Tuesday, November 13, 2018

Diagnosis Day

It's been three years since everything and nothing changed during a 3-hour generic appointment.

Receiving an incredibly rare diagnosis was a complete shock. Honestly, getting a diagnosis in and of itself was a surprise. We had spent two years wondering, worrying and getting normal test results for a child who was obviously not normal. The odds of getting a diagnosis with this test were 25 present, and this was our last option for answers.

Yes, that's right. If this test was negative, our next step was to wait another 2 years or so for more genetic discoveries. Then they'd re-run the same incredibly expensive and time consuming (think 3 months) test hoping it would then trigger an answer.

Even though it wasn't the answer we were expecting, I remain grateful we got answers. It's allowed us to find out tribe, participate in research and move forward with the continual process of acceptance. It's a lifelong journey, but I'll take that over the alternative considering how blessed medical research was and still is regarding CDG-PIGN.

Monday, November 12, 2018

Best Brother

We've often said that AJ is already a better person than we will ever be, simply because he's growing up with a brother with a significant genetic disorder. Teddy's CDG affects every aspect of life for our family, adjusting our version of normal.

AJ has spent 5 years of his life with a brother who has never spoken a word to him. Yet he's learned to understand Teddy's wants and needs, even telling us at a young age that Teddy wanted a drink because he saw Teddy staring at his own cup as he drank. He may not understand everything Teddy tries to communicate, but he's a pretty capable translator.

Not only that, but he interacts with Teddy just like anyone would with their little brother. He talks to him, plays with him and headbutts him more than I'd like to admit. He treats Teddy like a normal human being who needs a bit of extra assistance with things. It's been fantastic to see the times he interacts with others who may have a disability in the same way because it's simply how life is ... for AJ at least.

If you need proof that AJ is an amazing brother, then check out the thank you he wrote Teddy at school last month. I'll translate below in case you're not skilled in the art of reading first grade writing ... of a future engineer.

This is tucked away in Teddy's memory box.
Dear Teddy,

Thank you for being the best brother I've had. You will allwas (always) be my favorit (favorite) brothr (brother) I allwasa (always) had.

Sincerely,
AJ, yoru (your) best brothr (brother)

Thursday, November 1, 2018

Happy Halloween!

All right. I know Halloween was yesterday, but we were too busy having fun for me to share last night. I know a number of children with CDG-PIGN are enthralled with Halloween, some to the point of asking about Halloween for months on end, and I believe Teddy is going to follow in their footsteps. There's something magical and inclusive about this holiday that is perfect for my little social butterfly.

Teddy absolutely loves people. If you smile at him, he believes you are his friend. He will even take strangers by the hand if they smile at him and interact with him. He's extremely curious as well and wants to check out our neighbors' houses and particularly garages when given the opportunity. 

So eager to keep up with the kids!
So a holiday where you get to meet a whole bunch of people and go right up to their houses is ideal for Teddy. We met up with one of AJ's friends in her neighborhood and started trick-or-treating with her neighborhood friends. We stayed with them for quite a while, although we kept dropping further and further behind because AJ couldn't run in his costume, and Teddy's run is a fast walk. That bummed AJ out, but Teddy had the time of his life.

When Teddy saw the front door where he was supposed to go, he made a beeline without any regard for ditches or driveways. He took the shortest path, fell quite a few times and picked himself right up to keep trucking up the house. Then he was more interested in trying to see if he could go inside the house than taking any candy. I carried his bag for him, and he managed to put a few pieces into his own bag, which is a great use of his fine motor and motor planning skills. There were a few open garages that required a bit of steering to keep Teddy from exploring, but he had such smiles and amazement on his face that he was able to go visit all these people. 

So cute and so easy to redirect to the next house!

Costumed characters can be a bit dicey for Teddy, but he was remarkably fine with everyone at Halloween. There were a few costumes that seemed to intrigue him, and none scared him. I think the fact that he had such freedom to go visit people wiped out any concerns about costumes.

I loved seeing his independence that he would walk, or run, toward houses with the other children. I imagine future costumes and years where he perhaps uses his talker to say "Trick or Treat" and "Thank you." Wouldn't that be amazing?

As for this year, it was perfect. We had amazing weather, the nicest I can remember in years. We spent nearly 1.5 hours trick or treating, with Teddy doing an incredible amount of walking with some breaks in his chair. Then we came home to have our neighbors over for margaritas and cookies, which seems to be the start of a new tradition. It gave the kids an hour to wind down after trick or treating and us adults the chance to socialize ... all in our house where Teddy has relatively free reign.

And what was Teddy for Halloween? If you couldn't tell from the pictures, he was a bull in a china shop. At some point, I am confident Teddy will exercise some strong opinions about Halloween costumes, but for now, he could care less. So I will continue to have my fun creating costumes that are made to suit Teddy's personality. 

Tuesday, October 30, 2018

An Exciting Invitation

Two weeks ago, Teddy brought home an envelope from his kindergarten class. It was an invitation for a birthday party. Let me make sure you understand: it was his first invitation to a friend's birthday. And it was a friend from his kindergarten class, not his class with other children with significant special needs. 

Teddy's first birthday party invitation to a friend's party.
I know AJ brought home several all-class or all-boy party invites, along with a few special friend party invitations, through the past two years. It's fairly common at this age to have entire classes invited to parties, although that sounds like a nightmare to me. Who wants that much crap from 20 kids who have no idea what your child likes? 

But this is notable for a few reasons. First, it means that Teddy is actually included in the kindergarten classroom enough that he was included, assuming the entire class was invited. Second, it means he was included, regardless of his differences because I cannot imagine that his classmates don't share about the boy who doesn't speak. 

Unfortunately, we were up north, so we couldn't attend. I say we because I would have had to supervise and support Teddy if he attended, which would have been interesting to say the least. But we had planned family photos up north, so that's where went with happy hearts that Teddy was included.

Let's be real: I would have been doing that move with Teddy at the party.
We managed a fairly normal family photo.

Thursday, October 25, 2018

Teddy's First Field Trip (A Post About Inclusion)

Yesterday was a momentous day, Teddy's first field trip. I know many eagerly accompany their children as was evidenced by the fact that each chaperone had a whopping two children to supervise on this particular field trip. For us, though, chaperoning wasn't optional. It was a requirement for Teddy to participate because he is not assigned a 1:1 aide at school, so no one could accompany him on this field trip because it would have left his classroom understaffed.

You see, this wasn't a field trip for Teddy's special education classroom. This was a kindergarten field trip, and Teddy's kindergarten teacher said they'd love for Teddy to be able to join them. The only caveats were that we'd need to chaperone and that the bus had already been ordered and didn't have a 5-point restraint, which is what Teddy has in his plan to avoid him driving the bus.

As much as I wished Teddy had a 1:1 aide, I had no problem attending as his chaperone. My logic is that his team does so much to ensure he's included in the kindergarten classroom as much as possible that we, as his parents, can do our part to help with that as well.

And the 5-point restraint was not necessary because Teddy was so darn excited to finally get to ride the real, big school bus that he sat as well as any other kindergarten student for the entire 1.5 hours of the drive. He was literally jumping up and down with excitement before we got on the bus. Honestly, he'd have been happy if his field trip consisted simply of riding the bus.

Sheer joy for a simple bus ride.
But when we got the the Little Farmer, which is essentially an apple orchard, he was more than happy to leave the bus to explore. As he was walking with his class, I let go of his hand because he was following the group pretty well. One of his classmates gasped and said, "Look! Teddy's walking all by himself!" I laughed and said that Teddy is perfectly capable of walking by himself, but that sometimes he tries to go places he doesn't belong.

Throughout the day, children called out, "Hi Teddy!" with an occasional one saying, "I'm going to play with Teddy" for the few seconds that are a typical child's attention span on a brand-new playground. Teddy's favorite parts of the really fun playground were the real-size wooden tractor that he loved to "drive" and the race track with all sorts of pedal-powered carts. He even caught a ride behind two different children in the two-person car with me pushing the car.

There were the usual challenges that occur, such as throwing himself to the ground when he didn't get what he wanted or collapsing into a pile of dead weight. I made the right call in bringing the backpack carrier to contain and redirect him during the tour and when we needed to transition from the playground to the lunch area.

Still, from Teddy's perspective, it was an incredible day. He got to spend a day outside, one of his favorite places to be, with his kindergarten class, which is also one of his favorite places to be. He went for a wagon ride behind a tractor, which is one of his favorite things. He picked an apple and the scavenged another from the ground because why not? He ate his entire apple, core and all, and then eyed up my apple core before I put it in the core bag. He sat on a pumpkin in the patch to pick it out and then carried it by himself part of the way back to the wagon.

Teddy spent 20 minutes of the bus ride home hugging his pumpkin with a giant, joyful grin on his face. He was so proud of his pumpkin.

Teddy with his beloved pumpkin.
And what did it take for Teddy to have this incredible experience? A teacher who extended the invitation and set the expectations for me. She had the same experience for Teddy as the other students, including a Bingo card if he wanted for the bus ride and a name tag, even though she wasn't sure if he'd wear it. (He didn't care much about the Bingo card but wore his name tag remarkable well.) It took her willingness to include him, even though it was one extra child and a little more coordination. And what was the result?

  • A little boy who had the best first field trip ever, full of so many of his favorite things.
  • A classroom full of children who were excited to have their friend Teddy join them on the field trip who saw that Teddy can do many of the same things they can, in his own way.
  • A teacher who was rewarded for her efforts with giant smiles from a pumpkin-hugging boy.
  • A mom whose heart was so full of joy and gratitude.

Monday, October 22, 2018

Detroit Free Press Marathon Weekend: We Run 4

I know I've talked about I Run 4 on this blog when the boys first got matched more than two years ago, but perhaps this post will capture how much this organization means to our family, specifically the two ladies who are matched with our boys. Teddy was matched a month after his diagnosis, which was a pretty difficult period of time for us as we came to terms with the information the doctors shared. His buddy Heather was a bright spot, with each post making us smile and every care package serving as a ray of sunshine. AJ was matched with Bridget a few months later after two unsuccessful matches that were just God's way of connecting us to Bridget. She's been an incredible buddy to AJ, supporting his interests, encouraging him to work hard and keep trying and filling his bedroom (in the best possible way) with swag from the dozens of races she does.

The runners representing for each of our buddies: AJ, Luke and Teddy.
This weekend we headed to Detroit as a family. We stopped along the way at Indiana Dunes National Lakeshore on a gloomy, rainy day, but we managed to explore with a short 3/4-mile hike, enough for the boys to earn Junior Ranger badges from a fantastic ranger who offered, multiple times, for Teddy to get the free National Parks lifetime pass that he's entitled to receive. We told him that we appreciated the offer, but we're more than happy to contribute our annual fee to the National Park Service each year as our way to support them. The really cool part was that he included Teddy right along with AJ and gave him a Junior Ranger badge as well.

We finished our drive to Detroit Saturday morning and headed right to the expo center for packet pickup. There was a minor snafu with my passport, so I spent some time with the problems and solutions people to make sure I was set to run my international leg of the relay race the following day. While there, we met up with Heather and her husband Steve, who were a part of our relay team. We continued through the expo and sat down with some snacks when Bridget arrived, walked up behind AJ and surprised him. (Honestly, I think she scared the dickens out of him because she popped right next to him, and he was completely focused on the food he just got.) This was the first time we ever met Bridget, and AJ was so excited to spend time with her. He went through the expo again with Bridget and her friends from her running group, Sole Family. Teddy used that time to thoroughly explore the expo center. He rode the escalators with Dave and I, took Heather to the wine bar and tried to sneak her espresso and showed Steve every single shoe shine station. In other words, he had fun.

Later that afternoon, we met Bridget and her husband Joey, along with Heather and Steve, at a cider mill. Cider mills are apparently Michigan's version of apple orchards. This one had animals to look at, a walking path along a river and delicious cider and donuts. We explored together and just enjoyed the opportunity to get to know each other better. It was a dreary, cold, rainy day, but the time together (and still-warm apple cider donuts if you ask Dave and the boys) was worth the chilliness.

Teddy took a shine to Bridget immediately!
Sunday was our relay race, and Bridget had custom shirts made for our relay team, complete with the number for our leg on the back of the shirts. She included all our running buddies and had the CDG logo for Teddy's diagnosis, along with my buddy's awareness ribbon for Down Syndrome. Since AJ has no logo, Bridget included the Superman one because she sent AJ a Superbrother shirt earlier this year. I chuckled to myself when AJ read the back of the shirt and immediately identified that as Superbrother for him.

Custom shirts for our group, thanks to Bridget.

Since it was cold and windy, not to mention it was downtown Detroit with 15,000+ runners and roads closed for the race, Dave stayed back with the boys. They went shopping and enjoyed the hotel's water park while we did the marathon relay. Bridget kicked us off, running over the bridge into Canada, where she handed off to me. I ran underwater through the tunnel back to the United States, which was extremely cool and just an awesome experience. I spent a portion of my time running thinking of my grandfather, whose memorial service was that day. As much as I felt like I should be there instead, my mom was understanding and supportive of us heading to the race still. I handed off to Steve, who ran the rest of the race, along with Heather, who was our official runner for the last two legs.

All smiles in the warm expo center after our marathon relay, team I Run 4.
Once all the other Sole Family folks got done running, we headed out to meet Dave and the boys for a late lunch. (Oddly enough, these full marathons take about twice as long as the half marathons I usually do.) We ended up at a tiny IHOP, but that didn't matter. It actually worked out perfectly that AJ got a booth to himself with Bridget for 1:1 conversation and attention. Several of Bridget's friends from Sole Family joined us, which was great since I already felt as though I knew them from all her posts and their welcoming us with open arms into their group throughout the race.

Best of buds, in person finally!
We had to say our goodbyes, until next time, to Bridget when we left the restaurant. Since Heather lives only a few miles from where we stayed (which made it convenient for them to graciously get me to the start of the race since I had no idea where I was going), we headed to their house for a little bit longer to visit. Teddy loved meeting their three dogs, cat and bunny, and AJ thought their shuffleboard table was as cool as their Harry Potter LEGOs. I'm pretty sure AJ knows a remarkable amount about Harry Potter from the 50 million questions he asked Steve.

Heather was a good sport with Teddy's odd requests, like playing in her bed together.
All in all, it was just incredible to spend the weekend with these two people, and their family and friends, who provide so much happiness, joy and support for our family. My heart is filled with gratitude.

Tuesday, October 16, 2018

Weekend Plans

This weekend we're heading to Michigan for a long weekend, pulling the boys from school Friday and Monday. A year ago, AJ's running buddy ran the Detroit marathon, which prompted his buddy, Teddy's buddy and I to decide we should do the marathon together as a relay. Fast forward to this year, and we managed to organize a relay team.

So we're heading to Michigan, with a stop Friday at Indiana Dunes National Seashore to explore, stretch our legs and get Junior Ranger badges. Then we'll head the rest of the way Saturday to meet our team for packet pickup. AJ's running buddy, Ms. Bridget, is going to run the first leg. I'm taking the second leg, followed by Teddy's running buddy's husband Steve. Teddy's buddy Heather will finish our marathon team.

AJ's super excited to meet his running buddy for the first time, and I'm excited for the whole weekend. We'll get to spend time with both buddies, outside of the race, and have some fun time together as a family after a week of work travel for Dave. It's a weekend spent with people who enrich our lives and are two of the biggest supporters of our children.

The only downside is that my running buddy, who lives in the area, is out of town. Guess we'll have to try again next year, right?