Just Imagine

Imagine, if you can, going through an entire day without being able to say a word. You can communicate anything you want, as long as you do it through staring at objects, physically directing others to do what is desired, clapping to show that you want something and pointing at objects.

How would you fare?

That's the thought that popped into my mind this weekend, and it's been lingering. I'd probably end up in tears within the first hour of the day. I'd likely give up attempting any communication, at least with certain people, once I'd exhausted their patience with me and my patience with them.

I can't imagine honestly making it a single day, even if I took out the challenge of a work day. Yet this is each and every day for Teddy. He handles what would drive me over the edge with remarkable grace, patience and forgiveness. Yes, those aren't often words I use with Teddy, but when I think of the challenges in expressing basic needs, much less wants, dreams and desires, he exhibits all those qualities.

At times, I lament how challenging it is for us as parents. Life is a constant game of charades, and we don't even know the category most of the time. But no matter the frustration we feel, Teddy by far has the shorter end of the stick.

The other week he was eating a grilled cheese sandwich and got up from the table and stood at the counter next to the fridge. I was about to redirect him to go sit down and finish his food when it suddenly clicked that he probably wanted another grilled cheese sandwich. So we showed him AJ's sandwich and asked if he wanted more. He clapped and pointed at the sandwich, which is a clear request. So we made him another grilled cheese and celebrated the victory of understanding his desire for seconds. I felt so proud of that minor victory, yet how many other moments have I completely missed?

It's amazing how much he can communicate with his limited means, and we'll continue to work with his talker and with sign language to expand his abilities. It takes time for others to get to know his methods, yet sometimes there's no doubt what Teddy wants you to do. Other things, like a second grilled cheese, require us to pay much closer attention to all the little clues. It's exhausting for all of us, yet exhilarating when we make progress in either communication or understanding.

In the Middle of the Night

I remember hearing stories from other parents who panicked when their relatively newborns slept through the night unexpectedly, waking up and rushing to check that they were OK and nothing bad happened. That never happened to us, either because our children never slept that darn well at an age where we would have panicked, we were too exhausted to notice or we were just more relaxed in our parenting style (or some combination of the three).

As time has passed with Teddy, though, we've worked through many times that he's awake in the middle of the night or wee hours of the morning. Sometimes he's crying, sometimes he's just whimpering and sometimes he's kicking the walls. (Yeah, that is annoying to say the least.) Teddy cannot leave his room on his own for his own safety. (Left to his own devices, he could elope from the house if he unlocked the garage, got in a vehicle and used the garage door opener to open the doors. He's done exactly that, just not in the middle of the night).

Since he's non-verbal, there's also no way for him to call to us to let us know if he had a bad dream, if he's thirsty or, most importantly, if he's not feeling well. So we're left to guess, when we're half asleep, whether it's something that requires us to check on him.

You might think the natural thing to do as a good parent is always to check to make sure he's OK. But, with Teddy, it's not uncommon for him to be awake at night. Us intervening when nothing is wrong can turn into Teddy deciding it's morning and that we should go downstairs to play. That's not what we want at 4 a.m.

So, unless he's hysterical, it's a guessing game where intuition is the only advantage we have. Sometimes he's only whimpering, but I'll have a nagging feeling and check to make sure he doesn't have a fever. That's how we've discovered a few illnesses that completely shift our plans for the day because a fever immediately puts Teddy at risk for a seizure.

Sometimes, though, that nagging feeling is worry rather than intuition. That still results in one of us laying by him until he falls back asleep because checking on him and just heading back to bed results in hysterics as soon as we shut his door.

This morning, it was worry. That's why I'm writing this at 4:30 a.m. Dave volunteered to lay with him, so I can still meet my friends to run at 4:45 a.m. (Yes, we know we're crazy.) Such is life with Ted.

This camera can't tell us whether Teddy's sick. That takes the human touch.

Absence Makes the Heart Grow Fonder

In typical families, there might be such a thing as hiring a babysitter to watch your children to give the parents some time together. In families with significant disabilities, that thing is called respite. We have within Teddy's service plan 10 hours of respite to essentially give us a break from Teddy. Sometimes we use respite to get chores done, like mowing the lawn without carrying Teddy on our back or spring cleanup without constantly chasing Teddy. Sometimes we use it to do something fun with AJ, like a movie, to give him much needed attention since so much of our time is focused on Teddy's needs. Perhaps my favorite use of respite was to have our sitter come to our house during a  party with all our friends and their children where we had a bouncy house, so she could chase Teddy and we could enjoy conversations and margaritas. He got to be part of the party, and so did we. 

This summer, however, we've used nearly none of our respite because we have one person who does our childcare and respite. She can't go over 40 hours a week, which means that there's really no room in her schedule to do respite. (And she's moving to New Zealand in two weeks, so we're really screwed then ... know any responsible adults in the Oshkosh area?)

Last weekend my folks stepped in with their Christmas present for Teddy (and us, honestly). They agreed to take Teddy for a weekend, so we finagled that into a long weekend. We headed out with AJ late Thursday evening toward Pictured Rocks in Munising, Michigan. Friday morning we hiked 3 miles into Chapel Beach and set up camp for the next two nights. Backcountry camping is something Dave and I fell in love with before children, but it's really hard with children because you carry everything you need for the entire trip in your backpacks ... plus your small children. We managed one trip with AJ before he turned one, and then last year we headed back with AJ carrying his own small backpack and doing his own hiking. We all enjoyed it so much, that we repeated it again this year. 

This year AJ even managed an extra hike to Grand Portal, which has amazing views. 

Chapel Beach is one of our absolute favorite places. It's become much more popular, so it's too crowded during the day for our liking with people hiking in for the day (which we've done once with both Teddy and AJ) and those in pontoon boats (which would be another way to get Teddy there for a day). But when you camp at one of the six sites there, it's so peaceful later in the evening and in the mornings. We were lucky enough to have the entire beautiful beach to ourselves both mornings and one evening. There's nothing quite like that.

Meanwhile, Teddy had a fantastic time with my parents. They went to Bay Beach and rode oodles of rides ... and learned that $10 of tickets was way too many. They went to the little zoo in Oshkosh and parks here. They went to the Children's Museum, which Teddy loved. Teddy got 1:1 time with his grandparents and loved all the attention. 

This was one of Teddy's favorite rides. He's such a goof. 

This past weekend was so perfect in so many ways. Both children got that special attention to know how loved and cherished they are. AJ got to spend time outdoors exploring, splashing in the water, foraging for wild blueberries and building his hiking stamina. Teddy got his grandparents to do his bidding and be his puppets. We got to spend time outdoors disconnecting from our daily routines. 

Seriously, though, any leads for respite?

Not so Helpful Helper

Dave and AJ headed down to the land Saturday to take care of a few things. Since they had a pretty full schedule of work, Teddy and I stayed home to get a few things done and avoid chasing Teddy around the cow poop from our grazing visitors. Getting a few things done with Teddy can be quite the interesting experience, though, because sometimes he plays really well independently, sometimes he wants you right by him and sometimes he destroys stuff faster than you can possibly keep up.

Our Saturday morning started with Teddy breaking the bathroom faucet while reefing on the handles and sitting on the counter washing his feet. He's extremely interested in playing in water, and usually it's not that horrible of a mess to just soak up the water. This adventure required turning off the hot water to avoid the constant dripping until Dave came home. Luckily, that was a quick fix that just required tightening a few things.

Teddy and I went to the farmers' market to get some beans and cucumbers to can. We also sampled donuts and crab rangoon, both of which made excellent breakfasts. I knew that attempting to can with Teddy had the potential to be challenging, but I managed to get everything canned while he was awake.

He actually spent much of his time playing in the garage. The garage is not the safest spot for him, to be completely honest, but it works with frequent checks, a sharp ear listening for reasons to sprint there and tolerance for things to be destroyed. On one of those checks, I discovered Teddy was an auto mechanic with a mop. He was nearly all the way under the car, just like an auto mechanic, although I've never seen an auto mechanic under a car with a mop as their tool. Fortunately his feet were sticking out, so I could extract him and point him in a different direction with his mop.

Sunday morning, I decided we should clean our windows that were completely schmutzed with fingerprints, food and probably quite a few licks. This gave Teddy the chance to play with the spray bottle. I managed to snap a few pictures of him, and he looks so proud of his work and helpful. Reality was that I was constantly following right behind him, redirecting him to spray only the windows and not everywhere else (including his mouth) and eventually sent him outside to spray to his heart's content. That ended with the spray bottle in two pieces and part of it dropped over the deck.

Still, it was a productive weekend as far as life with Teddy goes. And he looks super helpful, so I can always use these pictures when I'm trying to outsource him, right?

This is great fine motor practice. 

Doesn't he look happy and helpful?

DreamDrive

We live in Wisconsin, which prides itself in the Green Bay Packers. There's tremendous support for the team, and the team makes itself a part of the community in various ways. I'm not sure how many other football teams have their fans come out to watch practice, lining up the entire way from the locker rooms to the practice field to cheer for them, wish them well, snap pictures and hope for an autograph ... oh, and loan them a bike. That's right. It's a tradition that kids line up with their bikes, no parents allowed inside the gates, hoping to have a player ride their bike across the street to the practice field. Kids ride along, run along and sometimes have really creative bikes designed for two people. It's a really cool experience that you won't find anywhere else.

Now, Teddy could care less about football because he has minimal interest in television, but he really likes people. AJ is a Packers fan, and we happened to have a connection who knows Teddy participates in myTEAM Triumph. I say connection because her husband works for the Packers organization, and he was willing to work with us to arrange a rider for Teddy's adapted bicycle.

Teddy thought Wes was pretty darn cool. I tend to agree. 

We had arrangements made for today, and we got a specific time to arrive to avoid having to wait in the heat. This was the only way we'd even attempt this because something like this would either be amazing with Teddy or an absolute disaster. There's absolutely no way we'd have been able to line up early with all the other hopeful kids and wait on the chance that someone would ride with Teddy. He wouldn't have lasted more than 15 minutes, much less the hour or more that we'd have needed to wait. We were able to hang outside the gate instead and sneak Teddy inside right before the staff closed it for all the players to come out (and trust me, even that 5 minutes was tough for Teddy to wait).

Teddy and AJ with our new favorite Packers player, Danny Vitale.

Danny Vitale is a fullback who's been making quite the impression at training camp this year. Today he made quite the impression on our family because he strode right up to Teddy, introduced himself and guided Teddy's bike down DreamDrive to training camp with AJ riding right next to them. I chased along snapping pictures as best as I could with an idiotic grin on my face because it was really cool, especially when I heard other fans saying things like, "Oh, look at that. That's awesome!"

Teddy loved the attention. And didn't look where he was going. 

See, Teddy doesn't care about the Packers. He doesn't get the concept of sports or professional athletes. As a family, we cheer for the Pack, so this was cool in that regard. Teddy likes people, so he made a few new friends today. But it was as much about creating visibility of kiddos who are different like Teddy who are still very much a part of our community. He's the kid with the knee-high braces that Mom made him wear today in case he was running or walking a lot to be part of this experience. He's the one who has the bike that costs more than probably any other kid's bike because it's an adapted bike that holds his feet into place, supports his core, theoretically allows him to steer and has a jousting stick for when he's driving like a crazy kid. And he's also one of only two kids who showed up wearing bike helmets because apparently bike safety is not a key factor in this experience. At least he has a really cool bike helmet that makes him look like the rough and ready kid he is. Poor AJ just looked like a dork. Whoops. At least he was a safe dork. (Gosh, I'm going to be in trouble when AJ reads this blog post. Sorry AJ.)

There's a cool picture of Teddy on the Packers web site from the DreamDrive today. You can check it out as number 16 of 17 pictures in this gallery.

Today was a really cool experience for all those reasons. I ducked out of work for an hour and got to witness an incredible experience for my kiddos. I'm extremely grateful for our connection, her husband who was so nice and for Danny being willing to work with us. And today wouldn't have happened without our amazing sitter Bri who is probably the only person outside of Dave or I who would be willing and able to wrangle two kids and two bikes to a very crowded Packers practice.

I'd be lost without Bri. She's amazing. 

We're pretty darn lucky.

#runlikeangels #mttambassador

Toothless Teddy

Mister Teddy's had a wiggly tooth the last couple weeks, so wiggly that Dave tried pulling it unsuccessfully several times. We've spent the last year or so wondering when Teddy would start losing teeth because we figured he'd most likely swallow them accidentally. Dave was tasked with checking them in between his dentist appointments (because I figured if the stars aligned, they could yank the lose ones for him rather than him eating them).

Then Dave had to leave for a couple days for work last week, with the wiggly tooth still very wiggly but still stuck inside Teddy's mouth. That meant that I was in charge of the tooth. And I don't do teeth pulling. It's not my my job description. The way I figure is there's an awful lot I do or have done through the years (you know, give birth, nurse Teddy who bit like a banchee, clean up pee ... and poop ... carry Teddy for the past 7 years (because the whole time I was pregnant counts, too)). Teeth pulling doesn't need to be my thing. Dave can handle that one.

But, instead I was stuck home with Teddy and a loose tooth. Rather than have him swallow it, I sucked it up and pulled it while we were playing in the hammock. Not only is this Teddy's first missing tooth, it was also my first tooth pulling experience as an adult. (I'm sure I yanked a few of mine as a child.)

I told Dave this would be an expensive tooth.

So, the tooth fairy came for Teddy. And I'm still waiting on the baby goat I decided was my payment for going outside the parameters of my job description. Still waiting ... I think I'm going to be waiting a while ...