Final Days of Fifth Grade

Franklin Elementary School has been home to Teddy for the past 6 years. After spending his 3K and 4K years at two different schools, we were excited to settle into Franklin Elementary School for the foreseeable future. Though I was disappointed at the time (OK, I recall sobbing hysterically) to learn that Teddy wouldn't be at the same school as his older brother, Teddy was meant for Franklin.

This little guy started kindergarten wrapped in love and support.

As I searched back in time to find pictures of the early years, I was reminded of so many memories and milestones. Though I'm sure I'll miss some important events or notes, here's some of the highlights:

1. Teddy's first field trip (and all the subsequent ones). His kindergarten teacher set the bar high for inclusion, and I loved witnessing Teddy with his friends. (I also loved when I realized the school would send paraprofessionals with Teddy, so I didn't have to chaperone every field trip. Sorry not sorry for letting them attend plays with Teddy instead of me!)
2. Birthday party invitations and the chance to hang out with friends outside of school. Teddy made his first close friend on the bus, followed by others. Now Teddy's friend Brad is his only friend who will be at his new middle school. The two of them are wonderful friends, and it's so fun to see them hang out together.
3. The power of advocacy. I witnessed that in his kindergarten year when I shared my feelings on this blog, only to have them read by others in the school and then I heard from the principal. I learned valuable lessons about channeling my advocacy first to the appropriate channels and then determining how much I shared here. But I did learn that asking and advocating will open doors like the next one.
4. Teddy's first concert. He wasn't included his kindergarten year, so we engaged his team to make sure he was included every other year. In fact, he even played the ukelele at his final concert this year!
5. Elopement. This experience was surreal (particularly the circumstances unfolding when I heard firsthand what happened the next day) and is irrefutable proof that Teddy has a whole team of guardian angels (who apparently all took a break at the same moment). We got darn lucky this day, and I don't think it's something his team will ever forget. While it still didn't get 1:1 support for Teddy, it did put in place 1:1 support when outside of the school building in a safety plan. Though that safety plan never got tested fully right away because ...
6. A global pandemic shut down all schools for the remainder of the school year. And then we did a modified school year for two entire school years. (Holy cow ... I can't believe we lasted 2 years with that child in a bubble to protect him.) His teacher wore full PPE for that first year (mask, gown, gloves and face shield ... which is just insane to consider now but was so appreciated at the time.
7. A paraprofessional who asked in January or February 2020 whether we ever would be interested in childcare for Teddy, and I answered yes before she finished her question. Because of the global pandemic, she actually stepped in sooner than intended for childcare, moved in with us for a period of time, spent holidays in quarantine with us and became a part of our family. It's weird to know that this wouldn't be the case if Teddy went to any other school.
8. Beautiful art projects, including some of my favorite Christmas ornaments and homemade gifts. It's so wonderful that his team helps him to create these little masterpieces because he is truly proud of the work he brings home. 
9. Fantastic bus drivers and aides. We've made a lifelong friend who commandeered a bus to bring to Teddy during the COVID years to give him his bus fix. These ladies have always watched out for Teddy, and I've always rested easy when Teddy was in their care.
10. A DARE and 5th grade graduation ceremony where he scampered up to get his DARE certificate ... and then tried to run away in the opposite direction. After a break from sitting (riding on his chariot of a bike), he came back for the 5th grade promotion. Yet he was very particular about the magnetic toys and organizing them back in the box, so his teacher had to physically redirect him to get his certificate. Yet afterward, his teacher commented twice on how good Teddy did. Not only did that make me chuckle, it also makes me wonder what most school days look like.

Now he's a big 5th grader celebrating graduation with his amazing teacher.

This school has been home to Teddy for 6 years. While we're so excited for the opportunities in middle school and think it'll be amazing for him, it's bittersweet to say goodbye to Franklin Elementary. As I mentioned above, only one of his classmates will be joining him at his new middle school (the downfall of not being placed at our home school that feeds into our home middle school). This is one of the bitter parts because all the kids at Franklin, every grade, know Teddy by name, and most are excited to see him. I watched the kids at graduation cheer extra loud and give extra high fives to the kids like Teddy and the ones who need a bit more love (like the little boy who immigrated this year from Africa knowing no English ... funny story, Teddy's universal language of gestures and smiles convinced this kid to join him on the carpet when everyone was supposed to be sitting at their desks ... still makes me chuckle.)

This week will be a hard one for me, as mom, to let go of the elementary years. Right now it's less about the uncertainty of middle school and more about the sadness of leaving behind the friends, teachers and support staff who have embraced Teddy fully for who he is, helped him be his best and loved him (most moments at least when he wasn't testing those boundaries). 

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.)

Spring Concert

It was such a big deal to us when Teddy was included in his school's concert the first time. His second-ever performance was this month, and it was an equally big deal. Teddy absolutely loves music. He will spontaneously burst into dancing when music catches his attention, whether on the radio in the car or a commercial on TV. He dances like nobody's watching, and yet his moves ensure everybody is watching. He loves music with such joy that it's contagious, which you'll see in this post.

I know it takes effort to include children with different needs in mainstream concerts. It requires coordination with the music teacher, the traditional 4th grade teacher and Teddy's amazingly patient and calm special education teacher. It allows others in his class the opportunity to step up and help everyone be successful, whether that's redirecting away from the microphone when it's not their turn or being a partner for a song that includes rhythmic stick whacking (for lack of a better term). 

Might as well dress to impress when you know all eyes will be on you.

But the effort yields amazing results. It gives Teddy the sheer joy of being included, dancing and being with his peers. It gives us as parents and family such joy and pride in what Teddy can do. (It may not seem like much, but Teddy remained in his place for almost a full minute without any physical redirection. That's a minor miracle, especially with so much exciting activity.) It provides the opportunity for the community to experience the joy and abilities of all the children. It allows Teddy and his peers to practice appropriate social skills. 

Perhaps the most amazing thing, though, is that it normalizes Teddy and his peers with different needs in the eyes of their classmates. There were a few of Teddy's classmates who wanted to grab the mic to get more applause because they were doing such a great job (I mean, they were right). Teddy tried to take center stage to show off his dance moves. There were kids who's singing is non-existent aside from excited noises, like Teddy, and others whose dance moves rival Teddy's yet don't quite align to the program. Yet, despite all these differences, the other students weren't phased. They know their classmates and their unique qualities and embrace them for who they are. There was one little boy whom I was so darn proud of for intentionally partnering with someone who needed some extra help and being such a great helper, and I made sure his mom heard that. 

When we include everyone, it doesn't make the concert more perfect. It would be less distracting without children like Teddy. But we're all perfectly imperfect, and our differences make life what it is. I'm so glad that Teddy's classmates are learning to embrace and include from early on, as it's not the case for all children. It was clear which classes have children with different abilities who integrate and which ones don't because it looks strange and weird to those who don't see Teddy's excitement on a regular basis. (I swear I didn't speed up the video. Teddy really was moving his arms that fast because he was that excited.) Inclusion normalizes our differences and quirks ... because we all have them.

Inclusion is a beautiful thing. It doesn't take away from anyone, yet adds to the enjoyment for all. 

Hello, My Name Is ...

None of us probably give a second thought about introducing ourselves. In fact, there's probably very few introductions that stick out in your mind. You might remember meeting someone new, where your friendship started, etc. but likely not the exact greeting.

You probably wonder where this is going, unless you read my Facebook post over the weekend. We visited a store this weekend, and I was wandering the aisles pushing Teddy when a sales associated asked if we needed any assistance. I replied, "No thanks, we're good," and continued browsing. She then looked directly at Teddy in his adaptive stroller (think mini-wheelchair without all the bells and whistles) and asked him, "How about you? Are you good?"

Right away, I was impressed that she took the time to engage directly with Teddy, who's clearly not your typical child. I asked Teddy if he could tell her yes, and he signed "yes" in response to my verbal prompt. And then I continued browsing because I thought we were done with the interaction until I heard the sales associate say, "My name is Ashley." I looked back toward her to see her signing what she was saying aloud.

I was shocked for a moment and gathered my wits enough to say that we're not quite that advanced in our signs yet, but that we know "treat" and "thank you." She said those were important words to know and encouraged us to find her if we needed any assistance.

Her introduction will stick with me for years. I was able to reach a manager at the store to let him know how much I appreciated Ashley's interactions. Not only did she engage with Teddy, but she was able to speak his language and acknowledge his answer. 

I think sign language is undervalued as a second language. I realize that so many have their own "slang" within sign language or their own way of signing when they aren't hearing impaired but are non-verbal. For example, Teddy uses the sign for candy for "treat," and realistically a lot of signs end up with Teddy pointing to his mouth where he wants the food to go. Still, we can understand him, and with continued practice, others like Ashley will be able to communicate with him as well. 

Mayo Clinic of Genomics

Today was monumental for our family. We visited the Mayo Clinic of Genomics for the first time. We spent 2 hours with a team of 5 people who not only know what Congenital Disorders of Glycosylation (CDG) are but have invested their lives into supporting families and research and development of treatments to improve quality of life.

Two months ago we thought the only CDG clinic in the United States was at Children's Hospital of Philadelphia (CHOP). Given that Teddy is relatively healthy, a consultation and trip there didn't make sense for us. However, at the World CDG Conference, I heard Dr. Eva Morava present and reference Mayo Clinic's work with CDGs. Within a week, we were scheduled for a consultation and asked to join a natural histories research study. (Interestingly enough, last month I learned another PIGN family in Canada is attempting to remotely participate in the same study.)

Mayo Clinic, with a nice mask reflection to remind us that COVID is still a thing.

Although I was excited for today's visit, I was also leery of the first portion because it consisted of an EKG and labs. If you've never had an EKG, it's an entirely painless test that should take literally a minute or two, probably a total of 10 if you count hooking up the wires and the stickers. Let's just say our experience took approximately an hour and required an extra tech because we needed 3 of us restraining Teddy. The removal portion of the wires and stickers was really quick because of all the practice Teddy had ripping them off when we were trying to actually do the test ... by then, he was a pro and ripped off most of them himself (aside from the one sticker that we discovered when we changed him into pajamas tonight).

From there, we headed to labs. They needed probably 10 vials of blood or so, along with a urine sample. For Teddy, that means attaching a plastic bag to catch his urine. That experience wasn't pleasant for Teddy and again required an extra tech because 3 is better than 2 for restraints. My apologies to Teddy because I'm the one who removed his collection bag ... and it was sticky, but oddly he wasn't fazed by that.

Once we got through the torture sessions, we were able to finally eat some breakfast (because they were fasting labs) before we actually saw his team. His team consisted of the nurse, who was only there for vitals, and then the genetic counselor, lead researcher, a resident doing rotations in the clinic, a dietician and a world-renowned CDG expert Dr. Morava. We had to move to a different room to accommodate the entire group because we met with them collectively. That had several advantages in terms of shortening our overall visit time because they collaborated for what they needed and allowed them to multi-task on doing Teddy's evaluation while Dr. Morava talked with us. 

Our visit lasted approximately 2 hours and covered everything from a refresher on Teddy's diagnosis to what's intended with the research study to concrete answers to questions we had, all while examining Teddy. While some people might be overwhelmed by 5 medical professionals in a room, with their genuinely caring personalities (and the fact that they weren't doing any procedures), Teddy instantly became his happy self. He was thoroughly showing off for the team, not necessarily showing tremendous fine and gross motor skills, but did he ever show off his charm! He was giggles, smiles, shenanigans (apparently he wasn't supposed to talk on the phone?), persuasiveness (as he directed exactly what everyone should do and where they should sit) and joy. He was perfectly content with all the attention and particularly enjoyed the fact that none of the team cared when he discovered the sink in the room. I'm not exaggerating when I say he washed his hands for at least 15 minutes straight ... if not longer. And he totally dunked his head under the water, too, so his hair was soaking wet.  

We received a couple educational materials, which is pretty cool to get Caring for Your Child with CDG and A Message for Parents of Children with CDG. Although we haven't had a chance to read them yet, I'm eager to and look forward to the digital versions to share with our other PIGN families. Seriously, to see anything in print on CDG just doesn't happen, so it's a wonderful resource. 

Dr. Morava also walked us through a diagram they're piloting for educational materials. Without her explanations, it's probably Greek to you. With her explanation, it helps us understand better Teddy's specific type of CDG. The more common CDGs like PMM2 affect the sugar blocks at the start of the glycosylation process. GPI-anchor ones like PIGN affect later in the process and prevent the final sugar block from attaching (see the left side of the middle part of the diagram). Since GPI-anchor disorders impact later in the glycosylation process, it is harder and more complicated to develop treatments. 

This is glycosylation. Makes perfect sense, right?

The key things they are working on are a blood test to concretely diagnose GPI-anchor CDGs. Right now, the only way to get the diagnosis is through exome sequencing, which is extremely expensive, time consuming and only provides the "likely pathogenic" mutations. In other words, it's not a confirmed diagnosis with a concrete test. They're working on a simple blood test that would allow correct diagnosis sooner, cheaper and more effectively. Also, that blood test would confirm that the PIGN mutations are pathogenic, that there's a GPI-anchor disorder.

That confirmation will pave the way for gene therapy. Gene therapy treatment is not in the immediate future, although she predicts it will be approved in about 3 years. That approval is not necessarily for CDGs, but once gene therapy starts getting approval, it will be relatively simple (her words, not mine) to transfer that knowledge to other genes. I'm extremely curious on what potential gene therapy might have for older individuals, but I didn't ask the question because the treatment isn't even developed yet.

But the exciting thing about working with this team is that we'll learn all these things. We'll know when there's new developments, what's happening in research and be a part of that. They look to collaborate with parents to make sure the materials make sense and that the work aligns with the needs. In fact, she mentioned the possibility of getting someone to research why CDGs present so differently in different people, the wide range of impact and the differences even among family members. That would be fascinating.

One of the things we asked about was the COVID vaccine because we've heard different things on how COVID and the vaccine may impact people with CDGs. Dr. Morava shared that they have patients with CDG who have been vaccinated and then evaluated for the effectiveness. She said that because of how CDGs impact immune systems that the vaccine is less effective. However, she said that GPI-anchor disorders are less impacted than other CDGs in terms of the immune system, so the vaccine should be more effective for a PIGN person than a PMM2 person. She still recommended the vaccine as it provides some protection but cautioned that it won't provide the same effectiveness level as the general population. This was good for us to hear as it means we'll want to ensure Teddy gets the most effective vaccine available, knowing that he won't get full effectiveness from it. 

I know this is a lot of information, some far more technical than usual, but I want to share it for other CDG families as well as for our own future reference.

The team was absolutely phenomenal. They genuinely were excited to spend time with Teddy and were absolutely fantastic with him. My mind is boggled by the incredible intelligence of Dr. Morava, yet the humility and ability to connect with both us and Teddy. (Teddy generally disregards COVID precautions, so he was hugging her while chewing on his mask.) I'm even more amazed that Dr. Morava is Hungarian, spent time working in the Netherlands and then was recruited by Mayo. How you can pronounce all these technical terms in one language, much less at least 3, is beyond my comprehension. Heck, I was just impressed that I can count to 10 in German after nearly a year of Duolingo ...

Oh, fun fact, the researcher is actually from Germany! I'm pretty sure that of the 5 people on Teddy's team, at least 3 of them were born in other countries. I'm so excited to have such a great team for Teddy to partner with his neurologist. We'll be scheduled to go back in a year for the study and follow up, but we now have a terrific resource where we can reach out should we have any questions or concerns.

Now, I just need to remember to share with ya'll in another post the excitement Teddy had about our hotel stay leading up to his appointments. 

Clinical Genomics

Genomics is a fun word, isn't it? Like economics, but with genes. Sheesh, it's been a long week at work, which is why I'm starting out with a ramble. I swear there is a point to this post, though. 

At the World CDG Conference, I discovered that Mayo Clinic has a Department of Clinical Genomics. Mayo Clinic is approximately 4 hours from our home and about 2 hours from our land. This was news to me as I had thought the only CDG-specific clinic in the United States was at CHOP in Philadelphia. Philadelphia was simply too far to travel for a consult when Teddy is stable and doing well.

But to have experts that close to home? It's absolutely worth working with them to coordinate Teddy's care. Teddy has a good pediatrician, a phenomenal neurologist, a wonderful physiatrist and a great team of therapists. But there's no one on his team with expertise with CDG, so they each treat his symptoms within their specialty. It truly does meet his day-to-day needs.

However, it leaves the burden of learning about CDGs, potential studies and new developments to us as parents. We had hoped to have our genetics team provide the latest in research and get Teddy into research himself. We realized pretty quickly that since Teddy's puzzle was solved, genetics had no interest in looking at the same puzzle again and moved onto other new puzzles and diagnoses. I know that team was incredibly busy and backlogged, but it was still a disappointment. 

So we've managed, largely by sharing information among our PIGN Facebook group about medications, primarily for seizures, and research opportunities. It's hard to describe how excited I am to have Teddy seen and followed by an expert in CDG.

Seriously, his doctor's bio is beyond impressive. Not only has she heard of CDG, she's been instrumental in the discovery of several. Not only is she aware of research opportunities, she's leading one of the current studies. (We already got the consent and completed it, so Teddy will join that study with his upcoming visit.) I know this won't likely drastically change anything for Teddy, but I'm excited about the doors it may open and the additional knowledge we'll have.

His appointment is July 16, so I'm sure I'll provide an update after that. I don't think they've seen another PIGN kiddo there, so Teddy may be a novelty to them. But they know the overall diagnosis, and that's incredible. The only other time we had that was at the NIH when we went there for the week-long study. An added bonus: this study is mostly paperwork, with optional urine, blood and stool samples. That's far more doable than another week filled with every medical test known to human kind. 

A COVID Blessing

It's been more than a year of COVID-19, which has created a bit of reflection for me. I've shared here about the challenges of COVID, which are exacerbated by our concern for Teddy's well being and very real fear of seizures. But today I want to focus on what has been the biggest blessing for us.

We've been fortunate to having amazing childcare providers through the years, and our newest is no exception. She's great with both the boys, and they look forward to spending time with her. But there's something different in our relationship with Bri and Sigrid, who were our primary caregivers through the pandemic. I truly cannot imagine them remaining a part of our lives, even once their careers take them outside of our home.

Perhaps we need a photo of all our kids together, where you can see all 4 of them!

This past year, we have jokingly referred to them as our other children. The truth is they have become part of our family. We've hashed through life's challenges with them at our dinner table. We've celebrated birthdays and holidays together. (My to-do list includes baking Bri's birthday cake, and I just invited Sigrid to the "party" for her. It's an added bonus that they both enjoy each other's company and commiserate about the challenges and fun they have with the boys.) We've taken both Bri and Sigrid to our land. It's a change of pace for them, the boys adore the extra time with them and it's another set of hands.

Both have spent the night at our house, with Bri spending several nights a week here because she stays with us Monday through Wednesday. I love that she refers to the bed in the LEGO room as "her bed" because it is for all practical purposes. It's convenient for her to stay with us, and she certainly has the freedom to do her own thing in the evening. But the reality is that it gives us some adult conversation, and there's an extra set of hands to chase Teddy during dinner. (His game is to see what he can touch before we catch him to make him wash his hands.) I've also found someone else to share my sourdough baking secrets with and the art of canning that I learned from my mom. Plus, AJ is way more engaged in learning to sew when Bri is sewing alongside him!

I know our other amazing babysitters were great while they were here and then moved on to become incredible nurses, I'm sure. They stayed in touch for a bit, but both are out of the area, so there's not much beyond us sending a Christmas card. I can't imagine that happening with Bri and Sigrid because they are so much a part of our life. The fact that they were in our inner circle through COVID, when we weren't even seeing our families in any way shape or form, meant that we relied on each other and spent more time together. And we still like each other after that ... we like each other more probably because of that. The time together built relationships that go beyond paid employee/employer relationships to truly being an extension of our family.

I mean, we're not quite taking on their student debt, but they're always welcome at our dinner table or to crash at our house. That seems about right for young adults you informally adopt in their 20s, right?

And, I know at least one of them reads the blog regularly. I don't worry that she thinks I'm weird for writing this. She already knows I'm weird.

A Tale of Two Teddies

 It was the best of times. It was the worst of times.

That pretty much sums up life with Teddy. There are some days, and most often some moments of every day, where Teddy drives us crazy. Lately, he's been aggressive and mean toward AJ, actively sitting on him, pushing him, kicking him, etc. It's tough for us to even watch a TV show they both enjoy because Teddy feels the need to constantly follow AJ around the room to sit on him, push him off the couch, or push him if AJ tries to move away and stand. It's not pleasant for anyone, and we're not really successful in redirecting that behavior. 

There's also the attempts to scale the railing, which may yet result in Teddy's demise. I don't think he'll fare well with the fall from the second floor. 

There's also the attempts to scale everything. He thinks he's a naughty cat and likes to climb on top of our counters, grin and giggle. He also does the same with our tables. 

Then there's the days he's so crabby, lays on the floor crying because he doesn't get his way. More often than not, what he wants isn't appropriate like playing in the kitchen sink running both faucets for an obnoxious amount of time while spilling water everywhere. 

Those are the worst of times.

Yet, his mega-watt grin can brighten any room. It can instantly make you feel better, as long as he's not unleashing it because he's being sassy. 

His unbridled joy, literally jumping up and down with excitement, is infectious. It makes me laugh out loud. It brings me joy to see him so joyful. 

His excitement and passion for certain things, such as buses, tractors and his favorite people, is something to see. He makes so many people feel so special with his greeting for them and his desire to spend time with them ... at least until they realize he's just going to dictate their every move.

His spontaneous dance parties, whenever the music catches his attention, are hard to top. He moves to the music, with no regard for whatever else is occurring. He does so with much excitement and joy, and he gets even more excited when you join him. Few things top jamming out with Teddy if you need a mood boost. 

Those are the best of times.

The best help us endure and push past the worst. I'm grateful Teddy is such a bundle of joy that lights up the world. I just sometimes wish he was a bit less of a stinker. 

Freundschaft

This month has been trying. Well, last month, since it's February already. Dave and I both have had work weeks from hell, we're juggling childcare and Teddy's been aggressive and mean toward AJ (more on that in another post). However, there have definitely been bright spots. One of those was my conversation this weekend with my friend from Germany, Marianne.

Marianne reached out to me via e-mail in 2019 after finding this blog when her daughter was diagnosed with CDG-PIGN. We instantly connected, sending e-mails across the ocean, learning about each other's lives and sharing our struggles and triumphs. Last year, we had planned to meet when my mom and I went to Germany and Spain. Unfortunately, that trip was cancelled as it was planned the week the United States went into lockdown.

The one positive that came out of those plans, though, was that Marianne introduced me to an app called WhatsApp that allowed us to text one another. We had planned to use it to connect when we arrived in Germany, but instead we've used it the past year to text one another, send pictures and whatnot. After two international zoom meetings in January, Marianne and I decided to schedule a "date" to video call one another through WhatsApp.

So this weekend, we spent more than an hour chatting with her excellent English (and my non-existent German despite 125 days of Duolingo practice). AJ got to give her a tour of the LEGO room, and Teddy stole my phone multiple times to smash his face to the screen and hold the phone up to his ear. It was so wonderful to actually connect that way and was the first of hopefully many actual conversations.

As a child, I always dreamed of international pen pals (back when you wrote actual letters). Now, thanks to my rare son, I have friends around the world. Those connections make our world smaller and make our days brighter. They share our burdens and our joys. 

Sitters and Semantics

I struggle to find the right word to define our childcare providers. I tend to lean toward childcare provider to give more credibility and professionalism to what they do, but sitter is a lot shorter. With the amount of time they spend in our home, nanny is also an appropriate word. The reality is they are an extension of our family.

We've been blessed with a number of amazing caregivers for our children in years past (Ms. Jenny, Miss Kaitlyn and Miss Melanie), but our reliance on and appreciation for our current two is at another level. Some of that may be the result of the pandemic and the need for tighter circles, but Miss Sigrid and Miss Bri are both incredible young ladies.

They take our crazy chaos and roll with it. They know that sometimes I'm more excited to see them when they arrive than the boys are because they ease our stress. We know the boys are completely cared for and in good hands, despite that occasional text that Teddy swallowed a nerf gun tip or fell down the stairs. (That happens with us, too!) They have done countless library or school pickups to save us trips and time out of our work days. 

We joke that Sigrid is our oldest child, so she joined family photos.

They spend countless hours playing imaginary with AJ and working through his moments of frustration when things don't go as planned. (That boy takes after me in that regard, and unfortunately life doesn't go as planned.) They encourage his creativity, help him with his handwriting and engage him in physical activity while making it fun (Wiii sports or games chasing around the house).  

They shuttle Teddy to every appointment and actively work with him through therapy sessions and then report back to us what to work on at home. They even update his "school" list with new things to work on. They are his primary teachers this year, working on all his academic skills at home through the course of their play and some intentional school work time. They give Teddy his medications and both know how to respond should he have a seizure. 

This was in 2019 when Ms. Bri made a Packers bike ride possible. 

With the weirdness of COVID, they've shared countless meals with our family and spent nights in our spare room to assist the next day (or to avoid their roommates in quarantine). We all enjoy each other's company during the meals, and another set of hands minimizes the risk of Teddy running off with a knife or something else dangerous or messy. They walk the line between playing with the boys and serving as an outlet for adult conversation for us. 

The sound of Ms. Bri's laughter always makes me smile because I know how much fun they're having. Ms. Sigrid has hauled Teddy on bike rides throughout the summer, with AJ pedaling along side her. They've done nature walks, hikes and road trips. They've joined us for holidays and family photos. 

They have made the pandemic better in so many ways, in all our interactions, their creativity, their safety awareness and their positive attitudes. They have made the pandemic possible by working the hours they do to allow us to continue working. 

When we count our blessings, Ms. Bri and Ms. Sigrid are near the top. For Christmas, Ms. Sigrid gifted us with a photo of her and the boys, so we don't forget her while she's gone student teaching ... as if that's possible. These ladies will forever be welcome in our home. 

See Something Positive? Say Something Positive!

 Last week, out of the blue, someone who Dave and I work with through our volunteer work with SkillsUSA (a career and technical skills organization) sent me a message. This year, she transitioned to teaching special education for the first time after a couple years teaching in a traditional classroom. It was just a simple message:

I just want to share with you, now that I am teaching early childhood SPED, that I absolutely love seeing all of the hard work you and Dave do to support Teddy and make sure he is able to be successful!

That certainly put a smile on my face! It wasn't solicited, it wasn't in response to anything and it was just a simple, genuine compliment. Those little words of kindness, which probably took a minute or two of her day, rippled kindness and happiness through my day. I'm still smiling thinking of it a week later.

So, my challenge to you is this: if you see something positive, say something positive! Don't be afraid to reach out to those you know and love or even complete strangers who are doing a great job. If you've never tried to navigate two toddlers through a store, I can guarantee you that many parents in that position could use a boost from someone recognizing their parenting. If you see a young child wearing a mask well, what better way to show that you notice how great they're doing than to compliment their mask? (It's probably best to just leave it at, "I love your mask!" not "You're doing such a great job wearing a mask unlike that adult over there who can't be bothered to wear one properly.") 

Spread a little kindness. Make our world better. 

Progress (and a Neurology Visit)

 Last week Teddy had his neurology appointment. He sees his neurologist every 6 months. Honestly, these are my favorite appointments to attend because his neurologist is absolutely everything you could ever want in a doctor: he's incredibly intelligent yet can explain complex matters in understandable terms, he genuinely cares about Teddy as a person and wants the best for him, he spends time educating himself on the little information there is about Teddy's diagnosis, he has incredible rapport with Teddy, he's understanding of our challenges with Teddy and he also cares about us as Teddy's parents. He's the only doctor who's ever asked me what's on my heart. He's also one of very few doctors or therapists or people on Teddy's school team who addresses me by name rather than "mom." That little thing speaks volumes because it means he knows my name and not just that I'm Teddy's mom. 

Anyways, Teddy has been practicing wearing masks. He's gotten better about tolerating them, although he still licks the inside of them, which really isn't fully effective. But he did absolutely fantastic wearing his mask in the waiting room for his appointment, even though they were behind schedule. He even wore his mask the entire time the nurse was checking him out, never attempting to remove his mask and allowing me to adjust it the few times it went into his eyes or below his nose. Since it was wet, I removed it once the nurse left as he'd been wearing it for 30 minutes. That's a world record for Teddy.

Rocking his mask and his mystery scar. 

When the doctor entered, I went to put it back on, and he was comfortable with his PPE with Teddy not wearing his mask. He also was willing to sit on the exam table with Teddy when Teddy asked (or more so told) him that he should sit up there by Teddy. I tell you, our neuro is one a million. You may never find the doctor who's as perfect a fit as ours, but don't be afraid to move away from a doctor who doesn't meet your need. That was our original neurologist who spent perhaps 5 minutes with Teddy and had no connection with him or us. 

As our appointment ended, our neurologist leaned in to Teddy and said, "I'm proud of you." I'm proud of Teddy as well and grateful for all who support him to be his best self. 

First Day of School

 After countless phone calls and e-mails (and discovering that the director of special education for our district knows Teddy by name and personality) and an IEP meeting two days before school started, we had our plan in place for Teddy's education this year. We're still working on approvals for outpatient therapy (particularly getting OT extended and speech approved for the school year), but thankfully PT is set for the rest of the calendar year. Teddy has settled back into his music therapy sessions without missing a beat. (Pun intended.) Our childcare provider is working with him on academic activities daily at home, which he's excited to do because it's new materials to explore. It's super fun to watch him concentrate on an activity because his tongue either juts out of his mouth or into his bottom lip, so it's easy to tell when he's truly focused. 

This week was the first week Teddy went to school for his academic time. If you recall, we had advocated for homebound education for Teddy due to all the risk factors, but that was oddly enough deemed too risky by the school district. So, we're doing homebound at school, which means that twice a week Teddy goes for 1:1 instruction in a designated room. We had coordinated with his team where that room is located, how it would be sanitized and that PPE would be worn by his teacher. 

We felt comfortable with all the pre-work done as his school designated a room immediately inside the building, so Teddy doesn't have access to take off to explore the rest of his school. His team even took the time to explain, without us asking, the two different levels of cleaning products they will use to sanitize the room prior to Teddy's time learning there. Still, I was a bit surprised when his teacher commented on the first day of school about his PPE and pleasantly surprised when he sent a photo at the end of the day.

Guys, Teddy's teacher wore full personal protective equipment (PPE) to teach Teddy. He wore the same level of PPE that is used for interacting with known COVID positive cases in medical settings (aside from a cloth vs. surgical mask). He wore a mask, face shield, gown and gloves. While this might seem like overkill (and candidly was more than we were expecting), this all but ensures that even if Teddy's teacher has COVID that Teddy would not be exposed to it. And you might not be able to tell from the picture, but I can tell you that his teacher did this with a smile to support Teddy with his learning. 

Teddy was a bit intrigued by the PPE but still had a great session.

Right now it feels like our world is returning to normal with little regard for those who are most vulnerable to COVID. We often feel like we're in the minority in doing the right things like wearing a mask, physically distancing and keeping a small social footprint, but we don't feel like we have a choice to keep Teddy safe. That gets disheartening, but the effort made by his school and team to safely educate Teddy truly gives me hope and warms my heart. He matters to them. His education. His safety. They're working with us to make it safe for Teddy to be in this world, and we are so grateful for their support. 

Often I hear of how people are tired of the PPE they have to wear to do their jobs. I'm sure that no teacher expected to wear a mask to school, much less full PPE like this. Life is different right now. It won't always be different, but we'll always be different because of it. We'll forever remember the helpers and those who eased the stress of these challenging times. (And we'll probably at least know how to properly wash our hands.) 

Braces and Beliefs

Teddy has worn braces since he was little, initially SMOs, which went up to his ankles, and then last year he was upgraded or downgraded depending on how you look at it to AFOs. AFOs go nearly up to his knees. It was a bit tough emotionally when he got AFOs because they more obviously show Teddy's differences ... as if ankle braces, his gait and overall persona aren't quite clear enough. I knew it was silly at the time, but I needed time to process before I was OK with it. Now, he needed replacement AFOs early because he broke them 4 months before his usual appointment. So his sitter took him to get cast (and AJ to pick up his inserts for his feet challenges).

This is Teddy's stylish new brace design. 

I asked Dave to call ahead to make sure no payment was needed, after baiting the trap by asking if he thought we should ask the person doing the fitting to wear a mask for Teddy's sake because Teddy can't keep a mask on. (He simply does not have the understanding or impulse control.) He had said yes to that question, so then I asked him to make the request when he called. They said they would put a note in his file and accommodate that request. I expected that to be the end of the conversation and was quite pleased they were willing to do that without it being a big deal. (I knew from our previous appointment that no masks were worn by the staff, which made me cringe inside my mask the entire time. Plus cases in our area are quite high right now.)

So our sitter took the boys to their appointment. She shared that she got quizzed up on whether Teddy had a compromised immune system, and she replied that he has a seizure disorder that is triggered by fevers. Ugh. She should not have to provide that explanation, although perhaps it was sheer curiosity, not judgement of whether a mask was necessary or not. The person then proceeded to share his beliefs that coronavirus was no different than the flu in terms of impact or severity and that such measures weren't needed. Ugh. I'm sorry our sitter had to have that conversation, but it's probably better it was her than me. Beliefs aside, this person has worked with Teddy for 6 years, knows him extremely well and does fantastic work. So, we'll wear our masks, request a mask be worn for Teddy's sake and go back the last time for hopefully the next year to pick up his braces ... and hopefully things are much different for the better by the next time he needs braces.

The cool part about Teddy's appointment was how much our sitter and AJ enjoyed picking out Teddy's braces. They both thought baby shark would be perfect for Teddy, but they were a bit swayed by the tractor design. So our sitter pulled up both images on her phone to give Teddy the choice, and he emphatically chose the shark design. AJ picked rainbow colors for the inside pads because we're not sure what Teddy's favorite color is - his words, not mine. It was neat to see how much they enjoyed that, particularly because it's one of those things I view as just another thing I need to do as Teddy's mom. Instead, they involved him in the decision and had fun picking out something they're certain Teddy is going to love ... and I love that!

So Many Miles, So Many Smiles

Last week our family was incredibly blessed on a rainy, dreary day. A giant package arrived at our house that made me literally squeal with excitement when I saw it. Teddy's very own running chair had arrived, after being approved late last fall. We had requested this through his case worker who approved it after her due diligence. We were super excited to partner with myTEAM Triumph (MTT) to order Teddy's chair because we've used these race chairs for several years through them, so we knew what works for Teddy.

Captain Teddy in his new wheels! And, yes, we ran down the street in the pouring rain.

We were able to get a chair that fits him wonderfully now but also fits me, which means that he can push me. Just kidding. It means that he can grow with this chair, with a few simple adjustments like switching the seat pads. It has a foot basket to help contain his feet and wheel guards to make him work just a bit harder to get to the wheels.

It also has some pretty sweet wheel covers that highlight Teddy's diagnosis with the CDG symbol, his name and the MTT logo. He'll do his part as a MTT ambassador wherever we go.

This chair means so much to our family because it gives us more freedom to enjoy the outdoors together. This allows me to return the chair to MTT that I had borrowed during quarantine, which enabled us to go on several runs while AJ biked along side us. This also adapts to pull behind a bike, which means that Dave can pull Teddy. (See, I push for running, so he can pull him for biking.)

Just this weekend alone, we logged 12 miles over the course of two bike rides. Of course, one of those bike rides was to look for the missing bolt we lost on our first adventure with the chair. I'll blame that on my 8-year-old crew member who doesn't quite tighten the bolts well enough for trails ... and my 6-year-old passenger who intentionally was trying to unscrew the bolt.

Pretty sweet ride for Teddy, and it pulls nicely, except with the gusty winds we had both days. 

We're so grateful for this chair. It will help us share so many miles and smiles together as a family. AJ and I were joking that now we could train for a family triathlon in a few years when AJ is strong enough to pull Teddy for the biking. I'll do the running, and Dave can pull Teddy in a boat for the swim. I was pretty happy with my plan to get Teddy a whip to make them go faster until AJ pointed out that whips still swing backward, so I'm not safe from Teddy trying to make me go faster either.

Neurology Visit - Quarantine Style

Do you see a trend here? Teddy had a big week of appointments this week, including appointments with an allergist regarding his reactions to three different families of antibiotics and his regular neurology appointment.

His allergy visit was non-eventful because that was a virtual visit, which was so much easier than wrestling Teddy in an actual doctor's office. In fact, the allergist didn't see Teddy at all, and I just discussed his different reactions with her. The good news is they're able to remove one of his allergies, and there's a second one that we could consider some modified testing (because she's very understanding of Teddy's tolerance for waiting in an exam room) to possibly remove. So, that's something we'll look at once life settles into a new normal where human contact is allowed.

His neurology visit was live and in person, though. Although we had some hesitations in taking him out in public, we decided it was worth it to ensure he has the right protection from his anti-seizure medication should he become ill. (Also, postponing a neurology appointment means you won't be seen for several months, so there was that to consider.) We both planned to accompany him to better entertain and keep him out of trouble since we didn't want him to touch all the things he usually would. But the day before his visit, the final screening call for symptoms also informed us that only one "visitor" was permitted.

Nothing like a doctor's appointment to motivate you to sew a few masks. 

So I took Teddy to the clinic, wearing my stylish new mask made with supplies donated by one of my running friends. I didn't bother attempting a mask on Teddy since it would only end up on the ground. We used his chair in an effort to keep him contained and avoid touching things and headed inside. We made it through the initial screening, and thankfully, they didn't make me attempt to put a mask on Teddy.

It was weird to see so few patients and every single staff wearing not only masks but also eye protection. They had the reception desks blocked to keep 6 feet of distance between you and the receptionist. Teddy and I had the waiting room to ourselves, which is good because eventually he wiggled out of his chair, so I danced and twirled him and got rides in his chair to keep him from touching anything other than my hands and his chair.

Once we got into the exam room, though, I had to remove him from his chair. So he touched pretty much everything there, but he didn't lick anything. I'll consider that a win. (The really good news is that they are completely sanitizing the exam rooms between every appointment and wiping down every surface.) Teddy did remarkably well with his vitals and interactions with both the nurse and the doctor, despite them looking different with masks and face shields.

I absolutely adore his neurologist. He is brilliant, yet explains things in common language without making you feel like you're an idiot. He's incredibly personable, checks on how we're doing as parents and interacts amazingly with Teddy. In fact, the first thing he told Teddy is that he normally would give him a hug but couldn't today. He's creative in his evaluation of Teddy, avoiding the need to do labs by looking for physical signs of any reactions to his medications. His stuffed parrot Jabber couldn't join us today, but he still checked Sponge Bob, Squarepants, Tigger and Pooh Bear as he checked Teddy's different body parts. He sees nothing but good in Teddy and wants to make sure we're comfortable with the treatment plan.

Teddy's Keppra is increasing slightly, an extra milliliter a day over the course of a week, to accommodate for his growth and keep him at a good level. His doctor said that some might consider weaning from Keppra after one or two years seizure free, but he'd look for at least four years for Teddy. I said that after he ended up in the ICU when we tried to wean him after 2 years, we're good with him staying on Keppra indefinitely. He certainly understands and wants the same thing we do, which is to keep Teddy safe particularly during this pandemic.

It was a different visit, shorter than usual simply because we're minimizing risk by minimizing contact. He offered the chance to wait a year until our next visit, but I took the 6-month option because I'd rather we have that appointment if needed. Also, it's honestly a pleasure to see him, which isn't the case for most doctor visits.

I Spy ...

Two years ago at NIH we had Teddy's eyesight evaluated during our intensive studies at the National Institutes of Health. We were perplexed as to how they'd evaluate his eyesight, given that he's non-verbal and not inclined to follow instructions, whether that's because he doesn't understand them or doesn't care to do others' bidding. They used a few tests that involved where he directed his attention, but much of the testing they did under sedation.

To be honest, testing Teddy's vision wasn't high on our list of priorities. But during AJ's last checkup, I asked a few questions about whether it was worth having Teddy evaluated. The thought of coercing Teddy to wear glasses makes me cringe, but there's so much more than sight that they evaluate. Our eye doctor, Dr. Ames, made me feel comfortable enough that he'd be able to get valuable information from evaluating Teddy, even if Teddy didn't want to cooperate for the tests. I set the appointment for nearly two months in the future, enough time that I didn't need to worry about it. (And I justified it by saying that it would be two years from his last evaluation.)

Well, those two months passed, and the four of us went to the eye doctor with Teddy last week. We felt it was best to have both Dave and I there to help coerce him to cooperate and get the best results. Pretty quickly, the first person evaluating him for the initial tests determined that it was best to bypass all those optional tests and head straight back to a room ... after only about 2 minutes of attempting the first test. The second we walked into the exam room, Teddy melted into the floor and began whimpering. That wasn't surprising, given that he's skittish about medical things ever since NIH. 

When we tried to sit in the exam chair, it required me to physically hold him on my lap against his will. So I let him go and said we could get him back in the chair when needed. He settled once he got in the furthest chair away and then proceeded to rotate chairs, including his wheelchair. We said we could get him back in the exam chair, and Dr. Ames reassured us that he's done exams under chairs. He'd do the exam wherever Teddy was comfortable, and he just continued to allow Teddy to move from seat to seat and continue the exam.

To test his sight, since he can't tell us whether A or B is better, much less sit still for A or B, they use this contraption they hold that has flashing lights and music to get his attention. When he looks into the device, they measure his eyesight to gauge prescription. Then the doctor confirms that prescription by holding different lenses to Teddy's eyes and peer into his eyeballs. 

Teddy cooperated really well for the bright lights to look into the back of his eyeball at his optic nerve. So we got some gauge on his overall eye health and an actual prescription to boot. He's apparently 3.0 for farsightedness and 3.0 for astigmatism, so that balances out to a 1.5 for a prescription. The doctor tried some space-looking spectacles on Teddy to see if he'd focus better on a video when he could see better, but he immediately took them off and had no interest to wear them.

So, our plan is to evaluate Teddy again in 6 months to see if his vision is the same. That'll allow us to verify that the original readings are accurate, that he's not outgrowing his farsightedness (which often can happen in younger children) and that he's not worse. I imagine we'll likely try the spectacles again and be encouraged to get glasses for him. 

I know several other PIGN kids have glasses and learn to tolerate them remarkably well. We've been told that if it makes enough of a difference that people tend to tolerate glasses, even those who wouldn't normally. We'll worry about that and cross that bridge when it comes. (My friend had a mini breakdown on my behalf at the thought of making Teddy wearing glasses. She calmed down once her husband reassured her that Teddy will take any advantage to continue making as much mischief as possible.) 

It's amazing that they can test vision without a person saying a word or really even following instructions. It's even more amazing that we found an eye doctor who is so caring, compassionate and flexible in doing his job that he made something we were dreading into an experience where we all left with smiles. 

When Rare Isn't So Rare

We've been fortunate enough to meet children with CDG-PIGN in the past, as there's a family a couple hours away near Chicago whom we've visited twice. We also met a family in Maryland when we visited the National Institutes of Health last year. There's something incredibly special about meeting another family who instantly understands the struggles, challenges, joys and fears of your life with your child's rare disability. When there's fewer than 100 known cases in the world (and that's a generous estimate), it's pretty incredible to connect our families in person.

We had that opportunity again last week when we visited Florida for a family Disney vacation. (More to come when I have time on Disney as well as our life-shaking seizure that happened there.) We were actually hoping to meet two different families, but one was tied up with mission trips and a hiking trip to the Appalachian Trail (with her 17-year-old son with CDG-PIGN - talk about amazing!). I'm so grateful we had the chance to meet Vivien and her parents, Heather and John.

Vivien is 10 years old and lives about 40 minutes away from the resort where we stayed, so her parents ventured to meet us at our resort. Vivien was a bit shy at first but warmed up to enjoy some time on the playground, as well as in the hammocks. Her favorite, though, was when they visited our room and she could have all the pillows. Pillows are one of her favorite things, and it was so fun to see her snuggle into them with AJ and Teddy joining the mix.

Although there's certainly differences between the children with CDG-PIGN, there's striking similarities in their smiles, certain gestures and certainly their ability to manipulate their parents without saying a word. Vivien tried out Teddy's backpack carrier to see if it was comfortable for her as well as easier for her dad to carry her. She's petite for 10 years old, but she's still 10 years old and loves to be carried because she feels safe and secure in her dad's arms, not to mention that it's a lot of work for her to walk. Teddy and Vivien also checked out each other's wheelchairs, which was kind of fun. Teddy had to give Vivien a ride in his chair because he never stops moving and loves pushing and pulling people and things.

Both Teddy and Vivien were intrigued by each other.

We only visited for a couple hours because we flew in later in the afternoon and wanted to meet before our planned adventures for the week. But that time together was so precious, so incredible and left all of us smiling. Even neater was that Dave's parents got to meet another family like ours.

All the Disney magic aside, the meeting of our rare kiddos was one of the most magical moments.

Kindergarten Graduation

Today's the big day. Teddy celebrates his last day of kindergarten with his peers. Next year, he'll be in the same classroom with a new teacher as well as brand new first grade teacher and mix of first grade peers with whom he'll integrate and spend portions of his day.

This year Teddy has grown so much, both physically and developmentally. He's been welcomed into his school with open arms, and it's his version of Cheers. (Remember, the old TV sitcom?) Everyone knows his name.

He's had so much fun on his bus rides this year, with his beloved Ms. Lori taking him safely to school and bringing him home. She makes his bus rides so much fun that he usually pushes me away each morning, so he can get to the fun part instead of mom talking. She gave us a family fun pack for summer memories with spray chalk and squirt guns, along with the sweetest note. I think we might have to work out a park or ice cream date with her this summer because both boys adore her, and quite frankly, so do I.

I think I'll cry when Ms. Lori is no longer our bus driver for Teddy.

Teddy had a graduation ceremony this afternoon with all the rest of his kindergarten friends. I think my heart was so full it eeked tears out my eyes. It's been an absolutely amazing school year, and I'll leave you with these photos. The best is the video, though, showing off his skills, moves, his amazing para and the moment when he found me in the audience.

Teddy's teacher could barely manage a picture through her tears ... not of joy!

Teddy rocked his graduation with his kindergarten teacher!

All smiles for graduation! So much pride in those three smiles. 

Penultimate Day of Kindergarten

Since penultimate is one of my favorite words, I had to use it for this post. Teddy's in his final days of kindergarten, and this year has been filled with so much good. We've been extremely fortunate to have a team of people who adore Teddy for who he is and want nothing but the best for him. 

This was one of the e-mails I sent this week to his primary teacher, the one who voluntarily works with Teddy and others who have equally challenging needs day after day. She chooses to do this as her profession. Well, at least she chose it, but she's retiring this year. I swear it has nothing to do with Teddy.

Hi Sarah,

I know this is your last year at Franklin, and Teddy will definitely miss you next year. Transitions are always a challenge, and we're so glad you were Teddy's teacher for his first year at Franklin and technically first year fully in the school system as opposed to the early childhood program. We have appreciated so much your communication throughout the year, which has been constant and given us insight into at least a portion of his days. That helps put us at ease and facilitate conversations at home about what he's learned and done at school.

You've worked so hard with Ms. Thoma this year to have Teddy included and integrated with his kindergarten peers. That was such a challenge for us in the past, so this year has been wonderful to have that happen regularly without us constantly needing to push for it. Teddy is such a social little dude who loves to be around others and learns so much from them, even if he still does try to sit on them or plow right through them at times. Watching Teddy interact with his peers is truly a joy when I've been on the field trips or at school to see how much they enjoy having Teddy a part of their day. It's incredible to see their excitement to have Teddy included match Teddy's excitement to be included.

We appreciate the effort put forth on academics, but what truly matters most to us is that Teddy is accepted, loved and celebrated for the amazing person he is and encouraged to be his best self. You've absolutely done that through the year. Even when Teddy had a rough day, you always focused on the positive aspects of his day while acknowledging the challenges. It's clear that you've seen potential in Teddy from the first meeting and have worked to help him flourish. We have never doubted your absolute care and commitment to Teddy.

There's so much more I could say, but I wanted to make sure you know how much our family appreciated you this school year. We wish you the best of luck with your next endeavors and hope your daughter is able to get the support and stabilization that she needs.

With so much gratitude,

Kerry

Do you know how good it feels to be able to write something like that and mean every word? This teacher approached even Teddy's most challenging days, where he was a tired, miserable cuss, with empathy and positivity. 

The other letter I wrote was to Teddy's kindergarten teacher. She's the one who didn't necessarily commit her career to teaching children like Teddy, but she embraced him into her classroom with open arms.

Hi Beth,

The letter today made us smile and will go in Teddy's memory box for sure. I'm not sure if Sarah has gotten it to you yet, but there's a Dr. Suess book Oh the Places You'll Go! floating around school for Teddy's team to sign for him. We started this when he started school to capture the memories and thoughts of his team along the way.

But I wanted to take a few minutes to thank you for all that you've done for Teddy and our family through the year. Last year it was a constant struggle for us to get Teddy included with his typical peers, and this year you embraced Teddy right from the start. I remember meeting with you the first day of school and walking away ready to cry because of how it was clear that Teddy belonged in your class from his spot at the table, to his poster to create to the extra supplies you had for him.

I know that including Teddy in your classroom presents additional challenges and that it didn't always go as planned. I know there were times that Teddy created a bit of that chaos that follows him when he sits on his friends or plows through his friends or doesn't share appropriately. But giving him the opportunities to be included, to work on learning from his mistakes and to learn from all his friends has been wonderful.

I can't imagine a kindergarten teacher who plans more fun field trips than you, and you made sure Teddy was included on every one. Again, his behavior isn't always appropriate for the entire duration, but I know that he absolutely loved being included on every single trip. 

Teddy is such a social little dude who loves to be around others and learns so much from them, even if he still does try to sit on them or plow right through them at times. Watching Teddy interact with his peers is truly a joy when I've been on the field trips or at school to see how much they enjoy having Teddy a part of their day. It's incredible to see their excitement to have Teddy included match Teddy's excitement to be included.  

Your efforts to educate his friends about Teddy will go a long way as they grow older. They're at such an accepting age that having Teddy included now will pave the way for their interactions with others who are different from them in the future. I know Teddy learns from his friends, but I believe they learn from Teddy as well. 

You've set the bar high for his first grade teacher next year. We truly appreciate all you've done for Teddy and us as his parents.

Thank you,

Kerry

These ladies have set the bar high for his future teachers, including the one I met this afternoon who's replacing his regular teacher next year. I know that as we get closer to the start of school, that back-to-school anxiety will creep in because of the unknowns. But for now I'll treasure the blessing that has been this year and look forward to Mr. Theodore's kindergarten celebration tomorrow.