Train Time

When you live in Wisconsin, you look forward to signs of spring. Whether it's early tulips and daffodils poking through the cold ground, the grass slowly turning green or the warmer days, they're all harbingers of spring. Teddy's favorite sign of spring, though, is the start of train rides at the National Railroad Museum. 

We're fortunate to live within an hour of this incredible train museum. Like our membership at EAA, one day I hope to go and actually read all the exhibits, but for now I get to enjoy bits and pieces, whatever I can read in the moments that Teddy stays in one place. Usually, though, he's on the go exploring all the trains. This museum is fantastic because so much of the exhibits are a "yes," not a "no" for Teddy. What I mean by this is that you're allowed to climb inside and walk through more of the displays than not, which is exactly what Teddy wants. 

I mean, really, it's not enough to just see a train. You have to walk through it, sit in it and, of course, try to drive the engines! That's how you experience the full joy!

One of the great things with a membership is that we can visit for 20 minutes if Teddy isn't feeling it (usually never the case) or as long as we want. A membership means a quick visit is just as worth it as a long visit when you're not paying an individual fee for entrance only to have a tough day and have to leave early. 

The best part of the membership, though, is the train rides that are included! There's a 20-minute or so train ride every 2 hours during the warmer months. A perfectly time visit starts with a train ride, followed by exploring all the trains and exhibits, capped off with a second train ride. (We might be the only family to double up on train rides, but I doubt it.)

Train rides are one of the best things!

This past weekend was the NFL draft, hosted in Green Bay. This meant the population of the city was more than doubled in size to host this event, which made people shy away from the city if they weren't there for the draft. It also meant the train museum ran train rides on the hour.

So we drove the hour north, hedging our bets that traffic wouldn't be a nightmare and that parking at the museum wouldn't be too bad. And we struck gold. Since so many people didn't venture out, the museum was remarkably quiet. In fact, we had the first train ride as a private train ride, during which Teddy befriended the conductor and made him sit right next to him. It was a great experience, fantastic to hear this kind volunteer who trains all other conductors take interest in Teddy and share how they are dementia certified and work to make it a great experience for all people. We got to witness this in action on the second train ride of the day when another child who plays in Teddy's baseball league was really excited and then agitated and sharing that with vocalizations. The conductor simply paused in his tour when necessary and picked right back up, never judging or making the experience anything less for anyone ... well, except maybe Teddy who still thought the conductor should sit right by him again. 

Teddy and his new best friend, all smiles!

When Darling Becomes Dangerous

This. This is one of my greatest fears.

Click here to read the news story.

That my non-speaking child will be perceived as a threat and lethal action taken.

I dread the day he ceases to be seen as cute and is perceived as a threat. It's easy enough for me to imagine a slightly different situation with Teddy that looks equally dangerous to people without context. Whether it's a knife, a power tool or any other "weapon," I know Teddy wouldn't process police commands, even if he understood them, quickly enough. I know that his hysterical giggles, especially when he thinks he's being silly, could be mistaken for maniacal laughter. I know he doesn't have the words to explain his actions, and that not responding can be perceived as non-compliance. I know his unsteady gait could be mistaken for alcohol or drug impairment.

I also recognize that I'm not alone in this. So many other mamas fear the same thing. For many, it's because our babies are different than society's norm. (Honestly, we're all different, so what is the norm?) But for others, it's simply the color of their babies' skin.

Rare

Rare. 

One in a million.

Carving my own path. Writing my own story. Changing the world without a word. 

Rare joy. A smile that lights a room. Saving grace from my shenanigans. Jumping for joy. Living in the moment. Laughter that captivates.

Rare strength. Tirelessly working. Adapting. Learning. Trying.

Rare love. My people are my everything. They understand without words. They hear my heart.

Rare friendship. Brothers bonded. Advocate, teacher and protector. Fierce defender. Fun friend.

Rare enthusiasm. Bouncing for buses. Tractor time. Train rides create treasured memories. Pontificating for pontoons.

Rare. Loved. Valued. Beyond measure. Beyond words.

Rare. Loved. Valued.

*This came from a training on diversity that encouraged us to describe ourselves in 100 words. I then completed the exercise for Teddy as I often serve as his voice. 

Spring Break Sickness

Ironically, Teddy got sick again this year exactly a year to the date as he did last year during spring break. Last year, his bout of RSV destroyed our spring break plans, and our spirits to be honest, because we had to cancel our flights and hotels. This year we had no big plans, so his crud only ruined his spring break and mildly messed up our adult plans for work and visits with grandparents. Thankfully, AJ still got 2 sleepovers and 3 visits with friends, plus a super fun escape room camp. I'm glad his fun wasn't hampered by the crud. 

Also, I'm grateful Teddy weathered his weeklong illness with no seizures. He had a pretty toasty fever of 102, and he weathered it overall well. He wasn't so miserable that he was trying to climb out of his skin, no vomiting (which for some odd reason makes him want to strip naked ahead of time?) and no hives. All in all, he handled it extremely well. Sometimes we forget to be grateful for these blessings.

He's the happiest sick kid you can imagine sometimes.

To be fair, it's a bit harder to be grateful when he passes the nastiness to me, and I realize just how miserable he was. It knocked me out of running for a full week (and it's still a wee bit hard to breath), but thankfully I'm on the very tail end of it with just occasional coughs. This allows me to be fully present for the Wisconsin Autism Conference, which is great learning opportunity for me.

With an extremely rare genetic disorder, there's minimal research and resources for PIGN and CDG, though our small community is strong and extremely helpful. With his autism diagnosis last year, it was almost overwhelming the amount of resources and learning opportunities that exist.