Teenage boys are strange creatures. All gangly limbs and half-tuned voices. Smart enough to fix an iPhone but not smart enough to remember their lunch money accounts are empty. Hungry at all hours, locker-room stinky, practitioners of the most repulsive habits. They are enough of a challenge in themselves, these creatures. But when the teenage boy carries with him a complex profile of Asperger’s (ASD), Bipolar Disorder (BPD), OCD, and ADHD, how do we know which issue is causing him—and us—the greatest grief? What do we tackle first?
The last time Noah went to a friend’s house to sleep over, he forgot to take his medication.
We felt the effects for a solid week as we struggled to get him back to level. Today, I packaged him up and sent him out again for another sleepover, this time with my heart in my throat. Would he take his medication? Would he be able to sleep? How long would it take us to re-set his body’s clock when he got home?
Written out, it sounds simple enough. “Here are Noah’s diagnoses. Here are their symptoms.” But jumbled together, these overlapping symptoms require Matt and I to run a check list to discover their root cause. Is his grouchiness normal teenage fatigue, or is it depression? Is it too much sugar, or is he manic? Is it an Asperger’s obsession, or one caused by Bipolar Disorder? Is his anger a function of his teenage moodiness, or the frustration leading to a characteristic ASD meltdown?
Navigating his multiple medications was—and remains—one of our biggest challenges.
Meds for sleep, meds for anxiety, meds for mood stabilization. We tweaked and replaced for months and finally have Noah in a good place—but not for lack of worry and many long crying jags (mine) . Once the bipolar diagnoses became clear, I remember thinking that it was too much. I choked out a few prayers, telling God this was the thing I couldn’t handle. I was afraid that a kid with major deficiencies in his executive functioning (due to ASD) would never be as precise with his meds, mood, and sleep as he needed to be to live happily and productively.
“Lord,” I pray-cried, “let it be one or the other – but not both! It’s too much for me. I’m afraid for him.” Even talking about it with other parents reddened my cheeks with embarrassment. (The irony? Noah won’t tell anyone he has Asperger’s but loves to tell his friends he spent a week at a mental health facility for his Bipolar Disorder. Go figure.)
I admit this with some shame, because Matt and I love to break down stigmas and talk about the stuff no one else will. But there are still pockets of the Church in which illness hides, and nothing remains more taboo than mental illness. It continues to break my heart. In my own life, I have survived the death of my brother and chronic illness, financial ruin and marital strife. And yet, this was the line I told God I couldn’t cross.
He didn’t much care for my line. In fact, he was good enough to let me know I’d have to cross it, even before it was drawn.
Five years ago, before he retired and on one of his final visits with Noah, our Kennedy Krieger Institute neurologist talked with us about Noah’s mood. We couldn’t understand the wild swings between extremes and we were at a loss at how to manage them.
“I believe that as we learn more about this diagnosis – about Autism – we will discover that often, these meltdowns, anxiety attacks, depressive funks, and sleepless nights were actually a result of bipolar disorder all along. The portion of the brain impacted in both ASD and BPD is the same. We just haven’t called it by the right name yet.”
Later research has borne out exactly what our doctor told us: that there is significant overlap between diagnosis.
We’re scratching out the lines of Noah’s diagnoses and trying to figure out where they intersect. We’re addressing each symptom day by day, and just doing the best we can. This is uncharted territory for us, and honestly? We’re a bit lost. But God isn’t. All of this was His landscape, His path from the beginning.
Noah may never live independently. This sounds glib. At fourteen, Noah’s future still seems so far away and I have the hope of his productive, happy future. But the answer to our daily dilemmas is simple: trusting God in everything. Trusting Him for stamina when the effort of helping Noah is exhausting. Trusting Him for wisdom when the acronyms and medications run together. Trusting Him for patience when Noah’s symptoms set everyone in the house on edge.
“Trust in the Lord and do good; dwell in the land and enjoy [His] safe pasture.” Psalm 37:3.
That’s our comfort. Not that there’s an easy fix, but that there is a Fixer. We do good. We trust in the Lord. We check the symptoms, look for the lines.
Our lives are lived by the hour and the minute, by the symptom and the pill. Perhaps they always will be.
And that’s okay.
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