The Vacation That We Almost Quit

Ooofta.

The first few days of vacation were rough. Rough, as in Teddy woke up at 2 a.m. the first morning and 4 a.m. the second morning. Rough, as in we broke AJ hiking on the second day of hiking, so he couldn't walk the next day. (When Teddy can walk better than AJ, that's not a good sign.) Rough, as in the temperatures are way higher than normal for most areas we're visiting, making it potentially unsafe and at least unwise to stick to our plans and reservations.

Me carrying AJ while pushing Teddy. So fun.

Two days ago, we considered leaving Rocky Mountains to head home instead of continuing with two more weeks of stress, tears and complaints. But we decided to at least visit Dinosaur National Monument and then see if we needed to head home.

Family fun in a cool cave.

And then things turned around. AJ started walking and then running again. We figured it different plans that avoid most of the crazy heat or at least avoid camping in it. And we've all managed to have fun again, whether shuttle rides and ramps to run for Teddy to dinosaurs and cool caves for AJ to new beautiful places for Dave and I to explore.

Now, it hit 107 today, but at least we're not camping in it like we had planned. We're trying to figure out what we can control and make this a trip with great memories.

Please Ignore My Sparse Posting, But We're On Vacation

So my posts for the next couple weeks will likely be even fewer and farther between because we're leaving this afternoon to explore our national parks in Colorado and Utah. By no means is it relaxing to take two young children on the type of road trip vacations that we do, but we've gotten a pretty good system down for our vacations. Dave plans every detail in the way only an engineer can, which I truly appreciate. (I mocked him for his first vacation spreadsheets. Now I only want to see vacation plans outlined in spreadsheets.) I take out my anal retentiveness in packing and organizing everything we need for 2-3 weeks in a vehicle with enough entertainment that there's not too much screaming to push us all beyond the breaking point. At least, that's always the goal.

We place an extremely high priority on taking several weeks to explore, camp and hike together as a family. We've celebrated Teddy's first birthday in Crater Lake (after one of our worst scream-filled drives and nights) and AJ's fourth birthday in Saguaro, where we surprised him with balloons and cake. We're fortunate to have the resources to do these type of trips but certainly do what we can to make them more affordable by packing and preparing the majority of our meals, camping far more than hotels and the like. Let's put it this way, our vacations probably cost less than most family of four's vacations to Disney ... and we spend weeks, not days, making memories.

Happy birthday. Now sleep and stop screaming. ;-)

There's always stressful moments, whether it's vehicle issues, which are bound to happen when you drive more than 5,000 miles on a single trip. (Hey, California is far away!) There's sleepless nights, which will happen anywhere with Teddy. I'd rather be in our national parks where I can hike away some of the stress the next day, even if we're getting chomped by mosquitoes when we should be sleeping.

Saguaro - quick picture with both boys.

I will admit, though, that this trip is probably the most nerve-wracking for me because it's our first vacation since December. Before December, I never thought Teddy would have those type of seizures. Now, unfortunately, I know it's within the realm of possibilities. On one hand, I feel better knowing that we have rescue medication that theoretically stops those seizures. But, we've never used it, and I really don't want to experience any seizures when we're in the remote areas we often visit. We've been places where the nearest town is more than an hour away, with the nearest hospital even further. We've hiked where we have a 2 to 3 hour hike back to the trailhead.

That scares me. It won't stop us from continuing to provide our children these experiences, but it's going to take a few successful vacations and several years to ease that apprehension. Until then, we'll still work to enjoy happy trails. (Trust me, hiking with Teddy is still work.)

Summer Fun

Dave headed up north this past weekend to help his brother build a cabin (which is looking really awesome). That meant I intentionally filled our days with some fun activities to break up the monotony of being asked, "What can I do now?" or "Can I play Wii?" Those questions are AJ's version of I'm bored.

We hoped to check out an ultralight fly-in at the EAA, which is a local aviation museum in town. It's a phenomenal place to have to explore with a great hands-on children's section, which is usually all we get to visit. We took a different route to the children's section, so we got to see a few other things before playing there for a while. The fly-in was cancelled due to potential storms, but we managed to catch a shuttle to the hangers across the airstrip. The hangers have more than 50 more airplanes and vintage cars and other cool things to see. With the boys, it's more of a quick tour than actually reading anything in detail, but it was fun to explore.

Snarky face from Teddy. "Mom, let me go explore these."

 
Sunday we drove 2 hours to meet my dad and uncle for a dairy breakfast. Dairy breakfasts are a Wisconsin tradition, otherwise known as breakfast on the farm. It's quite literally what the second name says: you go pay to eat breakfast on a farm. The meals are large breakfasts, most often with pancakes or eggs, sausage, cheese, yogurt or applesauce and ice cream. This particular dairy breakfast had all you could eat buttermilk, blueberry or potato pancakes and strawberry sundaes. It was a great dairy breakfast, but it was even better to spend some of Father's Day with my dad and uncle.

Instead of a sandbox, it's a corn box.

The ride there was a bit rough, but the boys were excited to be at the farm. Teddy actually sat contentedly to eat much better than usual, possibly entertained by the live musician right behind us. AJ's favorite was the corn box, a giant sandbox filled with dried shell corn instead of sand, with tractors and shovels. Teddy and AJ both held a kitten and saw the other animals at the petting zoo. Teddy's favorite was absolutely the wagon ride tour of the farm. He kept veering toward the tractors pulling the wagons, trying to finagle a ride on them.

Our afternoon adventures included a slip-n-slide with Dave once he got home from up north. The boys both had a blast with it. Teddy definitely slipped and slid, although he didn't need to do any running and diving to do that.

Dave captured this amazing shot of Teddy!

These are the memories I hope the kids have of their childhood. The simple, fun things with family.

Entering the Service World

For my entire adult life, I've worked for a non-profit organization that supports people with developmental disabilities, mental health issues and other needs to live and work as independently as possible in their communities. I grew up in a small, rural community that was not diverse (at the time) and had limited exposure to people with different needs and abilities, so needless to say, I learned a lot when I started at Innovative Services ... not just about human resources but also about disabilities, abilities and so much more. I often would say that working for Innovative made me a better person. It made me more compassionate, considerate and open-minded.

Now, I firmly believe that my career at Innovative was God's plan to prepare me to be Teddy's mom. Although I've always worked on the administrative side, that's still 13 years in the field to understand the services provided, the processes used and the language spoken.

The thought had crossed my mind when, especially when Teddy was first diagnosed, that one day he'd be receiving the same type of services Innovative provides. That was weird, but it was a long ways away in my mind. It was after Teddy made it through childhood when Dave and I face the tough decision of what is best for him. Ugh, even typing that makes me want to curl into a ball because I don't want to consider those type of things.

But, what I realized last month was that the time when Teddy receives services from an organization likely is this fall, not when he's an adult. *Gulp*

See, Teddy's been a part of our county-funded program since before he was 2. We pay a cost-share to the county each month for the supports he receives, which includes supplementing childcare beyond the typical costs (since Teddy isn't a typical child). We've still hired our own childcare providers, who are technically employed by Teddy. (He's much nicer than his mom. He's never fired anyone.) We've found nursing or human services students from our local university who have been absolutely fantastic with Teddy. We've been fortunate to find students who have at least one day a week completely available, which worked well when Teddy was home full or partial days.

However, when Teddy goes to school full time this fall, that changes the childcare dynamic. I'm either limited to working only during the hours that the boys are at school, which is really limiting, or I need to find someone to work from 3 to 5 p.m. Not really likely.

That means looking at agencies that can provide the care and support Teddy needs instead of a person. The good news is that we appear to have three options in our town, and there's the possibility of Teddy being supported in our home or in an after-school program. It's not bad news, but it's really weird to have the same discussions about needs and supports when it's your child.

It's weird, unsettling and slightly depressing to talk about your son's behaviors (such as his flop and drop technique when he doesn't want to do the task at hand) and risk for elopement. (That's the fancy word for his desire to explore our neighbors' garages and his tendency to wander wherever is most interesting.) Then comes the discussion about safety skills, which are essentially non-existent. Quite simply, the fact that I was on the answering end of an assessment rather than the provider side was weird. (Granted, I think I only went along on one or two assessments for the experience.)

This will be a challenging transition, not because I don't believe Teddy will receive excellent care and support but because it's something mentally tough for me to wrap my arms around. There's the things that I know will come will working with an agency. For example, I know he's going to have a wider variety of staff who work with him because turnover at any company will be higher than what we've experienced. (Let's not talk about how I almost cried when our first sitter graduated and moved away to become a pediatric nurse.)

But, I'll end this with a positive. I spent my work day today at a picnic for all the people we support in one of our geographic regions. I got to watch our youth staff interact with the children they support and see those genuine relationships. I often hear about the amazing services we provide and the success stories, but I really needed to see it in person to make me feel more comfortable about this.

Just don't ask me in a month or so when we're making a decision or in two months when we transition services.

Party All Night 'Til the Break of Dawn and Then All Day

Welcome to my life.

I'm quite terrified for our upcoming vacation given Teddy's current track record for sleeping at his grandparents' houses. You might recall Easter or any example from my parents' farm. If he sleeps this poorly on vacation, I expect a very stressed family.

So this past weekend we headed to De Pere for a wedding rehearsal and left the boys with Dave's parents. We headed back to their house around 10 to sleep there until the alarm went off at 5:30 a.m. for Teddy to participate in the Bellin Run with myTEAM Triumph.

Well, the Teddy alarm went off at 2 a.m. instead. Teddy woke up, and instead of falling back asleep, he decided he was wide awake. Dave took him for a drive to keep him from waking the rest of the house and hopefully reset him to allow him to fall back asleep. One bright note from their hour of driving is that Teddy knows where our sitter in Green Bay lives. He recognized where we exit for her house, began pointing and making sounds until Dave drove past her road. Since he doesn't talk, it's often hard to know what he knows, but this was pretty obvious and neat to know.

Unfortunately, that drive did not calm Teddy down, so I took over shortly after they returned and booted Dave to bed. (Dave was the best man at the wedding that day, so getting some sleep was pretty important for him.) Teddy and I played in the basement, although he was upset to be down there instead of upstairs by all the people, went for a drive, attempted to lay down a few times and then went to pick up donuts for all the kids once it was 5 a.m. When we returned, AJ and one of the cousins were awake and excited to see the donuts. Teddy was just happy someone was finally awake to play with him. Teddy ate a quick breakfast, and then we headed off to the Bellin Run, a 6.2-mile race.

Teddy was in a really good mood, considering his early morning. He enjoyed the run, smiling and making friends with two angels who were new to us. I've run the Bellin a number of times but enjoyed the opportunity to spectate to watch all the crazy fast runners as well as a bunch of the myTEAM Triumph teams cross the finish line.

When we got back to my in-law's house, all the cousins were awake and ready to play. I sent Dave back to lay down for a bit because he wasn't feeling well. After he came back downstairs, I decided to try napping for 20 minutes before showering and getting ready for the wedding. But then Teddy's cup went missing, which meant I ran to the store to buy another one since there are only a few cups that he can drink from easily. Dave managed to get Teddy down while I was gone, so at least Teddy got a much-needed 2-hour nap.

The wedding went well, and Dave's folks kept the boys until right before dinner. Teddy wanted little to do with sitting for dinner but enjoyed exploring the hall. As soon as dinner was done, I let him free from his chair to explore. He put on 2 miles (seriously, 4,000 steps) during the 2 hours after dinner. He loved the freedom to run all around the reception hall, grabbing random people to try to take them places and sitting at tables with people who I didn't even know.

Teddy's new hobby? He'd like to be a wedding crasher.

Once the music started, he began dancing in his own goofy way. He definitely loves music and likes to dance. Dave got a short video of Teddy dancing, but you can see the video ends when Teddy beelines to Dave to have him join our dance party.

Dave's folks came to pick up two exhausted, dance-weary boys around 9 p.m. Dave and I stayed until the end (since that's the expectation when you're the best man). It really was a fun wedding, but I was so ready to go to bed when midnight arrived. I do believe that's the only time I've ever been awake for 22 hours, and I'm good with that remaining the only time in my life.

But the next day, Teddy managed to sleep until 7 a.m. He had enough energy to explore and enjoy a dairy breakfast before heading to our house for a (remarkable, yet needed) afternoon nap.

This kid loves his tractors!

Wires and Code

Last week AJ and I presented to his class about CDG and life with Teddy. AJ spent an hour making notes on things he wanted to share with his class, focusing on how CDG affects Teddy, ways people can communicate without talking and things Teddy does well.

I'm quite sure AJ lost his classmates when he talked about Teddy's code (aka genes), but I think they got my explanation that it's why some of us have blue eyes instead of green eyes or brown hair instead of blond hair. AJ also lost his classmates when he talked about Teddy's wires not being connected right. (That would be his neural pathways, folks.) But his classmates got the gist of the explanation that there's something that makes life different for Teddy, that he has to work harder to do things that are easy for them and that he's still learning how to talk.

I brought in Teddy's chair (almost as an afterthought) and backpack carrier. I explained that we use these because Teddy has trouble walking long distances and falls often, so these let us do lots of exploring or walk longer distances. I told them that carrying Teddy in the backpack let's us go hiking places where his chair can't go. (Although, trust me, we've taken his Kimba Kruze a lot further on trails that most people would and then just switched out to the backpack carrier. Seriously, who's going to steal a pediatric transport wheelchair 1.5 miles up a trail?)

We shared a picture of Teddy with the class to show his great smile since that was one of AJ's notes. AJ did a nice job explaining ways that people can communicate without talking, whether sign language, gestures or Teddy's iPad.

I tried to end our discussion that even though someone may not respond at the playground when they say hi or may not be able to do everything just like them, that all children want to play and have fun. I told them that even if a child like Teddy doesn't say hi back to them that they can still include that child in their game.

Twinning for a good reason.

Then we divided the class into groups to play charades. I put together simple phrases like "Hi!" or "I want to eat." to help the kids understand how they can send a message without talking. Some of the charades were really easy, and some were more difficult (and my group tried to cheat by listening to what I was telling the person who was acting).

I'm grateful that AJ's teacher gave us the time to share with her class. I know it's important to AJ to educate people about CDG because he wants to share his knowledge and that he loves to talk about Teddy. I like raising awareness of CDG, but I realize a group of kindergarten students isn't going to remember much about a particular diagnosis. My hope and goal is that it raises more awareness and acceptance of others who may be different. These kiddos will be AJ's peers and friends. Even though Teddy won't be at their school, I want them to be accepting of Teddy and all children with different needs.

And I couldn't be more proud of AJ. He loves his brother fiercely and advocates for him, even though he doesn't know that word ... yet.