve. This was our second time meeting them, as they came over last summer to spend a weekend with us and run with Teddy. We met somewhat in the middle since they live near Detroit to hang out for a while. We've never been to the Shedd, and it was a really neat place to visit. There were interesting displays of art made out of garbage from the oceans and more sea and water creatures than you could imagine. The boys both pet sting rays and sea stars. Teddy and AJ had fun on the submarine for children to explore as well as the penguin play area, and AJ got to see a few penguins up close and personal as they were being transported behind the scenes by the elevators. It's a pricey place to visit, but it was definitely worth seeing, particularly with the company we had.

AJ's highlight was his close penguin encounter.

Heather has been such a fantastic running buddy for Teddy, sending him posts via Facebook, cheering him on with all his milestones and simply being part of our extended family. The time they spent with us last year was incredibly comfortable, and this was the same. I love that Teddy gets to spend time in person with his running buddy because that is what connects for him, so then he recognizes Heather's pictures when I show him her posts.

Somehow we got everyone looking! This was before Teddy discovered the Segways.

We grabbed lunch at the aquarium and then headed toward home with one more stop at the LEGO store in Milwaukee and Barnes and Noble for some escalator rides, which is Teddy's jam. AJ finally managed to score some LEGOs at Barnes and Noble that were on clearance to boot. All in all, it was a fantastic weekend full of fun, friends and positive memories.