Monday, March 21, 2011

The Biggest Injustice......So Far

I just completed a blog, but I realize there is something that has been on my mind that I need to spit out. I thought of it while I was in the car a few days ago and meant to blog it then, but I forgot. Imagine forgetting!!! As I mentioned in a previous marathon-blog, we have tried to parent Garrett based on the principles we learned as children from our amazing parents. We also read books, watched parents we respected, and of course, looked to the Bible and its teachings for the ultimate guidance. But we have been off, WAY OFF. Way, way, way, way off. And here is why, I think: From Garrett's one year checkup, he has had the label "delayed." Everything was delayed. His speech, eating, gross motor skills, fine motor skills, emotional reactions, behavior, everything. So we went with that, treating him like he was younger than he was, thinking that was suitable. That's what the therapists did. That's what we should do, right? So as he got older, we would try to just grow with him alongside his developmental age. For example, once he understood the word "no," we could expect he could be accountable for eventually understanding the word, thus be accountable for not respecting the use of the word, and receive a verbal or physical reprimand. He has been spanked, put in the corner, reminded, and yes, even popped on the cheek after screaming for a couple hours in the car or anytime we got into the car. And yes, once it was much too hard. And yes, it worked, but only because the crying was more bearable for everyone in the car than the screaming and kicking and spitting and thrashing. We have tried it all. I am not the least bit in denial that my child has lived in misery, looking back. He could not help so much of this, and we thought we could treat him as he was "delayed," and that would be the right thing to do. You know the problem about "delayed?" Delayed means : to postpone until a later time. It is a verb. A action. So if your plane is "delayed," it will arrive, it's coming, but later than originally scheduled. But it will arrive. So you can grab a bite to eat, make a bathroom stop, remembering to keep your luggage with you because the flight IS coming, just not now. SO you carry on as if it is coming. You don't drastically change your schedule and get a hotel and cancel your business meeting or class reunion and leave the airport (most of the time!). You just act normal, maybe waste some time, but the flight will happen. Garrett was called "delayed." So we went on about life, not canceling anything, not making huge changes, not adopting new parenting techniques or changing our strategy of life. We merely treated him as if he was behind, but would catch up. We treated him as if he was "delayed." This sounds like the right thing to do, given the label, but now we are watching him battle mental issues far different than "delayed." We are seeing autism-type things, ADHD, sensory processing issues, impulsive behaviors, OCD behaviors and seriously troubling anxiety. To hell with "delayed." We have waved goodbye to "delayed" and I would give my arms and legs to have it back and turn back in these other monsters. Why was "delayed" such an injustice? Because it let us live in a fog of denial. Sure, in the beginning, he looked delayed, and that would be the most common explanation for his condition a few years ago. I cannot blame anyone for calling it what it appeared to be. He was seemingly behind. But in that we parented him as if he was younger than his age, having no idea why we were banging our heads against a wall so darn hard. Why wasn't "no" working? Why could we physically punish him and he would continue to repeat the behavior over and over and over and over again? Why was one response to a situation normal but another, same situation, met with sheer anger and frustration and a tantrum? Answer: because he wasn't "delayed." So we have used the information scientists were giving us to mistreat our child. Of course no professionals had any mal-intent here, but that's the simple of it. We were going on bad information, or at least on information no one could have predicted would end up being bad. Sure, they could not really tell yet that he had other issues. Those unfolded slowly over time, and it was Garrett's pulmonologist who first helped us with getting some medication started to help us help him. It is easy to see things in hindsight. We all know that. But this is painful hindsight because not only were we mistreating our son for these years, but now we see the behaviors coming out that are sometimes mirrors of what he has seen from us for years. The frustration, hopelessness, anger, quick-reflex reactions. As if he needed help with things being weird, in we step and seal the deal. Great. Knowing it isn't just delay is helpful now. We are getting him the help he needs. We had a chance to start this process at the end of last summer, but we canceled the appointments with the neuro-psych doctor because we chose to take the kiddos to Montana for July to escape the heat and get away from therapies and driving and the craziness we had created at home. Then we moved. And now we are finally in with a PhD to help us with recommendations for Garrett's therapies and education. I share all of this to get it off my chest, naturally I am pretty flat chested since starting to blog....ha!!!! But seriously, just for a moment, I would like to remind you to keep an eye out for other children like Garrett where "delay" seems to fit, but then it doesn't. Don't let time be an enemy. Probe, research, study, ask the hard questions, get second opinions, and when something is bothering you and just doesn't seem right, don't be content listening to well-meaning family and friends to the point of believing what you see either "isn't that bad" or "improving" to the point you place yourself in denial. No one ever meant for things to be worse than they would naturally become with our son, but no one else lived with him every day like we did. I KNEW that things were way not right two years ago, maybe more, but I kept being encouraged by others. The encouragement and positive comments were nice, but deep down they made me feel horribly helpless. Could these people not SEE what I saw? Could they not sense any of the abnormalities I sensed? I felt like maybe it was just me. Me overreacting. I just needed to be more patient, as my mom would remind me. I needed to count my blessings. I needed to wait and see what God has in the plan to heal Garrett. I have a new friend at a nearby ranch who is a true Christian warrior, and I really like her. She keeps offering to take Garrett and me to a prayer room and her church's prayer meeting. When she offers, all I can think is, "great, another obligation, another place to have to drive with Garrett in the car, another chunk of time." From the outside, it would seem I need to take her up on this. She believes there is something missing in Garrett or maybe even something extra IN him that prayer could could fix. I am appreciative. I truly am. But I am not enthusiastic about this prospect. I have prayed. Our church family from FUMC Gonzales where we raised our kiddos most of their lives in Louisiana, still pray for Garrett. Our friends and family pray. But the reality is on paper, on slides of his muscle biopsy, in his DNA. He is not well. He is not normal, and I do not think a possession or lack of God in his little soul could cause any of this. It just doesn't rest well with all. Fact is fact. Sure, God can heal people. I know it still happens in modern times. But this is so seemingly huge and real and obviously not an easy fix. God can heal. But the proof of his condition is so real and I can see it. But God can heal. I am torn. I am thinking about it more, and I believe I fear going to a prayer meeting to take Garrett and then then if things do not improve, I may lose the faith I have left. I have faith. But I am discouraged, and I feel any additional let down in this earthly life may take me to a new lower low. I want to believe I can take Garrett before very faithful prayer warriors who petition Christ for Garrett's complete healing, especially with his brain, but I do not know what to think. I am more afraid of let down than of anything else. It's a new place for emotions. Anger, almost. But God can heal. So don't be hard on yourself if things seem wrong with your child, mentally. Go to the experts and get second opinions and ask the schools to test and evaluate AGAIN. Don't carry it all by yourself.....I tried. It works for a while, then the load gets too heavy. Thank you for checking in on us, for your friendship and prayers. Godspeed, Clara-Leigh


  1. wow! So honest and brave of you to post. I've felt some of these same emotions and questions myself. Thanks for sharing.

  2. Oh, Clara-Leigh, I needed to read your post; in it's own way, it's an answer to my prayers. Bricen's behavior is scaring all of us. Sharing yourself has given me the strength to face that it DOES go beyond "delays" and is something more, as hard as it is to accept. Thanks (again) for being such a friend.
    Love to all of your precious family.