Progress

It’s taken three weeks, but we have almost completed Tyler’s bedroom and Brian’s office next to it. We finally got the AC unit installed yesterday, so after we finish some details, Tyler will be able to move into his rage-proof room today! He can kick and scream and bang and throw to his heart’s content without us having to worry he will hurt himself or anyone else, especially Brian.

But that’s not the only progress happening around here. We are incredibly reluctant to say that Tyler’s condition is improving, because just when we say that to each other, something dramatic happens with Tyler that let’s us know things are most certainly not improving. However . . . knock on wood . . . I think, maybe, possibly, hopefully we are actually starting to see some indicators of improvement in Tyler’s condition.

It’s been six weeks since his hospitalization when he had the IVIG treatment. Five weeks since he started his high dose antibiotics. Three and a half weeks since we started weaning the psychotropic meds (one is done, another almost done, and one more yet to start weaning). And I know there are hundreds of people praying regularly for Tyler’s healing. Somewhere in the mix of all those factors, Tyler is slowly turning a corner.

Let me say off the bat that we still have a very long road ahead of us. The improvements we are observing are very significant baby steps in a marathon yet to traverse. We are grateful for every glimpse of hope, but we also have to be realistic about the challenges we still have yet to face.

In the last week, we have seen bits and pieces of the Tyler we know coming back. Here are some highlights from this week:

•  During one of Tyler’s outbursts of anger, rage, and attack, he managed to accidentally hurt his fingers by getting them slammed in a door. The injury put an abrupt end to the rage and quickly turned to tears of pain. When I re-entered in the bedroom after running downstairs for ice, I was stunned to see Tyler sitting in Brian’s lap. Brian was stroking his hair, speaking comforting words, and praying for him. Tyler was actually letting Brian touch him! I was sad he was hurt, but at the same time couldn’t hold back my excitement as he sat there with his dad for about fifteen minutes before he laid down to go to sleep. Touch!
•  Tyler asked to have his best friend, Levi, come for a visit, whom he hadn’t seen since May. When Levi came over, he showed Levi his new iPod. We bought it for him about a month ago, but he would get so angry about any imagined flaw or someone else touching it that he hasn’t wanted anything to do with it. When Levi came over, they sat together (with very little yelling going on) and played on it. They also played Tyler’s 3DS game, something Tyler used to spend hours on before he was sick. It was the first time Tyler showed interest in any activities he had enjoyed before his sickness. Since Levi’s visit, he’s been playing video games everyday. I used to get on to him for playing his games too much, but now I’m so happy to see him doing it I’ll let him spend as long as he wants!
•  He also asked if he could go places outside our home this week. He wanted to go to the video store to rent some games, which we did, and he also asked if we could make plans to visit his friends Levi and Eythan at their homes.
• He pulled out his Buzz Lightyear and Woody toys yesterday for the first time since March. They have always been favorites, and their reappearance made me smile. He also sat almost completely quiet through several television shows or movies this week.
• He showed empathy for the first time. When his brothers and sisters managed to catch four frogs one evening, Tyler started writing on his iPod “Let frogs go.” He was afraid they would die in our makeshift cages. He got really upset when one of the frogs did die. Tyler was such a loving boy before; it’s nice to see pieces of this side of his personality returning.
• Thursday, I was at the library trying to get some work done when something very interesting happened. Tyler has been so filled with rage that he has regularly been attacking Brian, sometimes really hurting him. These outbursts often last an hour or longer. While I was at the library, Tyler charged at Brian, and Brian happened to have a water bottle in his hand. Brian threw some water at Tyler, hoping to stop him from the hitting, kicking, and biting. It jarred Tyler, making him even angrier, but it also redirected his attention from the attack. I was unaware that any of this had happened when I got a phone call from home. I answered and heard unintelligible yelling. I knew it was Tyler, and I could tell he was mad. I eventually learned the whole story from bits and pieces gathered from my mom and Brian when I told Tyler to pass the phone to them. But I was amazed! Tyler got into a rage, backed off when he didn’t like getting wet, then he tried a new approach. He picked up a phone, and called my number to tell on his daddy. I know Tyler wanted me to take his side and tell Brian not to throw water on him anymore, but I couldn’t get over the fact that Tyler had just called my phone number! Unbelievable!
• He actually teased Brian once this week. After a couple more of these water-bottle encounters (the only effective method we’ve found of diffusing Tyler’s rages), Tyler started realizing he was losing the battle to continue to use his dad as a punching bag. Then Friday he charged Brian as usual, fists in a fury. But when Brian reached for his water bottle, Tyler pulled out one of his own. And then he let out a mischievous smirk. That little stinker planned his own counter-attack and he was enjoying toying with his dad. He really was in a rage, but he anticipated Brian’s defense strategy and made a counter-move. It shows problem solving, strategizing, and even a form of playfulness we haven’t seen. Of course, the episode ended in lots of anger, yelling, and tears, but it was still encouraging.
• I wish I could have captured the moment yesterday when he saw the new television an aunt and uncle bought for his new bedroom. He was wide eyed, and he smiled! A big smile! Then he spread out his hands wide to tell us what he couldn’t say with his words—yes, it’s a huge TV. The miracle wasn’t that he liked the TV. It was that he even cared. I’m convinced that if he had received this gift two or three weeks ago, he would have given it a look and walked away. He’s started to get excited about things again, even for just a moment. While a few months ago I would have taken for granted that a kid would be elated at such a gift, we don’t take these small delights lightly anymore. Every smile counts in our house. Each one means something to us.

I’d also like to take a moment to say how much we love Dr. Stanbro. Not only is he very skilled in treating PANDAS, but he’s also intrigued by Tyler, and we can tell Tyler fascinates him. This week in his office, Tyler got mad like usual, and by the end Tyler was yelling to Dr. Stanbro that he hated him and that he’s a liar. Tyler’s speech is still hard to understand, but these are frequent phrases for Tyler, so I knew what he was saying. Tyler has become an equal-opportunity hater and lie detector these days, and we just have to laugh about it. (By the way, Mrs. Hubbard, if you are reading this, during this office visit you were also called a liar as well. When Dr. Stanbro mentioned that he’s heard great things about what a smart kid Tyler is, he said we are all liars and he hates us all. Even Mrs. Hubbard lied when she said he’s good at math. You’ve been lumped into the liar category with all the rest of us. J)

So, yes, we are seeing improvements, but there’s still much ground yet to cover. Tyler still cannot speak, though his attempts at speech are becoming slightly easier to decipher. (Either that, or we are just getting much better at understanding his unintelligible speech through lots of practice.) When he tries to write out what he is trying to say on his iPod, the handwriting is very hard to read, so communication is a constant struggle. He still has bouts of anger, frustration, and rage. He often bangs his hands on the ground so much he starts complaining that his hands hurt. He is withdrawn and does not often interact with other family members unless he is trying to tell us something he needs or wants. We still don’t touch him because that bothers him. He continues to refuse any food, though he downs PediaSure and PediaLyte drinks like they are going out of style.

We also believe that Tyler’s rages at Brian are indicators of a panic attack, and we are starting to learn how to manage them. Often throughout the rage episode, he will say “I can’t breathe” over and over, and there’s a clear look of panic in his eyes. When we started using the "I’ll pour water on your head if you hit me" technique, he would just lay wet on the floor in a panic trying to tell us he couldn’t breathe. So we are learning how to help Tyler through his anxiety, to redirect his rage in different ways, and also keep him from hurting Brian. After we manage to halt the rage, we are sometimes able to talk him through the panicky feelings. The challenge is getting past the rage to be able to address the anxiety that fuels it. We’ve tried the water, and we’ve also tried ignoring him. Friday night at dinner, we were all eating at the table when Tyler came over to Brian and started hitting him on the head repeatedly. I went to retrieve the baseball helmet that we had originally purchased for Tyler to prevent him from hurting himself. Brian put it on his own head, and Tyler kept hitting him on the helmet while the rest of us continued talking about mundane things around the dinner table as if nothing unusual was going on. Eventually, Tyler got tired of hitting the helmet over and over while we ignored him, and he walked off to be alone. 

The biggest indicator of self-control came yesterday. When Tyler got his new television, we also knew he really wanted an Xbox game console as well. We told Tyler that if he could go seven days in a row without attacking his dad, we would buy him the Xbox. After he got his Xbox, if he ever attacked his dad, the controllers would be taken away for a day. He communicated to us that seemed like an impossible task, but he really wants an Xbox. We successfully completed day one of no attacks! Woo hoo!

What a roller-coaster we are on! This is a ride we never could have imagined, but God has been so good and faithful to us through it all. Please continue to pray for us all. Tyler has much healing yet to go, and all of us feel the strain of Tyler’s illness in different ways.

For those of you who experience anxiety and panic, I’d like to pray for you now. Jesus, healing king, come and touch these people who also suffer from anxiety. Let your presence come fill their bodies now. I speak healing and wellness to every incorrect chemical process, every disordered habit of thought, and every lying emotion that makes anything seem bigger than God. Let your peace come, and let them taste of your goodness in new ways today. Amen!