My heart was racing as I pulled into the parking spot at my son's special need's school. He was in the fourth grade and had been placed in this school because of uncontrollable behavior in the public school. We were living in a season of sadness and frustration. We had tried a few different medications in an attempt to get Sean's behavior in balance.
The call from the school was frightening. Sean was out of control and I needed to come get him immediately. Thankfully, it was the end of the day. As I approached the front office, I heard howling that sounded like a wounded wolf. I remember thinking, "I'm glad that's not my child!"
As I neared Sean's classroom, the howling got louder. Now I was panicking in the realization that it was my son howling. This was a sound I had never heard before, and I was terrified. I walked into his classroom to see Sean being restrained on the ground. He had been hitting, kicking and spitting at anyone who came close. There had been no calming him down.
I reached into my purse for his PRN, commonly known as his "emergency medication" for just his type of incidence. I realized I needed to wait a few more minutes before attempting to give him this medication. He would only spit it out now. After talking quietly to Sean for a few minutes, he started to settle down. I gave him his med and continued to talk soothingly to him. Knowing he was in a heightened state of stress, I asked him no questions. Trying to reason with him at this point was futile, as it would be for anyone in the emergency mode.
Once at home, I did a quick search on his new medication, I realized this one was not for him. We made an emergency trip to the psychiatrist the next day to try a different med. Within one week, we saw our old Sean again, sweet and lovable. I was hoping this was an experience I would never forget. Why? Because I had not properly researched this medication's side effects before agreeing to have Sean try it.
Now fast forward to the present. Sean was now 25 and we were entering the fall season. His over-focusing behavior was driving us all a little crazy. So we asked the psychiatrist for a medication to help modify this behavior. We were also working with a Behavior Specialist. Sean was living very successfully in an Adult Family Home that he loved. This was the first home away from home where Sean truly felt independent and loved. He was learning new skills, like riding the public bus, laundering his own clothes and managing some daily money. Although his new-found freedom needed some tweaking, he was generally managing his life fairly well.
But with the over-focusing issue, his team of supporters and I agreed it was time for intervention that included medication. But this was when I skipped a vital step! I forgot to do the research before allowing it to be added in to his medication regimen. We were about to repeat a very painful lesson.
I rationalized his newly seen behavior as a reaction to the craziness of the holiday season. But he didn't improve in January. In February we decided to increase the med that helped with over-focusing. Within a week, we started seeing a different Sean. He was angry and frustrated all of the time. He disobeyed rules and boundaries. He gave the silent treatment when told to do something. He engaged in risky behavior. His caretakers were starting to burn out and so were Russ and I. There seemed to be no answer in sight.
Then one evening as I was chatting with his caretaker, trying to figure out why he was once again acting out of control and very angry, I had a revelation. I quickly researched the contraindications of this medication. I was looking to see if it reacted negatively to the other medications he was on. Bingo! Right there in black and white, it warned of moodiness if mixed with his seizure medication. How could I have missed this step! I had forgotten to check for the interactions when we first agreed to put Sean on this medication. I hadn't remembered the lesson I learned so many years ago.
The doctors don't do it. The pharmacy does it once in a while. But you must do it every single time. You must know your child's medications. You must know their side effects and how they react with each other. It's the sad reality, but the buck stops with you, the parent or caregiver.
I was just thinking, before writing this article, how mad Sean always was while on this med. Then I got to thinking about the definition of "Madness". This is how it's defined: "the state of being mentally ill, derangement, extremely foolish behavior, a state of frenzied or chaotic activity." Check, check and check! I had been witnessing all these definitions in Sean since being put on that medication! This medication had literally made Sean "mentally ill" or a term we often use, "crazy!"
The chaos that resulted from his behavior spread from his Adult Family Home, to school, to our home. He had driven all of us crazy! Our special needs kids often have very intense behavior, whether negative or positive. And medication can magnify this even further. It is vitally important that we take our role as parent very seriously when it comes to medication. We can't afford to sit back and trust the doctors. And now with our smart phones, we can literally check on a med's contraindications and side effects in a matter of minutes.
We had to make some dramatic adjustments over the last several weeks. But in the end, Sean will benefit. He's recently learned a brand-new skill: how to ride the train alone. He feels more grown-up, and we're seeing our lovable and humorous son again. Now I pray that this lesson on medication has been learned for good. Writing about it should seal it in my memory!