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. 

Teddy is Bilingual

We're actually hoping to have Teddy become trilingual as we reintroduce a communication device. We're waiting to work through the insurance or funding process for that, so it'll be a few months. In the meantime, though, Teddy is able to comprehend and speak in essentially two different languages.

Although he cannot communicate verbally, he understands spoken words. Whether he chooses to follow directions or requests is much less a matter of comprehension than his desire to do the task at hand. Most times, I'm certain he understands us and simply chooses not to do what we're asking. That's proven time and time again when he can follow directions and listen quite well when he's motivated. Just yesterday, in fact, he listened to my request that he go back and shut the door to the house before he took off down the driveway. I was quite impressed.

Teddy's main method of communicating, beyond physically directing you to do his bidding, is modified sign language. I say modified because his signs aren't clear to those who don't know him. They're a bit sloppy at best as he works on his fine motor skills, but he understands he needs to replicate some motion to make requests or communicate.

What I found really cool the other week was that Teddy understands at least some signs when they aren't verbally spoken. Most often, we speak and sign at the same time. However, the other night, Dave simply signed to Teddy to sit when Teddy was waiting at the counter to grab his dinner plate. Teddy immediately went to the table and sat down. It was noteworthy to me because it is clear that he understands both the sign and the spoken word that accompanies it. We can use either with him, or we can use both to reinforce ideas. 

It might seem like Teddy isn't as intelligent as others because he cannot express himself verbally. But when you take a minute to think about it, you'll realize how amazing it is that any person can understand spoken words, use sign language and/or use an adaptive communication device. That's far more language skills than the multitude of Americans who only speak a single language.

Non-Verbal Communication Misinterpreted

Today I took Teddy to music therapy for the first time since the pandemic. Pre-pandemic, I accompanied Teddy to music therapy each week, so I'm extremely familiar with it. We put services on hold through summer and resumed this fall to round out his therapy for his education this school year. His therapy sessions are smack in the middle of the work day, so our sitters have taken him each week. 

But our sitter was off today, so I took the day off to be mom because Teddy had physical therapy this morning, music therapy this afternoon and a meeting with his caseworker. As we drove to music therapy, I asked Teddy which building it was at because the program has expanded that therapy is now located in two buildings, one on either side of the road. He didn't point at the first building and was very excited when we parked at the second building. I was happy to see how excited he was to attend music therapy.

We waited until exactly 5 minutes before his appointment to minimize waiting room time and headed inside. I kid you not, Teddy was so excited he ran to the front door. We went into the waiting room, and he sat down nicely. I asked for his jacket and asked where I should hang it, and he pointed to the coat rack. He bounced around a few of the chairs, super excited to be at therapy. Then he was pointing to a therapy room, so I said, "Oh, that's where you do therapy?" He tried to go into his therapy room, but I told him we needed to wait for his therapist.

After several minutes, right when I expected his therapist, the lady sitting at the desk came to us and informed us that Teddy's therapy was across the street. (I'm guessing it took her a few minutes of texting Teddy's therapist to make sure she hadn't moved the location ... either that, or she was so entertained by Teddy's exuberance that she wanted to soak it up.) 

As we headed across the street, I asked Teddy why he didn't tell me. The little stinker was so excited because he thought we were going back to somewhere he hadn't been in a year, not the same ol' place he goes every week with Ms. Bri. 

Guess there's probably some merit in this new communication device that's supposed to arrive Monday ...

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. 

Without a Word

Teddy is non-verbal, meaning he doesn't talk yet. He might, someday, be able to communicate with some spoken words. For now his primary means of communication is gestures and clapping. Clapping is Teddy's way of saying "I want." When that's combined with pointing, it's amazing how that's a complete sentence that paints a pretty clear picture of what Teddy wants.

Of course, knowing Teddy helps in understanding what he wants. If you're not complying with his suggestions or requests, then he'll take your hand or physically direct your body where he wants you to go.

Last week we did a different run with my TEAM Triumph and a local running group combined to introduce others in the running group to the amazing organization that is MTT. There was a park nearby, and Teddy managed to convince one of the angels who's in high school to go play at the park with him before the run.

This photo was from spring, not when it's nearly 90 degrees. Andy is on the far right. 

After the run, Teddy wanted to make a beeline to the park to play again. I told him that he could, but he kept looking at me and clapping. I told him he could go by himself because I could see him and sprint if needed. But he came back toward me, so I put my hand out to go with him. He went right past me to another angel named Andy, clapping and pointing to the playground.

Andy was an incredible sport, going to the playground to play with Teddy. That meant going down different slides and climbing different things. Andy drew the line, though, when Teddy wanted him to go down the tunnel slide because Andy was afraid he'd get stuck and have to explain that to the fire department.

So they continued playing, and Teddy kept asking Andy to go down the tunnel slide. Eventually Teddy convinced Andy, not once, but twice, to go down the tunnel slide.

It's amazing what Teddy can communicate without saying a word. He was able to convince someone to change their mind without a single word. That's pretty incredible.

And, honestly, so is Andy for being such a great sport!

#runlikeangels #mttambassador

The Day Teddy Asked to Play Outside

When it snowed yesterday, AJ begged to play outside. I let him get bundled up to play on the deck while I retrieved Teddy from not napping (story of my life). At first when Teddy came downstairs, he was content playing with AJ through the glass door, each of them licking the glass on their respective sides. While they were occupied, I took some garbage to the garage.

Teddy immediately came to me as soon as I got back in the house. He grabbed my hand and led me to the glass door. Then he put my hand on the door handle and looked up at me.

Teddy asked me, clear as day, to go play outside with AJ. He did this without saying a word. He did this without crying to get what he wanted.

How could I not comply with his request? I bundled him up and sent him out to the deck, where he dragged around a snow shovel, licked somewhat clean snow, was dragged around on a snow shovel and licked the outside of the glass door.

Look at that nice squat!

Me, I stayed inside, smiling as my boys had fun playing outside together. But I have to wonder, how many other times has Teddy asked me something or told me something that I've completely missed?