Dear friends and blog family,
I am forever apologizing for my slack existence as a blogger. And yet, here I am once again. All I’ve got to give is a giant “Sorry y’all!” You have no idea how many hundreds of scribbled notes I have. Jotted down in various places and instances that then sit on my desk…..waiting for quiet moments to develop them. Moments that seem to never come or are overtaken by too many other things on the to- do list. I’m here now! I love you all! Thank you for being here! Onward I press……
Since the month of June, we have begun seeing a progressive and significant change in our sweet Cannon. At first, we attributed it to the monsoon season we have here in Arizona and its subsequent atmospheric pressure changes. These can really mess with Cannon and other kiddos with sensory issues. But as time passed and these episodes got worse…..we realized this theory wasn’t quite accurate. We also wondered if his Autism combined with pre-puberty and the language capabilities of a child less than half his age could be the culprit. But again, we feel this isn’t the whole story. The change we were seeing is one where “mere” meltdowns have taken a turn…..and become downright rages. One where our loving, kind, snuggle buddy has been disappearing for longer and longer chunks of time. In his place, an emergence of one with tremendous anger, insatiable rage, and intentional harming of himself. Slamming his head into walls repeatedly, biting his hands and knees, and picking at his skin incessantly until he bleeds are commonplace. Kicking, spitting, grinding his teeth, and screaming angrily pressed into our faces are almost always actions that are present. His defiance and backtalk have become reflex-like. His appetite for an argument and level of confrontational-ism are through the roof. His anxiety is worse than ever. That darn fear of water on the ground has been holding strong for years now and is being joined by others. Fear that I will give things away, that we aren’t going places I tell him we are, and that certain activities will no longer be options for him…. These thoughts haunt him. He asks 20-30 times in a row the same question. Tics have risen up…..so many of them. This had never been something we had dealt with before. One tic that we are still fighting is where he licks his lips and then rubs his fist across them and onto his cheek. The chap that resulted on his cheek and hand has gotten so bad at times, they look like bruises and/or infected. A neighbor even asked if I had hauled off and smacked him really good. Being out in public is a challenge as we never know when one of these episodes will happen and when they do…..removing him is quite a loud and physically challenging job to say the very least. These rages have become so bad that a couple of his doctors believe its best for us to keep him home for a bit while we figure out how to control them. Our bottom line and greatest concern is that he has lost his ability to cope. With anything and everything.
“God I look to you. I won’t be overwhelmed. Give me vision. To see things like you do.”
This week, we had 4 appointments scheduled to tackle this issue. The first, I drove him over 4 hours round trip to see his Developmental Pediatrician. Yes, he IS that wonderful! We discussed some modifications to our current stress management plan. We talked about a behavior modification method that we were trained on years ago and how to tailor it to the Cannon of today. Using data collection and graphing to monitor and attack behaviors that are of most concern. These are all things we are doing currently but with slight tweeks. And that is why he feels that we have to start considering medication. For the sanity of our entire family, for the safety of those around us, and because Cannon deserves a chance to live the best life he can. The place we have progressed to is not ok. It’s not fair to him. He is better than this! I realize this is a topic that might really get some people going. I would ask that you respectfully decline from comment if so. We have just about literally bankrupted ourselves trying everything else on the planet. Every supplement, every essential oil, every therapy, every doctor, every everything. Please, please know that! And we haven’t made a definitive decision either way. It is just looking probable at this point.
The next day, we went to the Aerodigestive Clinic to meet with 3 more doctors. His G.I. doctor decided to start him on a 14 day course of antibiotics. This may seem strange but 6 years ago, we went through an exhaustive 4 month ordeal of insane behavior and insomnia. When treated with antibiotics, it went away immediately. Cannon’s body harbors bacteria. It’s a chronic issue. So, we will see how he responds to it this go round. He also wants to do an Upper and Lower Endoscopy as soon as we can get it on the schedule to see if there is anything new or flared up internally. His Pulmonologist agreed with the previous and wants to tag team on that procedure with her own Bronchoscopy. I am particularly interested to see if his aspiration rate has increased with this behavior. In July, it was the lowest rate we had seen in 2 years. But with no rhyme or reason. Not a one of us trusts his body for a second. He ebbs and flows constantly without recognizable symptoms so who the heck knows! I was most interested to discuss a particular disorder with his Allergist. He is affiliated with a clinic that diagnoses and treats children with a disorder called Pediatric Autoimmune Neuropsychiatric Disorder or PANDAS. All 4 docs agreed there were a lot of similarities and that this was an appropriate discussion to be having at this point. However, the allergist feels that as of now…..it’s not checking enough of the boxes or setting off enough red flags. He thinks the most direct route to help for Cannon is the medication his Developmental Pediatrician recommended.
“God I look to you. You’re where my help comes from. Give me wisdom. You know just what to do.”
So, the 14 day course of antibiotics are on-board. Procedures are getting authorized and hopefully scheduled soon. And after 5 doctors and 1 pharmacist have concurred on this particular medication that will help Cannon control his anxiety, tics, and extreme behaviors….we are considering it. And that is where we are to date. We welcome your prayers as we try to isolate what has caused this latest season of struggle.
I sought the advice of a long-time friend who happens to be a rock star Special Education Teacher this week after a 4 HOUR rage nearly did me in emotionally. Her words gave me exactly the perspective I needed. She said, “Kimberly…..just love him. And remember that ALL behavior is a form of communication.” Thank you Tracy! This perspective was absolute perfection!
Friends…..this season has been a rough one. I have cried more in the last few days….. My patience has been tried to the brink. The stress on my sweet family has tested us….but we are holding on (sometimes by our fingernails but still…). But hear me on this y’all…..I am forever blown away by the opportunity for growth, comfort, and intimacy with God during these times. Just being willing to reach out in fervent, honest, whole hearted prayer. To worship through the struggle…..even when you don’t feel like it. To meditate on scripture. To lift heavenward/breathe in sound song lyrics that uplift, encourage, and support…….It’s all so vital.
“I will love you Lord my strength. I will love you Lord my shield. Oh, I will love you Lord my Rock. Forever all my days, I will love you God.”
This song was on repeat in our house this week. I hope it becomes a battle cry for you as well! See the challenge you are facing, acknowledge it to God therefore releasing it to him, and rest…..yes REST in the power and strength that comes forth! We love you all!