‘A misunderstood disorder’

Resources• www.westutter.orgwww.stutteringhelp.orgwww.stutteringhomepage.comwww.stutteringspecialists.org

Robbie Picken was trying to talk about his football season, but struggled describing his position. For 13-year-old Robbie, who stutters, getting stuck on a word is nothing new, but it remains an endless source of frustration. For his mom Debbie, Robbie’s stuttering means constant worrying about how her son will manage out in the world when communicating is almost impossible.

The pair have tried everything—intensive speech therapy, delayed audio feedback devices, yoga, breathing exercises."I had him tested twice neurologically—he had MRIs and brain scans and there’s no other issue. We went this summer to try SpeechEasy (a new device designed to help stutterers) and we had our hopes up so high, but it didn’t do a thing,” Debbie says."I said to Karen (Robbie’s speech therapist), is there anything else we can do? Is there a pill or anything?”

But with stuttering there is no proven pill yet, no cure-all for a problem that strikes 1 percent of the population, primarily boys, and makes the simple act of communicating a daily challenge. Part of the problem with finding a tried-and-true remedy for stuttering is that no one has yet been able to identify what causes the disorder. Plenty is known, however, about what doesn’t cause it.

“People think it’s an emotional disorder, but it’s not. They get confused because emotions can exacerbate stuttering, but they don’t cause it. And the parents didn’t cause it—there’s nothing they have done to make their child stutter,” says Nina Reeves, family program administrator for the National Stuttering Association.

Is it a problem?

For many families of a child who stutters, the problem shows up early, often in the preschool years. Parents may find their child prolonging sounds or tensing up their facial muscles to force out a sound. But because young children are developing their language skills at such a rapid rate, it generally takes a professional to identify what’s normal and what’s not.

“Most kids will go through stages of normal disfluency between 2 and 4 years old, but there are some signs and risk factors that indicate it may be more,” says Karen Czarnik, associate professor in communication disorders at St. Xavier University and a speech pathologist for more than 20 years. If parents see a child struggling or tensing up while speaking, or if there are changes in pitch, it may indicate an evaluation is needed.

And any time parents are concerned, it’s worth it to have the child evaluated."You know your child and you know when speaking patterns are different,” says Reeves."When a child can’t get the word out, you hear it in their voice that they’re struggling or if a child has a reaction to the problem, then the red flag would go up and we’d want to see an evaluation.”

Children ages 3 and up can be evaluated through local public school districts, which offer early intervention therapy as well. Additionally, the schools, local hospitals and universities with speech pathology programs can refer parents to trained pathologists for an evaluation. Because stuttering affects such a small part of the population, however, both Reeves and Czarnik recommend finding a speech therapist who has experience working both with stuttering and with young children.

“Parents have to be savvy consumers. Interview the person to get the feel for what their level of comfort is with this,” Reeves says. Czarnik recommends asking if the therapist is certified through the American Speech, Language and Hearing Association, which would guarantee some experience and education in working with stuttering.

Learning more

Educating yourself about stuttering, often through visiting the comprehensive Web sites offered by several national stuttering associations, can help parents navigate their way through both speech therapy decisions and the emotional difficulties of being a stutterer and a parent of a stutterer.

“Get the facts. There’s a lot of misinformation about stuttering,” Reeves says."Fear comes from not knowing. And find support. This can feel very isolating.”

In spite of the fact that more than half of preschoolers outgrow stuttering on their own, Reeves does not recommend taking a wait-and-see approach."Who wants to wait and see if their child is one of the 20 to 40 percent who don’t recover?” Reeves says."Early intervention can’t be bad. We don’t know what causes stuttering and we don’t know what child will do what, but we do know therapy does help.”

The course of treatment generally is based on the age of the child and the severity of the stuttering. Speech therapy for preschoolers generally includes working with the parents on how to help the child at home and lays the groundwork for working with a child who may be a chronic stutterer. The older a child is, the less likely it is that they will spontaneously recover from stuttering, Reeves says.

Once children reach elementary school age, therapy focuses on strategies to help the child with physical tension, working on communication skills and helping the child with his thoughts and feelings about stuttering.

“When they’re older we’ll work with them to change the rate of speech, pause a little more,” Czarnik says."We do a lot with families. It’s important to help parents learn how to deal with stuttering. They’re afraid. But there are lots of things parents can do at home to increase a child’s fluency.”

Helping at home

One of the most important things family members can do is listen to what the child is saying and not how they say it, Reeves says. Giving advice, for instance telling a child to take a breath, start over or relax, often only makes things worse.

“Don’t say‘slow down, try again’ because that sends a message to a child that they’re doing something wrong … The child will give up and go away. It makes a child more cautious and tense,” Czarnik says."We tell families to keep eye contact, don’t rush them. Sometimes you can acknowledge the stuttering and that it’s hard to get the word out.”

For Robbie, having those around him try to be helpful by finishing his sentences just makes things more difficult."If they think I’m saying a word and they try to guess it, but that’s not the word I was saying, I have to stop and say no and start over again and that’s hard.”

Stuttering is hard, for parents and children."This is such a misperceived and misunderstood disorder,” Reeves says."Know that it’s a process—for the parents as well.”

Liz DeCarlo is the senior editor of Chicago Parent, editor of Chicago Parent Going Places and mother of three, Anthony, Emma and Grace.

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