Intentional Learning

Whew, life is busy. 

So, it feels good to spend some intentional time learning and leaning into how we can best support Teddy. This intentional time makes life even busier, but it's a worthwhile way to spend our time.

This month we started parent training through a local organization. Parent training is a component of Applied Behavioral Analysis (ABA) training, and it can also be a standalone component. Although we're on the waitlist for actual therapy services, this gives us 1 hour a week to learn about ABA components and start practicing some of the techniques. I love that we're doing it in our home with Teddy present, so we can brainstorm on specific situations. What we've found to be helpful, in and of itself, is simply taking an hour each week to talk through situations and collaborate on how we could handle things differently to better support Teddy. 

So often, in the moment with high emotions, it's a matter of just surviving that moment and getting through the to-do list for the day. This intentionality and collaboration with both parents and a trained therapist helps us slow down to do better. We know none of this will chance anything overnight, but we're getting ideas and hopefully will see progress over time. (Heck, I've had 3 days where Teddy has come inside after school without flopping on the ground in the past week!)

Now I'm at day 2 of a 3-day statewide Autism conference. I'm a learner by nature, and this is a great way for me to embrace this new diagnosis for Teddy. It's refreshing in a unique way to attend this conference because some of the social norms don't exist here. In fact, this was the start of the conference for me:

This is brilliant!

Seriously, I think every conference should have these stickers. Let's be real. I'd probably be yellow at some conferences. I've seen people doing the things they enjoy that help them focus (like building Legos) during sessions. There's more fidgets (or focus toys depending on your viewpoint) than you can imagine. There's so many helpful vendors here in the exhibition hall to learn about amazing things, even if they don't apply to Teddy. 

It's a lot of information to process, but I'm grateful for the opportunity to pause and invest in learning. 

Final Elementary Concert

Tonight was Teddy's last elementary school concert. We have come so far in his elementary years in so many ways. Here's just a few:

1. Teddy wasn't included in the school concert his kindergarten year. It was one of those awkward questions of whether we should be coming to the concert as we hadn't heard anything. When we saw his kindergarten graduation and how he loved participating in the 3 songs at the program, we immediately decided there's no reason he couldn't join for every future concert. After conversations with his team, he was included in every single concert since. 
2. In the early years, Teddy needed someone right by his side for every moment. Each year, it seems like we've celebrated in whispers of, "Oh, look! He stood where he was supposed to by himself for 10 seconds ... 30 seconds ... a minute." That time has increased, and he's gotten much better focus.
3. His dance moves now include his para joining in. This year he made her clap, dance and readjusted her because she wasn't standing correctly, according to the world of Ted. And through it all, she was smiling and happy to support him. This was actually the first year he didn't have his main teacher Mr. Skaaland supporting him (that I recall) because he was helping another student. 
4. He's learned to play the ukelele. Well, that might be a stretch, but he got to play the ukelele this year. He was sooooo darn proud. We've been talking about this for more than a week, and he was so excited about his concert and especially playing the ukelele.
5. Everyone knows Teddy and roots for him. He literally got nearly a standing ovation from the 4th graders taught by Sigrid (our childcare provider who also happens to teach at Teddy's school). He had so many people come up to him afterward and tell him what a good job he did. He had friends come up and say hi.
   

The timing is a bit coincidental because yesterday I got a voicemail inquiring which elective Teddy was taking next year: orchestra, choir or band. I chuckled as I called his soon-to-be new middle school back. My answer was along the line of, "Well, Teddy is non-speaking, so I think choir isn't the best fit. I don't trust him anywhere near a stringed instrument, so that rules out orchestra. He does love music, though, so he'd absolutely love band if he could play some sort of percussion. I'm not sure the band teacher would love that, though." 

Apparently I was wrong because, clearly, he did play a stringed instrument tonight. But it didn't have a bow (aka a weapon), and I think they give him the ukelele that's already been loved the most. We'll have the more serious conversation about middle school and electives and integration opportunities starting at his IEP next week. Now to prepare for that while watching ukelele videos ...

House of Cards

Ya'll ... I was so excited but busy preparing for our spring vacation that I didn't get a post done in advance. I was going to share all the details, the highlights of what we'd see and all the preparation and planning that went into making this trip happen. (Seriously, we're talking prepping for flights months in advance with discussing medications with neurology to help with any challenges on the flight, coordinating to bring one of our amazing childcare providers along and weeks of discussing the flight with Teddy and watching videos to help prepare him, not to mention all the packing.)

Last week Monday, Teddy woke up early (around 4 a.m.) which isn't that extraordinary for him, but with all the pre-flight jitters, we were a bit concerned. So we temp checked him to find a mild fever of 99.3. Now, most people, wouldn't bat an eye at that, but when you combine that with a history of seizures and a flight to Arizona the next day ... well, that meant we got the prize of being the first people at walk-in clinic at 7 a.m. 

It's great that the doctors at walk-in clinic recognize us, right? *Sigh* At least they are understanding of why we brought him in on the first day with this minor symptom. He checked out OK, but they gave us the option of running the respiratory panel. We went ahead with that, hoping for more information to help reassure our vacation plans .... and we got a diagnosis of RSV.

That's a new one for us, though research indicates I'm sure both our kiddos have had it in the past. It's the first time we recall actually getting the diagnosis, though. I spent time with the nurse discussing and trying to determine if we were still OK to travel. She indicated we should be fine, as long as he could mask around others to avoid spreading it to those more vulnerable.

After a lot of tough discussions, including weighing in with our childcare provider who nannies for other families with little ones, we made the incredibly hard decision to cancel our trip. A trip with a child like Teddy is like a house of cards - a ton of fun and work to create but easily destroyed. There were lots of tears. Ultimately, though, our childcare provider couldn't risk bringing it back to the families she cares for, especially as one of the moms is due this week with a brand new little one. Also, we had no idea how Teddy would fare with RSV, whether it would be really mild like a cold or whether he'd be miserable.

And we made the right call. This was what we woke up to at 3 a.m. Tuesday morning. 

That's really high, especially since he had Ibuprofen before bed.

This would have been what we discovered waking up to get ready to fly out, and we would have had to cancel the trip that morning and not perhaps be able to get credits and refunds on most everything. That would have been even worse, though cancelling a much-anticipated trip is one of the hardest things to do.

But had we been on vacation, we would have been up between 3-4 a.m. in hotel rooms for the first 4 nights (and then only sleeping until 5ish for the next couple nights). It's truly for the best, though it wasn't what we planned.

We did still manage a bit of fun at the end of the week, as Teddy was feeling better (though he still hung onto a fever for about 6 days). He got to enjoy a farm show two different days, as did AJ. Both of them had a great time with that. We also checked out the Chicago Museum of Science and Industry, which is a whole other story.

As for that vacation? We'll see if we can't squeeze it in and rebook it yet this school year before the weather gets too warm in the desert. We know we can't wait until fall when it cools off because the start of a school year and fall means we're almost guaranteed illnesses all the time.