Clocking Twenty-Fours

Clocking twenty-fours. It's a term I have heard prisoners use in reference to what it's like being locked up. They survive the stresses of prison by focusing on enduring 24 hours at a time. Our home isn't a prison, but there are days where we endure the stresses of this disorder by focusing on clocking twenty-fours.

This has been a week of head banging, smacking, whaling, stomping, and diaper dust at our home. Perhaps it has been the weather. The barometric pressure changes that come with rain typically cause Josiah a tremendous amount of distress. Or perhaps it was the full moon. Ask any special needs parent, there is a LONG history of the full moon making life unbearable for our kids. We checked his ears. They seem fine. I don't think it's his teeth, but its super hard to get a good look in there without risking the loss of a finger or two. Perhaps its a GERD flair up again, but he isn't showing the typical signs if it is that. We guess and we guess. I go to sleep thinking about it. I dream about it. I wake up thinking about it. Jeremy and I have conversation after conversation trying to brain storm and figure out what is causing our boy to be so miserable. 

A joyful moment on the golf cart with Meemaw

From the moment he wakes, distress. He stomps out his frustrations again and again. And, when one footed stomping doesn't work, he starts to jump high into the air with both knees locked and heels pounding into the floor as he lands. Shaking the entire house. Over and over. He wants to ride in the van. After all, its become his sanctuary especially at times like these. We would be riding non-stop if it weren't for the golf cart, therapy room, and therapy pool. We are thankful for the brief moments of joy these things have brought him this week. But they have been brief. The upset always returns. There are some weeks where we just can't figure out what is going wrong.

Riding in the van doesn't always work. Sometimes his torment is too great for this to even help. I got a call early this week from our support staff worker. She had Josiah at Wendy's trying to get him some french fries before taking him on a ride. He began to have a violent meltdown that involved him kicking the windshield and breaking it. I rushed to Wendy's to pick him up. Thankfully no one was seriously hurt.

Diaper Dust all over the bed

Josiah has taken out much of his frustration on his diapers this week. He likes to pull the outside ruffle off of his diaper to use as a form of self stimulation. He twirls it in front of his face, taps it on the edge of his chin, and sucks on the end. This week, he hasn't been content to just rip the edging off. With one hand, he reaches between his legs and grabs hold of the diaper. He rips the outer shell off the diaper in one dramatic move that sends a cloud of powdery diaper dust flying everywhere. When dry, the contents are a nuisance. When wet, they are like dumping large handfuls of urine soaked cotton that has the smell of pee and the feel of slippery glycerin. Gross to say the least. We have opted to let Josiah roam nude for short segments of time in an attempt to conserve diapers. 

Our boy is bruised all over. Not the worst its ever been. But more bruising than we want to see. We have enacted our emergency protocols for the next 12 days. We will have two on one staffing for Josiah for several hours each day, and we have emergency meds that we can administer when things get very bad. We have used the medicine twice this week. It gives Josiah about three hours of calm, but, when it wears off, Josiah is left weepy and distressed. We try not to use it often for this reason. 

Hilltops and Valleys. We all experience them both. Our hilltop moments may not look like yours. Neither may our valleys. But one thing is the same. Both are designed by our loving, all knowing, all powerful, gracious, and merciful Heavenly Father for our eternal good and for His supreme glory.

Please continue to pray for our boy. Thank you to the many who care for and support Josiah!

Because of His grace, 

Christy

*We are still needing to raise $500 to place the order for our padding. The drainage issues proved to be more in depth than initially thought. If you would like to help, you can give by following this link: http://www.beaconbaptist.com/donate/ . Thank you to everyone who has given so generously thus far! We are forever grateful, and you have made such a tangible difference in all of our lives.   

Drainage Issues Be Gone

It wasn't my plan to have another two weeks between posts, but last Friday our internet went down. We got it fixed the next day, but things have been so busy around here since then that I am just now finding the time to sit down and update everyone. 

Quality Landscapes started addressing our drainage issues this past Friday, and they finished everything on Wednesday. They did a wonderful job, and we are so exceptionally thankful that our drainage issues are a thing of the past! I'm sharing several pictures below so that you can see some of extensive work that was done. The AquaShield, that will go over the pool for year round swimming, can be installed in the next few weeks once the sod has had an opportunity to take root.

I mentioned this week on Facebook that Josiah has been struggling the past couple of weeks. It's so hard to know for sure what has been going on, but he has been in flux. He flits from one activity to another stomping to convey his frustration. He wants to ride in the van all the time. BUT, because we now have the golf cart, therapy pool, and therapy room, we have several activities that we can redirect him to. In the past, we would have been riding non stop. Now we are able to stretch out the time in between rides a lot longer. The therapy room has proven to be exceptionally helpful during meltdowns. We are able to bring him into the silent room and keep him a lot safer until he is able to calm. Today, he seems to be showing signs of improvement. Lots of smiles!

The final piece of our project is to order and install the padding in the therapy room. We had all the funds needed for this, but the drainage issues have depleted that amount some. I am waiting for the final invoices, but I think we need about $500 to fully fund the padding. Our church has graciously agreed to keep the Josiah Verroi Fund open for donations to help with his care. If you would like to donate to help us get the funds needed for the padding, you can do so by clicking this link:  http://www.beaconbaptist.com/donate/. Josiah came close to putting his head through one of the therapy room walls last week. Thankfully he wasn't injured and the wall just sustained a circular dint from the back of his head. It was a good reminder to us of how greatly this padding is needed. Thank you to everyone who has given to help us do this! 

Jeremy and I will celebrate our 17th wedding anniversary tomorrow. I have thought a lot about the past 17 years. I am so thankful that God graciously brought the two of us together. We would both tell you that we were made for each other. There isn't a day that goes by where we are not reminded of how God has used our individual strengths and weaknesses to compliment each other perfectly. Our relationship is grounded in our trust in Jesus. And it is that solid foundation that has kept us together all these years and through every trail we have faced together. I can't imagine "doing" life with anyone else. 

Our Heavenly Father has been so very merciful to us! 

Because of His grace,
Christy