Miracle League - 2026 Season

When you have a child with disabilities, you discover an entire world that you didn't know existed. I'm so grateful we are living in the era we are in terms of access to services, resources and opportunities to enjoy childhood for Teddy. There's so much that exists now that I don't believe existed during my childhood. 

One of the amazing opportunities is Miracle League, which provides kids the chance to play baseball on an accessible field partnered with amazing volunteer buddies who support their needs. Year after year, Teddy has had great buddies, and this year Sam did amazing with him. From the first game, Sam was comfortable interacting with Teddy, guiding him where they needed to go and supporting him to bat and run the bases. It is so cool as parents to see these young volunteers shine with how they interact with our children, and Teddy lit up when he saw Sam each week.

Sam + Teddy = All smiles!

This season was extra fun because Teddy has become best friends with Mikey through school this year. As parents of a non-verbal child, it took us a while to realize Teddy had this best friend, but we eventually figured it out. These two boys cannot get enough of each other. It doesn't matter if they spend hours together during the day, they're constantly wanting to hang out again with each other. 

So they were on the same baseball team, which meant every Tuesday we got to hang out together at the ball field. Teddy loved having his friend with him to bat next to him, play together in the outfield, get ice cream before or after the games, share supper before and ride together to games. Their friendship made this season extra sweet for all of us.

These two are something else together!

We're lucky that Teddy has such amazing family and friends. Every game came with a cheering section, complete with grandparents, great aunts and uncles and our adopted kids or some combination thereof. It's truly a blessing to have family and friends who show up for us to share in the ordinary moments of summer that really are the extraordinary moments of life. 

Train Time

When you live in Wisconsin, you look forward to signs of spring. Whether it's early tulips and daffodils poking through the cold ground, the grass slowly turning green or the warmer days, they're all harbingers of spring. Teddy's favorite sign of spring, though, is the start of train rides at the National Railroad Museum. 

We're fortunate to live within an hour of this incredible train museum. Like our membership at EAA, one day I hope to go and actually read all the exhibits, but for now I get to enjoy bits and pieces, whatever I can read in the moments that Teddy stays in one place. Usually, though, he's on the go exploring all the trains. This museum is fantastic because so much of the exhibits are a "yes," not a "no" for Teddy. What I mean by this is that you're allowed to climb inside and walk through more of the displays than not, which is exactly what Teddy wants. 

I mean, really, it's not enough to just see a train. You have to walk through it, sit in it and, of course, try to drive the engines! That's how you experience the full joy!

One of the great things with a membership is that we can visit for 20 minutes if Teddy isn't feeling it (usually never the case) or as long as we want. A membership means a quick visit is just as worth it as a long visit when you're not paying an individual fee for entrance only to have a tough day and have to leave early. 

The best part of the membership, though, is the train rides that are included! There's a 20-minute or so train ride every 2 hours during the warmer months. A perfectly time visit starts with a train ride, followed by exploring all the trains and exhibits, capped off with a second train ride. (We might be the only family to double up on train rides, but I doubt it.)

Train rides are one of the best things!

This past weekend was the NFL draft, hosted in Green Bay. This meant the population of the city was more than doubled in size to host this event, which made people shy away from the city if they weren't there for the draft. It also meant the train museum ran train rides on the hour.

So we drove the hour north, hedging our bets that traffic wouldn't be a nightmare and that parking at the museum wouldn't be too bad. And we struck gold. Since so many people didn't venture out, the museum was remarkably quiet. In fact, we had the first train ride as a private train ride, during which Teddy befriended the conductor and made him sit right next to him. It was a great experience, fantastic to hear this kind volunteer who trains all other conductors take interest in Teddy and share how they are dementia certified and work to make it a great experience for all people. We got to witness this in action on the second train ride of the day when another child who plays in Teddy's baseball league was really excited and then agitated and sharing that with vocalizations. The conductor simply paused in his tour when necessary and picked right back up, never judging or making the experience anything less for anyone ... well, except maybe Teddy who still thought the conductor should sit right by him again. 

Teddy and his new best friend, all smiles!

The End of an Era

As the years have progressed, we've used our backpack carrier less and less. That's understandable as Teddy has grown. Physically, he's now close to 4 feet tall and weighs 80 pounds. When I'm only 5 feet 2 inches on a tall day, there's not much height difference between us. He's also grown steadier and stronger in his walking, though his ability to listen hasn't grown in equal proportions unfortunately. 

For the past several years, each time I pulled out the carrier I was reprimanded by my loving husband and mother ... truly from a place of love and concern that I'd injure myself by carrying Teddy. I insisted on bringing the carrier last year on vacation (and used it on one hike for just a short stint when the listening ears and all other attempts failed). When I didn't pack it for vacation this year, I knew it was time to pass it along to another family in need.

We had to do one final "ups" before mailing the carrier. He still fits. ;-)

Since it was hard for me to give up this season of life, I wanted to give it to another PIGN-CDG family who could benefit. As I type this, our carrier is on its way to Colorado where I hope it brings a sweet 4-year-old boy and his family as much as it did for our family.

Look at that toothless grin! We loved exploring together!

This carrier (and its predecessors) allowed us to get through the basics of life. It made grocery shopping possible when I needed my hands free. It made shopping trips possible when I couldn't wrestle Teddy into carts anymore due to his size, especially combined with my height. (There may have been a couple times we upended the shopping cart when I was trying to wrestle Teddy out by myself.) It allowed Teddy the snuggles and closeness he needed when he was in a mood and needed all the extra love ... yet I couldn't just hold 60+ pounds of sad Teddy.

We did plenty of hiking at our land with the carrier. Ted had to take an important call.

Beyond making the ordinary moments easier (or simply possible), this carrier traveled the country with us. I'm pretty sure this carrier has visited more national parks than many Americans. So, I couldn't resist searching back in time and sharing a handful of places we've been and memories we've made with this carrier. I'll be forever grateful for what this carrier gave our family.

You couldn't always see Teddy in the selfies, but you can see Black Canyon of the Gunnison.

It's completely safe. He's strapped to my back at Olympic National Park.

This was when Teddy still had pacifiers attached to the carrier at Rocky Mountain National Park.

Again, perfectly safe to walk up a river with a child strapped to your back. 

No way we trusted Teddy around the ancient ruins at Mesa Verde.

Not pictured are the ladders we climbed to get to this view in Canyonlands.

Sometimes I even let Dave carry Ted, like here in Great Sand Dunes.

The Wheelchair Saga: Part One

I labeled this part one since we're only 4 months into the process ... and still pending insurance approval. *Sigh*

Earlier this spring, we realized that Teddy's Kimba Kruze was well past it's useful existence for him. He's still within the weight range, but he's so lanky that he drags his feet on the ground. The seatbelt also no longer stays snug. The wheels stick a bit, even when well lubricated. We've used it a tremendous amount over the past 7 years, and it served us well. But it was time for a new one.

Because we won the Kruze, this was our first time requesting a chair for Teddy. Naively, I imagined it would be as simple as asking his caseworker because she's been able to assist with every other request we have, even if the ordering process took a bit. However, the response was that we needed to work through our insurance first. If our insurance didn't cover it, then we could explore whether the county could assist us.

So we reached out to Teddy's doctor to ask for whatever was needed to go through insurance. We were informed that Teddy hadn't been seen in more than 6 months, so they needed to physically see him. So we set up his physical, and then just a couple days before the physical we were told his appointment was being cancelled because his physical was scheduled for exactly one year from his last physical. The doctor's office wasn't sure whether insurance would cover it ... so a couple phone calls later to our insurance company and the doctor's office, and we were set to keep his appointment.

That appointment started the referral process formally in April. But, the paperwork to NuMotion, the company that would order the chair, got lost. Without knowing how long the process would take, I waited nearly a month to follow up with the doctor's office, who said everything was sent to NuMotion. I called NuMotion, and that's when I learned that the paperwork was lost. A couple phone calls later, and the paperwork was tracked down. 

That phone call is also where I learned the process entailed:

1. The initial referral from the PCP.
2. An evaluation by NuMotion's staff in conjunction with a PT or OT.
3. Review of the evaluation by the PCP.
4. Submission to both insurance companies, both of whom would need to approve it.

Let's just say that by the time all the paperwork was tracked down to actually set up the evaluation, we were already in June (and guess what, I made several more phone calls to check in and track down missing paperwork). Then it took another couple weeks to get the evaluation scheduled (which was never actually confirmed, so I just crossed my fingers and hoped for the person to show up). Then it took another couple weeks for NuMotion to get all the paperwork they needed (which required more phone calls and e-mails to follow up on paperwork that was submitted but was missing from the file).

And then, I got to make more phone calls to track down more paperwork from the PCP because that got misplaced or lost in transit (again). Finally in the first week of August everything was submitted to insurance. 

So now we wait anywhere from one to three weeks to hear if insurance approved, denied or needs more information. (Spoiler alert, we're already more than a week into that wait.) 

The best part of this whole saga is the fact that we've been told by multiple people at NuMotion that Medicaid is extremely tough to get approval for pediatric strollers, which is what the Kruze was. In fact, during phase 2, we were asked if we had alternate funding sources since it was that likely to be denied.

Oh wait, the other really stellar thing I learned during that assessment was that they had to size up the chair to last Teddy 5 years. That's right. If insurance approves a chair for Teddy, which is apparently a really big if, the same chair must fit him well and meet his needs when he is 8 as when he is 13. Well, at this point, I guess it must fit him the same when he was measured when he was 8, but he'll be 9 or 10 before they every approve it, build it and get it to us ... because kids never grow or have their needs change.

The silver lining in this horrid process is that we were able to pick up a chair in Chicago at the end of July from another PIGN-CDG family as their daughter had outgrown it. So we cleaned it up and pieced together something to work for the meantime for a lap belt. Ted is rocking the purple chair in the stylish way that only Ted can, and we're very grateful for a chair that fits him much better, doesn't allow him to constantly drag his feet and works so much better than the old one we wore to the ground.

He still looks huge in this chair, but it's mostly the angle.

Teddy Takes on Waterskiing

Last month Teddy had an incredible opportunity to go waterskiing. Yes, you read that correctly. There's an organization called Graceful Wakes that coordinates skiing clinics for people with disabilities. I first learned of the group in June when someone shared their clinic information, so I reached out and was told the clinic was already full (nearly a month in advance). I said we'd try again next year and don't even remember asking to be put on a wait list ... yet the week of the clinic I got an e-mail that they had a cancellation and would love to have Teddy join them.

Since Dave was off that day already, he took both boys down to Janesville, about 2 hours away, for a day of fun on the water. I heard after the first run that Teddy seemed to have fun but was a bit unsure of it, so Dave wasn't sure if he'd do a second run. Well, he did and absolutely loved it once he knew what to expect (as it was a completely new and different experience)!

Teddy was loving his ride!

They had plenty of talented volunteers assisting with every aspect, including two volunteers on skis who literally held the waterskiing chair while skiing. Ummm, I'm pretty sure I couldn't hold my own waterskiing, much less hold onto a chair while waterskiing. They made it possible for a wide range of folks to try waterskiing, with Teddy getting two turns to go.

Thanks to Graceful Wakes and all the volunteers for making this magic happen!

As much as he loved skiing, as soon as his second turn ended, he started swimming away from the chair toward a pontoon boat he spotted. Now, mind you, Teddy's ability to swim is very much a work in progress, but he definitely was moving away from the skiers toward his target. That prompted several additional volunteers to enter the water to "rescue" or perhaps "redirect" Teddy. 

Look at that joy!

AJ captured some good photographs, but the ones I'm sharing in this post are from the photographers who were in the boats to capture the smiles. And there were smiles! AJ and Teddy also got to go tubing together as well, and it was a great family fun day. 

This definitely made an impression on our family (and I'm bummed I was working and missed it). We're so looking forward to this event next year and hope to make it a family fun day!

Accessibility in Our Parks: Version 2.0

Several years ago I shared our experiences with accessibility within our National Park System. We finally had the chance to venture back to our national parks and travel as a family last month, and it's wonderful to continue to see accessible options. 

At Cuyahoga Valley, AJ made his standard request for Junior Ranger books. The ranger offered a more hands-on learning style if that was better for anyone in our group. She didn't single Teddy out, but she recognized that Teddy may not be able to do the typical workbook and provided that option. She didn't automatically assume and give that as the only option, but she gave a choice that might work better for us. 

It was a really neat set of cards with different activities to do throughout the park, with hands-on learning that could be done by younger ages or people who don't do well with written activities. It's such a great idea!

If they change the name on these, it's a darn near perfect idea.

She also politely inquired about how accessible one of the trailheads was due to construction because she observed us pushing Teddy in his chair. They have to keep safety during construction as the top priority and had made some changes to make it more accessible, yet it still wasn't truly accessible. She appreciated knowing, so she could inform other visitors as well as management. 

The other really cool thing we saw was a variety of adaptive equipment at Indiana Dunes to make beach access possible for people with limited mobility. If you've ever tried to push any wheelchair or stroller on sand, you know how challenging that is. They had several options to give people the ability to more fully experience the parks.

A variety of devices allow better access for more people.

The reality is there will always be a balance between accessibility and the component of leaving our parks natural, which means that all trails cannot be wheelchair accessible. I love to see, though, where parks make the outdoors available to people of all abilities. 

Biking with my Boys

We absolutely love the chairs used by myTEAM Triumph that are made by Adaptive Star. We've used them with the group since Teddy was 2. (He turned 3 by race day, but he had a few practice runs as a 2-year old.) The chairs push wonderfully for running and are so adaptable. It's easier to push Teddy because he's relatively small, but it's feasible to push adults with relative ease. 

Last year we were fortunate to work with Teddy's case worker to get our very own chair that we could use any time for running and biking. That was such a Godsend as it arrived right at the start of the pandemic. Teddy and I ran most weeks last summer, with AJ often tagging along on his bike. We went for family bike rides, and it was safe and enjoyable for everyone. 

Teddy's chair will grow with him for years to come!

The only downside of the chair is that it is so large that it's tough to take it to our land for a weekend with all the rest of the stuff we need. So at the land we haven't had anything beyond his Kimba Kruze, which has served us well. However, he's so tall that he can drag his feet and scoot himself all over the place (or just try to snap his ankles, I swear!). That chair also isn't quite designed for all the adventures we've used it for through the years, so it's a little tough on the trails and rougher terrain at the land.

So Dave ordered a custom-designed chair specifically for the land using our HSA (as it's a medical device for Teddy). This beauty of a chair has bigger tires for easier pushing over rough terrain, an extended carriage underneath to catch all the things Teddy drops (accidently and on purpose) and a higher clearance for going over bumps and hills. 

Let's just say the first weekend we had it at the land we had extreme flooding. So we gave it a thorough test by wandering through the flooded fields that still had standing water, mud and the likes. And it pushed through without getting stuck, so we all got to enjoy the mud while checking out the flooding.  

We've also been able to go for several bike rides, both around our land as well as at a really cool trail that's within an hour of our land. We've been to the Elroy-Sparta bike trail twice, as the boys really love the biking and the old train tunnels. 

Teddy loves the dark, rainy tunnels with all the water dripping.

We need to work with Adaptive Star to adjust it a bit as the wheels rub on the side of the frame, but we're so looking forward to the adventures this chair will allow our family to enjoy!

Amusement Park for All Abilities

Last night we had the opportunity to visit a local amusement park, courtesy of the Green Bay Preble Optimist Club. This was a unique opportunity because the park was closed to the general public. The Optimist Club rented out the park and invited families with a child with a disability to attend. This enabled families to avoid the chaos and commotion that is often too much for families to navigate with their child(ren)'s disabilities. 

It was amazing to see so many wheelchairs (with ride attendants wheeling them right up to the rides to assist), visually impaired individuals and others with visible and invisible disabilities. For one thing, Teddy fits into this environment. He's not different because everyone is different. Second, it was truly heartwarming getting to see the joy that everyone got the opportunity to experience.

Check out the amazing view from the Ferris Wheel.

We've taken our boys to this amusement park in the past, with at least one adult dedicated to Teddy. They even have a disability access pass that we used once, which definitely helped when I was there solo with Teddy. But due to COVID, we've avoided the park the last two seasons because it would be way too people-y for us to be comfortable with Teddy, even outdoors and with masks. However, we knew this evening would be few people since it was limited to families with disabilities. 

Dave was going to be late getting home from work, so unfortunately he was left beyond. No worries, though, because I had plenty of help (with AJ, Sigrid and Bri). We got to enjoy the 8 rides that were open, which included Teddy's two favorites: the train ride and the carousel. There's also a fantastic Ferris wheel with stunning views, especially at dusk. We mildly traumatized Teddy with the drop ride. He was rather quick to run away from that ride and was skittish about getting on the next one. However, he settled down and transitioned back to happy Ted about halfway through the Ferris wheel. 

I will admit the Tilt-o-Whirl followed by the Scrambler had me mighty grateful for additional support. I came way too close to losing my supper. I blame my children because before kids I was up for any ride. Now my equilibrium protests, and that combo nearly did me in. 

But all in all, we had an amazing evening. It was wonderful to get to enjoy the amusement park rides, the acceptance and make some special memories. 

The Perfect Movie Venue for Teddy

I mentioned in my previous post that we had another memorable experience during our vacation week at the land. We discovered there was a drive-in movie theater about an hour from our land. That became our memorable, in a positive way, experience. I realize in our life that I need to clarify that memorable isn't always a good thing. 

Now we've attempted a family movie once before, when it was sponsored by Variety as a sensory-friendly family show. We knew we wouldn't be judged if we had to walk Teddy in and out of the theater or if he was loud or otherwise disruptive. It was an OK experience, although Dave spent the vast majority of the movie walking through the lobby with Teddy as he had no interest in staying in the theater. That's similar to other movies he's attended for school field trips. We typically see 5-10 minutes total of the movie (broken up into very small segments).

The gates for the drive-in opened at 7, and we arrived at 7:15 or so. There was already a number of vehicles there, so we claimed our parking spot. That's when Dave looked up the theater on Facebook and realized that shows start at dusk, around 9 p.m. Now, that's obvious in hindsight, but it's been a long time since I've been to a drive-in theater (like a couple decades), and Dave has never been. So we had nearly 2 hours of time to entertain Teddy before the movie even started. 

This was how Teddy enjoyed part of the wait ... and the movie.

However, we were able to do that easily between playing in the Tahoe, literally running around the field/parking lot and taking multiple stroller rides to check out everyone else. There were, of course, a few moments I looked like a crazy person when Teddy was pushing his own chair and then abandoned it to sprint in a different direction. But, all in all, the wait was enjoyable.

Mother Nature gave us a beautiful show before Peter Rabbit 2.

We were very fortunate to attend during a community event night where not only was the show free, but we also got a voucher for concessions. So we had a plethora of food, which was also a good form of entertainment.

Teddy watched most of the movie from his chair while munching on popcorn. He even chose to sit on the blanket by me for about 5 minutes before he decided to move to a different spot. He spent part of the movie watching from the Tahoe, sticking his head out the top. And we spent just a bit walking in his chair while listening to Peter Rabbit 2. 

This was the first time our entire family actually watched the majority of a movie together at any sort of theater event. It was the perfect way to watch a movie with Teddy, as we all enjoyed ourselves. Even though the movie ended at nearly 10:30, Teddy spent the first 10 minutes of the drive back to our land giggling and bouncing because he had such a great time. Then he fell asleep without a peep and slept until we got back at 11:30 p.m. Dave carried him inside, we gave him his final medicine and he slept through until 5:48 a.m. So, I mean, he slept in about 5 minutes for staying up so late.

It was such a good experience that Dave has already scoped out drive-in theaters near our house. There's two of them, so we'll likely try another family movie this summer near home. Dave's already joked that we'd ask our adopted daughters to join us. (And Dave's folks for the drive-in that's between our houses. The more the merrier to wrangle Teddy if needed.)

Best Moments of the Bellin 2019

The Bellin is one of the largest 10k races in the United States and certainly the most fun course I've ever run from the atmosphere standpoint. There are literally people lining the streets nearly the entire way, kids and families spraying you down with sprinklers and squirt guns, people setting up their own aid stations (occasionally with alcohol because Wisconsinites sometimes live up to their reputation) and music lining the course.

The Bellin holds a special place for me because it was the event that got me to start running, purely by accident and the desire for a challenge. I've had the chance to meet and run along side Olympic medalists and running legends. Two years ago, we met Teddy's amazing running buddy for the first time and ran the Bellin together with myTEAM Triumph (MTT). I'm not sure that anything will top that Bellin run, but you never know unless you're open to the possibility of awesomeness.

We ran the Bellin a few days ago with MTT. It was a gorgeous, albeit warm, morning with a record-setting number of MTT captains participating in the race. Teddy was antsy during the pre-race time as he wanted to spend his time playing inside the giant trucks instead of waiting patiently. Not a surprise, right, for a little boy?

Teddy loves the trucks. He was showing me the other truck.

Sometimes Teddy is raring to run, and he certainly was asking us to push him and get started. He kept putting our hands on his chair to ask us to run with him instead of all the waiting before the race. Once the race started, though, he was pretty chill and relaxed. I think he likes the vibrations of the chair, so he rests his head against the side of the chair. He danced a bit to the music with his feet, rang his cowbell a few times and loved the sprinklers and the cup of ice.

His angels were two lovely ladies from the Michigan chapter of MTT who were wrapping up the national MTT conference. They were experienced runners and angels who made sure Teddy had a great time and that everyone knew Captain Teddy was rocking the road. They offered to help Teddy and I run together if we ever wanted to do a race in their part of Michigan, which was sweet. They also sent me the picture of these guys in green who wanted to get their picture taken with the superstar that is Captain Teddy. (OK, we asked to get our picture taken with the Green Bay Packers players.)

Captain Teddy with his angels and the Green Bay Packers.

My favorite part of the day, though, was meeting Captain Nate and his dad who was his angel who pushed him solo for the race. This was Nate's first race, and he was a sweet boy who was about 5 years older than Teddy. His dad and I talked a bit before the race about an adapted wheel that allows him to run with Nate in his regular wheelchair and get out onto trails to explore. After the race, we happened to sit by Nate to eat our recovery banana and cookie. Nate instantly connected with Teddy, talking to him with gestures as well as words. When we went to leave, we asked Teddy to give Nate a high five, but Nate opened his arms for a big hug. Then he proceeded to tickle Teddy's feet to make Teddy giggle because he had just watched Dave do that. He was such a sweet kid, and what his dad said about the experience is why MTT is an amazing organization for our community.

I asked how the race was, and his dad said it was absolutely incredible to have all the crowd support. He said that people were cheering for Nate by name, which happens because the captains have their names on their chairs. Then he said, "They were all cheering for him, instead of staring at him."

That is acceptance and inclusion. That is what MTT is about more than any sporting event or achievement. It's helping people see beyond the chair to the person inside. #runlikeangels #mttambassador

The Making of Maple Syrup and Memories

This past Saturday we visited my parents' farm to drop AJ off to spend the week there for spring break. It's the time of year when maple trees are tapped to collect sap for maple syrup. I have fond memories from my childhood of heading into the woods with my dad and uncle every spring to help (and play in the woods). My family hasn't tapped trees, though, since I was in grade school. However, a few years ago, their neighbors started tapping my parents' woods.

This gives us the opportunity to "help" if we time our visits right in the spring. I qualify the word help because the first few years when it was just Dave and I, we certainly were helpful. However, as we had children, we became less helpful as we brought them along to share the experience with them.

I wasn't sure how we'd get to the woods this year because my mom was at a quilting retreat, so she couldn't hang out with Teddy as she has the past couple years. I didn't see how we'd manage to be any help with Teddy in the woods. Then my parents said one of their neighbors and her girls would watch Teddy. Since she has a child with a genetic disorder and is close friends with my mom, I was confident in their combined capabilities to keep Teddy alive for a few hours ... and I was so grateful for their unexpected offer.

But their offer wasn't necessary because when Harvey, the Mennonite who taps the woods, showed up, I told him our plan to drop Teddy off and then head to the woods. He immediately said it was no problem to bring Teddy along, that he could ride on the bench and that our family should make memories together. He waited while we got Teddy (and AJ) ready, smiled and waved to Teddy and off to the woods we went.

It's hard to see, but Teddy is on my back here as we chase the boys.

Teddy started out on my back, as we tried to avoid sinking into the deep snow. We chased the 7-year-old boys who spent as much time drinking sap as they did collecting it. Teddy even carried one of the bags back to the tree.

This gives new meaning to the name sapsucker.

When I got tired of sinking into the snow with him, we hopped on the bench for a ride. Teddy loved how bumpy it was! When he got bored with that, he walked around a bit with Dave and me before my dad offered to squeeze Teddy onto the crawler. (Initially, we had discussed how there just wasn't room for Teddy to ride there.) Teddy "helped" my dad drive by pushing and pulling every single lever.

Teddy loves anything that he can help drive.

It was an absolutely fantastic day because the neighbors are so willing to help and so accepting of Teddy for who he is. Collecting sap reminds me of my childhood and stories like Little House in the Big Woods. Our village who helps raise Teddy is even bigger than I realized. It extends to my parents' neighbors and friends. Knowing that is even sweeter than any maple syrup.

The inventiveness of farmers is rather inclusive.

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.

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. 

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.

Accessibility: Things You Don't Notice Before You Need Them

Having a child with a disability opens your eyes to many things, one of which is how accessible the world is to them and others in similar situations. We're still at the point with Teddy where he's small enough that we don't always take advantage of things like accessible parking or other things that we probably should because they'd make our life easier.

Case in point: we got the the trailhead in Rocky Mountain and weren't going to use the accessible parking pass because there was other parking available. As we were preparing for our hike (up the side of the mountain to visit waterfalls), we overhead the ranger tell other folks that the trailhead was still a mile up the road. Umm, what? Carry Teddy 2 extra miles, especially when we just got into the mountain altitude? We asked if there was accessible parking still available, explained why we had the pass and proceeded to drive the mile to the trailhead. Thank goodness because otherwise we never would have reached the cascades.

This picture of the cascades made possible by accessible parking.

There's other instances where we didn't take advantage yet still appreciated the options available. At Great Sand Dunes, both a pediatric and adult wheelchair are available to borrow to go into the dunes since a regular wheelchair is useless on sand. We carried Teddy in a backpack, but this is still such a great option that we might need to use in the future. We also noticed a wheelchair available to borrow at Florrisant Fossil Beds to explore their trails, which again we didn't use since Teddy's Kruze is pretty sturdy.

There's Canyonlands, which I felt did a great job with accessible camp sites that are only available to individuals with a disability. Other places offer this as well, but it was prominent at Canyonlands.

We even found a backcountry accessible camping sight about 1/4-mile off the trail at Sprague Lake. That means we could take Teddy to camp in the backcountry without having to hike and carry in all the gear, which would make it impossible. We could push his chair and carry our stuff, plus it's close enough to the parking area that we could get help if needed for a medical emergency. That's incredible!

This was such a neat thing to discover. 

There's cases where folks didn't know we needed the accommodation, like the ranger who did the evening program at the top amphitheater in Canyonlands. She asked if we needed to move the program to the lower area, but that was after we carried up Teddy and his chair. We were perfectly fine since we were already there and didn't feel the least bit slighted that the program was there because it was much better views. 

Then there was the ranger who switched our tour tickets at Mesa Verde once we realized that Teddy could be in a backpack on a tour despite having to climb ladders. He happily accommodated us by swapping our tickets and getting us all together on the same tour. Now, mind you, on that tour I overheard one American asking a couple from Australia whether they were so over the top with accessibility to the "ridiculous" extent we are in the United States. I couldn't help myself. I chimed in to say that although the laws might be a pain, they sure make life a lot easier for our family and allow us to have these types of experiences.

Accessibility sometimes looks like me carrying 50 pounds.

Yet, somehow despite that lady 's complaints, there's hotels that don't have elevators, which seems a bit odd to me simply because we're the type of (lazy) culture that expects them everywhere. We passed up an upgrade at one hotel that was offered because a first-floor room made life much easier than a cushier second-floor room.

And the thing is that I wouldn't have noticed most of this 5 years ago. Well, except maybe the elevator thing because I was really pregnant then and climbing even a flight of stairs made me winded.