Living With ADHD
When a child suffers from ADHD, everyone around him suffers, too. Here’s one family’s story of struggle—and ultimately hope—told in their own words.
“Can’t you control him?” Jessica Harstead flushes with frustration, recalling the stranger on the airplane who accosted her with that question, following the tantrum thrown by her then two-year-old son, Matthew. It wasn’t an isolated incident: Because of Matthew’s frequent outbursts, the Boulder, Colorado, mom wearily contended with glares and terse asides in the grocery store, at birthday parties, and even during Sunday school at church. But for Jessica, age 34, and husband Lew, 43, the hard part wasn’t dealing with public opprobrium. It was giving an honest answer to the question “Can’t you control him?” No, we’re sorry, they would think. We can’t.
Matthew, now nine, suffers from attention deficit/hyperactivity disorder (ADHD), a condition that afflicts up to 5 million American children. ADHD is often misunderstood: Many people deem it a simple focus problem or even a way to pathologize kids’ natural exuberance. Hardly. It’s a debilitating inability to concentrate or to control impulses and can be accompanied by a host of other symptoms and disorders—each of which can challenge a child and test the people who love him. Here, the Harsteads share their tough—but rewarding—journey.
Something Is Amiss
From the beginning, Matthew’s behavior differed strikingly from that of his older brother, Jackson, now 11. Jessica, a stay-at-home mother (pictured above, with Matthew), and Lew, an attorney, couldn’t help being concerned.
Jessica: As a baby, Matthew didn’t care if he was held or swaddled, kissed or hugged. He didn’t laugh at a silly face. It disturbed me, but our doctor said, “Give it time.”
Lew: We knew something wasn’t right.
Jessica: Once Matthew turned two and was moving around on his own, you couldn’t tell him, “Stop!” It didn’t work. He was bouncing off the walls. Some people told me I was worrying too much. “Oh, it’s just the way boys are,” they said. Their reactions made me wonder: Was I expecting too much of Matthew?
Lew: Bedtime was a huge struggle. Many nights Matthew was up until 11 p.m. or later. He was wired. He liked to hip-check me or slam his body into my legs. We would have to do that for an hour just to calm him down enough so that he could fall asleep.
Jessica: When he was three, I expressed my concerns again to our pediatrician. He told me to be a “better parent with stronger boundaries.” Meanwhile, Matthew is climbing up the exam table, ripping off the paper, and won’t stop interrupting us. At the time, I felt defeated. Later I found a new doctor.
Once he started preschool, Matthew’s issues became even more glaring. During structured activities or lessons in which Matthew was expected to sit quietly, he instead rolled on the floor, chewed on his clothes, and drooled. His moods swung from elation to fury. And at age four Matthew wasn’t able to identify a single letter or number. Jessica and Lew were at a loss.
Matthew’s preschool teacher pointed out to the Harsteads that excessive chewing and drooling are symptoms of sensory processing disorder (SPD), a neurological dysfunction in which the brain has difficulty integrating the information gathered from the five senses. Doctors confirmed the SPD diagnosis, and three times a week for the next year Matthew attended occupational therapy sessions.
Jessica: SPD therapy gave Matthew much better control over his limbs. And he was so much more with it cognitively that we hoped we had fixed the issue. But our optimism didn’t last. He still couldn’t sit at the dinner table. You would say, “Matthew, brush your teeth and put your shoes on,” and he would simply wander around aimlessly. He couldn’t control his anger. One day he chased another boy with a snow shovel.
Donna Jones, Jessica’s close friend: Matthew isn’t belligerent, though. He has a good heart; he just doesn’t have a filter.
Matthew: I told my mom I felt like a baby bird that fell out of its nest and is flapping its wings. That’s what my mind felt like all the time.
Jessica: By the time Matthew turned five, we’d been told he had autism, Asperger’s, bipolar disorder, oppositional defiance disorder, pervasive development disorder—you name it. Each time, I would freak out and read everything I could about the condition before realizing there was a piece of the puzzle that didn’t fit. And we would be back where we started. It was a very hard time—coping with the constantly changing diagnoses, plus taking care of Jackson and Matthew’s little brother, Thomas [now six].
Lew: Some days Jessica was just fried. Her mood wouldn’t improve until the kids were in bed.
Jessica: Lew’s mother was one of the only people who didn’t see a problem with Matthew. She thought Lew and I were torturing ourselves with all the doctor visits. But I couldn’t stop asking for answers. I was so fearful about Matthew’s future—I felt we were slowly losing our child.
Finally, a Diagnosis
In February 2007, when Matthew was in preschool, the Harsteads took him to a pediatric psychiatrist. In addition to SPD, Matthew was given a diagnosis of ADHD. The news came as a relief to his parents—at first.
Jessica: I was happy to have a name for Matthew’s ailment that seemed to fit. We also deduced that Lew’s mother, who passed away in 2010, may have had it. [The disorder is thought to have a genetic link.] But things got tricky once the doctor recommended that Matthew go on medication—specifically Adderall. The drug had worked well for others, and it could potentially improve and regulate the system in his brain that handles impulse control. But we also knew it could temporarily wipe out his appetite and disrupt his sleep. That scared me.
Lew: I was concerned about the dangers of placing a child so young on a stimulant. And was the medication really a solution? Or just a way of papering over the problem?
Jessica: I think I lost eight pounds in 10 days worrying about it.
Lew: We ultimately decided to do it.
Jessica: But we gave him Adderall only twice. Both times Matthew went into rages the instant it wore off—screaming at the top of his lungs, saying he wanted to hurt someone. With another drug, Matthew started hallucinating. He was sure he saw people in his closet, so we immediately stopped that medication as well. I was willing to try other drugs, but first I wanted more insight into Matthew’s condition.
Four Things Wrong
Hoping to learn why six-year-old Matthew wasn’t responding well to medication, Jessica took him to see Kytja Voeller, a pediatric neurologist in Boulder. Dr. Voeller confirmed the diagnosis of ADHD and found that Matthew suffered from expressive developmental language disorder, meaning he had difficulty putting together complex sentences and was at high risk for dyslexia.
Jessica: Four disorders. That leveled me. Kids with ADHD typically have several other conditions as well, but I didn’t know that at the time. I asked Dr. Voeller, “Is he ever going to be able to function as a normal member of society? Will he ever hold a job or have a relationship?” She told me we would have to wait and see.
Dr. Voeller: I was focused on getting Matthew urgent help. He would go very quickly from being cooperative and quite thoughtful and charming to agitated and frustrated. He needed medication.
Jessica: She prescribed Daytrana, a transdermal patch that we stuck on his hip every morning. It worked right away.
Dr. Voeller: Matthew was able to slow down to have a conversation. He was able to self-regulate, not just react.
Jessica: I remember thinking, Oh, my goodness, he’s quiet. And sitting still! The stillness was a revelation.
Lew: We were able to give Matthew more than one simple instruction at a time and he could do it. We could see his confidence build. Here was this great, sweet kid who could finally harness his own energy.
Jessica: There were side effects, though. The patch killed his appetite. Matthew would go from 7:30 a.m. to 6:30 p.m. without eating. I had to load him up at breakfast with protein-packed foods to boost his energy—bacon, sausage, pancakes made with protein powder. Sleep was challenging, too: The patch kept him awake. We started giving him melatonin to make him drowsy. And playing with Legos helped him, too.
Matthew: Bedtime is like a war—settling in versus my energy. When I play Legos, my eyes get really tired, so they almost close.
Jessica: Thomas was too young to notice that Matthew had different rules at bedtime. But Jackson did. Fortunately he understood that we needed to make accommodations for Matthew and that it would shake out in the end. So if Matthew got to stay up to watch extra TV, Jackson was allowed to go to a Colorado Rockies baseball game with Lew. He’s been to more games already than I have in my entire life.
The Bills Add Up
After a year of daily therapy with Dr. Voeller, plus weekly visits with a psychologist, Matthew was doing better than ever. However, all that assistance came at a hefty cost.
Jessica: We spent about $100,000 on medical bills for testing, doctor visits, SPD therapy, and more. Our insurance hardly covered anything.
Dennis Wellen, Jessica’s father: I took money out of my savings to pay for Matthew’s therapy with Dr. Voeller. It cost thousands of dollars, but I was grateful such professional care even exists.
Jessica: It’s not just money—dealing with ADHD takes a lot of time. People think you give meds to someone with this condition and he’ll be fine. But it’s so much more complex than that. Once Matthew began first grade, I had lots of meetings at the school to explain his issues to his teachers.
Donna: I was a parent volunteer in the first-grade class attended by Matthew and my son, Brett. I noticed Matthew kept distance between himself and the other kids. He needed a lot of room, and he was always fidgeting, always pulling on his socks.
Jessica: Matthew was permitted to have things that would help him succeed in the classroom: gum and special plastic tubes he could chew on, and hand fidgets—those are tactile objects he could squeeze to calm down. There was a whole list. Plus, he didn’t have to sit next to other kids if he didn’t want to. The teacher never stood in front of the class and explained why he had these things or why certain rules didn’t apply to him. There was no need to. The kids accepted him.
Donna: I told Brett, “Matthew’s brain doesn’t work like yours.” And he was fine with it—that was all he needed to know.
Hitting a Roadblock
Matthew did well in the first grade. Despite his dyslexia, he was reading 1½ grade levels ahead of his class and excelling in math, but his anxiety spiked in the second grade as he struggled socially.
Sarah Bennett, Matthew’s second-grade teacher: He was frustrated with his peers, having trouble communicating with them and worrying constantly.
Jessica: Another student didn’t like Matthew and told other kids not to play with him. It started having a huge effect on Matthew. He was so angry in the mornings, and it was just horrible.
Sarah: After about four months, the situation in school improved. Jessica and I frequently talked about it, and I tracked Matthew every day at recess: Is he having fun? No fun? Is he with a friend? Alone? I would take that information to Jessica, who would share it with Matthew’s therapist.
Jessica: I tried to let Matthew handle the situation himself, but he couldn’t. It rocked his world. Anxiety can be a side effect of Matthew’s medication, so we decreased his dosage by five milligrams [about 25 percent] to see if that helped.
Sarah: That’s when I saw Matthew’s ADHD for the first time. The next day he seemed really talkative and active—like he was having a sugar rush. He couldn’t focus, and his test scores suddenly dropped. He chewed so intensely on things that he accidentally flicked saliva on other kids.
Jessica: Ten days later, we increased his dosage back to where it had been.
Lew: Without medication, Matthew just isn’t able to function in a socially acceptable manner.
Jessica: I asked Matthew if he knew why he needed to wear his patch, and he said, “Because I need to be better.” I said, “No, don’t think that! It’s not you that needs to be fixed—it’s the way your brain affects your behavior.” It broke my heart.
Signs of Improvement
The summer of 2010 signaled a change for Matthew and his family. His anxiety lessened, and he became noticeably more confident. Today the Harsteads feel they’re finally on the other side of Matthew’s ADHD. He still takes mostly the same medications. Unfortunately the side effects, such as the lack of appetite, persist. Despite Jessica’s best efforts, Matthew is, she says, “the skinniest boy in his class.” Every two months, he visits his therapist, and every three months he checks in with Dr. Voeller. But in many ways Matthew is a typical third grader, racing through the house with a Nerf gun, playing video games, and enjoying time with his friends.
Jeff Jones, Donna’s husband and Matthew’s Little League coach: Last year he began interacting better with his teammates, and they responded to that, even inviting him to birthday parties. And he really came into his own as a baseball player—listening more, focusing more.
Jessica: I look back on Matthew’s horrible second-grade year and feel so fortunate that it never strained Lew’s and my marriage. Matthew’s behavior pushed me, it pushed Lew—but it never pushed us apart.
Brett Jones: When someone bullies me on the playground, Matthew will come over and say, “Hey, don’t bully my friend.” I love that.
Jessica: ADHD is a part of Matthew, but it no longer defines him. He’s my sweet, sensitive, soulful boy. Funny, he was never affectionate as a baby. Now he’s quick to give me hugs.
Sarah: Matthew’s current teacher has said nothing to me about him this school year, which to me means, “Wow! He’s maturing and happy!”
Dr. Voeller: Matthew will do just fine. Of course, a few years into treatment, some parents make the mistake of thinking, Oh, it’s all fixed.
Jessica: I know we’ll never be “done” dealing with ADHD. For example, I can’t drop Matthew off for a sleepover without warning the other parents about his condition. You can’t just say, “Here’s my son, with his Baggie full of meds. Oh, and do you mind giving him a second dinner at 9 p.m., because that’s when he gets hungry?”
Lew: Recently Matthew didn’t wear his patch. He was so worked up, when I went to hug him, he head-butted me. I saw stars.
Jessica: There are still instances when Matthew’s energy saps mine. Lew will come home from work and I’m in a terrible mood and need him to take over.
Jackson: I barely ever think about Matthew’s ADHD. But sometimes if my friends and I whisper to each other and laugh, Matthew will get really angry and think we’re laughing at him. I have to calm him down and say, “It’s not about you.”
Jessica: I can’t tell if Thomas has ADHD, too, or if he’s just influenced by Matthew. He doesn’t seem to have an off switch. We haven’t had him tested yet. But if we have to go down that road, we will.
Matthew: My brain works at a different speed. It’s like a helicopter. That’s why I don’t pay attention very well and have hyperness.
Jessica: Not long ago, Matthew pushed past a couple waiting in line at a restaurant and didn’t say, “Excuse me.” The woman gave me a dirty look and said that he needed to learn manners. Instead of apologizing, I said, “Actually, my son has several different disorders, but he has made such progress. We are so proud of him.” I was trembling. But I needed to defend Matthew—and, well, the whole family. After all, he has come so far! For the first time, I’m truly excited to see what he’ll do with his life instead of fearing what comes next.
For more information on ADHD, contact the National Resource Center on ADHD (help4adhd.org) or Children and Adults With Attention Deficit/Hyperactivity Disorder (chadd.org).