A Letter to His Teachers

I firmly believe God's been doing his best to prepare me for the honor and challenges of being Teddy's mom well before Teddy was born. In the early months after I had AJ, I stumbled across a blog called Noah's Dad, which details a family's unexpected journey with Down Syndrome. I found so many of the posts insightful and thought how beneficial this information would be to another family in a similar situation. Although Teddy does not share the same diagnosis, there's enough parallels to give me hope, inspiration and a few ideas.

One thing Noah's parents did before Noah entered a traditional classroom was to send a letter to his teachers to help them better understand him. I thought this was an excellent idea. It's something more personal (and concise) than the lengthy IEP. So with school starting in a couple weeks, here's the letter Teddy's teachers will receive:



We wanted to introduce you to our son Teddy. We know you have his ISP, but there’s more to him than what’s documented there.

Teddy has a rare genetic disorder called Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1. We finally learned his diagnosis in November 2015 after nearly 2 years of searching for answer after his first seizures. At the time, we were told Teddy was the 15^th child known in the entire world with this disorder, which was only discovered by the medical field in 2011. Our joke became that Teddy wasn’t one in a million. He’s more like one in a half billion.

Essentially, Teddy’s genetic mutations affect his body’s ability to send messages and connect information because the pathways and processes don’t function typically. Part of his diagnosis includes hypotonia. This doesn’t mean he is weak, but it means his muscles are more relaxed and he has to work harder than you or I to support his own body. You will notice he is a bit floppy, for lack of a better word, and tends to choose positions that help him support himself. 

Teddy is curious about the world around him and likes to explore, although his methods are not always appropriate. Teddy enjoys the feel of items in his mouth, so we try to redirect him to something appropriate like chewelry if he has that need. Teddy likes to climb, so you may want to watch your bookcases, tables and anything else you may not realize he will believe is a mountain for him to scale. He’s at the point where he believes the word “no” means that he should laugh and continue whatever action prompted the word. 

One of the things that makes Teddy unique is he has an extremely high pain threshold. He may cry when his feelings are hurt or when he’s tired, but he rarely cries when he’s hurt (or he will cry for only a brief time where most other children would cry for much longer). This sometimes means we find bruises or scrapes without knowing exactly when they occurred because Teddy never cried to let us know something hurt. 

The most important thing about our son is that he is a child first just like any other child. He wants to play and learn. If you have any questions about Teddy or his genetic disorder, we hope you feel comfortable enough to ask us. We have created a blog about Teddy’s journey, which you can find at www.teddystriumphs.blogspot.com if you’re interested. 

We are very proud of our son and love him more than we could ever express. Thanks for the role you are playing in his life, and thank you for all you do to invest in our children. We appreciate you, and we’re so excited for the possibilities for Teddy as you work with him this year.

Birth to Three

Before Teddy turned one, we were referred to our county's Birth to Three program, which is the early intervention program in Wisconsin. I distinctly recall the first assessment where Teddy was his happy Teddy self to be assessed by three pretty ladies but supported himself similar to Jello without a mold. We were happy to have some supports in place for Teddy and to receive direction on how to best help him, but we were also nervous because this was our first foray into any type of supports beyond medical visits.

For me, it served as a reality check that my child qualified for supports. (Let's just say he didn't barely squeak through the screening requirements ... there was no doubt he qualified.) It was hard to read the first reports that showed how significant his delays were in each and every area, barely registering at all on at least one of the scales. As heartbreaking as those reports were, we were also excited to see what Birth to Three would do for Teddy.

As it turns out, Birth to Three became perhaps one of my favorite therapy visits, if for no other reason than these appointments were the easiest. Teddy's team came to our house. At first, I worried about having a clean house and eventually settled on a house with the toys mostly picked up in the room where we'd play ... most of the time ... then some of the time. These appointments carried the least amount of stress because the team always asked if there was anything else we needed and often pointed us to resources we didn't know existed.

My absolute favorite part, though, was how excited they were for each and every one of Teddy's accomplishments. It felt like his outpatient therapists were pleased when he hit a goal but immediately set a new one. I understand that's what funding requires, but I just wanted to enjoy the moment. Birth to Three was where it was pure celebration for that day instead of "Here's his next goal."

When I look back at his first Individual Family Support Plan, I read his first goals we set for him: to support himself while hiking in a backback carrier, highchair or sled with AJ's assistance. Teddy got himself into a sitting position independently the first time on his first birthday, and how far he's come since then. I remember him slumping to the side in his highchair and re-positioning him multiple times each meal to an upright position. Now, this same little boy is walking nearly across a room by himself.

When Teddy's Birth to Three team asked if we had any questions on his last meeting before his birthday, my reply was, "Can't we pretend he's not turning three?" They laughed, but we all felt the same way. They've been some of Teddy's biggest supporters, but in a month he's off to school to see what other amazing things he can do.

Fine Motor Mess

Yesterday I was putting away laundry upstairs, and Teddy was upstairs with me. I know there's a few more things he can get into upstairs, such as eating books if he gets hungry while reading them or opening cupboards to find interesting things. I heard him playing in AJ's room, and then he went into the bathroom and shut the door. (He doesn't shut the door for privacy. It's just that he likes playing with doors.)

As I opened the door to check on him a few minutes later, I was really hoping he wasn't splashing in the toilet. Thankfully, he wasn't. Instead, he was working on his fine motor skills, and I really applaud his initiative to do therapy exercises all by himself.

He unscrewed the lid from the red bath soap (that resembles finger paint) all by himself. Then he squeezed soap out of the tube with enough force to splatter it several feet away on the wall. He also applied a good amount to the counter and was using his hand, and isolating his thumb, to swipe through the paint.

Check out that thumb swiping!

What a tremendous amount of fine motor skills he used! I was equally impressed that although he had plenty of soap on his face, he didn't appear to have intentionally eaten any of it.

He was mighty pleased with himself, rightfully so.

With a few minutes of wiping up with a bath towel, all the red soap was removed from the bathroom. I didn't wash Teddy off because we were 10 minutes from leaving for his annual checkup, so I just wiped the visible soap on him. He played in his swimming pool yesterday afternoon. Soap in the morning plus water in the afternoon ... sounds like we can count that as a bath.

The Motivational Speaker Who Doesn't Speak

One of the things we've noticed about Teddy is that he often brings out the best in people. I'm certain, in our future, his uniqueness will bring out the worst in a select few people, but I'm not going to dwell on that . We'll deal with that when it happens and for now share the amazing ability Teddy has to make people be kinder, more positive and more empathetic without saying a single word.

We spent this past weekend celebrating my grandpa's 94th birthday, so Teddy got his fill of family fun (and golf cart, 4-wheeler and tractor rides). I have one uncle who is quite accurately described as a Southern redneck. I recall Dave being in awe of the stories my uncle told about the good ol' days when dynamite was readily accessible to deal with beaver dams on your property. This same uncle spent the weekend cajoling Teddy at every opportunity to say, "Uncle John" as his first words.

Another uncle marveled at how far Teddy walked by himself and was so excited for him. He said, "That smile gets me every time." This is the same man who I was amazed to learn prays every night for "Teddy in Oshkosh." (He provides a city as a reference point to make it easy for the Man upstairs to direct the prayers to the right person.)

And Teddy has yet another uncle completely wrapped around his finger. This retired construction worker, farmer and trucker readily greets Teddy with hugs, kisses and golf cart rides. My uncle is considerate to ensure Teddy's grandpa gets his fair share of time and attention, but it's obvious Teddy holds a special place in his heart.

As for my aunts, they adore Teddy, which is expected with their personalities. It's when Teddy pulls the sweetness from less expected places that you realize how special his gift is. Most motivational speakers practice their craft for hours on end and use plenty of words with the hope of reaching at least a few people within their audience. For Teddy, he needs no words to work his magic. His smile, laughter and genuine love of life transform those he meets.

Camping

One of our favorite things to do before children used to be camping. It's still one of our favorite family activities, but we've made a few tweaks along the way to accommodate two children. For example, we now plan easy meals like penny hot dogs rather than time-consuming ones like shish kabobs. We also expect to get kicked, punched and boot stomped through the course of the night as we have one, sometimes two, young ninja warriors sharing our air bed with us. But it's worth it for the family memories.

Hammock time with Teddy is fun, just not relaxing.

We headed to Porcupine Mountains State Park in upper Michigan last weekend. This was the first place we ever took AJ camping, but Teddy's never been, which means we haven't made it there in more than years. Huge storms had ravaged the area twice in the past week or so, so roads and trails were closed along the way and there was no power when we arrived. Since we camp in a tent, that didn't impact us too much beyond walking a bit further to use the pit toilet for the first couple hours until power was restored.

Friday was nearly 90 degrees, which is rather toasty for the shores of Lake Superior. We made the most of that by enjoying Lake Superior when it's usually frigid waters felt slightly warmer. Both boys loved the water, although Teddy kept trying to drink the waves as they came in. I'm pretty sure he wasn't thirsty ... just having fun.

Check out Captain AJ's sand beard ... and forehead ... and chest ... and legs.

We spent time at the beach both Friday and Saturday, playing in the water (Dave rudely tackled me in one day because I "accidently" splashed him a little bit.), collecting rocks (AJ), trying to escape up the wooden stairs (Teddy) and having plenty of fun (all of us).

Teddy thought this was pretty funny.

Despite the heat, we did a bit of hiking around the Presque Isle area, which is a gorgeous place with waterfalls, wild blueberries and trails to explore. It's fun to watch AJ learn to forage for wild berries and teach him which ones are which. He's a huge fan of thimbleberries, as is Teddy. They're a delicious berry that we've only found in abundance in the UP. My best description of them is they taste like a fruit rollup, and I mean that as a good thing. We were lucky they were starting to ripen while we were there, so we at least got to sample them.

Last time we were here, there was water covering this crossing.

AJ's favorite type of hiking is rambling scrambling on rocks. He liked checking out Lake of the Clouds between the storm damage on the board walk with the caution tape around the openings, the views of the lake with the magnifying viewer and scrambling up the rocks. Teddy had been up early that morning, so he was a bit tired but made it until we started heading home to snooze.

AJ showed me the path around the water.

It reminded us of how much we enjoy camping, so we're going to squeeze in as much as we can yet this late summer. In two weeks, we'll head to Pictured Rocks, which is one of our favorite places.

Bay Beach Birthday Fun

Last week on Teddy's birthday, Dave took the afternoon off to spend the day together as a family. Even though it was nearly 90 degrees, we headed to Bay Beach Amusement Park in Green Bay. It's a place with all sorts of carnival rides, and tickets are only a quarter. Granted, some rides cost 4 tickets, but the most you pay for any one ride is $1. So for less than $30, we spent a couple hours going on rides and cooling off with a combination of ice cream, root beer floats and frozen lemonades.

We had missed the Ferris wheel the one time we went last year because a storm came while we were in line. I took both boys on the the Ferris wheel and managed to keep Teddy in the chair the entire time. He really enjoyed it, aside from being a bit antsy while they loaded the entire wheel since we were the first ones on. As for me, I got to experience why my mom didn't liked the Ferris wheel. I never thought a Ferris wheel would make me queasy, but apparently my equilibrium likes to be messed with less as I gracefully age. AJ loved it so much that he begged to go on a second time, so Dave took him for a spin while Teddy and I hit up the carousel again.

I'm sure that safety bar was plenty delicious ... hey, it kept him in the car.

I think it's a fair statement to say that Teddy believes the carousel is one of the greatest things on the entire planet (along with the slides at the water park). He gets so excited when he sees it and puts some pep in his step as he's walking toward it. He does a great job holding onto the handle, unless he sits on the antelope. Then he holds onto the antlers because ... well, why not? Teddy rode the carousel at least 5 times and enjoyed it as much the last time as the first time.

My favorite picture of the day.

We also checked out a few other rides, like a big ship that we all rode together, and a train that loops through the park. Teddy also really liked the giant slide that required me to climb 3 stories worth of stairs while lugging him and a burlap sack. (I'm not complaining about the burlap. That wasn't the heavy part.) It was worth it for his giggles on the way down.

Birthday boy smiles.

It was an absolutely perfect afternoon as a family, making memories and celebrating the joys of childhood fun. I thought it was cool that two of the rides Teddy wouldn't have been able to do earlier in the summer because you had to be at least 3 to ride. Wait ... had we went earlier, then I wouldn't have had to carry him up three stories of stairs ...

And if you're wondering, his brand new white shirt was no longer white by the time we ended the day, especially not after cake when we stopped by his grandparents' house for supper while we were there.

I shall smear this everywhere. Cake in my hair? Don't care.

Happy 3rd Birthday Teddy!

Three years ago Teddy made his entrance into this world, taking everyone by surprise a bit although his arrival was completely expected. He simply did things on his terms, and that hasn't changed at all in the past few years.

Teddy's birthday brings mixed emotions for me. I almost ended up in tears walking the toy aisles because the toys that would entertain Teddy aren't the ones marked 3-5 years of age. I'm reminded, not that I ever forget, of how far he lags behind milestones ... and how he may never hit some milestones ... and how much I would love to hear him say, "I love you."

Instead, I know that for now, his laughs, smiles, arm flails, squeezes and tackles are his way of telling me, "I love you." And by that measure, Teddy tells me, "I love you" many times every day.

As much as that sadness lingers for what isn't and what may not be, birthdays also serve as a reminder of how much Teddy has accomplished. Two years ago today, Teddy got into a seated position by himself for the first time (in our tent at Crater Lake National Park after a horrid night's lack of sleep ... not that I still remember that). Last year, we caught him clapping for one of the first times ever while taking his 2-year pictures. He used his gait trainer at his birthday party last year for close to 30 minutes, which was a record for him, and a long time for everyone to dodge him because he had no concept of steering and crashed into everything and everyone.

In the past year, Teddy's babbled. He's learned to give high fives, although we need to keep working on that to keep it fresh in his mind. He's given me my first true, intentional hug. He understands the command, "load up," and willingly grabs on for a piggyback ride (although we're still working on holding on the whole time). He's able to climb on and hold on while I get him tucked into a back carrier. He's climbed everything that could possibly be climbed. He can walk fairly long distances holding two hands for assistance. He can walk short distances holding one hand for assistance. He can walk 10 feet by himself. He can balance standing for nearly 5 seconds. He can stack rings. He plays the "stinky feet" game. He's taught us how to understand more of his preferences when he communicates his wants.

This is typical Teddy, climbing and smiling.

When we got Teddy's diagnosis last November, we were shocked to read in the literature provided to us after we left the geneticist's office that, "Most affected individuals die before 3 years of age." We wouldn't share the name of his syndrome with our parents until we received clarification from our geneticist that there was no reason to believe Teddy's health or life was in immediate jeopardy.

In the past 8 months, we've connected with 10 other families who have children with the same diagnosis as Teddy, which has been a tremendous blessing. We've mourned with those families as two children passed away this year well before the age of 3. And we still remember their losses.

But today we celebrate Teddy. We celebrate that he's defied the medical literature, and hopefully his story will someday be included to give other families a better prognosis. We celebrate all that he's accomplished and look forward to another amazing and fun-filled year with him.

Happy 3rd birthday Teddy!