Miracle League - 2026 Season

When you have a child with disabilities, you discover an entire world that you didn't know existed. I'm so grateful we are living in the era we are in terms of access to services, resources and opportunities to enjoy childhood for Teddy. There's so much that exists now that I don't believe existed during my childhood. 

One of the amazing opportunities is Miracle League, which provides kids the chance to play baseball on an accessible field partnered with amazing volunteer buddies who support their needs. Year after year, Teddy has had great buddies, and this year Sam did amazing with him. From the first game, Sam was comfortable interacting with Teddy, guiding him where they needed to go and supporting him to bat and run the bases. It is so cool as parents to see these young volunteers shine with how they interact with our children, and Teddy lit up when he saw Sam each week.

Sam + Teddy = All smiles!

This season was extra fun because Teddy has become best friends with Mikey through school this year. As parents of a non-verbal child, it took us a while to realize Teddy had this best friend, but we eventually figured it out. These two boys cannot get enough of each other. It doesn't matter if they spend hours together during the day, they're constantly wanting to hang out again with each other. 

So they were on the same baseball team, which meant every Tuesday we got to hang out together at the ball field. Teddy loved having his friend with him to bat next to him, play together in the outfield, get ice cream before or after the games, share supper before and ride together to games. Their friendship made this season extra sweet for all of us.

These two are something else together!

We're lucky that Teddy has such amazing family and friends. Every game came with a cheering section, complete with grandparents, great aunts and uncles and our adopted kids or some combination thereof. It's truly a blessing to have family and friends who show up for us to share in the ordinary moments of summer that really are the extraordinary moments of life. 

Summer Bucket List

It was a year ago that I was in tears, struggling with the transition for Teddy from the elementary school where he'd been for 6 years (5 with the same teacher) to a middle school that none of his elementary friends would attend. I knew it would be fine, but it was hard to say goodbye, especially with Sigrid there to fill us in on the daily shenanigans.

While it was a bit bumpy to get the school year started, I can confidently say that Teddy is rocking middle school with the support of his team. He has developed some great friendships that go beyond the classroom, and there's so much excitement to see his friends at after-school activities. He's made friends with his peers, and, of course, he's befriended his paras, teacher, therapists, nurses, and more. 

It's clear how much his team has learned about Teddy this past year - and how well our communication system is working with a non-speaking child - to see his summer bucket list. They absolutely nailed it!

This is perfectly Teddy!

Aside from missing a pontoon boat ride, this list is Teddy. It's a little thing, a bucket list activity that so many kids do this time of year, that captures the big, important things ... that his team knows him, understands him and cares for him.

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. 

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. 

Diagnosis Day 2.0

We have a new diagnosis day: January 31, 2024. 

Last month we did neuropsychological testing with Teddy. It was not a pleasant experience, nor did I expect it to be. Teddy isn't fond of medical offices nor is he great at standardized testing. We requested the referral because we're struggling as a family ... and have really most of last year ... in how to best support Teddy. So we felt it was worth the challenge of the testing to hopefully unlock additional resources.

This behavior, laying on the ground after school, is one of those behaviors that challenge us.

His testing resulted in him meeting the criteria for 2 additional diagnoses: Intellectual Disability, which I already thought (incorrectly) was in his chart, and Autism Spectrum Disorder. Honestly, we were expecting an autism diagnosis, especially after our first parent meeting with the neuropsychologist. 

Still, it's something to process. It's surreal to go from an extremely rare diagnosis, so rare that 3 medical research papers were the only information available online when we got the PIGN-CDG diagnosis, to one so common. We received a laundry list of potential resources when we got the autism diagnosis, and within 4 days we had a one-year membership in a local autism resource group, a discount to attend a statewide autism conference, a full booklet of resources in our area and a paperback book to learn more about autism. It's a bit overwhelming as there's so much information and so many resources, but in a good way. 

Despite an abundance of resources, it's going to take patience and effort to get services started. An autism diagnosis is required in Wisconsin to qualify for ABA (applied behavioral analysis) therapy, which was specifically recommended as something that could highly benefit Teddy. A number of providers do not serve children as old as Teddy, so that limits our options. A lack of qualified staff means that wait lists for after-school hours are 8 months to a year. Yep, you read that right.

So Teddy is on a wait list for a local provider in Oshkosh that serves only after-school hours for Teddy's age, with the potential to start in fall but realistically next January. That provider would be extremely convenient as it's after-school hours, but it's only 8-9 hours a week. While that might seem like a lot, and it's far more than he's receiving now for therapy, I'm not sure it'll be enough to help him make the progress we want for him. 

That means he's on a second wait list for a provider in Appleton, about 30 minutes away. That provider already has done a parent assessment (a detailed 1-hour interview with me), and Teddy is scheduled in May for an in-person assessment. Their recommendation is 10-20 hours of therapy a week, leaning toward the 20 hours to accomplish the goals we discussed including toilet training. Needless to say, that's daunting, though I can see how beneficial it could be. The tentative gameplan is that he'll hang on the waitlist until summer and then start therapy 4 hours a day (9-1) 5 days a week. Then we'd hope and pray that come fall he could get slotted into afternoon hours (1-5) and set up his transitional IEP to middle school to accommodate this. I'm not as concerned about the transitional IEP as I am in getting the afternoon hours because the wait list for the 3-5 time slot is 8 months to a year right now. But we'd have to figure out afternoon hours or else he'd never be in school.

It's hard to know which is the better option, though it's easy to know which is least disruptive to our lives. But the disruption may be worth it to eliminate reduce the daily challenges. So we'll continue to pray, ponder and wait. 

And how we make any of this work, I don't know yet, even for the summer hours, because we still have to line up childcare for this summer. But I remind myself we're doing this for good reasons, and while ABA therapy is a lot, it's exactly what we hoped in terms of additional resources and ways to better support Teddy.