Hives and Being Heard

When Teddy had his skin biopsy done earlier this week, we noticed he was a bit off earlier in the day. As Teddy is non-verbal and has a high pain tolerance, it's tough to know exactly what is going on and whether little things like being more mopey in the morning are a sign of something wrong or just a poor night of sleep. We took his temperature, which was normal, and continued on with our day. He seemed to be acting fairly normal throughout the morning, and then we had his skin biopsy.

As I mentioned, he fought less than I expected. Normally he hates anything medical. He did resist laying down and had to be held (by 3 of us), but he almost immediately stopped fighting. That might be typical for most kids once the numbing injection sets in, but Teddy hates being held in place. It was really odd that he didn't resist the entire time, but I was grateful for how well it went.

But as soon as we got home, his behavior continued to be off. He came up to me multiple times to snuggle or to hug me and be held. Now, Teddy likes close contact and physically touching people, but that's more to direct us where to be not to get snuggles and loving. 

Then I had to hop on a meeting for work, and Teddy left me alone the entire time. That's when I decided we needed to visit the walk-in clinic to get him checked out. Primary symptoms: extra snuggles, not resisting a skin biopsy as much as expected and not getting into everything ... really great to explain to a doctor, right?

But while I was in my meeting, he started breaking out in hives. So we headed right to the walk-in clinic. I walked through everything with the front desk and the nurse. As I explained things to the doctor, he said that it's really hard to determine the cause of hives. He was focused on the skin biopsy and a possible reaction to the numbing medication, and he seemed more ready to just treat the hives than look for any underlying cause we could find. He did check Teddy's lungs (as Teddy always sounds wheezy.) When I asked him to look him over and check his ears for example, his response was that he didn't know what he'd see in the ears that would cause hives, but he did check anyways. 

This was early on, and it still looked wicked.

It's honestly the first time in a long time that I haven't felt heard when I brought Teddy in for concerns. He didn't even check his throat, mouth or nose for any signs of illness. While I realize hives are nearly impossible to diagnose the root cause of without allergy testing (and that's still not a certainty), it's also impossible to know if Teddy had a fever that was masked by the medication following his biopsy ... or a sore throat ... or a headache.

So we got sent home with steroids, and Teddy continued to worsen. The hives spread over his entire body until he no longer had splotches and dots but instead his entire body was red and hot to the touch. He rolled around trying to find relief from the itching or pain. He scratched himself. He was miserable. 

We got a second dose of steroids in him, and he finally settled onto Dave and fell asleep in misery for a nap. Then he woke up from that and promptly puked all over Dave. 

Let's just say it was a really long afternoon and evening. Thankfully he was feeling a bit better in the morning and was no longer a giant hive although he was still itchy. Our best guess is it was some virus that caused viral hives, which he's had once before.

I certainly hope he doesn't have these again anytime soon.

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. 

Crazy in Love

That's either a song title or a movie, isn't it? It's also how I feel about Teddy. Some days he drives me crazy, and other moments I'm crazy in love with him. Just tonight, he was riding with Dave to mow the lawn, and I was push mowing at the same time. He looked at me and grinned with his mega-watt smile, and I couldn't help but smile and appreciate the moment.

Now, I realize he was grinning at the lawn mower, not me. He loves lawn mowers. But I still got to see that gigantic smile and appreciate his joy for life. That boy lives life to the fullest and lives in the moment. The good things are oh so good and rewarded with giggles, laughter and smiles that make you smile. Someone recently commented that his dimples are so big that they're visible even when he's not smiling. If he makes it to old age, he will have the best smile lines because he does that so often.

Of course, when he's upset, you know it. He feels everything in the moment and lives in that moment. There's no reasoning about the fact that supper is almost ready if he's melted onto the floor miserable because he wants to eat now. In that circumstance, the best thing to do is lay right next to him on the floor and snuggle into him. When you make that effort to connect with him, he usually can peel himself off the floor and out of that moment. 

We've often said how much we wish we could know what goes on in his mind at any given moment. Teddy's great at communicating what he wants, but his actual thought processes are entirely a mystery. Just yesterday, I watched him place his notebook and pen high on a shelf that he normally doesn't set stuff on and then run into the other room. I have no idea what prompted those actions and often wonder about the little things like that.

No wondering here. He is mesmerized by the tractor.

This has been quite the rambling post, but it's been a long day and a long week (mostly at work, not so much at home). I'm grateful for the times Teddy takes away the stress of other things by helping me live in the moment. It's only fair that he does that since he so often is the source of stress for us. 

Happy St. Patrick's Day!

 AJ has spent the last couple weeks plotting, designing and building leprechaun traps. During the process, he mentioned something about leprechauns talking. I joked to him that perhaps Teddy is indeed a leprechaun. Rather than being non-verbal, perhaps Teddy talks in such a high pitch frequency that we can't hear him and only other leprechauns can. AJ obviously dismissed my theory because he's not easily fooled.

AJ set a total of 7 traps, most of which were sprung by Lucky, the leprechaun who visited our house. Unfortunately, AJ wasn't able to capture a leprechaun and had to settle for cookies and donuts left by the leprechaun instead of his pot of gold and unlimited wishes. 

Lucky the leprechaun left behind some treats. 

And perhaps the greatest gift from the leprechaun? He must have sprinkled Teddy with sleeping powder because Teddy slept until nearly 7:30 this morning, which is about 1.5 to 2 hours longer than normal. Can every day be St. Patty's Day?

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.