Tuesday, September 18, 2018

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!

Tuesday, September 11, 2018

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!

Wednesday, September 5, 2018

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. 

Monday, September 3, 2018

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.

Thursday, August 30, 2018

The End of an Era

I realize it's been two weeks since I've posted, but that's not for a lack of writing topics. The last couple weeks have been particularly eventful at work, Dave has started back to school already and we've been gone the past couple weekends on adventures. When you add that with all the little things to do before school starts (like open houses, meet-n-greets, arranging childcare, pestering the bus company, figuring out how the religious education system works, etc.), it's been a bit challenging to pull myself away from The Great British Baking Show to update this blog in the evenings.

Anyways, last week was the end of an era for Teddy. It marked a stop in all outpatient therapy services, as well as horse therapy, as Teddy transitions to full days at school. . Teddy's had breaks in different therapies before, sometimes even a month or two, while we waited for the approval process to go through each time. But this is different. More permanent.

It's not that Teddy is magically ineligible for outpatient therapy. We could continue services, most likely only through our primary insurance since Medicaid believes that school and outpatient are duplicity of services despite distinctly different objectives. It's a matter of time and available effort, both for Teddy and myself. No matter how I tried, I couldn't figure out how it would work for Teddy to spend all day working hard at school and then ride a half hour to work for another 45 minutes when he's already exhausted. (Horse therapy was even harder to try to figure out because that's an hour drive.) Then add in the factor of trying to schedule those appointments after school hours and on days that I'm not working. It just didn't make sense.

It's not that Teddy wouldn't benefit from therapy because he does. The more therapy he receives, the better his chances of progress. But only if he's willing to work through the therapy sessions. Given how much he fights the activities when he's tired or simply not pleased with the tasks, I envision trying at the end of a long school day to be a miserable experience for all involved. Or at least an unproductive one.

So last week was bittersweet. Teddy's been doing horse therapy for more than a year and really enjoys that. That's the one therapy that I'm planning to try to fit into our schedule for spring semester because it's distinctly different than the other services he gets at school.

As for the rest, I'm hoping that last week was merely us saying, "See you in a few months when school gets out," rather than a goodbye. Teddy has worked with the same three therapists since he turned one: Ms. Pam for physical therapy, Ms. Kathleen for occupational therapy and Ms. Caitlin for speech therapy. We have spent countless hours between their therapy rooms and the waiting room. (My rough estimations would be at least 500 hours driving to/from and attending therapy appointments.) We've brought cookies and gifts for the holidays, shared milestones and memories and got so much support and encouragement from them. There were hugs goodbye for the boys, one last parting gift of homemade checkerboards from me to them and books and gifts for the boys.

Teddy likes his giant foam puzzle that was his parting gift. Particularly ripping it apart all around the house.

As they said, it's wonderful that Teddy is off to school full time to make friends, learn new things and build his skills, but it's bittersweet to say goodbye to therapists who became a part of our family.

Wednesday, August 15, 2018

Sweltering Summer Fun

AJ's had quite a few solo adventures this summer: a weekend with Dave's parents, a week with my parents, two nights in Milwaukee with my aunt and then last night with his babysitter in Green Bay. Since AJ had special plans, I wanted to make the most of my solo afternoon with Teddy.

That's why, despite it being 90 degrees, we headed to Bay Beach, which is a local amusement park where $5 got us both on the carousel, Scrambler, bumper cars, helicopter ride as well as rides for Teddy on the children's cars and fighter planes. 

Hanging out in the helicopter.

The carousel has been a favorite of Teddy's for quite some time, but I think it's safe to say that bumper cars is a new favorite. He loved crashing into others, being smashed into and steering our car.
We get to crash people!?!? Sweet!!!!

I discovered that the Scrambler is not my favorite. I swear birthing children messed up my equilibrium that rides like the Scrambler and even the Ferris wheel make me slightly queasy. Fortunately, Teddy seemed to enjoy it more than I did and didn't need my pep talk to get through it. (But I did.)

Teddy liked the car ride he did by himself, and he loved the fighter plane ride. As I watched him go round with the other children, I observed that Teddy looked downright joyful whereas other children simply looked happy. There was no child I saw with a bigger grin than Teddy, and he was the only child literally bouncing in his seat. (I could tell that because his plane was bouncing up and down.) 

He's ready to fly and fight!

The one thing that really made yesterday enjoyable was the disability access pass. We've never done this before, but I asked because I saw signs that they were available. It allowed us to bypass the lines and enter through the exits. Given the temperature and the fact that I was solo with Teddy, I decided to take advantage of it. It allowed me to park his chair right by the exit, help him out of his seat right before it was time to go and hop on the rides. I didn't have to fight him in lines, hold him when he collapsed his weight or otherwise wrestle him. It made the day so much more enjoyable and easier for him and me. 

Who would have thought there was "Fast Pass" for Bay Beach?

It's still one of those things that I feel slightly weird or even guilty about using, even though it's clearly designed for us to use. I think maybe that's why we got a few more bumps after skipping the long bumper car line, but, hey, Teddy liked them. 

Monday, August 13, 2018

Ordinary Summer Fun

This past weekend we went to a booyah, which is a Northeast Wisconsin tradition of making glorified chicken soup cooked outside in a giant kettle (think 50-gallon drum). Dave's aunt and uncle have a cottage right on a lake, so we spent most of our time in the water.

Both boys had a blast. Teddy spent most of his time on the boats, pretending to drive and hopping between the motor boat and the pontoon boat. He thoroughly enjoyed riding along while other kids went tubing. But then he had his turn riding on the tube behind the boat. Although we joked to his grandma that we were going to let him try by himself, he rode with me, Dave's cousin and her two young kiddos.

Teddy's smiling face pops up from the tube!
For me, these simple moments mean so much. Since we don't have a boat (despite Dave working for Mercury Marine), the opportunity to go tubing is a rare one for a children and such a fun experience. I'm grateful to give Teddy the chance for these "normal" childhood experience.

Often, Teddy's differences are quite noticeable, but he was just one of the kids (albeit chaperoned) enjoying a tube ride. Summer perfection.