Super Swim Sessions

Teddy has done adapted swim classes through the local YMCA for several years now, and I know I've talked a few times about how wonderful they are. For a very reasonable price, Teddy gets matched with volunteers who spend an hour in the pool with him while I get to watch how much fun they're having and be glad it's not me wrestling Teddy.

These classes serve a few purposes:

1. There's always the possibility that Teddy will learn to swim independently one day, and this is how that magic would happen.
2. Even if he's not independently swimming, these classes are fantastic therapy sessions for him that incorporate his speech, fine motor and gross motor. 
3. Teddy loves being in water, so it's an activity that he enjoys.
4. We get a break for an hour where we get to see the joy on Teddy's face when we're not putting in all the effort, so we can truly enjoy it. (Or we can just get an hour of work done that wouldn't happen otherwise.)

We usually skip the summer sessions because we head to other pools, so we just do the fall and spring sessions. Hands down, our favorite are the fall sessions when the YMCA partners with class at the local university and has the students teach the swim lessons as the main part of their adapted physical education class. It's fantastic because there's usually two students matched to each participant, and everyone has such a great time once the students get past their initial nerves. 

He is such a lucky kiddo to have these amazing ladies as his teachers!

I heard tonight that another local college is looking at the possibility of doing the same program in the spring semester. That would be awesome because otherwise the program is largely supported by volunteers, so there's less help to go around. That's when I feel a bit bad about someone older than me having Teddy to manage for an hour by herself because, quite frankly, he's a workout. He's adorable, but he's a workout.

So, we'll see what spring brings, but for now we'll be so grateful that Teddy is matched with two young ladies who ask good questions, try different things and are already wrapped around Teddy's finger. 

The Little Things

Last night Teddy and I attempted a run while AJ was at his Minecraft coding class. There's a 45-minute window for us to run that lines up perfectly with a local running group's run, so last week we joined them, broke off early to be back in time and had a splendid time. This week, though, it was cool with gray skies and rain looming. I had checked the radar, and it looked clear for the next hour, so I thought we'd be fine.

The raindrops started before we even began running, followed by the the first lightening flashes within a couple blocks. Within 5 minutes, the rain was picking up speed with lightening and thunder quite plentiful. Teddy and I bailed as quickly as we could into a building just as the skies unleashed their full fury. Whoops.

Fortunately we were only a half mile away from where we started, and we still had 40 minutes to wait out the storm. Once the rain let up, we continued our run back to the vehicle. The streets were soaked from the downpour, and so were my feet as I ran through ankle-deep water.

I threw Teddy into the car as the rain picked up, and he was full of giggles at our adventure. See, Teddy likes the feeling of raindrops. And lightening and thunder don't faze him in the least. This was his idea of a good, fun time.

He doesn't fear the storm. He is the storm. 

After a bit of playing in the car, as Teddy kept opening the door because it was funny to have it rain inside, we headed inside looking ridiculous trying to carry Teddy and an umbrella. Then he discovered the giant gym with built-in bleachers at the rec department and thoroughly enjoyed the rest of our wait running around, giggling and exploring.

He finds so much joy in the little things. Sometimes he's remarkably chill and goes with the flow as our plans unravel and isn't disturbed by things that would concern others like rain storms or waiting for his brother to be done with class. Then again, other times, waiting is incredibly hard for him as was evidenced by the swim class that followed coding class. I get that, though, because it's hard when there's a pool right there that you can't enjoy.

So, we really didn't get much of a run, but at least Teddy enjoyed our soggy adventures.

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.