Hiking is My Happy Place

Thankfully Teddy enjoys hiking as well, whether he's rambling on his own or riding in his chair. He's usually fairly content in his chair, as long as we're moving and he's not in a mood. The other weekend AJ, Teddy and I went exploring a local state park.

His chair can cover a variety of terrain, including even the sandy incline that was a pain to push through and up, but we made it. Unfortunately we may have been on a horse trail, which was fine until we got to the water crossing. It was narrow enough that AJ could jump it safely, as could I. But Teddy couldn't jump it without one or both of us going in the water. And I couldn't get his chair across the water without one or both of us getting soaked. And given that it was about 30 degrees (like every other "spring" day this month), water crossings where we got soaked weren't a good idea.

Two smiling faces and a dorky face for this photo.

So we backtracked while AJ waited for us, which wasn't super long because it was less than a half mile (and down the sandy slope instead of uphill). 

Nature is good for the soul, even with misadventures. 

Spring Concert

It was such a big deal to us when Teddy was included in his school's concert the first time. His second-ever performance was this month, and it was an equally big deal. Teddy absolutely loves music. He will spontaneously burst into dancing when music catches his attention, whether on the radio in the car or a commercial on TV. He dances like nobody's watching, and yet his moves ensure everybody is watching. He loves music with such joy that it's contagious, which you'll see in this post.

I know it takes effort to include children with different needs in mainstream concerts. It requires coordination with the music teacher, the traditional 4th grade teacher and Teddy's amazingly patient and calm special education teacher. It allows others in his class the opportunity to step up and help everyone be successful, whether that's redirecting away from the microphone when it's not their turn or being a partner for a song that includes rhythmic stick whacking (for lack of a better term). 

Might as well dress to impress when you know all eyes will be on you.

But the effort yields amazing results. It gives Teddy the sheer joy of being included, dancing and being with his peers. It gives us as parents and family such joy and pride in what Teddy can do. (It may not seem like much, but Teddy remained in his place for almost a full minute without any physical redirection. That's a minor miracle, especially with so much exciting activity.) It provides the opportunity for the community to experience the joy and abilities of all the children. It allows Teddy and his peers to practice appropriate social skills. 

Perhaps the most amazing thing, though, is that it normalizes Teddy and his peers with different needs in the eyes of their classmates. There were a few of Teddy's classmates who wanted to grab the mic to get more applause because they were doing such a great job (I mean, they were right). Teddy tried to take center stage to show off his dance moves. There were kids who's singing is non-existent aside from excited noises, like Teddy, and others whose dance moves rival Teddy's yet don't quite align to the program. Yet, despite all these differences, the other students weren't phased. They know their classmates and their unique qualities and embrace them for who they are. There was one little boy whom I was so darn proud of for intentionally partnering with someone who needed some extra help and being such a great helper, and I made sure his mom heard that. 

When we include everyone, it doesn't make the concert more perfect. It would be less distracting without children like Teddy. But we're all perfectly imperfect, and our differences make life what it is. I'm so glad that Teddy's classmates are learning to embrace and include from early on, as it's not the case for all children. It was clear which classes have children with different abilities who integrate and which ones don't because it looks strange and weird to those who don't see Teddy's excitement on a regular basis. (I swear I didn't speed up the video. Teddy really was moving his arms that fast because he was that excited.) Inclusion normalizes our differences and quirks ... because we all have them.

Inclusion is a beautiful thing. It doesn't take away from anyone, yet adds to the enjoyment for all. 

A Sure Sign of Spring

We had snow this weekend ... again. We live in Wisconsin, so that's not entirely unexpected. It's not necessarily welcome, though, when we all are looking forward to sunshine and warmer weather. But there is a sure sign of spring, and that is the start of myTEAM Triumph training runs~

We love our family of MTT angels, captains and their families. Through the past 6 years we've developed wonderful friendships and have instantly felt accepted with that group. That's a good thing, when your 8-year-old thinks that everyone should do his bidding and simply pushes people where he needs them to go. (We're still working on asking nicely by taking hands, especially since he's at the right height to push most people on their bums. It makes most people jump in surprise, to say the least.)

There's new faces every year, but there's also familiar ones. It's wonderful after winter to regroup, spend time outdoors and enjoy this time with Teddy. It's even more wonderful as our interactions during the pandemic have been quite limited. 

The warm weather will come, and then I'll complain that it's always hotter than 80 for training runs. Teddy, on the other hand, will enjoy every run!

The race chair is one of the few places where Teddy truly relaxes.

Blurred Lines

I never thought we'd be the type of family to have a live-in nanny, but we morphed into that family during COVID. Both our childcare providers were in our inner circle, when even our own immediate families couldn't be during lockdowns and surges. They've joined us for holidays and our full-time provider has lived with us during the week while she's working. She lives nearly an hour away, and we have a spare room, so it's worked out well.

So it was only natural that as soon as we started floating the idea of a spring break trip that we asked if she'd be interested in tagging along. We had the space in the vehicle, she loves to travel and we knew an extra set of hands would be helpful. She was excited about the possibility of exploring national parks with us, so we made plans that included enough sleeping accommodations for everyone, including her.

Our trip was so much better because she joined us. Not only did she actually do some respite for us (cajoling Teddy to sleep in a hotel room, so we don't have to, is definitely respite), she naturally helps out like part of the family. That might mean handing things to Teddy during the drive, helping Teddy when he's eating something messy or keeping an eye on Teddy while we explored something. 

But she also provided company for AJ, someone to explore with him. They both loved hopping along the boulders by rivers, so they'd go exploring together while we hung back with Teddy. It gave AJ an adventure buddy, and they had fun adventures. It gave AJ a bit more attention during the trip, whereas sometimes Teddy becomes the focus for both Dave and I when he's particularly needy. 

These guys were great adventure buddies.

She also joined me in the hot tub and provided another adult companion to have adult discussions. And with her calm disposition, she helps all of us chill out when we otherwise might get stressed (like locking ourselves out of a hotel room ... at 8:30 at night ... for 1.5 hours). 

It was the best thing we could have done to make our vacation enjoyable, and I think she had a great time as well. I'm thinking she might need to be a permanent part of our travel routine. 

See, it looks like she's having fun!

 

Hiking with Teddy

We hiked before kids, even backpacking our way across Isle Royale National Park, covering 50+ miles carrying all we needed. We continued hiking when we had AJ, excitedly purchasing a backpack carrier and taking him to our favorite camping spot at Pictured Rocks National Lakeshore. When we had Teddy, we added a second carrier to our collection. As AJ grew older and more capable, he began hiking on his own. 

That's a good thing because Teddy continued to get larger and heavier to carry. He also outgrew the initial carrier we had, so we switched to soft-sided carriers and continued to upgrade to the largest size we could find as outgrew each one. We would rotate hikes, where I'd carry him one hike and my husband would carry him the next. Then we started rotating during the course of a hike, switching out to ease the workload. 

Then a pandemic hit and greatly limited the hiking and exploring we did. And Teddy continued to grow. Each time I loaded him onto my back, my husband expressed concern that I'd permanently hurt myself. When I carried Teddy for 2 miles last spring, up and down the side of a pretty steep hill, I begrudgingly accepted that was likely the last time I'd carry him that distance. 

Teddy is absolutely capable of walking on his own. There's a couple challenges in hiking with Teddy:

1. He doesn't have the stamina to walk long distances.
2. His balance is still wonky, so he stumbles and falls frequently. This doesn't phase him, but sometimes he does get bumps and bruises from these falls.
3. He's a strong-willed boy who doesn't listen well. Often he wants to go the opposite direction, or off trail completely, and just takes off running. This isn't safe, nor does it help us reach the destination.
4. When Teddy doesn't want to walk, he will simply collapse and melt to become one with the ground. He's 70+ pounds of dead weight. Unlike AJ, who could be motivated to continue hiking bribing him with M & Ms, we haven't found anything that can consistently convince Teddy to resume. 

When Teddy wants to hike, he does amazing. He is surprisingly good about balancing with rocks and roots, although I think it's just his momentum propelling him forward. It's fantastic physical therapy for him. Although he falls, he falls far less often than I'd expect. The challenge is that when he doesn't want to hike, we don't have a lot of good options.

On vacation, we did a 2-mile hike. We were able to push Teddy in his adapted chair for the first half mile (and then the last half mile on the way back) before the terrain became impossible to navigate his chair. Trust me, I'm willing to push him over rocks and roots and can cover more terrain than you might expect. But this was large rocks with steep inclines and a bridge far too narrow for his chair. 

He hiked fairly well on his own for about a quarter mile or so and then did #3 and #4 from the above list. Our nanny and Dave tried to cajole him along while I checked on AJ who had hiked ahead. Then they carried him with piggybacks, fireman carry and some really questionable techniques. So on the way back, I simply loaded Teddy onto my back rather than all the struggle. We look ridiculous, but it's not challenging to carry him short distances (less than a half mile) over relatively level terrain. And it's much easier than the non-stop struggle to get him to move on his own.

He still loves going up. Honestly, so do I.

Our hikes will have to continue to adapt. His chair will cover quite a bit of terrain, so I'm excited that we can explore using that. I've also told him he needs to learn to listen before he grows so large that I can no longer carry him ... sure hope he listens to that request. 

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.