The Train to Normal

“This train is headed to normal whether you like it or not, bud. You gotta decide what you are going to do about that.” This was the conversation I had with Tyler a couple weeks ago. In the time since my last post, much has changed for Tyler. We are still in a fight, but as our psychiatrist explained, Tyler has passed through the critical, acute phase of his disease, PANDAS. Now it’s a matter of learning the new territory of parenting a recovering child who has psychological disorders caused by the disease.

Several amazing things have happened with Tyler in the last six weeks or so:

• He can talk! We may never know if it was meds or disease or both that caused his loss of speech, but it is back. I never appreciated how lovely the words “Can I play my video game?” are until our child lost the ability to say anything for two months. Every word is precious.
• Tyler is now off every psychotropic medication (that was an interesting and dramatic story that I’ll mention a little later in this post). He is currently only taking his antibiotic and two antihistamines to help calm him. His face seems clearer, his countenance is brighter, and we can see Tyler coming back.
• Tyler’s tics are greatly reduced. He will often go hours without a single shout. That said, any stressful situation brings them back. Transitions (people coming or going from the house, moving from one room to the other, changing activities, etc.) always come with an uncontrollable yell or two. If he is upset and doesn’t want to do something he needs to do, you can count on shouting accompanying that situation, sometimes dramatically.
• His condition has improved to a point that Tyler will be able to go to school when it starts next week. It will be a challenge, and I’ve had multiple conversations with the school counselors, teachers, and administrators so everyone is prepared. Back in April when everything spun out of control, when people asked what they could pray for, my common response was, “Pray that he can go to fifth grade when it starts next year.” It seemed like an utter impossibility back then. We truly have experienced a miracle.
• Today was a huge a day for us. First was meet the teacher day at school—the first time he was surrounded by a crowd of his classmates and teachers. I counted only seven shouts the entire time. Even though he didn't want to be there, he stayed with the family in the gym through the whole hour. Then we had our first real family outing since Tyler's decline. It was at Dave and Busters arcade. It was a noisy, crowded environment, and he actually played games with us and didn't have a single tic. Finally, we attended a church picnic. He stayed off to the side the whole time without joining the group, but he did spend some time talking with a friend, and several other adults who loved him took a few moments each to go talk with him. He never experienced tics during those nearly three hours. It may be a while before he's ready to interact socially the way he used to, but at least he was willing to come and talk with those who approached him.

That said, we are still faced with daunting challenges. Tyler’s personality has changed. Tyler can be very petulant, defiant, and down-right mean, especially to his dad. But he can also be kind, considerate, and patient. We just aren’t used to the other. The anxiety and aggression are very typical of kids like Tyler who have a severe case PANDAS. The disease caused it, but Tyler has to be the one to master it. So now we find our selves in a gray area: the disease has messed with his brain chemistry causing Tyler to not be Tyler, but that led to a psychological/behavioral disorder that Tyler is going to have to learn to control. It’s quite a conundrum. He has an enormous challenge ahead of him: remember and discover anew who God is and who He made him to be, and learn to be stronger than the disease. A daunting task for anyone, especially a child.

Last month, Brian and I had the opportunity to travel to California to attend the Vineyard National Conference as part of the team of people planting the new Crestwood Vineyard church here in OKC. Of course, we were concerned about leaving Tyler, but when we raised our concerns to Dr. Stanbro, he actually insisted we go and wrote a prescription out stating that it was medically necessary for Tyler that we get a break. So, we left the six kids in the capable hands of grandparents. Then all hell broke loose. Tyler refused to take his meds (which is why he is now off all the psychotropic meds, albeit inadvertently), he was a danger to himself, and he even attempted to run away. The time at which he ran away coincided with the meeting time of a prayer group consisting of many of our friends called Bright Arrows. They have been diligently praying for Tyler from the very beginning of this ordeal. When I got the phone call that Tyler had run away, Brian reminded me that it was Bright Arrow’s monthly meeting night, and they happened to be meeting that night in our own neighborhood! (This reminds me of the confident comment God has said to me many times over the last few months when I’m worried about Tyler: “I got this!”) I called one of the guys at Bright Arrows, and they immediately moved to action. It took three grown men (thank you Jeff, Brian, and Greg) to find him, tackle him down, and drag him, fighting, to the house. Then my dad and our friend Jim came to install locks on all the doors and windows to prevent any further escapes. (Thanks also to Connie for all your help during that week.)

When we came home and met with the psychiatrist, he recommended we read a book I never thought would be in the Blount home: Your Defiant Child. So now we are becoming experts in dealing with defiance. However, we feel like we are getting a handle on it. We’ve had to make some hard stands of our own with Tyler (for example, you must take your meds, you will go to school, and you cannot speak cruelly to your dad or anyone else). One time, this literally involved an all-night standoff when we didn’t shut our eyes till the morning sun shone bright because he refused to take his bedtime medicines. Every time we’ve decided to be more stubborn than Tyler, his determination to win at any cost has lost ground. I wouldn’t say he’s compliant now (would we really want that anyway?), but I would say he is showing less and less defiance.

On the other hand, we are also seeing the Tyler we remember coming back to us as well. Last week, we started watching a movie and I couldn’t enjoy it because Tyler was asking me a million questions. “What would happen if . . .” and “Wouldn’t it be cool if . . .” and “What do you think . . .” started driving me crazy for the first time since March. I was so happy to repeat the refrain I said so often before his illness: “Tyler, no more questions! I can’t handle talking anymore!” His imagination is back in full force once again. Maybe one day he’ll remember his aspiration to be an inventor. He has the intelligence and curiosity for it. He just needs to remember who he is.

Tyler has PANDAS. It messed with his brain. Even if his brain chemistry hadn’t been affected, he’s been through a traumatic experience. His view of reality has been distorted, and his sheltered life has been destroyed. He is mad at God, his dad, and everyone. He has started believing many unhealthy lies about who God is, who he is, and what to hope for in life. That is the most heart-breaking aspect of Tyler’s condition now. But, we hold on to our knowledge and experience that lies are just lies. As quickly as they can form, God can crush them with his extravagant love.

So that is where we stand with Tyler now. Here are some prayer points:

• Please pray that Tyler would continue to experience full healing from PANDAS. His physical recovery is going incredibly well, but there is still a way to go. Tics, anxiety, and OCD are still problems. On the OCD side of things, he still refuses any food except PediaSure, and he constantly picks at the skin on his hands, feet, and lips. Furthermore, unless the Lord heals him from the disease, he will always be at risk of his symptoms returning worse every time he is exposed to strep.
• Please pray for his ability to cope with school. Social anxiety is a problem for Tyler, and we are particularly concerned about recess, PE, and lunchtime—the least structured and most socially interactive aspects of the school day. The school is making arrangements for him to be able to go to the counselor’s office or nurse’s office when he experiences extreme anxiety or his tics are out of control.
• Please pray for his academic performance at school as well. He missed nearly half of fourth grade, and he was literally incapable of everything, including speech, for several of the last five months. He will be behind. Also, typical of kids with PANDAS, his handwriting his nearly illegible. We will probably have to figure out what accommodations will be helpful for Tyler as we go. This is new territory for all of us.
• Pray for the relationship between Tyler and Brian. For whatever reason, most of Tyler's aggression is directed toward Brian. He still tells Brian he doesn't like him and he hates him. This is coming from a boy who adored his daddy more than anyone else on the planet. We know these feelings stem from lies from the enemy, but Tyler feels them so strongly. 
• Most of all, pray that the God of all peace will invade Tyler’s heart—that Truth would ravage the destruction caused by the enemy’s exploitation of Tyler’s mind during the vulnerability of brain disease.

On a final note, I’d like to apologize for not writing another update sooner. The last several months have represented a pain unlike anything I have ever personally experienced in my life. When I started realizing the publicity my blog was getting from friends and strangers alike, the vulnerability of such exposure and potential criticism was uncomfortable, to put it mildly. I had to wrestle with a fundamental question that encompassed much more than Tyler’s struggle with PANDAS: am I willing to live my life exposed for all the world to see? They will see the good, the bad, and the ugly, but they will also see Christ in me. Is the payoff of representing Christ and His glory worth the pain of exposure? It took me a while, but I’ve decided the answer to that question is yes. It’s worth it.

Even when Tyler was desperately ill, we never lost sight of the goodness of God. Even when Tyler’s body was ravaged with a disease that left him thrashing and flailing dangerously from waking moment to the relief of exhausted sleep, we kept praying for the sick, we pursued a dream God put in our hearts to see a Vineyard church planted here in OKC, and I even managed to ghost write a book on God’s voice. Brian continued to pray for the sick, whether it was through planned outreaches or, most often, as he goes about his day. He is always experimenting with new ways to reach more people with God's love. His latest adventure is "Hotdogs and Healings" where he takes a team of people to apartment complexes to serve free food and pray for any needs. As a result, they have seen dozens of people healed just in the last few weeks. My point is this: we will never escape tension. Yes, Jesus heals, and yes, my son suffers from PANDAS. Yes, God’s kingdom has come in power, and yes, his kingdom has yet to come. So, we say yes to all the yesses. Yes to God’s miraculous healing of hurting strangers on the streets of OKC, and yes to God’s grace as we walk out Tyler’s healing day by painful day.

Yes to God often also means yes to mess. It's not easy to live in messy tension. Sometimes it downright sucks. But a "yes" to God's mess is so much more rewarding than a "no" to protect my self-image or cover my pain. So now, we hop on this train to normal. And in the meantime. . . let’s get messy!