A Talker Named Tobii

It's no secret that communication is one of the most challenging aspects for Teddy. He's non-verbal, meaning he cannot communicate verbally. His communication skills have evolved through the years from simply crying, to looking at items he wanted and then to pointing, which was a huge milestone. He's used PECs (picture exchange communication), talker buttons and Proloquo on an iPad. He's also developed a handful of signs, which are honestly the most effective way for him to communicate beyond him physically directing us to do what he wants. 

His speech therapist, who's worked with him since he was one, suggested we demo a different device that is strictly used for AAC (augmentative and alternative communication). We have no been successful with Proloquo, which is a speech program, partially because Teddy is so interested in technology that he manages to unlock the settings, change things and swipe his way to other parts of the iPad. The other part I'll own for a lack of consistency and modeling on our part. (Modeling is teaching by doing, consistently reinforcing the use of a device and using it yourself to demonstrate how it works. It's an everyday all day thing, which is why we've failed in that area.)

She also pointed out that although Teddy is doing great with his handful of signs that a universal language will be helpful to him to communicate with everyone, including those who don't understand his version of sign. We also had conversations with some who have older children who acknowledged that as kids transition that it's critically important for their voice to be understood. Those conversations reinvigorated my desire to do the hard work required of us as a family. Also, we still have several months of COVID ahead of us where we can truly focus with our childcare providers to model consistency and help him learn the program.

So today we demoed Tobii Dynavox during speech therapy. AJ came along to learn the device, as he will serve as tech support if we are approved. That will be critical to us being successful that I won't have to spend the time configuring it and can assign that responsibility to AJ. We looked at two different models, walked through how they worked and played while using them to get an idea of how to integrate them into play. 

His speech therapist thinks he can handle this ... I trust her. 

This system feels like a huge leap because it focuses on core language (think sight words in common terms) that we use in language, in addition to objects and more concrete things. Thus far, we've only worked with more concrete language with Teddy, although he's worked on sight words some at school. This would have complete sentences, not just single words like "playground." Don't get me wrong, Proloque can have complete sentences as well, but we didn't have it set up that way. 

His speech therapist has such confidence in Teddy and sees more potential in him than others may. With her support, and our amazing childcare providers, we're going to demo this system and see if we think it will work for Teddy. The demo will either be 4 weeks or possibly 12 weeks as some insurance plans require that long of a demo before they will approve the device. From there, it's working through insurance, grants and/or his county waiver program for approval and funding. Given that we're likely at least 6 weeks out before we get a demo device, we still have a while to wait. I also imagine that it would be demo device and then a lag of a couple months to order the device and get it approved since approval always takes time. 

Here's to hoping that Tobii will become a talkative member of our family. 

Galactic Genes

One of our newest families to our PIGN group is already a tremendous advocate for their young son. It's neat to see how different families process the diagnosis and how some choose to share their journey both to raise awareness and as a coping mechanism, at least in our case. They are using Instagram as their platform to share his story. One of the posts they shared had this quote that resonated with me:

"There's as many atoms in a single molecule of your DNA as there are stars in the typical galaxy. We are, each of us, a little universe."  —Neil deGrasse Tyson  

He certainly thinks he's the center of the universe. 

CDG-PIGN Around the World

One of the reasons we started our blog was to put something positive, yet realistic, into the world when we could only find a few depressing clinical research papers on Teddy's diagnosis. We wanted others who searched for MCAHSS1, CDG or PIGN to find something that provides hope and an opportunity to connect. We knew how much it meant to us when we connected with the first family with Teddy's diagnosis a month after we first learned the news. That e-mail allowed us to find the Facebook group, which has become our community. Instant friendships were made there, bound by a common disorder that is anything but common.

That Facebook group started so small, with only a handful of children who I knew all by name. In the past few years, we went from adding 1 child a year at most to several in a month at times. Candidly, it's gotten hard to keep track of all the children and families in our group, but we now have more people who share their experiences and help one another.

When a family from London reached out after finding this blog, they wanted to do a phone call. Rather than figure out international calling, we simply did a zoom call. And the lightbulb clicked. We could do a zoom meeting with our CDG group to connect families from around the world via technology. There was immediate interest from the group, so less than a week later we hosted our inaugural CDG-PIGN virtual gathering. 

Oh my goodness! It was absolutely incredible to see and hear these other families from around the world. We got to see a few of the children who are affected, and I couldn't not act like a giddy schoolkid waving at each of them. There are few instances where others nod in agreement when we share stories about Teddy, not just understanding but actual real-life experience that was the same. 

Oh, you know, some of my closest friends from around the world. 

We had families from Poland, Australia, Germany, the Netherlands and several from the United States, including families that moved here from Poland and the UK. It was a bit of a challenge to find the right time to do an international gathering, but we settled on 2 p.m. our time. Our Australian friends joined us at 6 a.m. and our European friends ended the call with us at 10:30 p.m. (Yes, we chatted nearly 1.5 hours!). The conversation flowed in English remarkably well, interrupted by a spontaneous breakout in Polish. That breakout simply made us all smile because it was so neat to see the connection, to be heard and understood by someone who simply gets it ... in their native language. 

We plan to schedule another zoom meeting next month and will likely continue monthly as long as there is interest. This gives us an opportunity to share what works for us, to problem solve, to ask questions and to learn from one another as we truly are the best experts on our children and their diagnosis. It allows us to leverage specialists from around the world on how to best help our children thrive. But, equally important if not more important, is the ability to connect with others who inherently get it. Trust me, we have amazing family and friends who provide an incredible support network for us. And those who interact with Teddy regularly understand so much of our life, but there's nothing quite like talking to other families who are walking this same extremely rare genetic journey. 

Cooking Capabilities

Teddy has an interesting relationship with the kitchen. He believes the kitchen sink is his personal waterpark, which often results in some disagreements when the waterpark is closed because I need to actually do the dishes or don't care to clean up after he wanders away from the wave pool.

He can reach our knife block and knows how to open the hideaway door to access it. Most of the time he leaves it alone, but occasionally try to grab a knife and run away because he knows he's not supposed to have a knife. That's always fun to try to safely recover the knife while not cutting either of us. Knock on wood, so far we've been successful.

If food is on the stove, it's likely he'll try to stir it with no concept that pans are hot or recognition when he burns himself. We always try to keep the stirring tools further away because he gravitates to utensils like there's a magnetic draw. He's also been known to use spatulas, giant stirring spoons and various other utensils to eat his food. It's apparently more fun that way ... coming from the child who feels a fork is necessary for graham crackers. He's civilized like that and likes to use utensils. 

When he's protesting that we're starving him, he'll self-serve from the refrigerator or cupboards if we leave them unlocked. Most often, he grabs frozen waffles or pancakes, but he tried to sneak by Dave with a drumstick for breakfast the other day. Not a bad breakfast choice, in my opinion. When that is locked and we're cooking food in the oven, we tell him to check out the magic food box. He'll sit and stare inside the oven, asking repeatedly for what is cooking. He will pull out oven mitts, put them on his hands and wait for us to open the oven door. Yeah, that's not happening. Then he'll often put the oven mitts on us and direct us to the door. That's how we got the display of counting last week. 

We normally keep the oven locked because of Teddy's absolute disregard for safety. In fact, there's times that if we leave it unlocked that Teddy will actually direct us to lock the oven. It's like he sometimes knows he's not trustworthy. However, last week when I was unloading the dishwasher, Teddy determined that he was going to use the oven. Mind you, the oven was completely cool. He put on two hot pads and proceeded to open the oven. Then he managed to crawl on top of the top rack to wedge himself in the oven. I am quite certain that if I wouldn't have pulled him out, after snapping a picture, that he would have completely wedged himself in there and attempted to shut the door to boot.

Rump roast anyone?

I think he might need a few more cooking classes, but this picture cracks me up. We intentionally buy appliances that are least likely to be broken by Teddy, things we can lock, knobs that won't break off or aren't easy to turn. We know they'll be broken eventually because Teddy's a destructive force of nature, but we always hope for a good long spell before repairs or replacements. In case you're wondering, our goal in life is just to keep Teddy alive. Hey, we've succeeded so far!

Counting Capabilities

The other night Teddy was impatiently waiting for supper (aka lying on the floor crying because he wanted to eat right that minute). We checked the pizza and set a timer for 4 more minutes. I asked Teddy if he could count to 4 and held up four fingers. He seemed interested, so I started counting. As I said 1, he touched my first finger. As I said 2, he moved to touch my second finger. He moved to the next finger for the number 3, and he finished by touching my last finger when I said 4. 

I was amazed that Teddy actually counted along. I know I didn't imagine it because our sitter witnessed it as well. He's demonstrated some interest when I've asked if he could count when we set timers, but this is the first time I've actually seen him count. I know that he can identify numbers 1 through 10, and this takes it a step further. 

These are the little things that might not even register for others, but it's a huge accomplishment for Teddy. That boy knows so much more than we give him credit for because we need to catch the moments he's actually willing to follow directions to show off his skills. Now, we'll have to see if we can repeat this as well as see how high he can count. 

Winter Adventures

Teddy gets the undivided attention of our sitters this week because AJ is at his grandparents' house for a week of e-learning, Beast rides and card games. Our sitters take advantage of these week to spend a bit more time outdoors because Teddy loves being outside. This week Bri took Teddy to Waukau Nature Preserve, which is where we went for our Christmas Eve stroll.

She realized when she got there, though, that there was no way she could push him on the snow-covered trails in his chair. She realized she had a sled in the vehicle because they had also been looking for sledding hills, so they traipsed into the woods using the sled. Teddy was super chill hanging out on the sled, which is slightly surprising because he often wants to take off exploring. I think perhaps the woods was enough of a distraction itself and there were no docks, open garage doors, etc. to distract him. 

I chuckled to see the sledding hill they found because it's a rather steep hill that curves and has plenty of obstacles on the sides. But they managed to safely navigate it several times and had a blast sledding in the woods and exploring there.

I'm not sure I'd have thought to take a sled for that hike, but it's definitely something I think we'll have to try this winter because they had so much fun! We're so grateful for our sitters who not only keep our kiddos safe but also give them such fun experiences. 

Facts About Teddy, According to AJ

Each year since kindergarten, AJ and I have presented to his class on CDG-PIGN. The first year, it was mostly my presentation, but each year the presentation has become more and more AJ with me on the periphery. He has been asking his teacher if he could share about Teddy's diagnosis for months, and he was so excited to present to his class today.

He tweaked his Google slides from last year, sharing a bit about Teddy, his diagnosis and his adapted equipment. Of course, there's also a slide about AJ because it's important to know about your presenter (ironically he changed that his favorite food is now tacos but didn't remove the photo of the ham that was his favorite food last year). He did a great job of walking through the slides and then answering questions from his teacher and classmates.

I was able to sit in his room (while Teddy was safely in his room reading books ... and yelling at me that I left him alone) to observe the presentation. I only chimed in at the end to answer a few questions, but AJ is so knowledgeable about Teddy's diagnosis and life with Teddy that he needs very little assistance.

As a mom, my favorite part of the presentation were AJ's facts about Teddy and his concluding thoughts:

• Teddy is the best brother in the world.
• I love my brother.

The Return of the Beast

It's winter in Wisconsin, which means the Beast made an appearance (hopefully the first of several for the season). If you've read this blog for a while, you've likely seen posts each winter detailing the fun we have with the Beast. This past weekend, we headed to our land for a day of playing in the snow.

The drive was absolutely beautiful due to the heavy frost from the fog that covered all the trees in a blanket of white. We arrived to discover the deathtrap of a deer stand was blown over from heavy winds (and quite a few shotgun shells), so that pleased Dave. It's on our list to get that down and cleaned up, so that we don't have an additional hazard to tempt Teddy. 

We discovered that our hill with the garage is perfect for sledding and tubing. The boys had so much fun playing with Ms. Bri, our nanny who came down to play for the day with us. AJ loved sledding with her while Teddy rode on his beloved Dorris (the tractor) with Grandpa. 

We raced down the driveway, making the most of the tubes.

My parents brought the Beast down for the day, so we all got turns riding on the Beast and trying to have snowball fights while driving and riding. It's tough to nail those on the Ranger with snowballs from behind, but we put forth a good effort. It's tough to say whether Teddy likes the Beast or the Ranger better, but I think he likes the option of both. 

It wasn't a sunny day, but it was fairly enjoyable in the 20s. We needed all the variety of layers to keep switching Teddy into dry layers ... seriously, changing a diaper through all the winter clothes is a pain in the tush! Next time, we'll make sure we build a fire sooner for s'mores and additional warmth (although Teddy isn't one to stay near a fire to warm up without getting into trouble). We still managed about 5 hours of fun before heading home. 

We're already looking forward to our next winter play day at the land. (And Dave is looking forward to his next opportunity to do some early season trout fishing!)