Winter Picnic

One of my favorite winter traditions is our winter picnic. This winter hadn't cooperated with a lack of snow, then insanely cold temperatures and then a very busy February. So when the weather looked beautiful this past weekend - highs in the 30s - I reached out to my dad to see if we could do the picnic, even though we wouldn't have Dave because he was in Florida for work.

My dad said yes, which is good because just a couple days later the unseasonably warm temperatures destroyed our snow. And snow is a crucial element for winter picnics because a winter picnic includes rides on the incredible snow tube contraption my dad designed and built years ago (probably 8 years?). 

So the boys and I headed to the farm for a fun-filled day. It felt different, for sure, without my mom, as she was always willing to ride the tube and entertained Teddy for periods while we got things set for the picnic. But she'd be happy to know the tradition continues and that more fun memories were made.

In recent years, Teddy has been skittish about riding the tube, preferring to ride the ATV with Grandpa instead. This year he was all in for several tube rides with AJ and asked to ride with Grandpa while AJ drove. He was all smiles, even if I couldn't capture them through the windshield of the ATV.

We had so much fun we weren't even jealous of Dave in Florida.

The weather was beautiful, the fire cooked our hot dogs and s'mores perfectly, there were tractors to ride and there were even a couple shovels for Teddy and Grandpa to dig in the snow together. (Of course, Teddy kept trying to dig my adult beverage out of the snow, where I was storing it between sips for supposedly safe keeping.)

As we pulled into our driveway at the end of the day, after our 2+ hour car ride home, AJ thanked me out of the blue and commented how much fun the day had been. Now that he's a teenager, those type of unsolicited thanks and praise resonate even more.

The boys convinced Grandpa to ride the Beast.

Love is Inclusive

I know I'm late to share this since Valentine's Day was nearly 2 weeks ago, but it'll be worth the wait. 

Teddy was invited to a Valentine's Day party, as was his entire class, at a local venue that's pretty darn classy. One of the local high schools coordinated this dance for all the middle and high school students to give them the opportunity to shine, as many of them aren't able to enjoy the traditional middle school dances or high school dances like prom, homecoming, etc. for various reasons. So this was a dance designed to let them enjoy music, dancing, food, friendship and fun ... and it was a huge success.

I'm so proud of one of our childcare providers, who happens to be one of the two teachers who coordinated this event. They reached out for various donations and were able to provide this event at no cost to students (except for if they wanted unlimited soda). Kwik Trip, a local gas station that's a Wisconsin staple, donated all the pizzas. The venue was donated, and a local bakery that I know quite well (OK, my bakery Nonesuch Bakery, donated paint your own cookies for all the goodie bags.) It was heartwarming to see the community come together for these kids.

Teddy and all the students had a blast! We got to see so many pictures of Teddy dancing and hanging out with his friends. Because all the schools in the district were included, he got to see one of his good friends from last year who's at a different school now. He was so excited to see our childcare provider, who teaches at the high school. He also knows her boyfriend quite well from family dinners at our house, so he was stoked to see Jake and drag him everywhere. 

"No, over there!"

It often feels, as parents of a child with disabilities, that we have to advocate, fight and ask for everything. And that's often the case. So when others go out of their way and make it easy for our children to be included and accepted for who they are, that means the world to us. 

Look at that joy!

So that's my takeaway for everyone who doesn't have a child with unique needs-look for the little ways to include others who may be different. When you open the door for us and invite us in, it makes our lives so much easier. 

Expectations Vs. Reality

If you have children, you know things rarely go according to plan. (Honestly, if you're alive, you probably know things don't go according to plan.) If you have a child with disabilities, then it's guaranteed that your expectations will rarely be reality. 

This past weekend we got several inches of snow. Playing in the snow is one of the few things AJ actually enjoys doing with Teddy ... it's one of the last shared interests for play as AJ is maturing. So we spent some time outdoors shoveling snow and playing in it during the storm, which was fun for the whole family.

I find there to be few things as peaceful as a walk in the woods with fresh snowfall. Now, I knew a walk in the woods wouldn't be peaceful with Teddy, but I wanted a family adventure so off we went. I knew that my ideas of "hiking at least a mile" were doubtful, especially with the small trail we went. I knew my husband's expectation that he'd just pull Teddy in the sled were even more dubious, as was his belief that Teddy wouldn't notice the school playground. What I didn't realize was that AJ also had expectations of pulling Teddy in the sled by himself to help. Teddy's expectations I believe included eating copious amounts of snow and finding a playground to enjoy. 

Those are genuine smiles. 

So reality looked a bit like this:

1. Everyone happily walking, except Teddy who was in the sled being pulled by AJ. Me wandering ahead and making an extra loop to enjoy extra time while we putzed at our slow pace. This lasted maybe 5 minutes or so where everyone was happy.
2. Teddy tipping out of the sled and deciding Dave should go in the sled. So AJ and I pulled Dave surfing style for about 20 feet until he begged us to stop before he toppled. 
3. That led to me surfing for a couple hundred feet as we looped around the lake.
4. Teddy spotted a gazebo and had to explore. That was easy. The hard part was convincing him to leave.
5. We were excited to find the book Bear Snores On on display to read, even though we read it completely backward.
6. Teddy spotted the playground and tried to make a break for it.
7. Teddy flopped. Multiple times.
8. Teddy was willing to get in the sled with AJ, which meant we were pulling about 240 pounds. 
9. Teddy fed AJ snow. (This was my favorite part of the walk, and I got it on video that won't upload here.)
10. Teddy flopped. More times. 
11. We got Teddy in the sled and booked it as fast as we could to get closer to the car. AJ was disappointed not to pull Teddy on his own.
12. Teddy flopped. More times. 
13. We made it back to the car. Everyone was disappointed in their own way, some big and some little. 

But we got to enjoy almost an hour of sunshine, fresh air, some laughs, exercise (especially hauling 2 kids) and family time. Life isn't perfect, but it's about enjoying the moments and trying to make memories. 

Cooking in Style

One of the requirements of being Teddy's mom (or parent) is advocacy. As Teddy has no voice with which to advocate for himself, or even express his wants, we serve as his voice Sometimes that means translating for him because he certainly can communicate in his own ways. Other times that means speaking up for him (and his peers) to ensure they have access to what they need and deserve.

Through conversations with Teddy's team last fall, we learned that his life skills class wasn't intended to continue through the spring semester. This life skills class, for typical 6th graders, covers basic life skills like laundry, housekeeping and cooking. The teacher does an amazing job with an adaptive life skills class that focuses on similar skills, with an emphasis on cooking. This class is one place where Teddy gets additional support from OT and PT and often spends time interacting with other students and adults through deliveries throughout the school of homemade treats and goodies. If you can imagine, with as much as Teddy loves food and loves people, this class is his favorite! It's also extremely practical skills for him in life and an area where he shines in his own way.

While this class only lasts one semester in the standard 6th grade schedule, there's nothing standard about Teddy and his peers. We were excited to learn that the team had already coordinated and thought it was feasible to continue the class at his IEP in December. But ... they were waiting for approval from the district. 

So, naturally, we asked who needed to approve it, so that we could send an e-mail. I promptly drafted a beautifully written advocacy e-mail that evening and patiently waited ... an entire week. Rather than simply being frustrated that I got no response, I reread my email and realized I didn't specifically ask if the class would continue. So I redrafted my e-mail and resent it and patiently waited until I got a response the next day.

That response was along the lines of thanking me for my feedback and that schedules were already set for spring, so they'd try to incorporate this for the next school year. Knowing that Teddy's team had already coordinated and knew they could fit this into the schedule, I asked if there was any other barrier preventing the class from continuing through spring. Thankfully we were informed that the class could indeed continue! (I'm glad ... because otherwise we would have called another IEP to specifically request it, even though we just finished an IEP.)

My intention is never to be a pain for the school district, or anywhere, but I will advocate always for what is best for Teddy as kindly but strongly as needed. We try to be good partners, offering support to Teddy's team, brainstorming and showing our appreciation for all they do. So, after hearing how much all the kids enjoy "helping" each other tie their aprons, even though no one can actually tie the aprons, I offered to make no-tie aprons. The teen life teacher accepted that offer, so I finally finished 4 aprons this week (using some of my mom's fabric, which she would have loved). 

It seems the aprons are a hit! I was rewarded with a picture of smiling faces wearing the aprons. (I don't know that they were as excited about the aprons as they were the milkshakes they were making that day, but I'll take it.) 

Look at those smiles!

It's a sweet success to continue this class!