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Stuttering therapy: a parent’s highs and lows

“When you hear your child smooth all the time you’ll be so proud of them and yourself.”

I’m following up with past clients, hopefully to help current clients gain some support and perspective on where they are at in the therapy process. Therapy for stuttering is challenging in many ways. What do parents think some time after they’ve been through this process?  Here’s what one client said, 3 years on.

How old was your child when you did the Lidcombe Program?

The first time we tried the program my daughter was just 3 years old. We did it for 4 to 5 months and decided to have a break. We tried again when my daughter was 4 years old and this time it was a total of 3 months until we were in maintenance.

How long ago did you complete the treatment?

3 years ago

How did you find the treatment process?

I was surprised how confronting it was for myself. I too suffered from stuttering as a child and doing the therapy and having to tune in made me realise some of my own disfluent speech. I initially also found it hard to do the therapy and was very critical and hard on myself when we weren’t getting the initial results.

Was it what you expected?

I didn’t realise how long the process would feel when you are in it. My husband and I both work in our own business, and at the time I was pregnant and had another 11 month old baby. Finding time to make the therapy a part of our everyday routine sounded possible. But looking back on our first attempt I now know we just didn’t have enough consistency to complete it.

What do you wish you knew before you started?

It’s a bit like childbirth, it doesn’t matter how much someone prepares you… it’s still gobsmacking at how emotional, exhausting and tiring the process feels. Our key to success for the second time round was to have the help of my mum and she did the therapy too. Sharing the load made it much easier to keep the consistency and was more enjoyable for both myself and my daughter.

If you could time-travel back to the midst of stage 1, what would you say to yourself?

imgspeech-marksConsistency is key. You can make a difference. And when you hear your child smooth all the time you’ll be so proud of them and yourself. My daughter is about to turn 7 and I still get a buzz out of hearing her so smooth and how confident she is in her speech.

Do you recall a funny Lidcombe Program moment?

We had to ban the use of ‘umm’ as that started to become a mask and would be said before each sentence. And due to this word not being able to be said in therapy, I was not allowed to use it! Haha that was difficult. My daughter was allowed to pick me up on it too! We decided we had to sit on our ‘ums’ when they slipped out. And I spent a lot of time catching and sitting on them as I was thinking of the next question. At least we both got a good laugh. And I’m pretty sure Grandma was worse than me. Haha

 

 

Therapy Journey

I’m re-posting this articleimg-jesstee (with permission) by a parent who is in the process of doing the Lidcombe Program with her child. I haven’t met this parent and I haven’t treated her child. The article caught my eye because it illustrates a parent’s journey during treatment for early stuttering.

Some of my clients have expressed similar feelings during treatment. At these times I’ve wondered whether hearing what other parents are going through could be a support.

The Lidcombe Program ~ a mum’s perspective

I’m a therapist. A Physiotherapist.
I understand therapy and how it works. I know that in order to make change one needs to practice or repeat favourable behaviours over and over again until it becomes their new subconscious behaviour. What I didn’t know and have only begun to realise, is that taking on a stutter as your child’s unassuming speech therapist is emotionally draining and I’m beginning to wonder if I need some therapy for myself now!

I have written this small personal story as a way of supporting other parents of children who stutter and provide some insight into the rollercoaster of emotions treating it entails. It seems so simple, yet nobody forewarned me of what it would truly be like…

It all started when my son was about 2.5 years old and it became quite clear he had a stutter. My son had an exceptional vocabulary for his age. He had so much running through his mind and it seemed as though his brain was working 5 times faster than his mouth could produce the words. At first I ignored it. It seemed to make sense. He had all these words and thoughts that he wanted to express to me and he was so excited to tell me things that it all got stuck in his mouth and he couldn’t say it properly. He couldn’t get his words out as fast as his brain was moving. It made sense… But then it started to become quite severe.

My family members were well aware of it too. They would ask if I had noticed his stutter and quickly agreed that it was probably due to his fast moving mind and it will probably go away on it’s own. But by the age of thee it continued to worsen. His mouth and face started to show tension when he would try to produce the word that was stuck. This was more than just a little bit of difficulty getting words out. It was painful to watch as he persisted through his stuttering to convey his vivid and imaginative thoughts. He was determined to say whatever it was that he wanted to say and I knew it was my job to make sure he could. It was my job to relieve him of this frustrating stutter interfearing with his ability to speak and express himself. This was effecting his life.

I sought help from a highly educated and experienced speech therapist. She assessed Jay and he was rated an 8/10 on the scale of severity- 1 being no stutter and 10 being the most extreme possible. My heart broke confirming what I already knew. Jay had a stutter and it was pretty damn severe. It was unlikely to spontaneously resolve. The brain matter and the neural pathways in his brain had somehow changed and had caused him to develop a stutter. We needed to start therapy and it was on my shoulders to provide it.

The Lidcombe Program…I went to univeristy at Sydney University’s Lidcombe campus. It’s where they taught all of the health sciences such as physio, speech pathology and occupational therapy. Little did I know that while I was studying to become a Physio, Speech therapists were researching and devising a program to treat stuttering. I was relieved to know that there was an evidence based therapy known to treat stuttering. It was best delivered at an early age and it had good outcomes which would hopefully produce stutter-free speech without re-emergence in the future. The therapist explained what my job was. I was told to do a “smooth talking game” once a day every day. Slowly the therapy would creep into other parts of my day and life. I would have to comment on his speech 20 times a day. I would have to encourage periods of stutter-free speech. Whether it was in the car, at the supermarket or around the dinner table I had to listen for his stutter and ask questions in such a way to receive a stutter-free response. I would have to ask him if he was speaking smoothly. I would correct him if he stuttered during our smooth talking games.

Every day we played our smooth talking game. I would comment positively on his speech while having to listen out for any stuttered or dysfluent speech. Daily I would rate his speech out of 10. Weekly we would go for a check up where his speech would be measured and the speech therapist would give me tips on how to deliver the therapy in the most beneficial way for Jay. What started out as a 10 minute a day commitment became an all day deeply emotionally draining responsibility. If his stuttering increased for a few days I blamed myself. Maybe I wasn’t delivering the therapy correctly. Maybe I wasn’t saying the right things. Then the therapist said to try doing the speech games twice a day and to increase my positive feedback outside of the twice daily play sessions.

I went home and cried. The time and emotional dedication I had to give to this therapy was beyond my expectations. I love my child more than anything. I would do anything for him and this was no exception. But I am writing this as a warning but also as confirmation that this Lidcombe Program is hard! It’s draining. It’s time consuming. You still have to be a mum to your child and their sibling, be a chef, be a cleaner, be a lego builder, be a train track designer, be everything your children want and need, be a wife, go to work and be a therapist from the moment you see your child in the morning til the moment they go to sleep at night.

Last week Jay was rated a 2/10. We have come a long way. We still have work to do and I’ve been told its probably going to be another 6 months before he will be stutter free. It scares me to know we still have a lot more therapy to go through but I know it will be worth it, I know my son is healthy and I know he will grow up not even remembering that he ever stuttered. And that is a true blessing.

How hypnotherapy cured my son’s stutter: A response

An article was published in the Sydney Morning Herald this morning titled: How hypnotherapy cured my son’s stutter.

The key points the parent and author reports are that:

  • they saw 7 speech pathologists in 9 years without successfully treating the stuttering
  • after 1 session of hypnotherapy the child barely stuttered
  • stuttering (is an) anxiety-driven condition
  • after hypnotherapy treatment the child still stutters a little; he has a slight pause before he speaks

As a speech pathologist with a PhD in stuttering and many years of experience treating the disorder, I feel obligated to put some context around this report.

Speech pathologists are trained to used evidence-based practice. That is, they use treatments that science has shown to be effective, repeatably.

Why didn’t speech pathology treatment work for this child?

We don’t know from this article. Was it poor advice from the speech pathologists? Was it a parent factor? (Parents deliver most stuttering treatments with daily practice at home.) Was it a child factor?

That the author of the article saw 7 speech pathologists in 9 years is a strong signal that the treatment conditions were not optimal. No wonder she was looking for alternative options!

After a single session of hypnotherapy the author reports her son barely stuttered. However, this means little. Unfortunately there is no guarantee that it will stay mild and unobtrusive.

As the author points out, stuttering changes from day to day anyway. This is the nature of stuttering. In fact, the author admits her child still stutters a little.

It’s highly unlikely that hypnotherapy has cured the stuttering. It may have had some effect on the child’s speech-related anxiety.

Stuttering is not caused by anxiety, but anxiety is known to exacerbate stuttering. Speech pathologists who work with stuttering will consider anxiety and awareness of stuttering as part of treatment.

Parents of children who stutter should know they are best to seek advice from a speech pathologist with experience treating stuttering. While it’s nice to think that hypnotherapy might provide a silver bullet, the science says otherwise.

Assessment of stuttering (and anxiety)

IMG_2363

My seven year old and I read a graphic novel recently (Plumdog by Emma Chichester Clark), and this seems to have prompted an interest in her telling stories in a similar format. Her latest story crosses paths with what I do at work: one of the characters stutters (the purple figure towards the bottom left corner in the featured image). If you can make out the other characters’ speech you will read that he is being criticised for stuttering. So how does this story relate to anxiety and assessment of stuttering?

Someone who stutters cannot help stuttering. If you stutter you likely have some irregular brain activity in speech areas; genetics are involved. None of this has anything to do with anxiety. However, speech is central to being human. Our lives are built around speech. So, living with speech that is stuttered increases the risk of developing anxiety, particularly social anxiety.

Even preschool-age children who stutter have been shown to face negative consequences from peers as a result of stuttering. By the school years, bullying is common and known to be associated with anxiety later in life.

When I assess stuttering, I use a standardised test to screen for whether anxiety might be present. Parents complete multiple choice questions for their preschool-age child, whereas in the case of school-age children both parent and child complete separate questions. It’s brief and indicates any need for further assessment. I’m much less likely to delay treatment of a preschool-age child who has become anxious owing to their communication difficulties. With an adult who stutters, the presence of anxiety can prevent them from making gains with their speech treatment; and sometimes adults need to work on the anxiety before they are able to work on speech effectively.

Once upon a time it was thought that anxiety caused stuttering. Now we know it’s the opposite; stuttering places you at risk of developing anxiety. And so it’s important that I consider the possibility of anxiety when I assess stuttering and treat it.

Thank you Skype: Treating Stuttering

Thanks

I am often lucky enough to receive drawings from the children I treat for stuttering. Treatment with the Lidcombe Program involves weekly contact so we get to know one another through the course of treatment. This drawing is particularly special because it came in the post. Why? I haven’t met Charlotte in person.

Last year for a few months we saw each other most weeks. I was on a screen in one location and Charlotte was on a screen in another location. Through the magic of Skype, Charlotte took me into her home, where her baby brother was feeding or rolling or teething and her slightly older brother was napping. While these activities continued in the background, Charlotte, her Mum and I did the Lidcombe Program.

Charlotte and I are located a few hours from each other, so Skype was the only option if we were to work together. However treatment via Skype can be very convenient when clinician and client live in the same traffic-burdened city, and also in families where there are a few young children with different nap times.

Clinical research supports Skype for the Lidcombe Program and also for the adolescent and adult speech restructuring treatment the Camperdown Program.

Living with stuttering

How many people do you know? Think about the different facets of your life. There are family members, friends, work colleagues, school, community members, or the person who makes your coffee. Do any of these people stutter (or stammer, as it is called in the UK)? Did you know that around 1% of adults stutter? This means you probably know at least one person who stutters.

But perhaps you don’t know who that person is.

Working with adults who stutter, I see how disabling this communication disorder is. Many adults who stutter avoid speaking in situations in which they expect to stutter. For some adults this can mean avoiding talking altogether; for others the educational and occupational choices they make are limited. Indeed research shows that half of all adults who stutter could be diagnosed with a social anxiety disorder.

Rewind to the preschool years when stuttering tends to begin and you see a different picture. The preschoolers who present to my clinic are mostly less bothered by their stuttering; many haven’t yet noticed they do it. Parents are concerned, they’ve come to find out more, and they hope that their child will recover naturally (without treatment).

Listen to this 2 minute section of Richard Fidler’s interview with Dame Margaret Drabble on ABC 702. Margaret Drabble, a distinguished English novelist, captures the nature of stuttering as experienced by someone who stutters.

Margaret-Drabble-Discusses-Stuttering "Margaret-Drabble-Discusses-Stuttering". "Margaret-Drabble-Discusses-Stuttering"

Although Margaret can’t recall much about her own stuttering when she was a preschooler, she recalls it caused difficulties at school. The interviewer relays information about the actor who played Darth Vader in Star Wars, who apparently remained selectively mute for many of his school years owing to his stutter.

Although Margaret recalls bravely persisting with stuttered speech, she explains that she continues to have difficulties with stuttering and that in recent times the “terror” of being unable to say something she knows she needs to say has kept her awake at night.

During the interview, when relaying a recent example of being unable to speak, Margaret again struggles to say the words she anticipates stuttering on. Such anticipation is commonly reported by adults who stutter. Typical of stuttering, Margaret is able to interject with something else: “I don’t know if I’m going to be able to do this”. The interviewer steps in, saying the phrase, which allows her to follow.

It is possible to forsee how living with this sort of communication issue leads to people withdrawing from communication and social interaction. Even if you are able to anticipate when stuttering is about to occur, as Margaret Drabble’s example illustrates there are times when no alternative word can be substituted.

Margaret says she finds formal situations the most difficult. This can vary; I’ve had clients who stutter more severely in informal situations and I’ve had clients who have noticed no difference between these.

No parent would like for their child to go through life stuttering.

The Lidcombe Program is an evidence-based treatment for preschool-age children which aims to eliminate stuttering; by contrast the most effective adult treatments mask stuttering. However, parents of preschoolers are extremely busy these days, and the Lidcombe Program requires consistent time and effort and commitment from parents.

Research suggests that approximately 10% of preschoolers who stutter might recover without treatment within a year of onset. After this time children are approaching the age at which treatment with the Lidcombe Program may not be effective.

To me, the odds of recovery without early treatment are low. And consider what is at stake!

Perhaps if the someone who stutters that you know is someone close to you, you can support them in the treatment process, whenever that takes place.