Teddy goes to Camp

Yep, you read that correctly. And if you've ever watched the movie Ernest Goes to Camp, I'm pretty sure there were just as many adventures, just different kinds. We can only imagine how the week went exactly because we dropped him off Sunday afternoon ... heard nothing all week ... and picked him up this morning. 

No news is good news when your child is at camp, though it leaves quite a bit to the imagination. But we felt as comfortable as possible in leaving our non-speaking, adventurous, thrill-seeking child who likes to test boundaries and explore without limitations who takes a whole regimen of medications (mostly for seizures and sleep challenges) could be. 

Seriously, this camp through Easter Seals is specifically designed for campers (both kids and adults) with disabilities to enjoy a full camp experience tailored to their needs. The application for camp was incredibly thorough, and then there were countless forms to complete after he was accepted to camp. We even had to do temp checks the week prior to camp in an effort to prevent any illnesses from coming into camp. 

Upon arrival, we were greeted by a flurry of smiling staff and had the 3 counselors assigned to Teddy come greet us and walk us through the check-in process. (He wasn't staffed 3:1, but he got their full attention until another one of their campers arrived. There were 3 counselors assigned to Teddy and 2 other boys, so he had plenty of support and supervision.) Check in included another temp check and quick medical screening, meeting with counselors, spending time with an on-site nurse to review his medications and medical needs one more time and then finally hauling his gear to his cabin. Oh, and I signed a waiver to allow him to do a ropes course ... just in case. (Turns out he just wanted to watch the others and didn't want to join in the fun.)

Teddy was teaching his counselor how to play piano during check in.

And because we weren't sure what to expect, we brought all the gear. Loads of diapers (apparently 2 more packages than needed), extra clothes, his chair in case they needed to travel long distances or go for late-night walks to calm down for bed and 2 bean bags just in case they were needed as landing pads for his bed. We were told upon arrival that they could place his mattress on the floor as well. We lost one of his crocs on the way to unload his belongings, but someone found it before we left, so all was well.

(Fun fact: When we picked him up today, he was missing 2 chewy necklaces and a chewy toy. But he inherited a fake plastic mustache (weird!), a pair of shorts 2 sizes 2 small and a pair of socks. I can only imagine trying to keep everything straight when the campers can't do it themselves or voice whose belongings are theirs, even with everything labeled! Heck, I know what it's like with lost and found at a traditional camp!)

Before we left, the camp director came to us and said, "I know I've only known Teddy 10 minutes, but I already love him! He's so much fun!" And then she proceeded to show us a selfie of them. We heard pretty much the same report when we picked him up today, hearing about his smiles, giggles and his ticklish nature. 

While it was weird to have Teddy at camp, we tried to make the most of it with a few meals out, a couple nights camping, some hiking and biking, a waterpark visit and time at our land relaxing, reading and working on projects. AJ commented on how weird we were (especially me), but I told him this was simply us less stressed. It was such a wonderful week for us with memories made. 

We hiked to Devil's Door at Devil's Lake, definitely not a Teddy-friendly hike!

As for Teddy, we won't know the full extent of his adventures. But I know he had so much fun and was so tired from his adventures each day that sleep wasn't an issue! He got to go swimming, play on playgrounds, eat s'mores, dance party fun and field trips that included tractor/wagon rides. His counselor said he had a great week, and the camp director showed us a bike that he commandeered (that she has no clue how it got on camp grounds) and had a blast riding. 

We're all so glad for this experience and looking forward to next year! (Even if it was a really rough return home because he's extra tired, and we're all feeling all the emotions of coming back from camp ... it's just so much fun it's hard to leave and adjust to real life again.)

Respite

Last week we had the opportunity to enjoy a bit of respite in the form of a backpacking trip with only AJ for a couple days to Pictured Rocks in Michigan. This trip is an annual tradition for us, with this being the 6th time we've went in the past 7 years (darn you COVID in 2020!). 

It's incredible to watch AJ transform on these short trips as we all truly relax and enjoy life without the daily stress and challenges that come with living with Teddy. A highlight this year was watching AJ create a lounge chair out of sandstone slabs propped in the middle of the river. He spent probably close to 2 hours creating this masterpiece and relaxing in it, knowing there would be no guarantee the waters wouldn't claim it overnight. (It did survive until morning, so he got one more relaxation break there!)

Hiking and camping are my happy places. We have so many family memories that I cherish, but hiking and camping are difficult to near impossible with Teddy through the years. That's why this trip is so incredibly special because we get to do things we love without being fully responsible for care 24/7. 

We're grateful for our village, particularly our one sitter who has spent lots of quality time with Teddy including mornings far earlier than she enjoys, to make this respite possible.

I can't help but share some of my favorite photos from the trip. And we're already looking forward to next year!

All set to hike in to our campsite!

I'm not sure how many more years we can all squeeze in one hammock.

AJ is relaxing in his chair.

We hiked to Spray Falls with AJ, first time since he was 11 months old!

This is my happy place.

Respite - For Fun and Necessity

Respite. According to Oxford Languages, respite is, "a short period of rest or relief from something difficult or unpleasant." I guess parenting Teddy counts as something difficult, at least a portion of most days, so we do have respite built into our care plan for Teddy.

Respite is intended to give us a break from being the primary caregivers for Teddy. In an ideal world, we'd use our respite time to do amazing things together as a couple or with AJ to give him some dedicated attention. (So ideally we'd use respite to go to Pictured Rocks ... that's an ideal use.)

The reality of life is messy, though, which means respite isn't always used because we simply can't coordinate or juggle the hours with a provider. Or in the first years of COVID, we went nowhere and did nothing, so there was no place to go. 

Although I'd love to use respite for date nights and fun adventures with AJ, sometimes it simply allows us to do the things that other families can do. The other weekend we used a bit of time while Sigrid occupied Teddy, so that I could catch up with an old friend from Spain while Dave fished. Simple things that wouldn't require respite for most families, but it's impossible to have an in-depth conversation while supervising Teddy. 

This past weekend, we used a couple hours of respite to go to church (and not even our own church, although I've thought about that and probably should do that). Our goddaughter was being baptized. My friend assured me Teddy was welcome, yet I knew we'd spend the entire time literally wrestling him and make quite the spectacle of ourselves. When I saw the giant cattle watering tub for the baptisms, I was convinced we made the right call. I can guarantee you Teddy would have baptized himself several times over before the service was over (or possibly even started).

So while it's not the most glamourous use of respite time, it allowed us to be present in those moments. That makes it worthwhile. And, yes, church with Teddy is both difficult and unpleasant, so it does fit the definition of respite. 

Respite Camp for AJ

Last month AJ had an incredible opportunity to attend camp through WisconSibs, which is a great organization that provides resources, events and connecting activities for people who have siblings with disabilities. This group has offerings for kids age 6 and up, including for adult siblings whether things like seminars on guardianship or other topics that often are relevant for siblings. AJ has done a handful of things through the group, mostly participating in their Sibs are my Peeps contest each spring and a couple hour SibShop at the NEW Zoo this spring.

AJ in front of his yurt. So cool!

This camp was an extremely cool summer camp full of typical camp activities, plus some extra fun and just a bit of discussion about their siblings. We dropped him off Thursday and picked him up Sunday. In between, he got to be a regular kid and get a break from Teddy. Although he loves Teddy dearly, sometimes Teddy is a lot to handle. (As I type this, Teddy has been “talking” in loud screeches for the past 2 hours in the car.)

AJ got to hang out with other kids from around the state, sleeping in yurts after enjoying bonfires and s’mores every night. They did both zip lining and high ropes courses. They did a nature walk through mosquito-infested wetlands to create ecosystem jars. They got to go swimming in Lake Michigan.

AJ had such a great time and can’t wait to do camp again next year! It was such a great experience, and we’re grateful he had the chance to go!

Relaxing Respite

Last week we had the opportunity to spend a few quality days with AJ. Between assistance from grandparents and our "adopted daughter" Sigrid, we were able to arrange coverage for Teddy. We headed north to the upper peninsula of Michigan to one of our favorite places: Pictured Rocks National Lakeshore. 

We've visited Pictured Rocks nearly every year since 2009. We've done the boat cruise to see the beautiful lakeshore from Lake Superior. We've hiked to a frozen waterfall in winter. We've camped in the traditional campgrounds. We've hiked 45 miles from one end of the National Lakeshore to the other end. It's absolutely beautiful and yet unpredictable. The weather can be amazing or it can be brutal. The water is usually freezing, but occasionally it's warm enough to truly enjoy. The stable flies can be merciless. The waves can be non-existent or they can be 10 feet high. 

Despite it's unpredictability, Pictured Rocks has grown increasingly popular in the past 5 to 10 years. We first discovered it when it was relatively peaceful, and now visitation has increased tremendously similar to other national park sites. In our words, it's gotten far more "people-ly," but we're still able to find our peace there.

This was our third year hiking and backcountry camping. That means we take everything we need for a couple days in our backpacks. We have done with when AJ was 6, 7 and now 9. He's quite the trooper for the 3.5-mile hike in to camp, especially with the promise of swimming and playing there. This year was the best yet, likely due to his age.

Still smiling on the hike out, although AJ was a bit weary.

We had perfect weather, water and bugs. We planned to bring in our stand-up paddleboard. All told, that meant an extra 12 miles of hiking (6 of those carrying the paddleboard). Although I can't say we'll do it every time, it was absolutely worth it. We were able to explore further along the coastline safely (given that AJ and I aren't strong enough swimmers otherwise). I am not built for cold water, so the paddleboard allowed her to play in the water with the boys. We were able to see the shipwreck by finding it with paddleboard. 

This was the cave that "burped" and tried to eat them when the waves kicked up.

As AJ collapsed into the water for the first time, he exclaimed, "This is everything I could dream of!" We tend to agree. 

As much as we wish we could bring Teddy to our favorite camping place again, it's just not feasible with his walking ability and the trails. We spent time contemplating how we might be able to get him in for a day trip. Honestly our best bet is to rend a pontoon boat, but then we need someone who's a boater to chauffer us. Any scenario that involves us hiking in is going to result in being exhausted chasing Teddy while there after the way in and way out.

And the reality is that both AJ and us need time away from Teddy. We love Teddy dearly, but it's a lot to be his brother and parents. It's a lot of patience. It's a lot of diligence. It's a lot of refereeing. It's a lot of pushing and shoving. It's a lot of guessing games. There's reasons that AJ likes the move Wonder. It reminds him of our life, probably including the line about life revolving around "the son." 

These few days allow us to enjoy each other. We can all have a bit of space, a bit of personal time and plenty of nature. We had a fantastic time and are already looking forward to next year.

Happy hikers enjoying Grand Portal.