Field Trip Fun

Field trips are a mixed bag of emotions for me.

I love to see Teddy included and have the opportunity for fun learning, just like any other child. I tend to resent, though, that one of us as parents have to take off work to accompany him on his field trips because there's not adequate staff to have someone accompany him. (I get that's an issue I should be able to resolve through the school, and I will address it through his IEP once we're done with some additional testing for him next month.)

Teddy made friends with the bus driver, who let him open/shut the doors.

I love to see his classmates who interact wonderfully with him, from the girl who holds his hand and pats his arm when he's upset that he has to wait and not freely explore everything to the little boy who sat next to him digging for dinosaur bones praising his digging and taking turns with Teddy. I don't like to hear that Teddy's not in the first grade classroom that often (per a kid's perception, of course) because he needs a staff to support him to be integrated. I know it's early in the year, and I know there's kids in any class who are a handful for the teacher to manage and that it's tough to add Teddy to the mix. But he learns so much from others, and the gaps between him and his peers will only widen each year. Now is the time to invest in the staffing to have him spend as much time as possible mainstream. (Clearly, you can see what's on my mind. Again, I have plans to address this properly through the school rather than just complain about it here.)

Bookworm Gardens in Sheboygan is definitely worth a visit with lots to explore. 

I love the kids who say that Teddy's their friend. I both love and hate the questions they ask because they're curious about Teddy. I will always answer any questions to help others understand Teddy because I'm Teddy's voice. It still hurts most times I answer why Teddy can't talk like others and how he can communicate instead. But there are now several kids in his class who know that clapping is how Teddy says, "I want." And there's also kids in his class who probably have ideas on other signs they can teach him. That's all wonderful, but it still hurts to spend a whole day watching Teddy and his peers who aren't his peers ... and to realize that his intentional classroom's wonderful circus of a gym class is where his peers are. Field trips are really only hard because I haven't fully mastered the art, skill or whatever you want to call it of acceptance.

Like I said, it's a mixed bag of emotions. 

Another Day, Another Race

One of the best parts of our summer is myTEAM Triumph, an organization that partners able-bodied athletes with individuals with disabilities. Teddy ran his first race with them shortly after his 3rd birthday, and we've loved every moment. Everyone is so welcoming and accepting of all our Captains. We've developed such friendships that others offer to take Teddy for periods of time at training runs or races or simply just take him to go exploring. 

Aside from the friendships, Teddy loves to run. He gets antsy waiting in his race chair before the race, but he loves when he's being pushed. He lucked out today and had the fastest team. (He came in second of the MTT teams because he walked across the finish line on his own.) He also had an angel who knows him from training runs, so not only did she push him for the race but then also wrangled and chased him back to where I was. 

Teddy wouldn't smile because he was too confused by the pace car in front of him.

Most often I'm running as one of Teddy's angels, but Teddy joined just last week for this race because they had an open Captain spot. So AJ and I spectated with cowbells. I helped push Captain Katie's chair while she walked across the finish line with her angels. Now that was something incredible to witness. Captain Katie worked for each and every step to cross the finish line, and her two angels supporting her were drenched in sweat by the time they crossed not only from the effort of running the race but also from supporting their Captain across the line. It was truly humbling to watch her effort and determination for the simple act of walking that we often take for granted. 

We still have at least one more race left this season, Run with the Cops, next week. That's always a fun race with lots of lights, doughnuts and goodies along the way. It'll be extra special this year because I've roped at least one of my Moms Run This Town friends into being an angel. It's pretty neat to combine my love of running and my love of Teddy. 

#runlikeangels #MTTambassador

Some Days, It's Tough to be Teddy's Mom

I feel like I've said this before, but some days it's just tough to be Teddy's mom. Or dad. Or brother. Or grandparent. Or any relative.

He's such a darn lovable kid, who approaches life with reckless joy and lives in the moment. He's happy more often than he's not, unless you're trying to make him do something he doesn't want to do. Sometimes it's those are the moments that it's tough to be Teddy's mom when you're physically trying to peel a 50-pound child who's only a foot or two shorter than you off the ground when he's melted there like a pile of jello. That's physically hard and wears at your patience rather quickly.

The harder days to be Teddy's mom, though, are when it's not the behaviors that make things tough. It's the days that you have to confront that our life is so different from reality for many people. The worst of those are the seizures that put life on hold, terrify us and leave us all worse for the wear. But there are other things that have a similar, albeit less traumatic, effect.

We're pursuing neuropsychological testing for Teddy because we think it'll be helpful for his team at school as well as for us to support Teddy in the best ways at home. In a perfect scenario, we'll learn some things that will help to minimize those behaviors I mentioned above. We've been waiting for 4-5 months for this appointment, and the first portion was a parent interview. That meant I spent 1.5 hours walking through everything Teddy can and can't do. Unfortunately, there's a lot more can't than can when you're asked to compare Teddy to a typical 6-year-old child. I had to chuckle when the only questions that didn't apply to Teddy on the ADHD screening were the two that involved speaking ... only because he doesn't speak.

It might sound weird because clearly we know all the things Teddy can't do that a typical first grader can. But it's such a normal part of our life that most often we complain about things being hard, but we're still used to it. It's the times that you're forced to write down and tell someone else exactly what your child can and can't do that remind you of the thing you try to avoid focusing on: how different your life is from others, from what you expected.

But, I've filled out all the forms now, so I'll give the teacher portion to his teacher, collect that and continue on with life until we do several hours of testing next month. I'll hope for the best that day and then relive all these feelings when we get the results in black and white. Still, it's worth the emotional roller coaster for the information we should gain.

A Blessing and A Curse

One of the most challenging aspects of Teddy's diagnosis is that he has an extremely high threshold for pain. That's dangerous on a non-verbal child who can't articulate what hurts and often shows no sign of discomfort until things are seriously wrong. When he's tired or upset, he will cry more easily for pain, but it usually takes a whole lot to faze him.

That turned out to be a blessing yesterday when we knew exactly how much pain and discomfort he should be experiencing. He was playing at the park with his staff, went down the slide and came off covered in bees (likely yellow jackets). His staff reported to us that Teddy got stung twice on the face, and that his staff got stung a couple times as well shooshing the bastards off Teddy (my words, not his). When Dave was helping Teddy out of the vehicle, 6 half dead bees fell off Teddy's jacket, and Dave picked off one more later in the house. Dave pulled one stinger from another spot. Based on the welts, our best guess is Teddy got stung 5 times on his face.

He had welts and was a bit swollen, and we immediately gave him Benadryl and kept a close eye on him for an allergic reaction as this was the first time he was stung. Aside from the welts, you wouldn't have known he was stung. No crying. No rubbing his face. No scratching.

I just got stung last week Friday, and that still itches at time. I used ice packs for several days and couldn't sleep one night because it itched so much. Apparently I'm a major wuss compared to Teddy.

We e-mailed his staff to find out how he reacted in the moment he got stung. The answer was that he cried for a minute and then seemed fine.

Five stings. One minute of crying.

It's a blessing and a curse, but yesterday it was a blessing.

Guest Post: Big Brother

This is a guest post by AJ, Teddy's older (and awesome) brother. He wanted to share his perspective on life with Teddy.

Hi, I'm AJ. I'm Teddy's older brother. My favorite color is blue. My favorite animal is a penguin. My favorite books are from Dr. Seuss. My favorite foods are from my mom and dad.

Living with Teddy is sometimes frustrating, but we try to work around it. It's fun to have Teddy around, but sometimes he gets into a lot of trouble because he thinks everything is safe. Unless it's not safe, then he just does it for fun.

Working with Teddy is hard at the same time as easy. Playing along with Teddy gets really easy. Sometimes playing with the neighbors with Teddy is hard because sometimes the neighbors don't get along with Teddy.

Teddy has a three-wheel bike with a handle to direct him in case he goes running toward a ditch. Otherwise, he's a good peddler and is kind of safe on his bike. But he aims for ditches.

Teddy's birthdays are really special for me because it's my younger brother's birthday, and it seems special for me to be his older brother.

My favorite thing about Teddy is his joyful little smile and his playful moods. I don't like when Teddy is a little too aggressive and kind of hits or kicks sometimes. But that's only once in a while.

I wish that Teddy could talk and tell us everything about himself. It would really be cool. I also wish that Teddy wouldn't have seizures because it would make life a lot easier not going to the doctors at the ER. But those wishes will probably not come true.

Brothers and goofballs. 

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.