Monday Musings

With beautiful weather this evening and an extra hour of daylight, we headed outdoors after supper to enjoy it. AJ and Dave went for a walk, while Teddy and I logged some running miles. As we ran along, I noticed that while not everyone smiled and interacted with us, the vast majority of folks did indeed smile at us. 

Now Wisconsinites are generally pretty friendly, so it's not unusual to greet strangers. What I noticed, though, was that most of the people who smiled at us were smiling as we approached. I realized, and said aloud to Teddy, that he simply brings people joy. I'm sure that his excitement to be outdoors and running was what brought a smile to their faces.

At the end of their run, Teddy and I visited a park to play for a few minutes while we waited for Dave and AJ. He loves parks and asked for it each time we ran past.

Teddy's a fan of parks any time and any where. Dave, not so much.

There were a couple boys around Teddy's age who had waved at us as we ran by the first time and waved again when we stopped at the park. I asked if they knew Teddy, and I heard them acknowledge they did. Teddy ran right up to them, and one of them hopped off the swing for Teddy to take a turn. 

When Teddy ran off to the playground structure to climb, the one boy encouraged the other to go play with Teddy. So, they did ... after singing the Barbie song. I figured Teddy was fine playing with his friends, so I walked his chair over to the picnic area before coming back to stretch.

It was really sweet to see them all playing together. The 2 boys included Teddy, offering him turns to race down the slides with them and encouraging him up the playground structure the one time he struggled because he was trying to scale up the wrong spot. I hadn't caught their names when I asked them the first time, so I tried to fish around to figure out which classroom at his school they were in to piece it together perhaps. 

I asked if they were in Teddy's classroom, and they both said no. Imagine my surprise when both of them said they went to different schools. *Whoops. I clearly misheard them when we first arrived at the playground.* 

I asked how they knew Teddy, and they said they didn't but they just liked making new friends. Then one of the boys said, "Not to be rude, but does he have a disability?" I shared that Teddy has autism and a genetic disorder. 

Well, the second part prompted quite a few questions to help them understand what that meant. I explained that Teddy doesn't talk like us, but he uses a tablet, sign language and gestures to communicate. The one boy said, though, "Oh, he's just like other kids but he doesn't talk." I said that it takes Teddy longer to learn to do things, like walk, but that he loves to have fun just like they do. 

The autism part they understood, so they questioned whether I knew every autistic child they knew. The one shared about his brother's autism diagnosis and how his brother loves to read about the things that interest him. 

The boys complimented Teddy's chair and thought it was really cool. They asked how far we ran, and I told them we ran 4 miles. The response was awesome from one of the boys: You're mom of the year! So I told them Teddy runs in races with it, and that we use it for biking.

That prompted the more outgoing boy to share that he loved riding bike with his dad, but his dad wasn't able to go for bike rides now. I got the sense where he was going before he said his dad was locked up for something he didn't do ... and that he won't see him until 2026. That broke my heart for him and made me realize, yet again, how blessed our family is to have a stable family unit despite the challenges that come with Teddy. 

That's about when Dave and AJ arrived, so we had to leave. I walked away a bit in awe of what had just occurred. Given how the boys interacted with Teddy, I would have sworn they were peers at his school. Instead, they were just being good humans who didn't think twice about including someone new, lending a helping hand where needed and seeking to understand and make connections. Seriously, I didn't even mention that Teddy didn't talk until the end of the conversation because, again, I thought they all knew each other. 

It was just a heart-warming moment of the best of humanity ... from two 5th grade boys. (And lest you think they were angels dropped into our lives, I can assure you they were 5th grade boys who also swore at least once and one bagged the other by accident. Pretty sure they're human.)

Springing Into Spring

It's been an unseasonably warm winter in Wisconsin, and that trend continues with an unseasonably warm and early spring. We all think Mother Nature is going to wreck havoc on our hopes (and unfortunately every living plant that has already started growing, not to mention all the critters out and about) with some wicked cold and snow yet. 

But for now we've been taking advantage of the warmer weather. That meant last weekend we spent the day at our land with light jackets (or no jackets when hiking) enjoying the sunshine and fresh air. It was a perfect day for tractor rides for Teddy, an outdoor picnic, ranger rides, fishing for Dave and some small but fun hikes. In other words, it was simply a perfect day.

Teddy found the swings and invited me to join the fun.

Aside from weekend fun, it's been busy here. We're on multiple wait lists for ABA services for Teddy, and that has come with a couple assessments. Most recently this week we had an assessment to start parent training, which is something one provider could offer as soon as next month until we can start services. (Wait lists for services range from summer to next January for the ones we're on, with plenty longer than that.) We're still praying and exploring and honestly waiting as we determine what therapy routes are best for Teddy. 

We also did an assessment for speech therapy and are going to attempt outpatient speech therapy again, at least to finish out the school year. That assessment was really tricky, though, because Teddy freaked out at that part of the clinic, and I literally had to carry him into the room. I'm not sure what triggered him, but I'm nervous it's going to continue as we attempt therapy. If that's the case, we won't make any headway with therapy because he'll never settle and be comfortable. So we'll see what happens.

He's also in a program called Advanced Development Motor Program, a program that partners UW-Oshkosh physical education students as part of their curriculum with kids with disabilities to provide a fun program for them. It's essentially 1.5 hours of gym, so Teddy loves it! In the past he's had a consistent "teacher," but so far this year he's trained 3 different "teachers." It's really a neat program that we're lucky to be able to access.

Aside from that, our next big challenge is finding childcare for summer. I know I've talked often about our amazing childcare providers. Unfortunately, neither of them are available for the hours we need this summer, so we're back to the drawing board. I like to think of this as a chance for us to "adopt" another person into our family. Ha, we probably won't be that lucky, but please do wish us luck as finding childcare for Teddy is always a challenge. 

Rare Disease Day: 2024

Rare Disease Day is always celebrated the last day in February, and it feels extra special when it falls on February 29 because that's extra rare. It's a day to focus on rare diseases and raise awareness of them. 

One of the common sayings you'll hear is Show Your Stripes. The reason is that often the medical community thinks of the most common diagnosis just as people most often think of a horse when they hear hoofbeats, for example. The challenge is to consider rare explanations as well, such as a zebra (or in Teddy's case PIGN-CDG).  This year, I was on top of my game and created these little key chain cards to share with Teddy's team and classmates at school to raise awareness. 

Another PIGN mom gave me the idea for these key chains. 

I time traveled this week, reading this blog post from 8 years ago in 2016:  Teddy's Triumphs and Trials: Rare Disease Day (teddystriumphs.blogspot.com) This was 3 months after we first learned Teddy's diagnosis. In the past 8 years, so much has changed. To name a few of the most significant:

1. Teddy's diagnosis is now PIGN-CDG, a more encompassing and accurate description than his original diagnosis of Multiple Congenital Anomalies-Hypotonia Seizure Syndrome 1 (MCAHSS1 for short because that's still not a mouthful.)
2. Instead of knowing less than 5 families with this diagnosis and being the supposed 15th in the world, our .community has grown to closer to 100 with the diagnosis and their families. 
3. Teddy is now 10 and capable of doing so much more than we could have imagined 8 years ago. Not to mention, he's thriving and has made an outright mockery of the life expectancy (3 years) given in the first medical research papers. 
4. An Internet search of PIGN-CDG now yields 6,360 results instead of 3 for MCAHSS1 in 2016. Seriously, that blew my mind that Google didn't have results for our son's diagnosis. 

Yet one significant thing has not changed: 8 years later, and there's still no treatment for this disorder. AJ does a great job explaining this in this Facebook post. (For whatever reason I couldn't get the video directly into this post.) If you'd like to support AJ's in fundraising for PIGN-CDG research, you can place your fidget order here.

This fundraising is so important because research is expensive. While there's much interest (and therefore money) dedicated to researching treatments for wide-reaching disorders and diseases, there's not much interest and money in researching treatments for a diagnosis that affects approximately 100 known people. 

But trust me, the effect this disorder has on those families (and their families, friends and communities) is far reaching. It's an honest statement to say Teddy's diagnosis has impacted every single aspect of our lives. Some of those impacts have been beyond positive: friendships forged, connections created and memories to last a lifetime. Others have been beyond challenging: sorrows shared as we lose children with PIGN (2 within a week of each other this month), trauma from seizures and sicknesses, endless appointments and therapy, elopements and other scares. 

For each of us impacted by this disorder, we care deeply about a treatment. We want to change the fact that we grieve the losses of our children every year. We want less hospital stays and better quality of life for all. Honestly, we want to sleep at night without fearing our children won't wake up in the morning. We want hope, not only for our children, but for those who have yet to receive this life-changing diagnosis.

Daisy: The World's Latest Love Story

One of our CDG children went viral this week, a sweet moment of Daisy dancing with her caregiver at the Taylor Swift show in Australia. You can see the clip that spread like wildfire on TikTok and Instagram here. 

Before anyone realized Daisy was a worldwide sensation, I had shared with our nannies the picture of Daisy heading to the concert. I love sharing what our PIGN kiddos are up to, and the girls are Swifties. (Heck, they're the reason Teddy starts dancing as soon as he hears Taylor Swift.) I wanted them to see how adorable Daisy was as she saw their favorite singer. 

Right away, one of them said, "I saw her on TikTok!" and sent me the link. 

Daisy with her caregiver and friend. 

Of course, I shared the news with Daisy's mom Libby, along with the link. In a matter of hours, Daisy had more than a million views and was well on her way to 2 million. The next day, people walked up to them in Melbourne saying they recognized Daisy from the video. Libby was able to connect with the TikTok creator and share more of their story. 

So later that week, the creator was interviewed on a morning show in Australia about why that moment captured his attention. I joke that I even got my 2 seconds of fame in Australia, referencing "a mom in Wisconsin" telling Libby about the video. 

And the next day, Daisy was featured on the front page of a newspaper in Milan, Italy. The story focused on how Italians want the freedom to enjoy concerts like Daisy, focusing on accessibility for those with disabilities. 

It's incredible how Daisy has captured such attention throughout the world, and that night was such a special moment for Daisy and her mom. "The best thing I witnessed was no one saw Daisy's chair for once," Libby said. "They only saw the girl in sparkles. And that made all the difference for Daisy."

If only we could all learn to see people for who they are, not their disability or adaptive equipment. 

For the Love of Sleep

If you've followed this blog since the early days, you know that sleep has been a challenge for Teddy through the years. Generally speaking, it's improved much in the last several years in terms of sleeping through the night, though we still have a much earlier "Teddy" alarm than we'd like most days. Trust me, if you need a good alarm clock to pry your tired self out of bed, I highly recommend one that involves 80+ pounds kicking a wooden door while moaning loudly. Works like a charm for us. ;-)

Of course, travel is still hard, which means vacations are challenging, and we rarely sleep anywhere aside from our home and our land where Teddy is accustomed to the setting. We drive 4, 5 or 6 hours in a day to make day visits to family rather than spend the night because we know that sleep will be hard to find.

But, generally speaking, Teddy does sleep better. We've worked with his neurologist to find the right combination of medications to both help manage seizures and help us all get rest at night. The trouble is that most of them help more with falling asleep (and restless legs, which he has as well) than remaining asleep. 

On Groundhog's Day, he woke up at 3:30 and was up for the day. I took the early shift that day because I didn't have to work my office job, so I figured I could catch a nap perhaps while he was at school. Given that I already had plans to run with a friend at 5 a.m. and it was warm enough to bring Teddy, I bundled him up, loaded his chair and headed out the door shortly after 4:30 a.m. If you're wondering what warm enough to bring Teddy is for Wisconsin winter, I aim for right around 30 with minimal wind. He was so darn excited to go running! While my friend was a bit surprised, she pitched in pushing him. I joked to him that though it was Groundhog's Day that we weren't repeating this. 

Can you see his excitement?

Post run - still smiling despite the early hour.

Of course, I lied. That was Friday, and Tuesday morning he was up for the day at 2:30 a.m. (We think he fell out of bed that morning and woke up when he hit his hard floor. Game over. Up for the day.) Dave took the first 1.5-2 hours, and then I took over. Again, it was warm enough, and I already had plans for running, so off we went for a 5 a.m. run. My friend are great, so this friend was a lifesaver when my fingers were numb in getting Teddy out of his chair and buckled into the truck. 

Groundhog's Day repeated. Still all smiles. 

Now if you're wondering if he napped at all either of those days ... nope. Not at all. He was definitely tired but powered through the whole day. 

The good news is he had a neuro appointment last week, so we were able to discuss his early morning wakings. We did a medication adjustment, so hopefully once he gets adjusted at the new dose (and over this virus that causes coughing fits that wake him up now), we'll all get some better rest. 

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. 

Shoe Sponsorship

All shoe companies, listen up. I'm offering you the rare opportunity to work with a 1-of-a-kind partnership for your brand. This kid is one in a million (actually more rare than that!). He has a smile that lights up a room, he loves shoes and he's mighty convincing. I can't tell you the amount of times I heard someone say, "I'm not doing that," only to be doing that minutes later. Oh, and he'll never speak a negative word about your product. 

Yes, Teddy would be the perfect candidate for a sponsorship with a shoe company. Heck, he's content to live within his means, so he would really be OK with no actual cash transactions, just new shoes as often as he needs them. (Let's be real, he would take the cash and buy a bus. Or a train. But probably a bus.)

This kid is burning through shoes. As his SMOs (braces to support his ankles and help him walk properly) grow larger, the struggle to find shoes that fit them only gets more challenging. It takes a men's size 7 to fit his braces currently, and even then we can only find a handful of special shoes that will fit over his braces. While we could try going to larger sizes, then we create the clown shoe issue where he'll be tripping (more) because his shoes are so big compared to his feet and body. 

We used Billy shoes for a while, and they were fantastic at first. But lately they've just fallen apart within weeks. Literally, the last 2 pairs did not even last a month without serious amounts of shoe goop. I'm not certain if the additional weight and force of Teddy's movements is the issue or if they changed something within their quality, but it's not worth buying $50 shoes each month. This was so disappointing because they did work so well for a few years and look so darn stylish.

So we tried a new brand My Friendly's at the end of October. They seemed more durable, still fit over the SMOs and looked nice as well. But they're no longer wearable because the zipper pull literally pulled apart today with no hope of fixing it. And these parents don't want to invest $90+ in shoes every 3 months. I mean, I don't think it's unreasonable for a shoe to last a child close to a year ... or at least a school year.

Aside from the zipper, note the wear on the shoe. 

So, I clearly think sponsorship is the best route to go. As an added bonus, we can provide feedback on durability and quality of the product. But, as we've discovered, not all shoe brands fit SMOs. While you might view that as a limiting factor in this sponsorship pursuit, I only see it as an opportunity to help them become more inclusive and open up a brand new market that will be loyal customers for life if they have a quality project that fits over braces. 

Win. Win. Win.

Now, hit me up if you have any connections to shoe companies please.