Mothers start group for ADHD education, support

When Stephanie Hilber Kautzman was in elementary school in the ’70s and ’80s, there were days she wanted nothing more than to just disappear for a while. If only she could get to a quiet corner in the library, she would be able to think through an idea from beginning to end and not feel so incompetent.

Instead, she muddled through and found ways to overcompensate for the hidden affliction she would someday recognize as

Attention-Deficit/Hyperactivity Disorder.

“At some point I decided I didn’t want kids to feel dumb like I had, so I became a teacher myself. It wasn’t until I had a child who started struggling just like me that I thought, now wait a minute,” Kautzman said.

Soon thereafter, her child was diagnosed with ADHD.

Then, in the fall of 2009, during a leave of absence from her teaching career, Kautzman attended a mothers’ faith-sharing group at her church and was spellbound with the visiting speaker, who’d been invited to talk about the disorder that had claimed heartache within her own home.

The presenter was Jane Indergaard, a nurses’ training instructor at Concordia College. In a mission to help her ADHD-diagnosed child, Indergaard had begun doing research to fill in gaps of information not being supplied by the educational and medical communities, and bumped into some vital findings.

“One of the first (health care) providers we went to told us to Google it,” she said. “We needed practical information. Not the textbook kind of thing but more how you manage the day-to-day living with ADHD, because that’s where the real challenges are.”

Her efforts had led her to an organization called CHADD – Children and Adults with Attention-Deficit/Hyperactivity Disorder.

At the time of her presentation to the mothers, she was contemplating new ways of reaching out to others seeking resources. “Someone had suggested I start something to provide parent training, but all I could think is, ‘I’m sinking. I don’t know how I can help somebody else when I’m drowning myself.’”

When Kautzman approached Indergaard following her talk, a connection was made, and within a year the two mothers were heading up the first CHADD meeting in the area for those dealing with ADHD.

It turned out to be a well-suited pairing of two educator mothers – one of them healthcare-minded – coming together to help other families needing encouragement and information.

“There’s such a gross misunderstanding about the disorder, and I know that from experience,” Indergaard said. “In the last 10 years there’s so much more that’s been studied and understood about ADHD, but that information has not reached the hands of those who deal with it on a day-to-day basis. When I realized that, I knew I needed to start a group.”

Indergaard explained that ADHD is a neurobiological disorder, not a “nuisance disorder” as some believe. According to the latest research, the part of the brain engaged in self-regulation and arousal is hypoactive in those with ADHD.

“The chemicals aren’t getting across the synapse,” she said. “So it does have a biological base, and it’s predominantly hereditary – genetically as inheritable as height.”

As one might expect, and as was the case with Kautzman, more adults are being diagnosed alongside their children. And as more information is becoming available, new distinctions are being made.

Though formerly separated into two categories – Attention Deficit Disorder and Attention Deficit Hyperactivity Disorder – it is now known that the disorder comprises several different forms, each falling under the ADHD umbrella.

They include: predominantly inattentive, predominantly hyperactive-impulsive, a combined type with features of both, and a fourth category, “not otherwise specified.”

Though more females have the inattentive type and more males the impulsive, there are some of each gender in both categories.

Additionally, the inattentive type – the form Kautzman and her child have – is harder to diagnose. “These are the kids who get through school and people think they’re lazy, and later they find out there was an attention-deficit problem,” Kautzman said.

In the past, many believed the disorder could be outgrown, but that’s simply untrue, Indergaard said. “Hyperactivity decreases in adolescence, but now we know it’s a chronic disorder, a lifespan disorder, and that most untreated adults will have an anxiety or depression disorder, or an issue with substance abuse.”

After examining eight different “life domains,” such as marriage, job longevity and college, Russell Barkley, a pioneer in current ADHD research, found each domain is impacted in those with ADHD.

For example, very few with ADHD who remain untreated will graduate college. “And yet, if you are treated, the statistics go very much the other way,” Indergaard said.

In large part because of the tendency to mark the disorder as behavioral, progress in helping those with ADHD has been slow, according to the women. This stems from the view that since behavior can be controlled, self-will is all that’s required to correct ADHD.

“The reality is, if these kids could try harder they would, and there’s probably no one trying harder in their classrooms,” Kautzman said. “They’re suffering physically, emotionally and mentally. And brains are as unique as our faces, so if no two facial features are alike, our brains don’t function the same way either, and yet we have this societal expectation that we all learn the same way.”

The hidden nature of the disorder is also partly to blame.

Offering a visual explanation, Kautzman said to imagine a child in a wheelchair asking a custodian to shovel a ramp so he can enter the school building safely. The custodian says the stairs need to be cleared first so the majority of students can enter first. The child replies, “But if you shovel the ramp first we can all get in.”

“In a society that values equality, why is it so difficult to think we’re giving the kid in the wheelchair an advantage by letting him go up the ramp, but we’re telling these kids whose disability we can’t see, ‘You can do it. Just try a little harder.’ ” Kautzman asked.

Indergaard added that many children with ADHD will continually experience lack of success and develop an emotional shell to protect their self-esteem.

“They’re thinking, ‘I would rather be the class clown or tough guy than the stupid guy,’ so we’re seeing patterns like that.”

Not that ADHD should be an excuse for challenging behavior. “It doesn’t get people off the hook for having to be accountable,” she noted, “but you have to have a disability perspective and understand some supports need to be put into place while you’re teaching that child to self-manage.”

It’s a societal and public health issue, affecting more than just families who deal with it every day.

According to 2011 statistics from the Centers for Disease Control and Prevention, nearly 1 in 10 of our country’s population has some form of ADHD – about two kids in a classroom of 20.

Though many possibilities for treatment are discussed in CHADD meetings, the organization is adamant about not promoting anything that’s not scientific-based or well-researched.

CHADD can provide tools to parents and others. Because children with ADHD respond to discipline differently than a typical child, parental approaches often need refining.

Though the monthly support groups started out with a solely educational lean, they’ve turned into a place for processing the emotional aspects of ADHD as well. “You give the education but inevitably people will vent and talk and share,” Indergaard said.

Currently, meetings are open to the public and have brought in anywhere from six to 40 participants. “People are hungry for this information,” Indergaard said, noting that after every meeting, she’s been approached by someone expressing gratitude.

“I want parents to know there’s hope, there’s help, there’s a lot more that’s known and we all have to advocate for one another.”

For more info

Started nationally in 1987, CHADD now has over 20,000 members and 200 chapters, including the local Red River Valley Satellite of CHADD. To learn more, visit http://www.chadd.org or call (701) 367-5108.

Tags: shesays, health