KOK Edit: Your favorite copyeditor since 1984(SM)
KOK Edit: your favorite copyeditor since 1984(SM) KOK Edit: your favorite copyeditor since 1984(SM) Katharine O'Moore Klopf

Thursday, February 07, 2008

Living with AD/HD: "I Have Always Felt Different"

For "civilians"—those who haven't lived with attention-deficit/hyperactivity disorder (AD/HD)—to accept that AD/HD is real and debilitating without treatment, there must be much more research like this.

What's my interest in this issue? I'm the only person in the House of AD/HD who doesn't have the disorder, and I get tired of hearing all of the naysaying. AD/HD doesn't exist? It's a disorder made up by parents who'd rather control their children by giving them medication than by working hard at parenting? Yeah, right. I have a 24-year-old daughter from my first marriage who doesn't have AD/HD, and let me tell you, parenting my two sons from my current marriage who do have AD/HD is much harder, even with medication and behavioral modification.

Researchers Mona Shattell, Robin Bartlett, and Tracie Rowe decided that what it's like to live with AD/HD is best told by those who have it.

Barlett told me, "I thought that people who had lived a life affected by AD/HD had much to teach us. I chose to interview college-aged and college-enrolled students because they had achieved some success (as evidenced by their being in college). I thought, What better way to find out what works with children with AD/HD than to speak with people who had achieved some positive outcomes. Of course, being college-enrolled is only one small measure of success, but it seemed to me to be a great place to start."

And Shattell analyzed the study participants' stories, which is her area of expertise. She's written on a variety of topics, most of them related to mental health and health care. "My overarching interest is to share untold stories in meaningful and (hopefully) powerful ways—stories of real people living real lives who often struggle for and deserve something better," she told me.

Their article, just published in the Journal of Pediatric Nursing, reports young adults' descriptions of their AD/HD childhood:

Getting along with parents was central to these young adults' childhood experiences of ADHD. In their view, children with ADHD have more trouble than others. One [study] participant noted: "It is also coming of age, every kid goes through this, and getting to know yourself and not being afraid of who you are ... so, it's rough on anyone, but it tends to be a little rougher on people with special needs." In describing the impact of their ADHD on family life, participants recalled individual frustration, verbal arguments with parents and siblings, and, in the words of one participant, "mass chaos fights."

Fighting with parents was often caused by the failure of the child or the adolescent to perform chores within the expected time frame. Because of their distractibility and hyperactivity, participants said that they had difficulty completing tasks, causing problems with their parents. Parents' encouragement to do various household chores (such as laundry, vacuuming, and "keeping my room clean") often resulted in verbal altercations. One participant recalled,

Doing chores and stuff at home, I always had a problem getting things done. I never really finished anything. I always started things and then I'd go off and watch TV. I got distracted very easily doing chores. I don't know if it was voluntary distraction ... but we definitely fought a lot about getting chores done.

Another participant said,

I like to read the newspaper at home on the weekends with my mom there. Sometimes I get so focused on the newspaper or what I'm doing that I don't want to do what my parents have asked me to do, like the vacuuming or the laundry. 'Cause they want it to be done, they expect it to be done and if I haven't done it, then I have a problem. ... Doing things for my parents and being aware of what needs to be done around the house, that's the only times it really gets to me or hurts me.

These young people said that even as children, they felt different from everyone their age, and their classmates were hurtful in emphasizing their difference: "Other kids at school would call them retarded, slow, or stupid, and then ostracize them." And the very adults who were supposed to be helping them at school were sometimes cruel:

Participants did not want to be singled out by special education or resource teachers and preferred these support persons to be discrete. One participant told about a time when her name was announced over the school's intercom system to "report to the special ed office." Another participant told about a coach who called him stupid because he could not understand the instructions the first time they were given.

What was it like in the classroom for these young people when they were children?

They had trouble listening, paying attention, completing homework, and staying on task; they were forgetful, had trouble standing still, and could not focus; they daydreamed—staring blankly into space. Deepening their difficulties in school, many participants had comorbid learning disabilities. As one participant said, recalling the fourth grade, "In class, I had a kind of lag time, 'cause in between me figuring out what had been going on, the entire class moved on, so I missed out on information. So that was one of the biggest things—missing out—taking a longer time to get the entire idea." [Participants said that even] after treatment began, ... [they faced] ongoing challenges, albeit less severe.

AD/HD adversely affects personal relationships too, including friendships, both because those with AD/HD often have poor social skills and because others perceive their differences. One study participant said:

I didn't have that many friends ... I was outcast and I had low self-esteem. I dropped out of my eighth grade for a year and a half 'cause I was so unhappy there. I think it was more of a self-esteem issue and the respect. It may have had something to do with the ADHD, them finding out ... people looked at me differently, like, oh, she has a disability, oh, she's stupid, she's retarded. I mean ... I just don't get things as easily as others. And I don't think they understood that.

Maybe these young adults' stories will at least get civilians thinking that AD/HD just might exist in children. But will they think it's only a childhood thing, something that kids grow out of? Let me tell you this story:

I love my husband, Ed, with all my heart. He is sweet, kind, patient, silly, charming, and attractive. He's a terrific father to our sons. I didn't set out to change him. But if I had not pushed him to see a therapist—when things got very difficult early in our marriage—because I thought he might have AD/HD, we would not still be married. We've made it through 14 years together so far. And yes, he knows that I'm writing this about him, and he's okay with it, because we believe that when we tell our story, we help clear up the misunderstandings about AD/HD, at least in our corner of the world.

Neither he nor I knew when we married that he has AD/HD, the inattentive type (without hyperactivity). Both of his parents have it too, which they didn't know back then either, and our 13-year-old son has the combined type (both hyperactivity and inattentiveness). And we now suspect that our 6-year-old son has a mild form of the inattentive type, without the hyperactivity.

Because of his AD/HD, Ed has an extremely difficult time juggling the various life spheres that many of us must juggle—relationship with a life partner, child rearing, work, leisure time. He also has a difficult time remaining focused on whatever task he's doing. To stay on task, he hyperfocuses. When he's working—and he's working here at our home because he's self-employed now—he can forget that I exist. I become a part of the room—say, the curtains—and, to his brain, not a stimulus worthy of notice. When he comes in at lunch (I'm self-employed too), he's all work and no play, talking with me only about work-related stuff. No "Honey, I love you"—and he's normally a very loving, demonstrative guy, which is one of the reasons I married him. When he's with me mentally, he's still often thinking obsessively about what he has to do for work, lest he forget something important. Once we had children together, I got lots less attention from him. Yes, I know that children take a lot of time and energy, but parenting ours sometimes seems to suck his brain out, leaving little of it for me.

With medication and through learning coping skills in therapy (which is still ongoing after all these years), his life-arena balancing skills have gotten much better, though they won't ever be up to the level of those who don't have AD/HD. He calls his cell phone his brain, because without its alarms and reminders, he's lost. He even has to set alarms to remind him to spend time with me. He hates that he needs to do that, because he thinks it should come naturally to him because he loves me. But he knows that if we don't spend quality time together, I become depressed and angry and withdrawn. (Yes, I do my part to initiate quality time with him, but I don't want to be the only one doing so.) Without those reminders, he does think about me, but then something else will catch his attention and he'll head off, good intentions completely forgotten.

I also didn't set out to change my in-laws. But if I hadn't insisted that something was wrong there too—lack of boundaries with us, things blurted out constantly without thinking how they'd affect us, inability to remember promises they'd made to us, inability to have forethought and be considerate of us, and on and on—Ed's and my life together would've been hell, because his parents live in our home. My father-in-law has taken medication for several years now for his diagnosed AD/HD, and both he and my mother-in-law have learned, with my coaching, how to be considerate. These days, they're indispensable to us, and we are to them too. They help us out by cooking some meals for us occasionally and running errands for us while we're working, and we help them with technology that they don't want to learn and with things like paperwork.

If I'd known back in 1992 that I was moving into the House of AD/HD, I might have run screaming away. But I didn't know then, and I fell in love. And it has been worth it to do the hard work with Ed, with our sons, and with his parents. Though some days I can easily imagine myself pulling my hair out in frustration, the rest of the time I can't picture life without any of them. They each have so much to give me and everyone else they meet.

I want all of the civilians out there to know that AD/HD is real, that it can be treated (though not cured), and that those with it are worthy of our kindness and understanding. The research by Shattell and colleagues is an excellent step toward that goal. All of you others out there who research AD/HD, are you listening?



Anonymous said...

Hmmm...Heartbreaking, and food for thought. Thanks, Katharine.

Anonymous said...

Wonderful post. I read the article about this too and meant to post something, but I am very ADHD-ish this week with all the political adrenaline, so I'm glad you did.

Anonymous said...

I have never before read such a complete and complex description of what it is like relating to a person with AD/HD which simultaneously explains and accepts it. And is not mealy-mouthed.

I am impressed by the product of your mind, as evidenced by the formidable writing task; and more impressed still with the tone of your heart, as expressed here.

My daughter needs to read this, because she is sick and tired of having AD/HD. She cannot imagine having children because of the genetic potential for having AD/HD children. (That one smarted, the first time I heard her say it, and she knew it, and went on to tell me she held me harmless because I hadn't known before I decided to have a child.) She says she feels so guilty for really not liking other kids and young people with AD/HD (except for one).

It makes me feel pretty lucky she likes me, most days, and tolerates me the rest of the time. Of course, that goes both ways.

I really appreciated this research, because I've long maintained that many of the things assumed to be true of us, are not part of the disorder, but the result of inadequate treatment for it, and of parenting that is sadly uninformed.

Anonymous said...

Both my step-son and I have AD/HD, and it can be a disaster when we get side-tracked off a project. I myself was diagnosed only 10 years ago, and it's been both a blessing and a curse. I have learned to become super-anal because of this disease.

libhom said...

I was able to develop a dual tracking mechanism as a child to deal with my ADD. I'm so lucky that I did.

The weird thing about ADD is that those of us with ADD are a small minority of the population, yet drugs are being given to huge percentages of children. Excessive sugar and caffeine can create behavior that can, on the surface, appear to be ADD. Sometimes, the drugs are given just because kids are being kids.

On the other hand, I know people who really do have ADD who have been helped tremendously by the same drugs. It is sad that some people have mistakenly concluded that ADD is not real because most children diagnosed with ADD don't have it.

The situation hurts people inaccurately diagnosed and threatens people with ADD who may be dismissed or denied help.


Katharine O'Moore-Klopf said...

Hey, Libhom, did you ever realize that you've come out of two closets? I know of folks who are afraid to let anyone know that they have AD/HD because of the myths about the disorder.

libhom said...

I think it is three closets: ADD, atheist, and queer.

The fact that a mostly white male like myself could be part of three groups who are stigmatized in our society is a huge commentary on where this country is right now.

Katharine O'Moore-Klopf said...

This country's damn backward in so many, many ways.

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