7/16/11

Medication Therapy

“…the use of medication continues to demonstrate results that are not merely promising but that may prove to be outstanding, even revolutionary.” Without Hesitation: Speaking to the Silence and the Science of Stuttering by Gerald A. Maguire, MD with Lisa Gordon Wither ©2010, p. 8

I am always delighted when one of my students can attend the National Stuttering Association (NSA) annual convention. I have attended five conventions and found them to be of consistently high quality with a balance of fun, intimate sharing, and informative workshops. One of my teen students attended the 2010 convention and brought me back the new book, Without Hesitation. This book describes the use of medication to treat stuttering. All proceeds from the sale of the book benefit the NSA. I recommend it without hesitation.

This is a thin book and an easy read because Dr. Maguire wrote it for the layperson. It includes a very succinct history of treatments for stuttering, description of brain research, several case studies, a review of medications, and message of hope. Dr. Maguire invites anyone and everyone to contact him for speech therapy at The Kirkup Center for the Medical Treatment of Stuttering, http://www.kirkupcenter.uci.edu.

In an earlier post, I referred to a theory of developmental stuttering in which a child is repeatedly unsuccessful at repairing a speech problem and that this can results in increasing tension, both oral-motor and emotional. Without Hesitation wonders why such a speech difficulty occurs and makes a crucial statement: “We consider stuttering to be a multifactorial disorder; which means it’s a condition that has multiple causes” such as: (p. 12)
• Genetics
• PANDAS – Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strptococcal Infections
• Brain development during childhood

My understanding is that most brain research is done with adults who stutter, not children. So, there is an ongoing debate over whether brain research reflects what happens to a brain that has spent a lifetime stuttering, or, what a brain looks like in childhood as well as adulthood. Given the theory that the brain is “plastic” and changes continuously in response to learning and environment, fMRIs of adult brains may represent how stuttering impacts brain function over time.

Brain research has revealed at least three major discoveries.
1. “…the striatum performs as the brain’s natural timer and initiator of speech. People who stutter most often have trouble with the beginning of a phrase or word, but the speech flows more easily once they overcome this verbal block.” (p.28)
2. “…the left-hemispheric speech areas in individuals who stutter are low in functioning compared to…the right hemisphere…increased activity within the right hemisphere may represent overcompensation…” (p. 29)
3. Persons who stutter “often have too much dopamine in the brain, which may affect the brain’s ability to initiate and time speech. This surplus…is related…to striatal hypometabolism, a condition in which the striatum functions at an abnormally low rate.” (p.29)

If a neurological cause can be identified, then perhaps a medication can be designed to target that specific neurological issue. Studies suggest that lowering dopamine levels in the brain improves fluency. Several of the medications described in Without Hesitation, act to reduce brain levels of dopamine and showed both positive results and negative side-effects.

Another avenue for drug research is a neurotransmitter called GABA, gamma-aminobutyric acid. A medication called pagoclone “has shown particularly hopeful outcomes.” (p.42) A large scale study of pagoclone was underway as of March 2009 (p. 48).

Chapter 7 describes case studies of children trying medication therapy. My impression is that this is experimental in nature and there is no FDA drug currently approved for the treatment of stuttering. Nevertheless, parents wrestle with difficult decisions about their children’s educational, social, emotional, and medical health all the time. There are not many easy, clearly defined answers anywhere, IMHO. For some children, stuttering has a dramatic impact on quality of life and experimental therapies may make sense.

Parents are also making serious medication choices for their children for other chronic conditions. I want to highlight ADHD in particular:


“We know that chemical substances called dopamine agonists can make stuttering worse by enhancing the brain’s dopamine activity and diminishing the brain’s ability to time and initiate speech. Central nervous system stimulants, such as methylphenidate, and amphetamines that are used to treat attention deficit disorder and narcolepsy, are examples of dopamine agonists.” (p.34)

We remind our children that stuttering is not their fault while at the same time encouraging them to learn self-management. I wonder if the parents of children who have other chronic conditions such as juvenile diabetes, asthma, and learning disabilities also wonder how to encourage empowerment in the face of such circumstances. It’s my pleasure to watch parents do the best they can and children’s confident smiles in response!

7/10/11

Games - A Big Picture Perspective

Today’s topic is games. There are more than 60 games in my basement including four versions of Monopoly, two versions of Clue, two versions of Stratego, both adult and junior versions of Pictionary and Labyrinth and both an original and travel version of Scrabble. We have 2 cloth bananas full of letter tiles, a game called Bananagrams, because the extremely bright and highly competitive members of my family need enough letters to make long words that, trust me, you would not encounter in everyday conversation. All the toys, boxes of K’NEX projects, Legos, Playmobile castles, dozens of picture cards, puzzles, art supplies and shelves full of books make my basement look like a children’s consignment store.

I have collected games ever since becoming a speech-language pathologist, 29 years ago. I’ve culled the collection over the years, so I can locate things without a filing system. Some games were gifts, others purchased at yard sales and consignment shops, a few came from catalogues, and some were scavenged from the Barnes and Noble clearance tables just about this time of year. I couldn’t resist buying a set of colorful children’s puzzles at BJ’s just this past Friday. Many of the games kept my growing, very active son occupied. Even now, family games are one way we share time during school vacations.

I have a reputation for changing the rules. My son and I made games more challenging. For example, instead of playing a Memory game with say 20 cards, we would play it with 30, 40 or more. Instead of circling the path of a game board once, we would do it twice to decide the winner. For students, I usually make games less challenging. One game of Candyland, in which a player can select a picture card that sends her back nearly to the beginning of the game, was enough to start me thinking of ways to make games more successful and fun. For example, sometimes we roll multiple dice instead of only one, so game pieces can get to the finish line faster. Instead of struggling to hold on to cards in our hands, we sometimes place them on the table, face-up in front of us during a game like “Go Fish”. My all-time favorites are teaching parents how to inconspicuously let their kids win sometimes and making games cooperative instead of competitive.

Why do I encourage changing the rules? A July 4th article in the New York Times highlighted the importance of fairness. The title of the article was “Thirst for Fairness May Have Helped Us Survive,” (authored by Natalie Angier.) She wrote, “…by the age of 6 or 7, children are zealously devoted to the equitable partitioning of goods, and they will choose to punish those who try to grab more than their arithmetically proper share of Smarties and jelly beans…” My students tend to experience the unfairness of life, so,when we re-design game play, the rules become more fair for them and therefore more fun.

Another aspect of game design is “feedback.” Feedback relates to how present behavior affects future behavior. So for example, when we walk, a feedback system is at work to help us maintain our balance and stay upright as we move along this smooth carpet or down the stairs and out across the uneven parking lot. Artificial intelligence is partially about computers learning based on feedback. My parents e-mailed me the link to a game in which an all-knowing genie could guess any famous character I was thinking of just by asking me several yes-no questions. You see, every time someone plays the game, it adds to data bases it has accumulated, or, it is learning the characteristics of the new person you are teaching it. If it didn’t guess the character you were thinking of, it gives you several choices of who it might be. Your answer is its lesson. My son says that the advertisements on his Facebook page change as he types, because a computer program is using feedback from his conversations to find ads that would interest him.

I work with children who stutter and research indicates that some children who stutter may hear their own speech differently than you and I hear our own speech. The auditory feedback that helps us to monitor how we talk by listening to ourselves, may not work adequately for some children who stutter. Also, children who can identify simple shapes just by feeling them in their mouths show better improvement in stuttering therapy than children who cannot identify shapes in this way. The sensory feedback from the mouth, which would suggest knowledge of how the tongue moves around in the mouth to make speech sounds, may be inadequate for some children who stutter.

What kinds of feedback are in games? Video games have children collecting virtual coins, special powers, and special tools that become useful at a later time. Board games allow players to collect sets of cards, money, opponents’ game pieces, and points as rewards for correctly spelling words, answering questions, drawing pictures, or solving a mystery. Some internal kinds of feedback are skill improvement, personal satisfaction, public recognition and companionship.

An article in the July/August issue of the Atlantic Magazine, “How to Land Your Kid in Therapy”, challenges my practice of changing games so that my students will receive generous amounts of positive feedback. Apparently telling a child “Great Job!” not just the first time a he puts on his shoes but every single morning, teaches him that everything he does is special. Likewise, children who earn stickers for “good tries” never get beneficial negative feedback on their performance. Growing up in a culture “…where everyone gets a trophy just for participating … is ludicrous and makes no sense when you apply it to actual sports games or work performance,” (p. 72) the article states.

The main idea of the Atlantic magazine article is to challenge those who believe children’s games should be designed to nurture happiness and build self-esteem. The argument in the article is based on research that shows “… predictors of life fulfillment and success are perseverance, resiliency, and reality-testing – qualities that people need so they can navigate the day-to-day.” – not happiness and self-esteem. (p. 76) Therefore, some children’s games should be difficult and allow for failure. Children need to fail so that that they can discover and develop their ability to survive hardship and emerge more competent.

I’m not too worried about this because most of my students have accumulated plenty of negative experiences already. New game rules give them a fair chance at finally winning. But, now I’m confused. Are we talking about play or are we talking about work?

I consider the “games” I play as an adult:

I have been playing an old game called ‘the on again, off again diet’ for decades. When I was growing up, the rules around eating were: finish everything on your plate and then you can have dessert. My mother made delicious dinners and scrumptious desserts. Feedback from the scale was always the same. However, when I was pregnant, the scale went to 200 pounds and it’s been a struggle to lower it ever since. The rules for eating changed when I wasn’t paying attention. The new rules include getting to the gym several days a week and nearly eliminating entire food groups – I believe chocolate is a food group. Fortunately, there is digital feedback on the treadmill telling me to keep walking or else feedback from my body would convince me to sit down!

I’m also playing a game called “talking with your teenager.” Where’s the rulebook when you need one? In this game, conversation can be interrupted by a phone text at any time, at which point I am to place an invisible conversational bookmark in my mind for as long as it takes for my son to complete his texted interaction; after which we can resume our conversation.

As I get older, I discover that there are many complex, high-stakes games being played all around me and it’s about time I paid more attention to them. The US Supreme Court ruled last month that banning violent video games for children was a violation of free speech. As a parent who has spent the last 10 years monitoring video game violence in my own home, I am very interested in reading this decision. And now I’m even more confused – video violence is fun?

Now I’m even more convinced that a valuable lesson learned with games is that it’s ok to change the rules. Living in a democracy, at least theoretically, grants me this priceless privilege. I can influence the rule-makers by contacting my government representatives and donating money to organizations that advocate for issues I support.

As my own personal playing piece gets closer to the finish, I’d like to sort out the difference between games that are play and games that are work and be sure I am spending at least some of my time just having fun.

7/2/11

What Do I Say?

One of the first questions that parents ask me is, “What should I say to my child when she stutters?” Parents are familiar with saying things to their children that are instructive, comforting, or otherwise helpful. Parents respond to children’s speech by imitating an infant’s babbling, teaching a toddler new vocabulary, and expecting ‘please’ and ‘thank you’ from teens. Consequently, it can feel quite natural to respond to stuttering by saying, “Slow down and take your time.; Think about what you want to say first.” When this response is not helpful, they wonder what to say instead.

Speech therapy approaches this problem by asking, “What does the child know?” Some children are not aware of their stuttering, so an adult’s advice to change how they speak can be confusing and frustrating. This goes for the preschooler with mild, typical disfluency and for the older child caught up in sharing ideas, momentarily oblivious to fluency. Indirect therapy dodges the question altogether. It “involves changes in the speech environment” (1): reducing communicative time pressures, modeling a new/easier way of speaking, and changing aspects of certain troublesome speaking situations, for example.

A child “may perform many repetitions, but may not be aware of the relationship of speech to the feeling that he is ‘stuck’ or that ‘something’ is holding him back. It is important to acknowledge this distinction. Although the child may not perceive his speech productions as distorted words, he is aware of a difficulty in speaking – specifically, of feeling stuck.” (2)

The speech language pathologist (SLP) needs to find a way to help the child understand what is going on and speak in a way that feels easier. “Incidentally, the emphasis on feeling here is intentional. The powerless feeling that results from a loss of control often concerns children more than the actual speech disfluencies.” (3). Friendly play and conversation are a part of every session to reveal a child’s learning style and interests, which eventually become woven into lesson plans.

Early lesson plans begin with the SLP voluntarily stuttering in the same way as the child (perhaps with less muscular tension) and then using stuttering modification to change the stuttered words into “easier” ones. If the child comments on this, a conversation about stuttering has begun. If the child does not notice the SLP stutter, then she will describe it and reward the child for noticing it. She might say something like, “When I get stuck, it sounds like this: ‘Th-th-th-the boy is walking his dog…Would you help me by telling me when I get stuck so I can get unstuck?” (4)

Every step of speech therapy involves teaching the child greater awareness AND options for change. “What do I say?” is very specific: praise for speech changes that the child learned how to perform in speech therapy. When the child learns light contacts and easy onsets (gentle beginning sounds), then the parent can praise the child’s use of these skills both in structured homework and in spontaneous conversation. When the child learns to resist time pressure by pausing within sentences (5), the parent can say “I like how you used pauses when you said…”

Note: the adult also uses everything the child is learning. This can be explicit as in, “Let’s play this game so we both can practice pausing.” or; the parent can focus on her own speech privately, pausing as frequently and naturally as possible during a game. For some children, “Disfluencies may be acknowledged with neutrality, compassion, or empathy…or gentle requests for repairs that are distributed at a rate that is considerably less than that for praise.” (6) For children who’s speech therapy program includes corrective feedback, praise must greatly outnumber corrections.

What can you say to your child who is stuttering? You have some choices.

1. Listen carefully to what your child is saying and respond to that content,and/or,
2. Resist time pressure, pausing before any response, and/or,
3. Imitate the stuttered words by using a speech technique to illustrate how they can be spoken easier, and/or,
4. Ask how she feels, ‘opening the door’ for some emotional support, and/or,
5. Manage the environment by scheduling some ‘down time’ instead of another planned activity.

We all experience varying success with children. We cannot expect to say the perfect thing all the time. I recently took a risk by asking about a young teen’s moment of stuttering only to have her burst into tears. Moments like this come with the territory. You know your child better than anyone else. Now you know a little more about stuttering therapy so that you can know what to say.

I recently joined a new blog about stuttering. You might appreciate the July 1 post written by a mom, It’s a Blessing to Raise A Child Who Stutters. (http://stutterguy.wordpress.com/)

1. Ramig, P.R. & Dodge D.M. (2010) The Child and Adolescent Stuttering Treatment and Activity Resource Guide p. 67
2. Ibid., p. 69
3. Ibid., p 70
4. Ibid. p. 71
5. P. Reitzes (2009) Pausing and Stuttering, http://www.mnsu.edu/comdis/isad12/papers/therapy12/reitzes12.html 6. Ibid., p. 71
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This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.