Let Me Explain

“Chromosomal Microarray Analysis revealed a copy number LOSS of chromosome band 15q13.2q13.3 of approximately 1.474 Mb in size. The deleted segment, which includes the CHRNA7 gene, has been associated with intellectual disability and seizures…”

This is the clinical result of Kody’s official diagnosis. A chromosome disorder that has been associated with intellectual disability, seizures, attention deficit hyperactivity disorder, difficulty with mood regulation, and impulse control. It has also been associated with hyperphagia, low muscle tone, speech delay, autism spectrum disorder, and oppositional defiant disorder. This is the explanation for why Kody has the challenges that he does.

As the mother of a child with such obstacles, I constantly find myself wanting to explain his behaviors. I wonder what people think of me as a parent and even more so what they must think of him as an individual. I believe that people are judging my parenting skills as they witness Kody being awkward, difficult, disrespectful, or disruptive. When they see him with his IPad, they must think it is irresponsible of me to allow him so much screen time. I am sure they wonder why I have not taught him social skills or why I allow such disorderly conduct.

My answer to anyone who does not know us or not taken the time to understand the full picture is, “Please excuse our beautiful mess, we are a work in progress and our progress is slower than the average person. But we are progressing.” We have come a long way, believe me. It is a situation that requires constant attention and therefore takes a lot of tools to negotiate or manage behaviors. I am as much a student of his condition as I am an expert. It is not that I am not teaching him these things, it is that he is still learning why, how, when, and where to apply them. So, it looks very messy to an audience.

There is always room for improvement as a parent. I used to ask God all of the time why He would choose me to be the mother of a child who needs strong structure and consistency, strict boundaries and someone with stamina for the daily battles. I have a hard time remembering what I did yesterday! It takes a lot of energy to deal with his responses to being told “no” or making him be responsible for his chores on a daily basis. Everything that takes any work on his part and is not centered around instant gratification is really hard for him. That does not mean he cannot do life on life’s terms, it just means that he takes longer to do it on his own.

In the mean time, if he is awake, we are in training. It means that I constantly question myself whether I am being too hard on him. Have I balanced negative responses to his behaviors with positive ones? What can we look for in his behaviors today that we can use to build him up? Am I being unfair to the other kids in the house? Are my expectations too high, or are they too low?

It is a complicated situation. I have taught Kody for years to “play out the tape.” In other words, think about what is going to happen if you make the choice to break a rule or choose a negative behavior. His teachers at school have also worked diligently on this same concept by using behavior charts and reward systems. He knows without a doubt that when he breaks a rule, there are consequences. When asked, he can also recognize the behavior that caused him a problem (most of the time). Currently his hindsight is better than his foresight. He has grown so much over the years and matured in so many of his behavior choices that I have faith in his ability to overcome most of, if not all of, the challenges he faces.

I would like to offer this perspective because I know a few parents who have a child with similar special needs. We cannot parent these children on an island. Like little bulls in a china shop living on raw emotions and overstimulated senses, they cry out for understanding and relationships like anyone else. Their wiring is different which affects the way they process the world around them. They are hardwired to see things their way and changing that is not easy. It can make it difficult to get to know them and uncomfortable to deal with them at times, but any effort you make will bless you both.

People who open their hearts to the experience are rewarded with a special relationship that offers opportunity for personal growth and a grand adventure. So, when you recognize this dynamic in a family or an individual, I encourage you to reach out and lift them up, offer your support, and love on them. They need you – we need you. I cannot tell you how much I appreciate all of the people in our lives who have done just that. Thank you from the bottom of our hearts for your prayers and your kindness!

Handsome and debonair in his choir attire.