Two White Pills

Pills_copy

 

Two white pills determine the success of the day.  Two white pills hold the power to attend.  Two white pills are a life line to sanity. Two little white pills sitting alone forgotten on the bathroom counter.

A little over nine years ago…

I am pregnant with Kailey, Ethan is in first grade, Dylan a preschooler, and I am hustling the boys to get dressed and ready for school. Ethan comes into my bathroom yelling “Mom, Dylan has TPeeeeed my whole room.” As I was cleaning up the toilet paper that his brother had used to decorate the bedroom another scream echoed from the kitchen, “Mom you had better come quick!” In a matter of minutes, after being banned from Ethan’s room, Dylan managed to open the refrigerator and smash an entire package of eggs on the kitchen floor. Unbelievable! I am a raging mess of hormonal anger.  The boys scatter, and I clean up the second disaster of the morning. What were we thinking bringing a third baby into this chaos? The egg bombs are finally picked up, and I go back to my meager preparations that were rudely interrupted. A quick brush of the hair and I look down at my bathroom toilet only to discover that it was at the brink of over flowing. While busy dealing with the other two catastrophes of the morning, my darling second born had decided to open and flush a box full of tampons down my toilet. That was it! It was time to get this master of disaster out of the house before he disassembled it or I went into premature labor!

From the time Dylan woke up he was on the go experimenting, testing, or taking apart, until he crashed exhausted from his constant curiosity and activity. I would have to bring a stroller or wagon to preschool to pick him up, because most days he would be sound asleep when I came. Dylan had two speeds: on and off. One behaviorist we sought out for help recommended that we encourage his natural curiosity by getting him his own toolbox. We agreed to try this idea, but started out small.  Dylan’s toolbox contained a tape measure, level and screw driver. None of these items could do much damage, right? Wrong! One afternoon we discovered all of our doorknobs, sliding door handles and window cranks had been unscrewed.  We had our very own “Bob the Builder” on hyper speed.

Most doctors are reluctant to give any psychiatric diagnosis to a child under five years old.  However, his neurologist explained early on that there was a high correlation (60%) between Opsoclonus Myoclonus Syndrome (OMS), the neurologic disorder that was a result of an autoimmune response from his initial diagnosis of Neuroblastoma as an infant, and Attention Deficit Hyperactivity Disorder (ADHD). So, we were vigilant and not surprised when he started exhibiting these impulsive behaviors.

Attention Deficit Hyperactivity Disorder or ADHD is a misnomer.  Dylan attends to everything! There is no deficit in his attention.  There is an abundance of attention, but no way to filter what he is attending to. Everything and every person is of interest to Dylan and catches his attention.  Life with Dylan is like watching TV and having the channel changed every 10 seconds! He is naturally inclined to be curious of everything. However, left untreated this overly attentive behavior can cause deficits: academic deficits, social deficits and other cognitive deficits.

Visual, auditory, tactile stimulus surrounds us every day. The average person is able to ignore input that is not important and focus on a given task most of the time. Dylan cannot do this on his own. His brain cannot stop changing the channels; he has no remote control.

The solution was medication. We were so excited that Dylan’s medical treatments to suppress his immune system and control the OMS were beginning to taper, and the intervals between IV treatments were being stretched further and further apart.  Introducing a new medication into the mix was not something that we wanted to do, but for our sanity and for his own cognitive development we had to try something that would help regulate his impulsivity and inability to attend and focus one a single task.

 

His help, his filter, his remote control these days comes in the form of two little white pills (aka Methylphenidate). The difference between the person he is with the pills and the person he is without them is significant.

In fact, I left a meeting I had with Dylan’s new teacher and middle school support team recently shaking my head in disbelief. His new IEP (individual education plan) goals did not include a goal for focus or working independently without reminders.  He had always needed a goal to help monitor his ability to stay focused on an educational task.  I explained that by 4:00 when the potency of his medication was starting to decrease it was almost impossible to get homework completed without me standing over him or sitting right next to him to keep him focused long enough to finish. “We don’t see him having difficulty staying focused during the school day. Dylan is a hard worker and can work independently,” they responded.

Thank God! I was still slightly suspect of the glowing report. Yes, he is an awesome kid, but no focus issues?  Really? FYI if you see him acting the opposite of this awesomeness you are becoming accustomed to, let me know.  Oh, and please keep all eggs out of reach and do not give him a screw driver! He either didn’t take his pills or his dosage needs to be modified.

This Monday’s school pick up…

I notice Dylan’s aide walking him out to the parking lot to meet me.  His aide never walks him out to meet me. “Dylan forgot to take his pills today.”

These few words and the look on her face spoke volumes.

I wanted to reply with “Welcome to my world!” Instead, I gave our actual, but lame, excuse that the power was out this morning and we must have forgotten the pills in all of the excitement of getting ready in the dark.

Two white pills determine the success of the day.  Two white pills hold the power to attend.  Two white pills are a life line to sanity. Two little white pills sitting alone forgotten on the bathroom counter.

“How are you son?”

“SOOO tired Mom. Let’s go home.”

 

 

 

 

 

2 thoughts on “Two White Pills

  1. Rory, Your are so amazing and so brave. I’m so grateful you share your stories. I’ve learned so much from your posts, so much I can relate to on so many different levels. I wish I could express myself as well as you can. You have a real gift. I think of you often and miss seeing you.

    xo, Eden

    Sent from my iPad

    >

    Like

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