The disorder is a neurobehavioral one, and many Americans are biased against diseases and disorders they can't touch. If it’s not a broken arm or a rash but a disorder of the brain, it doesn’t exist for them. Spotty performance in school and in life is so AD/HD. It's not that those with the disorder can't pay attention; it's that they can't screen out which stimuli to pay attention to and which to put on the back burner for a time. When highly motivated, they can seem to have a superhuman ability to focus. But many tasks that they don’t enjoy require integrating multiple mental functions, and in AD/HD, executive function is impaired. Executive function is that part of your brain that helps you organize and integrate the multiple things you are doing at any one moment. It's also the part that says, "Hey—ignore that random thought that just popped into your head. You can think about it more once you've finished this other task that you’re working on."
My son Neil, now 10, had his severe AD/HD diagnosed at the end of 1999, when he was almost 5. My husband, Ed, had his own milder AD/HD diagnosed in 2000, and my father-in-law, A., had his severe AD/HD diagnosed in 2001. Life was hell here before they all began taking medications and seeing therapists. I don't know how my marriage survived. I don’t know how we all survived.
Neil is a very bright child who's now gentle and sweet and making nearly straight A's in school, in a self-contained classroom of 6 students, 1 teacher, and 1 teaching paraprofessional. That wasn’t always the case. Just about 18 months ago, he was stuck with a psychiatrist who gave him far less medication than he needed, and he was often refusing to do work in his classroom of 25, sometimes even hiding under his desk when he got overwhelmed, refusing to come out. His grades were low, even though we knew him to be quite smart.
We knew there was something different about Neil from the beginning. He had tantrums, even as a baby, when we had to change activities. Transitions were almost physically painful to him. We learned to gradually ease him into changes. You know how toddlers have tantrums when things don't go their way? Neil's tantrums were hairy fits. Though Neil was Ed's first child, I had 11 years' parenting experience on him. I had a daughter from my first marriage, so I knew for sure that Neil's fits were over the top. If Neil's toys weren't doing what he wanted them to do, he could get angry enough to scream for 2 hours. Ed and I stayed perpetually exhausted from those fits. We stopped having friends over because of those uncontrollable fits of anger. We never could be sure what would set him off. Once, when we did dare to have friends over when Neil was about 4 years old, I paid for it afterward. As I was trying to rock Neil in a rocking chair to calm him for bedtime, he hit me and screamed for at least 15 minutes. All the excitement and stimulation of the day had been too much for him, and he had to let it out.
That child just could not sit still. When he was a preschooler, he was at home with me while I worked. By the time Ed would come home from work each day at around 6 p.m., Neil would have started and left unfinished at least a dozen art projects. He ran constantly—he never walked anywhere. He could literally climb walls. And he hardly stopped to breathe when he was talking, which was all day, every day. Neil never looked happy, even when his actions showed that he was enjoying himself. Ed and I have always said that Neil was born a cranky old man.
During those horrible years before Neil's diagnosis, Ed's and A's undiagnosed AD/HD was multiplying the chaos by several orders of magnitude. Ed would be talking with me, and his attention would wander off, meaning that he’d miss chunks of what I was saying. I didn't know then that he just couldn't pay attention to me; I thought he didn't want to. This made coparenting extremely difficult; I often had to keep Ed on task while he was trying to parent. Having to be your partner's coach can be toxic to your marriage.
Meanwhile, A. would have the same kind of temper tantrums that toddler Neil had—but A. was in his early sixties. Why did this affect us? We live in an intergenerational home: We have the upstairs and A. and my mother-in-law, D., have the downstairs apartment that Ed, a talented cabinetmaker, created in our house. Once, when my daughter Rebecca was a teenager, A. scared her out of her wits. A. and D.'s dog Rusty had escaped from the back yard and was roaming the neighborhood. A. bellowed for him a few times, and then, frustrated because Rusty didn't want to come back to an angry-sounding owner, began repeatedly beating the side of our house with Rusty's metal leash, screaming, "Rusty! Rusty!" A's short, but he's a hefty man, and his anger was visceral and quite intimidating. He's also been known to beat on a blender when he can't get it to work. Scary.
Then there was the night, back when Neil was a baby, when A. came upstairs to get his and D.'s laundry from the washing machine that we all shared. He began chatting in the kitchen with Ed. The conversation stretched on for a while, and I was trying to put Neil to bed just a few feet away. (It's a small house.) I leaned around the door jamb and said, "Could you guys please keep it down a bit? I’m trying to put Neil to bed." A. charged me, his arms pumping as he stomped toward me. "Who the hell do you think you are, telling me to be quiet?!" he shouted in my face, while baby Neil lay screaming on the changing table that I was standing next to. I was scared speechless. I thought A. was about to punch me.
Neil, Ed, and A. would each say whatever they were thinking at the time, AD/HD having taken away the mental brakes that most people have. This often resulted in hurt feelings, anger, or embarrassment—or all three. Each of them had frequent misunderstandings with people outside the family too, because people with AD/HD often have trouble understanding others' facial expressions and body language. This caused Ed and A. difficulties at work and resulted in Neil's being picked on by children at school. It also meant that D. and A. argued constantly ... and, I have to admit, Ed and I argued constantly.
Ed now takes Metadate-CD for his AD/HD. Neil takes that for his too, plus Lexapro [updated] for his depression. A. takes Wellbutrin. Because of A's high blood pressure, he can't take most of the meds prescribed for AD/HD; he doesn't like some of the side effects of the others. None of the guys are drugged-out zombies. All of them are functioning much better at home and at school or work. You'd never know Neil has a disorder if you didn't live with him; he comes across as a normal, pleasant, if fairly serious, 10-year-old. He even smiles a lot now, and he has good friends. We have no doubt that he’ll go on to make wonderful contributions to the world. There are very few huge, explosive fights around here, upstairs or downstairs. Ed and I have an excellent marriage. And because Ed can focus with the meds onboard, he has been able to learn enough people skills that he was recently promoted to foreman at work, the first time in his life that he's held such a position. That's done wonders for his self-esteem. Even though A's AD/HD behaviors can still drive D. bats, his anger's under control, and she likes that, especially since they're both retired now and are together most of each day. A. and I even get along now.
Here are some readings that may help you understand:
- Go here (be sure to read the section "What are the Executive Functions?") to read about executive function.
- Go here and here to read about AD/HD.
- Go here to experience what AD/HD feels like. Scroll way down to the link that reads: Try it yourself. Experience an auditory distraction. You'll get quite an education.
- In the United States, if a child has an official diagnosis of AD/HD, the public school district is required to give him or her appropriate education, which begins with the development of an individualized education plan (IEP). See this.
Research has shown that if a child can't learn all he or she needs to know and has impaired social relationships, he or she is more likely than children without AD/HD to one day self-medicate with alcohol or street drugs and is likely to have serious lifelong difficulties in holding a job and maintaining close relationships. (See, for example, "Attention deficit hyperactivity disorder [ADHD] and substance use disorders," JJ Wilson and FR Levin, Current Psychiatry Reports 3:497–506, 2001.) Do parents want to condemn their children with AD/HD to that? If not, they should at least consider all the treatment options. And they should know that my family and I have considered all the treatment options and found the ones that work for us ... and that they can't presume that what works for them will work for us or that what they've read in a layperson's book and never tried will necessarily work for us.
I have amassed a mountain of bookmarks to information on AD/HD. Please write me at email@example.com if you’d like me to send them to you.
And if you're surviving in a family where there's AD/HD, you can buy survivor merchandise.
Updated: Jared's AD/HD was diagnosed in 2006, when he was 5. He has been taking Metadate-CD ever since. He began third grade in the fall of 2009, and we then began the long process toward an IEP that begins with a request for assessment by the school.
Also, we have long suspected that D., Ed's mother, has mild AD/HD, but it has not been diagnosed or treated because she has learned enough coping skills over the years on her own.
*Here, I am following the style of the American Psychiatric Association, which uses the slash to indicate that the hyperactivity part of AD/HD does not occur in all cases. There are several subtypes of AD/HD, according to the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision: (1) attention-deficit/hyperactivity disorder, combined type; (2) attention-deficit/hyperactivity disorder, predominantly inattentive type; (3) attention-deficit/hyperactivity disorder, predominantly hyperactive-impulsive type. Neil and A. have type 1, and Ed and Jared have type 2.
AD/HD ADHD ADD Ritalin Metadate-CD Wellbutrin Lexapro depression anxiety neurobehavioral executive function impaired distracted EditorMom