Parenting Through Epilepsy and Mental Illness by Jeff Hyndman
“I’m having a good day.”
These are the first words I hear my son say more days than not. He calls my wife and me at least once a day, sometimes more—especially my wife, his clear favorite. He keeps a mental Rolodex of who to call and when. His aunt gets her weekly Saturday morning check-in, no exceptions. His younger sister gets a call once a week—unless something urgent is on his mind, like exactly what time she’s picking him up for dinner. And if his birthday or Christmas is right around the corner, all bets are off. When this happens, he simply must call to remind all of us to remember his much desired presents.
That persistence, that structure, is part of who Richard is. But so is the struggle. Richard’s first seizure occurred when he was five and a half. It was a Grand Mal (Tonic-Clonic) seizure, as were his subsequent seizures. During those early years, before the doctors finally found a drug regimen that kept his seizures at bay, it was heart-wrenching to watch helplessly as my child flopped on the floor, his brain’s electrical system temporarily shorting out.
Cognitive impairment is not uncommon with epilepsy, and we’ll never know for certain whether Richard’s epilepsy contributed to his developmental disability, but we believe it did. We saw the before and after versions of him when his seizures began. There was no mistaking the difference. He was less inquisitive and asked fewer questions. Simple problem solving in games he knew became difficult for him. And he was less animated.
He struggled in school from a young age and was diagnosed early on with ADHD and related learning disabilities. His mom spent countless hours assisting him each week on homework and with test preparation. Between her unflagging efforts and the extra attention he received at school because of his learning disabilities, he was passed on grade after grade. But this was not to last.
At the start of high school, in ninth grade, Richard struggled mightily in school and at home. His mom’s steadfast tutoring was no longer sufficient. The sheer size of the high school was a challenge for him. He had trouble remembering where his locker was located, and he was unable to recall the combination to open it. His mom wrote the combination on a piece of paper, and she checked each day to ensure he had it with him.
In our neighborhood, he was bullied by boys who called him retard and who shoved him to the ground. We pleaded with Richard not to leave the court we lived on, but sometimes he did, whether from a lack of memory or his need to find a friend. He felt lost and adrift. He was often sad. He cried. We took Richard to see his first psychiatrist. His difficult journey was just beginning.
He was initially diagnosed with clinical depression and prescribed two antidepressants, in addition to an ADHD medication. During the weeks that followed, his mood seemed to improve, and we all breathed a sigh of relief. But the reprieve was short-lived. New symptoms appeared. He talked rapidly—often, he ranted, cursed, or yelled. He couldn’t calm down. Hours later, Richard might dip into depression; his countenance turned flat; his shoulders drooped, and he radiated pain.
His diagnosis was updated from clinical depression to rapid-cycling bipolar II disorder. Following frightening, out-of-the-blue suicide threats and manic episodes, he was hospitalized twice at the age of sixteen—once for a week, and another time for two weeks. It felt like Richard’s world had imploded, and ours had, too.
When we visited him daily at the psychiatric hospital, he tearfully pleaded with us to take him home. He insisted he would be good, and that the hospital was full of crazy people. I can still picture him crying hysterically while he pulled on his mom’s arm to stop her from leaving. That is a memory I wish I could erase. Our love and prayers for him did not stop his suffering.
At the same time, my own dormant depression reared its ugly head. I began to self-medicate with alcohol every Friday night. Of course, that only made matters worse. But I sought and found oblivion in my pint of Jack Daniels. My kind older sister patiently listened to my “drink and dial” phone calls for years. A debt I can never repay. Ditto for my wife and daughter.
I’d relentlessly tell her about all things Richard—the endless agony and pain. It hurt deep inside that Richard suffered. And I did not know what to do. I’d start the call sober, but hours later I was just all that more depressed and useless. Those were dark nights.
At school, he was failing his classes. Even with his learning disabilities, he should have fared better in school. The school’s historical testing showed him to be in the low normal category. But a lot had changed, and the school suggested we get more extensive testing done by a neuropsychologist. We did. The results were unexpected. Richard tested in the low normal range in one area only: verbal communication. This contributed to the universal perception that he functioned the same as other kids his age. But in every other area, he tested very low. His combined IQ score was fifty-nine. Intellectually, Richard’s deficits were greater than just learning disabilities. As a result, from then on, he was labeled as mentally challenged, whereas in today’s time he is labeled as developmentally disabled.
We were incredulous that Richard could get through eighth grade before anyone discovered that he was developmentally disabled.
The following ten years were a torment for him—devoid of rainbows, with trauma after trauma, often day after day. Some days he’d make the van driver, who ferried him back and forth between our home and his day program, stop the van and let him out. He might be miles from home, with no idea at all where he was. Whoever was the closest, often his sister, had to go and find him. He might be cursing and yelling, or he might be sitting on the edge of the road crying, in clear jeopardy of getting hit by cars that were speeding by. Other days, Richard threatened to kill himself. We hid all the kitchen knives, and I hid some of my tools. What else could we do? I didn’t know.
Friends and family commented on how my wife and I were remarkable parents to handle what we had to with steady composure. Nothing was further from the truth. We stumbled through it; we didn’t have any choice.
Our wonderful daughter was overlooked and neglected because we were so overwhelmed by coping with Richard. Fortunately, she was and is a rock solid person who handles crises with aplomb.
Much of the time, Richard was angry. He was furious at himself, at us, and at the kids who bullied him. He walked up and down our neighborhood streets yelling, cursing, and gesticulating. Neighbors were concerned enough that they called the police. Often he called 911 himself and then hung up the phone. The sheriff’s deputies came to our house a dozen or more times. They were always kind and most of the time, they helped calm Richard down.
Richard and I began engaging in physical confrontations. When he started to unravel at home, I tried to make him stay in his room to prevent him from going out in the neighborhood. These episodes were agonizing for everyone, with screams, threats, and hysterical cries. My wife and daughter tried to separate us during these intense confrontations. Once he took a knife from the kitchen and threatened me. But I knew he would not harm me. And he didn’t. But these were awful experiences. Words cannot adequately convey the torrid passions of those struggles. I was in despair. I looked down from the edge of a terribly high cliff.
Looking back, I deeply regret restraining Richard. At the time, I didn’t know what else to do, but those altercations only aggravated matters.
If my wife and I were at work in Atlanta, and he spiraled out-of-control at home, we relied upon his younger sister to help calm him down until one of us could get home from work. In hindsight, it was wholly unfair to ask for her assistance as she was thirteen, and he was sixteen. When he was manic, he was often verbally abusive and sometimes threatening. On a given day, we didn’t know what version of Richard would show up.
Although estimates range from 2% to 3% of our population are developmentally disabled, there is a paucity of public and political discourse about them. Since few of them vote, their voices are seldom heard. Most people know little about them, where they live, how they live, and what resources are available to help them. As a result, we had few strategies to navigate a difficult situation and to help our son.
It took eight years before Richard was finally granted a Medicaid Waiver, which is the Holy Grail that funds day programs and group homes. I spent hundreds of hours researching and pleading on Richard’s behalf to secure the waiver. In the end, I sent a desperate email to the governor’s office and that was the golden key to unlock the door. I am forever in debt to former Georgia Governor Nathan Deal, whose office secured the Medicaid waiver for Richard.
Richard is now thirty-nine years old. He lives in a residential group home with three housemates, and they are cared for by solicitous and skilled people. He attends a day program with his peers and visits us and his sister’s family frequently. His bipolar and epilepsy are well managed by the psychiatrist who has treated him for the past fifteen years.
Richard is a genuinely nice man. We are proud of him. Everyone who interacts with him remarks on how polite and helpful he is. He has difficult days here and there, just like we all do, but he has many more good days than bad.
Have I become a better father to him? Thankfully, yes, I believe so. I still have much to atone for. I wish I could unwind some of those days and replace them. But we can only travel clockwise around the board.
Jeff Hyndman is a retired IT person who lives in an Atlanta suburb with his wife, Ellen, their dog, Carmela, and their cat, Chelsea, who pretty much runs the show. His essays have been published in Change Seven, The Moving Force Journal, You Might Need To Hear This, and Adelaide Books.