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. 

Winter is Here

Despite having snow for Halloween (thanks, Mother Nature!), we had no snow for most of November and December. In fact, we had unseasonably warm temperatures in December, balmy (for Wisconsin) 40s and may even warmer. 

But we're paying for it now that January is here. We had two snowstorms last week, with one actually counting as a blizzard due to the volume of snow and wind combined. The kids were home from school Tuesday, and we got a few inches of snow that day, but it wasn't as bad as forecast. So held out hope we'd have school on Friday, but those hopes were dashed when my run ended at 6 a.m. to see the texts that school was cancelled. Friday definitely was a snow day as that was our blizzard day that continued into the night. 

Fortunately I had a friend offer to take AJ to her house for a sleepover when she headed home from the office, so he got to have plenty of fun with a friend playing video games and Dungeons and Dragons. As I was chatting with Dave when he finished up work late in the afternoon, I suggested we invite the neighbors over for breakfast Saturday morning since we'd all be snowed in.

A few text messages later, and we had at least a few takers, so we thawed some meats and left extra cinnamon breads for the bakery unfrozen. The next morning neighbors showed up around 8 a.m. to enjoy sausage and bacon (of course cooked outside on the grill and griddle ... we grill year-round here), cinnamon bread, sourdough, hot cocoa, tequila sunrises and adult breakfast smoothies (aka the leftover pitcher of margaritas from Christmas with the neighbors). 

Not the whole crew, but quite a few. Teddy made himself comfy.

Teddy was so excited when the first neighbors arrived, happy to play with their 2 girls. His excitement only grew as we had 13 friends join the fun. He spent time in the basement playing with the kids, and dragged a few adults down to the basement to play as well.

It was such a nice, spontaneous gathering to make the most of the snowstorm and fact that no one was dashing off anywhere bright and early. It wasn't fancy, but it sure was fun!

 

IEP

It's been more than a month since Teddy's IEP, and I'm finally getting to recap it. His IEP is his individualized education plan, designed to support his needs, which requires meeting with his entire team at least once a year.

This IEP came at a perfect time, as it was shortly after his most recent bite from a fellow classmate, so we focused primarily on his safety at school as well as his integration with his 5th grade peers. 

It was a full house for this IEP, with more people than any other time, even though we were a person short because Dave stayed home with a sick Teddy. (In an ideal world, Teddy would be a part of his IEP meetings to have his voice heard, but that's less than conducive. Trust me. I've tried it.) Given the issues we've been having, the principal joined the meeting, along with a student teacher there for the experience. Then it was the usual crew: his intentional teacher, his 5th grade teacher, adapted PE, OT, PT, speech, nurse, assistive technology and the special education team member. Let's just say I asked for introductions to refresh my memory as I only see nursing and assistive technology once a year, and it's a lot to keep track of. 

I was pleasantly surprised with how the IEP started, as the team proposed a schedule that goes from about 20-40 minutes a day of inclusion to about 2.5 hours of integration. There was only one other opportunity for integration that I raised (thanks to my conversations with his 4th grade teacher, who happens to know him extremely well, about what might work). Instead of only morning meeting and music class, Teddy's new schedule includes breakfast, morning meeting, snack, social studies/science, lunch, recess, music, art and the occasional gym class. 

All smiles for the first lunch in the lunchroom with 5th grade!

Whew, that's almost exhausting to type, much less to be the paraprofessional supporting Teddy in all this integration. I know it's work to help Teddy integrate, and it won't be perfect. It won't work every day and every situation as planned. But the more time he spends with his 5th grade peers, the more he will model their appropriate social behaviors. He proved this last year by learning to raise his hand at appropriate times because everyone else was. The more time he spends in his intentional classroom with behaviors that aren't appropriate, the more likely he is to mimic those behaviors. Additionally, and most importantly to us, he doesn't get hurt in the 5th grade classroom whereas he's targeted in his classroom. (To be fair, he's targeted because he has no personal space bubble and doesn't feel others do either.) 

It's been an adjustment to spend that much time transitioning, but it's been neat to see how excited Teddy was to spend more time in 5th grade. I'm not sure if gym has happened yet, but that was a neat bonus that his adapted PE teacher wanted to try without being aware of the rest of the integration discussion. This is particularly cool because it was initiated because Teddy has made so much progress in his skills (both physical and social) that his teacher feels like he could be successful in certain lessons. 

Needless to say, we appreciate all the work his team puts in to make Teddy successful. It takes a village to support Teddy.  We showed our appreciation by bringing them lunch for the first day back at school - subs, chips and brownies, homemade, of course. And how many people did we feed? A village of 17.

Plus a brownie his team gave Teddy because he asked so clearly and nicely. 

Merry Christmas Eve

There's something nostalgic about trains at Christmas time. Whether it's the somewhat more recent Polar Express or the idea of a train around the Christmas tree, trains simply go with Santa. This year one of our gifts for Teddy was to head to the Mid-Continent Railroad in North Freedom, WI for the Santa Train. We did this in early December, and it was the perfect family adventure.

Teddy was so excited about this trip. Though he can't talk, he told everyone who came to our house about the train ride by showing them the brochure and pointing specifically to the Santa picture. This was for a couple months leading up to the adventure as we had the brochure on the fridge. 

The trip didn't disappoint for him, as he was so excited when we pulled into the train station. The only disappointment for him was that the museum had hardly any train cars you could climb on to explore, unlike the one we visited in Duluth earlier this summer. He thought he should be able to explore every car, even trying to sneak onto a few because that cord across the stairs is clearly not meant for him. 

The train ride itself was pretty darn perfect for us - about 1.5 hours with enough going on to keep Teddy mostly in his seat. As a parent, I appreciated that all that was advertised was a quick visit by Santa, so everything beyond that was a pleasant surprise. Santa started in our train car and made his way with Mrs. Claus to take pictures with every family and have a quick chat. Of course, Teddy invited them to sit down by him. 

All smiles for Santa and Mrs. Claus.

After Santa moved along, we heard a reading of T'was the Night Before Christmas and got little stockings with a few treats for the boys. Oh, we also got a rubber duck dressed as a conductor that Teddy thought was pretty cool. 

Showing off his rubber ducky.

The train only went a short distance down the line before it turns around, so we didn't cover a lot of ground, but it was very scenic. On the way back, just as Teddy was getting a bit squirrely, we had a group of high school students come into our train car to sing carols. Teddy thought that was the best to have a group of pretty girls (with a few guys, too) standing right by him, smiling and singing to him. His absolute favorite was Jingle Bells because he got bells to play through the song.

It was a truly wonderful experience, something we all could enjoy. Afterward we checked out a candy store on the way to our second main destination, Buffalo Phil's, a restaurant in Wisconsin Dells. We had wanted to check this place out for a few years due to two features: food delivered by trains and all the Lego displays. Let's just say neither disappointed for AJ, especially the entire Star Wars Lego room with nearly all the Lego Star Wars in existence. However, Teddy was freaked out.

Now, to be fair, eating in a restaurant with Teddy is usually a quick affair as he has no willingness to sit still for any amount of time, wants to socialize with others, etc. Sometimes he's just in a mood, slithering out of the booth and seeming to intentionally create chaos. This time, though, was different. Something he saw or experienced in the restaurant freaked him out, whether it was all the life-size characters or who knows what exactly. But after our drinks came and he went for a walk because he was a bit antsy and there was a lot to see, we could barely get him back in the booth. In fact, he and I stood by the booth just waiting to have our food come to put it in to-go boxes for him and Dave because all he wanted was to go back to the car. 

This type of thing is happening a bit more, where he gets genuinely freaked out and needs to leave someplace because it's simply too much for him. While it's frustrating to not be able to enjoy a restaurant we thought was about as close to a sure thing for our family as would exist (with the trains), it's understandable when it's truly fear versus just being sassy, so to speak. I wish we could figure out, though, what triggers these moments of freaking out to better navigate them.

Regardless, it was a fantastic family day and definitely something to repeat! We'll just skip that restaurant next time. 

All the Sicknesses

As usual, it's been much longer than intended between posts. To be fair, though, I feel like our household has been ill since mid-November. 

It started with a phone call that Teddy was suspected of pink eye and needed to be picked up from school the Friday before Thanksgiving. That required a visit to the walk-in clinic, of course, to get medication and clearance to go back to school. As an added bonus, we learned he actually had strep throat on top of the pink eye at that visit, so he got prescribed 2 different antibiotics. 

You'd think that would be enough to keep him healthy, but nope. We finalized our Thanksgiving plans at 6 p.m. Wednesday night before Thanksgiving, only to have Teddy start vomiting at 8 p.m. After 3 to 4 projectile vomiting sessions, with him completely miserable, Dave took him to the emergency room at 9 p.m. They celebrated (umm, probably wrong word choice) the start of Thanksgiving in the ER, getting home after 1 a.m. after getting fluids, IV anti-nausea meds after throwing up the oral ones and IV keppra. 

AJ and I managed to still visit my folks for Thanksgiving, while Dave and Teddy stayed home recovering. Seriously, who gets a 3rd illness while he's being treated for 2 other ones?!?!

That recovery didn't last long, though. We had perhaps a week where Teddy was feeling better before the respiratory illness started. After watching him lay on the floor just staring at us putting up the Christmas tree without causing any trouble or "helping" at all, we knew he was definitely not well. After seeing a temp over 100, along with the lethargy, we headed back to the walk-in clinic for visit #2 within 2 weeks or so. 

That visit prompted visit #2 to the ER because we got sent there instead due to his high fever, low oxygen, high pulse and high blood pressure. His temp was over 102 by the time we were in the ER (even after having Tylenol 30 to 60 minutes earlier), and he was miserable. They checked for all the viral illnesses (flu, RSV and COVID) along with a chest x-ray to look for pneumonia or bronchitis given the persistent string of illnesses. All that came back negative, so it was some other virus kicking his butt.

Walk-in and ER visits #2.

Thankfully he was through the worst of that in just a couple days, though I swear that cough and crud has lasted for more than 2 weeks still (with the rest of us getting some lesser variant). While we're sick of being sick, one of the biggest blessings is that despite all the illnesses, he had no seizures. That's tremendous, considering strep throat has kicked off wicked seizures, as has multiple illnesses at the same time. 

I'm also grateful that the time and effort I've put into therapy this year (particularly EMRD to process his 2 worst seizure episodes) really has made a difference. All these illnesses were the perfect test to see if my anxiety when he's ill improved, and it was a remarkable difference. While it's still no fun with sickness, especially with a non-verbal child who can't tell you how he feels and what hurts, the constant worry about seizures and worst-case scenarios wasn't there. 

So here's to hoping to finish the end of the year healthy and that the worst of our winter illnesses are behind us!

Diagnosis Day

Our lives changed forever 8 years ago. Teddy was diagnosed with PIGN-CDG, though at the appointment the name was Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1 (MCAHSS1). Even though that name was a mouthful, I walked out of there with the name engrained in my brain ... apparently until this moment when I had to refresh my memory.

The diagnosis opened our world to amazing relationships through our PIGN family. We've met families across the country, shared tears and celebrated successes together. We've developed friendships with incredibly caring, accepting people from myTEAM Triumph. Either of these alone is life changing. 

Diagnosis Day 2015: So Little, So Cute

My goodness, he was so little. He was also so darn cute. This is when he thought he was worthy of being the doctor. This was also minutes before our lives changed. 

When we got his diagnosis, we were told he was the 15th in the world. It was overwhelming. That's why we have so much empathy for new families who are diagnosis. It may be 8 years, but we still remember exactly how it felt. 

We left that appointment with more questions than answers. We wouldn't even tell our families the name of the disorder because we didn't want them searching to find the 2 or 3 things that existed on Google. The reason for that is we didn't want them to see the life expectancy of 3 years when our son was already 2.5 years old. 

It took months to come to terms with this diagnosis. Honestly, it's still a journey because life with Teddy is a roller coaster. There's always going to be moments that bring all the feelings, which means we need to come to grips again and again with different aspects of his diagnosis. 

Diagnosis Day 8 Years Later: Not So Little, Still So Cute

But, hey, it's 8 years later. That 3-year-old life expectancy was blown out of the water (by Teddy and so many others with this diagnosis). We're so grateful for that! He's not so little, though I imagine in 8 years I'll look back at the pictures from today and think, "He was so little!" That passage of time is a blessing for which I'm always grateful. 

The photo from today is when Teddy thought he should have a sleepover with his grandparents. And gosh, he's still so cute!