Best Bus Driver

We are so blessed to have Ms. Lori as Teddy's bus driver again this year. She was his driver to and from school last year for kindergarten, and she was the one who took over after winter break to finally get him to school on time for 4K (after a semester of frustration). She adores Teddy, and the feeling is mutual.

Teddy loves school buses, so he'd love to ride the school bus with everyone else. But he needs a bit more assistance to make sure he's safe, such as an aide sitting right by him or a 5-point harness to keep him in place. (Although, having seen other kids on AJ's bus, Teddy would fit right in sitting on top of seats and hanging out windows like he has a death wish.) So he rides a van with Ms. Lori and apparently quite a few friends this year (as last year was a pretty quiet ride to school).

Ms. Lori sings with Teddy, plays with him and interacts with him exactly as I'd want: as a little kid who likes to play, goof around and have fun. She always greets him with a smile and makes sure to pass along messages from school to home and vice versa if there's a need.

She goes out of her way to accommodate us, whether by looping back around when I realize I'm still wearing Teddy's backpack or coming a few minutes early when I had to be in to work early once. She puts Teddy's safety first and reports on how his staff are after school.

In all the stress of back-to-school routines, it's so nice to see a familiar face who knows Teddy and has his back. I mean, what other bus driver would come visit in summer just to have ice cream and see the boys because they all miss each other?

First Day of First Grade

Today was Teddy's first day of first grade! He was so excited that he was jumping for joy in the parking lot when we dropped him off. He saw quite a few friends, from the grandfather who always sees him after school, to the only para who is returning from his classroom last year to the person from the district who supports his entire classroom to the principal and the office staff.

My smiling first and second grade kiddos. 

Teddy's back in the same classroom as last year with two returning classmates, one brand new full-time classmate and a classmate who'll be there half days. His teacher is brand new to his classroom, one paraprofessional returned from last year and there's a brand new paraprofessional. His teacher was occupied with the new student, so Teddy hopped on a tricycle and was happily riding it when we left and wished his team luck.

As Dave and I walked down the hall, I might have commented that they're in over their heads ... not that I don't think they're capable, but I cannot fathom stepping into a classroom with 4-5 children who have the type of needs that Teddy has. And those adults are outnumbered. There's a reason I wished them luck.

And how did Teddy's day go, you ask? Your guess is as good as mine. He can't tell us anything about how his day went, and I'm going to assume that today was so chaotic that there was no time to jot down a note.

Here's to hoping he had a great first day and that we'll settle into a routine with regular communication with his team, lots of integration into his first grade classroom and therapists who partner with us to support him.

Update: A note came home on day 2 that Teddy had a good first day of school and that he enjoyed gym class with lots of smiles. That kid loves gym class because he gets to be a bit more daring than the rest of the day. He's actually allowed to climb things then. 

A Hiking We Will Go

Hiking is one of my favorite things. Before children, Dave and I hiked and backpacked across the entirety of Isle Royale as well as the length of Pictured Rocks. Carrying those heavy backpacks was merely training for carrying children when we continued hiking after having children. AJ is more than capable of hiking on his own and alternates between doing remarkably well and complaining remarkably well. Teddy, on the other hand, has always been carried despite the fact that he is now 6 years old and weighs more than 50 pounds.

I recognize that my years of carrying Teddy for any distance are greatly limited, but I will continue to carry him as long as I'm able to in order to give our family the ability to truly experience the great outdoors. There's so much to be seen that can't be reached in even the sturdiest of wheelchairs.

Teddy is capable of walking, running even and climbing darn near anything. (Seriously, the other day I walked in the garage to see him perched on the back bumper of the Chevy Equinox holding onto the rear windshield wiper and attempted to use that to brace his knee to climb up the back side of the vehicle.) However, he falls constantly. So much, in fact, that we don't even pay attention to him falling most of the time because it's such an ordinary part of every day. He also lacks any sense of safety awareness and seems to gravitate to ditches and ravines because they're more fun.

So he's had very few opportunities to attempt hiking on an actual trail, but he's continuing to improve his balance and want more independence. On Friday I wanted to take the boys hiking at High Cliff State Park for one last summer memory that would be an excuse to eat ice cream for lunch. I decided to give Teddy a hiking stick and see what happened. He was extremely excited and took off in the opposite direction, so I turned him around and steered him past all the vehicles because I didn't want him to scratch one with that weapon of his. Yeah, a hiking stick isn't for balance. It's for swinging wildly, jabbing and poking. It's way more fun that way.

Teddy set off with an excited pace!

We made it onto the trail with Teddy leading the way part of the time. He is easily distracted by other people, so I had to redirect his attention to follow AJ. He thought the big rocks were really fun to poke, touch and inspect. He also liked tapping different trees with his stick and whacking all the foliage along the trail with it. The trail turned uphill and got much steeper, narrower and rockier. The steepness and narrowness were fine for Teddy, but the rocks got to be too much that he kept falling every few feet.

4 cars in the entire parking lot, and he nearly ran into them.

 So, I loaded him up, and we continued on our hike in our usual fashion with me as Sherpa for Teddy. But I was impressed that he made it 4/10ths of a mile on his own two feet, especially with a portion of that being rougher trail. I think that if we stayed on the more level trail that he'd have been able and interested in going further. It's something we'll have to continue to practice and try because he's interested in it, and I'm interested in not carrying a squirming 6-year-old for the entire hike always. (It's much easier to carry the same weight as Teddy that isn't trying to escape and flail and steal my hiking stick and stab me with the stolen hiking stick.)

I was surprised by some of the comments when others heard of our adventure about being a great mom and giving Teddy this opportunity, but it's really self serving. Hiking is one of my absolute favorite things to do, and I want to share that love with both my children. I want to continue to do it as Teddy grows older, even if our pace is slower and we have to poke every rock and tree. Nature soothes the soul ... and we all need that.

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?