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.

Just Imagine

Imagine, if you can, going through an entire day without being able to say a word. You can communicate anything you want, as long as you do it through staring at objects, physically directing others to do what is desired, clapping to show that you want something and pointing at objects.

How would you fare?

That's the thought that popped into my mind this weekend, and it's been lingering. I'd probably end up in tears within the first hour of the day. I'd likely give up attempting any communication, at least with certain people, once I'd exhausted their patience with me and my patience with them.

I can't imagine honestly making it a single day, even if I took out the challenge of a work day. Yet this is each and every day for Teddy. He handles what would drive me over the edge with remarkable grace, patience and forgiveness. Yes, those aren't often words I use with Teddy, but when I think of the challenges in expressing basic needs, much less wants, dreams and desires, he exhibits all those qualities.

At times, I lament how challenging it is for us as parents. Life is a constant game of charades, and we don't even know the category most of the time. But no matter the frustration we feel, Teddy by far has the shorter end of the stick.

The other week he was eating a grilled cheese sandwich and got up from the table and stood at the counter next to the fridge. I was about to redirect him to go sit down and finish his food when it suddenly clicked that he probably wanted another grilled cheese sandwich. So we showed him AJ's sandwich and asked if he wanted more. He clapped and pointed at the sandwich, which is a clear request. So we made him another grilled cheese and celebrated the victory of understanding his desire for seconds. I felt so proud of that minor victory, yet how many other moments have I completely missed?

It's amazing how much he can communicate with his limited means, and we'll continue to work with his talker and with sign language to expand his abilities. It takes time for others to get to know his methods, yet sometimes there's no doubt what Teddy wants you to do. Other things, like a second grilled cheese, require us to pay much closer attention to all the little clues. It's exhausting for all of us, yet exhilarating when we make progress in either communication or understanding.

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

"I Don't Think Teddy Will Ever Talk"

"I don't think Teddy will ever talk."

That sentence from AJ while I was doing dishes stopped me in my tracks. Fortunately, Dave was home as well to help steer the conversation. We've talked about Teddy needing more help and using his tablet to help him make choices, but this was the kick-in-the-gut conversation that AJ is understanding Teddy is significantly different than him.

The topic came up again today when AJ asked why Teddy doesn't have the Pizza Hut reading program. I explained that AJ didn't have that program either in 4K. AJ proceeded to say that he didn't think Teddy would have it next year. He followed up with saying that he thinks Teddy should be able to read words like "a" and "my" already.

I paused for a moment to gather my thoughts before explaining that even if Teddy could read those words, we wouldn't really know right now because we're still trying to find ways to understand Teddy better. I said that we know Teddy knows some words, like bus, because he looks for a bus whenever we say that word. I said, though, it's hard to know exactly what Teddy knows and understands. AJ's response to that was, "Right. Because you can't read his mind."

I agreed and said that I wished that I could, but there's a lot of things we're learning to understand when Teddy tells us in his own way.

These conversations are tough. I struggle to find the right things to tell AJ to help him understand and make sense of Teddy's abilities despite his differences. I know part of the reason I struggle is because I still long to hear the words "I love you" come from Teddy's mouth ... and I don't know that they ever will.

He says that phrase when he climbs into my lap at meals (and drives me nuts in the process). He says that phrase when he flaps his arms and jumps when he sees me walk into the house. He says that phrase when he snuggles into me. He says that when he covers my head with a blanket and then peeks his head underneath by mine. He says that phrase with his joyful smile.

But that doesn't stop me from wanting the words.

And that's just the wistful part of me. The practical part of me wants to know when Teddy's hurt or ill, what he wants, what he knows and what's going on in that mind of his. As I told AJ, Teddy knows a lot more than we realize.

These will be the first of many conversations with AJ as he develops a full understanding of Teddy and comes to terms with it. He's beyond thinking that Teddy doesn't do things because he's a baby and will continue to question why Teddy doesn't do things that other children his age do.

On the bright side, despite these tough conversations, AJ is already an empathetic child who is extremely helpful. (He's the only person who's ever flossed Teddy's teeth. Not even the dentist attempts that.) He will be already is a better person for having Teddy as his brother.

And lest this post seem disheartening, I need to end it by saying that my phrase this week has been abundantly blessed. Dave has been gone all week for work, and my mom, who often helps with the boys when we need help, is in Hawaii. Our sitter offered to help with bedtime all but one night. My aunt came up from Milwaukee for a visit, took AJ to swim class and spent one night with us. Dave's folks came down to stay with AJ while I took Teddy to swim class (and originally planned to come both nights for swim class). My friends came for dinner one night, and one brought AJ a coveted Hatchimal Collectible. Our village is here to help us raise our children. We are indeed abundantly blessed.

Denied

December was the last time Teddy had outpatient physical therapy approved by Medicaid, which is his secondary insurance coverage. January is when the denial for PT arrived, after a few weeks of processing. The first week in March is when the hearing happened, via telephone of course to prevent me from dramatically marching Teddy into the hearing to show everyone why it's obvious he needs both outpatient PT and PT in the school setting.

I do realize, of course, that my dramatic entrance entrance would have been followed by me spending the entire hearing wrestling Teddy, which wouldn't have been overly effective. Not that it matters because last week in mid-April is when the hearing decision upholding the denial arrived in our mailbox.

It took 4 months to go through the process to get told there's no way Medicaid will cover PT for Teddy through outpatient clinic while he's receiving it in the school setting ... but we could file a request for services now to see if Medicaid will cover PT during the summer since Teddy doesn't qualify for summer services through the school. (That's a whole other bucket o' slimy worms that I'm not going to dig into right now.)

Let me do the math. Mid-April plus 4 months equals mid-August. That's right when Teddy's about to go back to school where he'll be getting PT services again. And that means, they wouldn't cover services because it would be duplicate services.

What are the odds that Medicaid grants the request right away for summer? How much will my PT hate me if I make her go through all the paperwork and process all over again? Why do we have to wait so long to get an answer on therapy ... and why do we have to request services every 3 months or so? How on earth does OT get approved right away for Teddy (not that I'm complaining!)?

So for now, we say to heck with Medicaid. We're trying to work with our clinic to run his therapy services for PT through only our primary insurance, which theoretically will work to get Teddy the therapy that benefits him.

And we're hoping it works for speech, too, because we just received that denial. I'm not sure I have the wherewithal to go through that appeal process, only to have it denied with the exact same language as the PT hearing decision I have in my hands.

Tell Me What You Want, What You Really Really Want

Now that I've inserted the Spice Girls into your mental soundtrack with my subject line, I can talk about Teddy and speech therapy.

Teddy's been receiving speech therapy for three years, with intermittent breaks while we wait 2 months for insurance approval. (This is after we had to appeal to even receive speech therapy because our insurance initially denied the service for Teddy.) We see a wonderful person named Ms. Caitlyn, whom AJ, Teddy and I all adore.

At Teddy's appointment last week, she had a bucket of testing toys out to assess Teddy at his appointment last week because it's that time again to submit to the insurance gods for approval. (They aren't gods. They just think they are.) I'm not a big fan of the testing toys because it's so hard to convince Teddy to do what he's supposed to do on command, even if he understands the request. Teddy's not a fan either because every other toy in Ms. Caitlyn's room is far more exciting than the testing toys, especially the ones AJ is noisily playing with at any given moment.

Still, we all survived the testing, and I was surprised that Teddy received credit for demonstrating knowledge of a specific item 4 times (essentially picking the picture out of the group of pictures). He even touched the correct item the first time and then used eye contact. Now, how much of that is luck and how much is actual recognition might be a bit debatable ... but his actions seemed intentional and, by golly, he got the credit for the testing score.

Teddy scored at 1 year 9 months for his receptive communication, which is how much he comprehends of what is communicated to him. He scored at 1 year 3 months for his expressive communication, which is how much he can communicate. Now, I get that Teddy has a whopping 3.5 years of life experience under his belt, but I was pleasantly surprised with his scores. When Teddy was first assessed for speech therapy, he scored at less than 1 month. That means he's made tremendous progress in the past three years, and I'm confident he'll continue to learn more and different ways to understand his world and communicate his wants and needs.

These test results certainly don't define who Teddy is, but they do make me wonder, along with his recent request to play outside, how much Teddy tells me that I just don't catch because I'm not paying enough attention to his subtle requests.

Thanks in part to Teddy's awesome progress, and in part to Teddy's awesome speech therapist who always has something encouraging to say to Teddy (and me), I'm optimistic for all the times when Teddy will tell me what he wants, what he really really wants.

Struggles of Speech

Teddy's the strong silent type. As in, he's rarely vocal. (And he's extremely strong for such a child with hypotonia. That kid has grip strength.) Teddy first babbled right around Easter with bababa and mamama. Since then, he's been hit or miss with his babbling. We struggle to understand his communication, and it's been a slow process.

We've been approved for speech therapy since Teddy was about 18 months. Speech has always been the last therapy to get approved. It was the first to be denied. It was the first denial to be appealed. And it was the first appeal to be won.

When Teddy got BadgerCare, Wisconsin's Medicaid program, approval for therapy got more complicated. Now both our primary insurance and secondary Medicaid must approve the therapy. Teddy gets the lesser amount of therapy approved. If primary approves 5 visits and Medicaid approves 3, Teddy gets 3 visits.

Apparently, Teddy starting school makes things even more complicated. He gets OT, PT and speech therapy in school, but I was told he could continue to receive outpatient therapy as long as he is working toward different goals in both settings. That seemed simple enough considering there's plenty of opportunity for Teddy to learn and develop, right? Apparently not because that gives insurance yet another reason to question and possibly deny his therapy.

Teddy's last speech visit was September 16 when his authorization expired. His therapist had everything set to go and submitted right away. Now, nearly two months later, he's approved for speech therapy. He gets a whopping 3 visits between now and mid-February.

Yes, after 2 months of waiting, he gets to see his speech therapist three times in three months. Then we'll go through this whole process all over again.

I'm not sure the point of this post other than to express my frustration with the medical system. Taking Teddy to multiple therapy sessions is not one of my hobbies, believe it or not. However, I recognize his therapists are educated professionals who are experts in their respective areas, and I am not. They have different ideas, techniques and approaches. Their assistance has helped Teddy make tremendous progress.

Good thing both OT and PT authorizations expire this month. I mean, who really wants to be approved for therapy during the holiday months?