The Road Ahead

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“He’s like a super hero who can’t use his super power. If you have a super power and can’t use it, it doesn’t do you any good.” These were the words of the neuropsychologist who had recently spent ten hours testing my youngest son, A, to try to unravel the mystery of his sudden downward spiral in behavior, school, and just coping with life in general. Most mornings, I find myself writing a note that A. is late (sometimes over an hour), because he’s battling mental illness issues or suffering from a stomachache. And after making high honor roll for every single quarter possible, my objectively brilliant son was failing most of his classes as last quarter wound down.

I say objectively brilliant, because the results of his evaluation showed that he’s got MENSA level smarts. His IQ is above the 98th percentile for his age. His working memory lands in the 99.9 percentile. And yet, to revisit the superhero metaphor, he’s like a superhero who’s been felled by Kryptonite, or some other substance that cripples super heroes. His intelligence is his super power and his Kryptonite is Obsessive Compulsive Disorder (OCD), with a side order of Attention-Deficit/Hyperactivity Disorder (ADHD).

In a massive stroke of coincidence, or perhaps serendipity, an essay I had written on my first blog eight years ago showed up in my Facebook memories yesterday, the day we met with the neuropsychologist to get the results of A’s testing. It wasn’t the anniversary of the day I had written it, only the day I had reshared it on Facebook six years ago in an effort to raise awareness of mental health issues. The essay, Twice Exceptional, was about my middle son, J, being both gifted and battling mental illness.

I wrote it to shine a light on the fact that although giftedness and mental illness seem dichotomous, they coexist far more often than expected. I also wrote it to let other parents know that they are not alone if their children too embody the sometimes baffling, often frustrating double-sided coin of superior mental acuity and debilitating mental illness. I took it as a sign that I needed to finish up this post, which I started with the paragraph below over a week ago; a sign that I should again try to both raise awareness and comfort those going through a similar hell. I think part of me knew that I’d do a better job though, if I knew exactly what my son is up against. So I didn’t get back on here until I had read through the entire report from the neuropsychologist.

When I first put pen to paper (figuratively), I was focusing more on my shortcomings in missing A’s subtle clues that he may have been suffering silently, until those clues became louder than any of us could ever ignore. I focused on how hard it is to parent two children battling mental illness and somehow not feel as if you’re letting at least one of them down. So, I’ll let the following paragraph (the original opening of this essay) stand, because I think it’s just as important…

Parenting a child with mental illness is an arduous, sometimes soul crushing task. You don’t know what’s ahead of you on the road, and the journey is often littered with emotional minefields that can blow up at the slightest provocation.  Parenting two children battling mental illness is all of that, plus a constant feeling hanging over you, like an impending thunderstorm, that you’re not doing enough for either one.

It’s a tricky dance of administering triage…the squeaky wheel always gets the grease. I got that term – administering triage – from a friend in whom I confided my guilt that my son, A’s, issues simply slipped through the cracks until things got really, really bad, because I was dealing with my son, J’s, eating disorder and Obsessive Compulsive Disorder. She has more than one child battling “alphabet” conditions, just like I do. She shared that you have to “do triage” and help the child with the most pressing issues first, confirming that I wasn’t completely wrong to deal with my middle son, and let my youngest slide a bit, until he became the squeaky wheel.

That was where I stopped, because I was waiting to get results. I didn’t know how bad it was that I let it slide, to tell you the truth. In fourth grade A. was evaluated. When I picked up the report to deliver to the doctor evaluating A. now, I was a bit horrified to discover that he had given him three tentative diagnoses: Anxiety Disorder, Attention-Deficit Hyperactivity Disorder and Autism Spectrum Disorder (ASD, formerly Asperger’s). They were all “rule out” diagnoses, meaning that he wasn’t certain, and only time and further examination would tell which would stick.

The only thing that the psychologist definitively diagnosed A. with in fourth grade was “Gifted and Bored.” In the absence of sending him to private school, there really wasn’t much more that I could do than I was already doing: sending A. to increasingly sophisticated science camps (the last one at the Cold Spring Harbor DNA lab where Watson and Crick conducted their Pulitzer Prize winning research, which he’ll be attending this summer, as well); buying him every science tome I could find; setting up a professional weather station in my front yard; and anything else I could do to encourage his insatiable curiosity about science in general, and weather in particular.

But, I didn’t do anything at all for the possible ASD. And beyond a month or two of therapy a few years ago, I didn’t do much for the Anxiety Disorder either. But, he seemed to be doing just fine, until he wasn’t. It was sudden – like a light switch turned off. It started during the lead-up to A’s Bar Mitzvah. He was stressed over writing his “parsha” (the essay about his bible portion that he would be sharing with the guests at his bar mitzvah service), along with the increased homework that comes with taking high school classes in eighth grade. I thought his sudden frustration, anger and emerging OCD symptoms (all related to banishing “contamination”) were due to the stress of his responsibilities. But, his OCD behaviors just kept getting more and more intricate and time-consuming (for example: over forty minutes washing his hands, leaving them cracked and bleeding past his wrists), and his grades plummeted, due to missed assignments. His test grades were still stellar, even though he never cracked open a book, but he was missing so many assignments, catching up turned into a Herculean task that sparked anger and frustration. His bar mitzvah came and went almost three months ago, but nothing got better, only worse.

Here’s the thing, I didn’t know during the last few months of hell if A’s symptoms were due to OCD or undiagnosed ASD, and I beat myself up endlessly over it. I pored over ASD websites searching for clues as to whether I did indeed mess up by not getting A. treatment for autism when he had been possibly diagnosed with it. Rereading my essay, The Puzzle, I was horrified to learn that I did plan on following up on the possible ASD diagnosis. But back then, and until recently, he seemed okay socially. While not having tons of friends, he does have a close group. And academically, his teachers referred to him as an “absent minded professor” or “the next Thomas Edison,” just an eccentric genius who didn’t seem to be paying attention, but obviously was, because he aced every test and got high honor roll worthy grades.

At least he earned those grades until this year, or really rather just these past few months. Almost daily, it seems, I get a call from a teacher telling me that A. is falling far behind. His Earth Science teacher informed me that if he didn’t catch up on his labs, he’d have to take Earth Science again next year. He got a 97% on his Earth Science midterm, without even studying. It would be a tragic if he failed the class, because of OCD paralyzing him with fear (he is often afraid that his papers are contaminated, and therefore can’t touch them to turn them in). Of course, ADHD delivers the final gut punch of complete disorganization, so even if he was willing to touch his labs to hand them in, he couldn’t find them.

I went into school twice to clean out A’s locker with him. The second time his Earth Science teacher stayed late and went over every paper we pulled out of the locker too, looking for anything that was due to him. He sees A’s potential. He knows that he has a “scientist’s mind,” as we’ve been told. It’s just a matter of freeing A. from what imprisons him. We are hoping that a combination of intense therapy and medication can release him. And I am relieved that the diagnosis is OCD and not ASD, simply because the OCD symptoms got so much worse just in the past few months – two of which were spent waiting for insurance approval for the evaluation. So, I didn’t let something go for years that could have been treated sooner.

The doctor also recommended several accommodations for A. that, if the school approves them, should help a lot. My middle son, J, has made a lot of strides in school this year, eleventh grade. He still has some issues with attention, but he’s taking several very interesting classes that are more interactive and perfectly tailored to his learning style. He’s pulling in grades in the nineties for those. While he still has challenges in a couple of classes that rely on listening and heavy note taking, without a lot of hands-on activity (an ADHD sufferer’s nightmare), he’s not failing. His eating disorder still rears its ugly head, but an increase in medication has kept his weight stable, if not as high as it should be. But right now, he’s not the squeaky wheel, A. is and the pendulum of attention has swung to him. A. is the one in triage now.

But, you can’t stay in triage forever…it’s temporary until either you’re deemed okay or a plan of care is created, and you’re moved into the next phase of treatment. So, that’s where we are now, ready for A. to embark on a treatment journey. He needs to reclaim his super powers of intelligence intertwined with insatiable curiosity. The neurologist shared that his superior IQ really doesn’t matter, if he can’t use his formidable smarts, because OCD and ADHD are paralyzing him.

The road ahead won’t be easy…I know that from experience. There are storm clouds hanging over us, but I have to believe that with the right treatment, the sun will shine again.

Note: I took the photo above this essay as we drove into a thunderstorm in Arizona back in August. I snapped the photo below the next morning…sunrise after the rain cleared. I chose these particular photos to remind myself – and others – that the storm always clears and the sun comes back up, even if it takes some time…

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2 thoughts on “The Road Ahead

  1. Anonymous says:

    I live your life. My daughter is 21 years old and suffers from ADHD, anxiety, and rage disorder. Every day I tell her her life is a journey and some days the journey is easy and somedays the journey It’s really hard. Each day the sun comes up and I say let this be the good day. She goes to college away from home, lives on her own, he’s in a relationship, but every day I worry that she will make the right decision when I am not there to hold her hand. But I do realize that for as long as I live I will always have to be the guiding force for her

    • stephaniekepke says:

      Thank you so very much for sharing! I’m sorry that you are going through the same thing. It’s so difficult. That’s great that your daughter goes to college away from home. I know my 17 year old wants to and hopefully he will, but I am definitely worried about it. My oldest is away at college now. He doesn’t have mental health issues, and I still worry about him. I can’t even imagine how much I’ll worry when my sons with OCD go away to school (in 2019 and 2022). You’re absolutely right about needing to be a guiding source. Sounds like you’re an amazing mom! Best of luck to you and your daughter.

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