Steering Through The Rollercoaster of Childhood Stammering – Mandy Taylor

About the Author: I live in Cheshire, England after relocating from Northern Ireland four years ago. Currently I have a finance role in an integrated marketing agency and am Vice Chair of the British Stammering Association.

My partner and I both stammer and have four children, three of which stammer.

What little free time I get is taken up by marathon training (I am entered to run the Manchester marathon in April 2019) and writing my blog www.mumatronatwork.com

People who stammer in my family are the majority, a bit of a rarity I know.

I stammer, and my brother stammers. I have an uncle that stammers and my eldest boy (19) doesn’t stammer.

My partner stammers, his mum stammers and both his sons stammer (age 9 and 13).

Almost four years ago we had our little boy Kieran.

He started to stammer just before he turned 3.

My particular interest is in, as I see it, the three stages of childhood stammering

  • The ‘discovery stage’ – age 2/3
  • The ‘proactive stage’ – from when the stammering emerges until the self-conscious pre-teen years kick in
  • The ‘self-support’ stage – the teen years where they begin to experience adult life and have more complex relationships, making their own decisions, discovering responsibility and independence.

All three stages will be different for each child and indeed their family, depending on family dynamics, relationships and of course if there is any history of stammering in previous generations. If there is a history of stammering, then the way in which it has been managed and understood will have a pivotal role in the way the child will see his or her own stammering.

DISCOVERY STAGE

When a child first stammers it will usually be around the age of 2-3 as they are learning to speak in sentences, using more complex language and becoming more sociable within the family and also perhaps as they attend nursery or toddler groups. For many, this stammering is developmental as they get to grips with this new ability to interact, ask for what they need and generally begin to become more independent.

For a parent who stammers themselves, without self-acceptance of stammering, it can be a truly devastating occurrence. The parent may feel shame and guilt as they feel they have somehow passed on this dreaded affliction, as they may see it. Even for a parent who has now come to terms with their stammer, seeing and hearing their child begin to stammer can bring back many negative feelings from their past.

As a non-stammering parent, you may not even know what these speech dysfluencies are. Many turn to internet pages for advice and at this point many parents find it confusing, isolating and frightening as they have never experienced this and much of the advice is conflicting. Many are told to wait to intervene as most children grow out of it.

PROACTIVE STAGE

As parents, we know our children. You will most likely recognise signs of a stammer increasing and worsening, with more visible struggles, and as a child grows and becomes aware of the difficulty he or she has in speaking. Intervention of some type will be required.

There are various things we as parents can do and many are a very personal choice to you and your family, between you and your child.

This may vary greatly depending in your life experience of stammering.

Non-stammering parents and those with no experience of stammering will most likely seek professional support from child services privately or publicly (NHS in the UK). However these services can be expensive and / or geographically not available. Many take to online forums and support pages or social media and educate themselves as much as possible. This in itself has its positives and negatives, with many people believing at the beginning that it can be ‘fixed’ or ‘cured’. The support for parents of children who stammer is still very much in its infancy (in the UK).

Stammering parents or those who have experienced stammering in their life and are at a comfortable stage in their stammering journey, will most likely have an idea of what they want to do. Many will have discussed this with their partners before having children. Many will seek speech and language therapy early on and be able to implement some techniques that has helped them, and building ideas for the future such as developing a letter for school, to help teachers understand what makes it worse, what makes it easier. They may be able to discuss stammering with their child, so the child can confide in them about negative feelings, bullying or upcoming speaking events.

A parent who stammers but who has negative feeling towards it, may feel they are seeing history repeating itself and not wish to discuss it at all. With that fear and dread they may try to hide it, and so the child may also hide their stammering as best they can. However, the parent may also decide that this is the time to deal with their own negative feelings and seek help, so that they in turn can help their child. Many seek online support groups and private therapy at this point.

One of the most controversial types of therapy for the Under 6’s is The Lidcombe Program [1], an Australian based therapy that uses a points based system of measuring fluency over a period of time. A dedicated time is set aside each day for activity during which smooth speech is praised. No negative feedback is given for dysfluencies. Routine and family dynamics are considered, and in what way changes could be made to give a more relaxed environment. Many families find a beneficial effect is achieved by slowing down a fast-paced life, more regular meal times, more one-on-one time (eg reading with your child) and less screen time. However, many families find this intrusive, and feel criticised, leading to the program not being followed as rigorously as it should be. Some parents also feel that by praising smooth speech it gives negative feelings towards the stammering instances.

It is important to say that this type of therapy should be done with no other reference to the child’s speech, the only thing that is ever mentioned is the positive praise for smooth speech during the sessions. There is little data to show this therapy is successful as it can coincide with the fact that some children grow out of stammering around this same age period.

However, as the child grows up, and they are not growing out of stammering, they need to be able to be open about their dysfluency, not afraid to speak out, not scared to tell teachers what works and what doesn’t. They need to build friendships, stand up for themselves and have their own opinions. We as parents have to make sure they have the confidence and tools to be the best that they can be, to make a positive contribution to society, to have and to speak their own mind, as individuals.

Therapy for stammering has changed very much over the years and many therapists now deal with the physical issues of stammering, giving a ‘tool kit’ of ways to improve fluency, but also to deal with the psychological issues surrounding stammering. The relationship with a therapist may last months or years and many children may wish to stop therapy as they begin that painful realisation of the fact they are different and do not want to be. They just want to be ‘normal’, to be ‘fluent’ and I feel that any person who stammers, would admit at some point, to that overwhelming wish to be ‘just like everyone else’.

As parents it is important that we have given them the opportunity to be prepared for the next stage of their life as they move through school and they have a balanced, rational and confident outlook towards their speech and any issues it may bring.

Throughout early school years it is vital to have a good relationship with teachers and for parents to be able to discuss the ways ahead, together drawing up ways to support your child.

SELF SUPPORT

As our children grow up and become more socially aware and self-conscious, many do not want to go to any type of therapy. They do not want to be different, have to give up school time, sports time or free time to attend appointments.

And we have to listen. It is their life, if they do not want to be there then it is not going to help and will only bring negative feelings towards not just speaking, but towards their parents and therapists. If we simply let them know they can always return, if and when they want support, then it keeps the door at least ajar, rather than firmly shut!

As parents, at times it is tough to find that happy medium. All you want is the best for your child.

It can also be very difficult to stand by if your child is suffering, if you see decline, if you see them change. Every instinct tells us to protect them. Again, it is time to be subtle, pick your time, make gentle suggestions of options. Let them decide.  Also provide distraction, encourage their sporting talents, singing, stamp collecting, whatever it is that makes them passionate. Let them vent, provide that safe place to be. As children get older, they will want to fight their own battles, their stammer is theirs, they will have their own journey. All we can do is give them the benefit of what we have learned along the way.

My own journey was not simple, nor is it over. With my partner and our children we realised that our life was so hectic that it was not helping anyone’s speech and so we developed an almost a semi – Lidcombe Program lifestyle change. We have special time with bedtime stories every night, eat together at the table as much as possible, to chat about our day or plans for the next few days ahead. We try to keep the routine as relaxed as possible, nothing is cast in stone and change is always an option.

When little Kieran came along and he started to stammer, even for me, a seasoned stammerer, I felt the ice cold hands around my heart. Many years before my eldest boy stammered for a few weeks after I was away for a week, it was like he was missing me and it was his way of me still being there. It stopped within a few weeks of me being back home. But this was different, I knew it was.  So, I chose to implement The Lidcombe Program much more rigorously. I also got down on his level when he was struggling, saying the words together. He used to watch me carefully when I had a repetition, almost studying me to see how I was getting the word out, as I would stop and use easy onset to get the words out, and then slow my speech down to regain that fluent pattern. I could see him almost trying it out on occasions.

My childminder was great also, reading about stammering and slowed the routine down a little so that the pace of his day was more relaxed. Just after he turned three he started nursery, and I spoke to the staff and they were brilliant. I gave them what to look out for, how to react and what to do. His stammer manifested itself in almost every way over the next while, he would repeat syllables, then whole words, he would add in fillers. He would block, it was like he was trying it all out, but each would only last a few weeks.

This last few months he has great fluency. Nursery say he was very confident during their sharing time as he told others about his weekends or things he had been doing.

He enjoys repeating the bedtime stories in his own words and is a happy chatty little boy!

Parenting is a rollercoaster as it is. Add stammering into the mix and it becomes ten times harder. But we will succeed, we will raise good kids, who will grow into fabulous adults who will go forward and be able to speak their own mind with confidence and achieve great things.

 

References

[1] http://www.lidcombeprogram.org/

 

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Comments

Steering Through The Rollercoaster of Childhood Stammering – Mandy Taylor — 48 Comments

  1. Lot’s of different perspectives, much food for thought. Thank you for posting. an enjoyable read.

    • Thanks, just like the actual stammer, every child and family will be different and have a different perspective.

  2. Thanks for sharing your thoughts. Really interesting to consider a semi-structured view of the parents’ experience of their child’s stammering. A rollercoaster, indeed!

  3. Mandy, It was great to hear perspective from a parent, not only your emotions but the emotions you have for your children. I wondered what of the techniques you mentioned with your young son who started nursery you feel were most helpful: relaxed pace, Lidcombe program, talking with his nursery teachers, or all together?

    • Hi, yes I think it was definitely a mixture of all the things we did. What is important to know and to tell teachers etc too, is that what will work for one child may not work for another. Another child might find simply a relaxed pace helps enormously and you might not need to do much else. Everyone is different and this carries on throughout life.

  4. Thank you for sharing your experiences. I like how you discussed the different stages and how each individual will have their own journey and experiences.

  5. Thanks for sharing your journey in parenthood. No doubt this will be a great introduction for non-stuttering parents new to stuttering.

  6. Thank you for sharing this information, I really enjoyed learning about the different stages as well as information for parents. Do you feel like parents who stutter have an advantage over parents who do not in helping their child understand stuttering? Do you think parents who stutter have more fears than parents who don’t because they have experienced stuttering?
    Thanks!

    • I think parents who stutter/stammer have an advantage as long as they have a positive mindset themselves, but if they are in a bad place or are simply burying their head in the sand with their own speech those negative vibes can indeed be picked up. Kids kind of understand when we do not feel good about ourselves.
      Hence it is super important to be a good role model and address our own stammering issues before we start trying to address our children’s.
      I think there is more fears, as PWS we know how cruel children and others can be, but it is then up to us to prepare our kids for the negatives too. It happens, but we should also be active in creating a world were stammering is accepted.

  7. Thanks for your interesting paper. As a mother who stutters, I have had many thoughts on whether I wanted to take the risk of having a child who stutters, but also how I would cope with bedtime stories, school meetings, her friends etc. And when she became an adult and dated a guy who’s mother also stutters (!) it was ME who was worried once again, as the risk (or chance?) she would have a child who stutters herself brought back all the concerns again. But when I shared them with her she said “Mom, that would really be a problem, as you would give advice all of the time.” 😉 Her worries were not at all about stuttering, as she’s brought up with it. Her concerns were about me. 🙂

    That said, I am concerned about the Lidcombe method. My parents commented on my speech and it made me feel judged by the last people you want to feel judged by. I’d be interested in speaking to children who’ve done Lidcombe, but who now are adults, to hear how they experienced it. Do you have any idea if there is such (unbiased) research?

    Happy ISAD and keep talking!

    • Thanks Anita! I am aware of no research but wouldn’t it be great if we could get some SLP ‘s to do follow ups!

  8. Hi Mandy – thank you for sharing your story. You did a great job of conveying the uncertainty and the roller coaster ride we as parents have to endure. If I may ask, how did the “semi-Lidcombe” approach differ from the rigorous Lidcombe approach? Thanks!

    • The rigorous Lidcombe is devising that time, that exact same time slot each day, making that time completely one on one, and just parent and child. No other time is ‘bumpy’ speech mentioned at all.

      My non rigorous was perhaps including a sibling in a word game (we love the game of sticking a Post-it on your forehead with a famous name and the person does quotes from the show or movie or cartoon for the others to guess the character) although the focus is on the stammering child (albeit in my house 3 of them stammer!). We would encourage the children to all take turns round the dinner table to tell us a fun thing they did that day, so we would do more sessions of speech stuff but not pointing out bumpy bits, we only ever praise speech, there is never any negative comments made.

      May I point out however if one of the kids gets very stuck we do gently say to maybe do it all together, then do it in unison and everyone gives a big cheer….it may sound cheesy but it means for them they can hear themselves say it fluently and they have wingmen!

  9. Wow, Mandy, this is an incredible share on so many counts. You’ve let us in to your own personal journey, your family’s journey and you’ve offered such great information that anyone can use, to base decisions on or just to get that all important personal perspective.
    Your break down into three stages is so useful.
    And I just love your phrase “seasoned stammerer.”
    You are wise and we should all be grateful that you chose to share this with us.
    What a great asset, ambassador and ally you are, to the stuttering community and the larger community at large, or the world.
    Thanks again.
    -Pam

  10. I think parents who stutter/stammer have an advantage as long as they have a positive mindset themselves, but if they are in a bad place or are simply burying their head in the sand with their own speech those negative vibes can indeed be picked up. Kids kind of understand when we do not feel good about ourselves.
    Hence it is super important to be a good role model and address our own stammering issues before we start trying to address our children’s.
    I think there is more fears, as PWS we know how cruel children and others can be, but it is then up to us to prepare our kids for the negatives too. It happens, but we should also be active in creating a world were stammering is accepted.

  11. I am a graduate student in speech language pathology. You mentioned using the Lidcombe Program with your child. You acknowledge this approach is controversial and has some shortcomings. Why did you choose the Lidcombe approach with your child?
    Brianne McFee

    • For me it was the correct approach as I feel this is how I would have wanted my own speech to have been addressed.I have always felt comfortable talking about my own speech with our children and with them I felt comfortable in being able to decide when to draw positive attention to smooth speech patterns and I was happy that this was not having any negative impact.

  12. It is very interesting that for children who stutter, having parents who stutter as well can have a pivotal role in the way they develop their own viewpoints of stuttering. As a parent of children who stutter, how have you noticed this to be true? Do you feel that your children have progressed/are progressing through the different stages of stuttering and developing viewpoints similarly to the course of your own journey through childhood stuttering?; and if so, is this because of wisdom you have shared with them or do you think they developed those feelings by being immersed in a communicative environment with other people who stutter in your family?

    • Hi, my own stammering journey as a child was so very different as my stammer was never discussed. My father was not very kind and would mimic me when it annoyed him. he was embarrassed by my stammering.
      My stammering was very severe and I was very overt as I could not hide it, I could physically not say words and so word switching etc just simply could not happen.
      I never wanted my children to feel that shame and embarrassment that I felt and so always wanted them to know that stammering does not matter in our house, it is not something to hide or be scared by. So far it seems to be working with Kieran as he is with us all the time. The other two older boys are only with us part of the time, they live mainly with their mother and so have developed more covert tactics. An interesting model.

  13. Thank you for sharing your experience. I have wondered what this would be like and find your essay poignant, informative, and inspiring. I love the way you write about your role as a parent. You strike a beautiful balance between your influence in creating an atmosphere and also respecting the choices of your child. This dynamic is even more effective as you define the stages of childhood stuttering. So much wisdom here! Thank you, Mandy!

  14. Hey Mandy,

    My name is Caitlin and I am a graduate student in speech language pathology. I really enjoyed reading your post and your viewpoint as a parent (who also stutters) parenting children who stutter. Since you have three children who stutter, how has treatment and acceptance of their stutter impacted them differently?

    • Kieran aged 4, is the only one who is with us all the time, the other two older boys are mainly with their mother. The oldest boy who stammers aged 13 is very covert, does not discuss his stammering and outside the home does try and hide it. We always encourage all our kids to not be treated differently, they will order their own food etc when eating out and it is interesting to see these different stammering personalities. In the older two children maternal home they are treated differently, told they are different and have issues, and so I feel become a self fulfilling prophecy.
      However when they come to us, they stammer more openly, because it is fine to do so.

  15. Wow Mandy, what a powerful story. I am a graduate student pursuing my masters in speech language pathology and also a person who has myself suffered from a significant speech impediment for 33 years. I am also a mother. My speech disorder is not genetic but your story made me realize for the first time the perspective of the mother of a child who struggles with a speech deficit. I have easily understood the child’s perspective (as I have been that child), but I have never imagined being the mother. The ice cold hands encircling your heart you describe is such a powerful metaphor. How you feel at once incredibly responsible for the struggle and also wanting to fix it are such strong urges. Thank you for sharing your unique perspective, it was very eye-opening to me. We are being trained to consider the perspective of the patient, but I have yet to consider the perspective of the mother. This was truly helpful. I wish you the best.
    Thank you for sharing
    Virginia

  16. Hello Mandy! Thank you for sharing your story. I truly enjoyed reading this. You did a great job of conveying the roller coaster ride parents must go through. You offered a wonderful perspective for someone like me who is a current SLP undergraduate student that has no children.

  17. Hi Mandy

    Thank you very much for this very informative paper. I appreciate very much you sharing your wisdom with us, when you clearly have so very much going on in your life already.

    What is your feeling regarding recovery from stammering in pre-school children? Your approach seemed to work for Kieran, which is marvelous, but do you feel it would work for all stammering children? It is clear that levels of knowledge and engagement by the parents strongly influence the outcome, but not all parents might have the knowledge, wisdom and patience as you and your partner do. Therefore, do we, as PWS active in the self-help world, with strong foundations in Acceptance, need to do more to help parents understand and get engaged?

    Thanks a lot
    Hanan

    • Absolutely, we must engage with more parents and help them through this minefield as so many blame themselves but they must also realise they have the power to make change, positive change.

      I feel with good positive reinforcement and an openness and acceptance of speaking differently there is more likely to be a positive change in speech, in most ages.
      It is vital that the parents are open in discussing the stammering from the outset and NOT ignore it, by ignoring it the child may get confused.
      It is all about openness and positivity and also being mindful of doing things that will create a more positive environment for your children.

  18. Hi Mandy!
    I am a speech language pathology undergraduate student and it was so interesting to hear your story and experiences! You mentioned the techniques one of your children used; did your other children find the same techniques helpful or did they try others?
    Thanks so much for sharing!

    • The older two children are only with us some of the time and their mother did not want intervention at all as she didn’t believe they stammered until it was blatantly obvious.
      The middle boy gets SLT at school as part of his educational special needs and has little self awareness and so is overt and will persevere until he gets out what he wants, however as he gets older you can see the avoidance traits creep in. As we only have them a portion of the time, we can only give them positive reinforcement in our environment. The older boy is now very covert and doesn’t discuss it much but does stammer more openly when with us.
      He no longer receives therapy as there is nothing the SLP can do until he wants to address it. We have always said if he wants to do anything to let us know, and we use some techniques ourselves and you can see him adapting some of them….
      sometimes the best therapy is just showing them what to do, and leaving it there, the tool box is always open!

  19. Thank you so much for sharing your own perspective and experiences. It is extremely helpful as an undergraduate student in SLP to hear your perspective as a parent throughout this journey.

  20. Thank you so much for sharing this! I’m a graduate student studying Speech Language Pathology and its so inspiring to hear mother’s share their stories! I’m a really big fan of family-centered therapy and I think what you’ve done with your family is wonderful. I also think how you’ve advocated to your son’s nursery is a major step that I hope I can urge other parents to do as well as a therapist. Having teachers, siblings, and really anyone interacting and influencing your child educated is clearly impactful.

  21. Mandy,
    Thank you for sharing your story! I am a second year graduate student at the University of Minnesota Duluth and I am taking an advanced fluency course right now. I was drawn to this post as I am currently on an internship in an elementary school (k-5) and wanted to hear from a parent’s perspective about a child/children who stutter. I think your modeling and getting on your child’s level when he was stuck on a sound and being a positive example for your child is AMAZING! Not to mention, your advocacy with the nursery a teachers! I am curious, what were some of the sorts of things you discussed with the nursery teacher when advocating for your son? I am assuming you were chatting with someone who might not be as familiar with stuttering as you? What were their initial reactions? Were they reluctant to or open to implementing different strategies/ideas? I sure hope they were, but I am just curious as I soon will be discussing different clients with general education classroom teachers so that they can be best informed on what to do and what not to do. I thought I would ask someone who has advocated first-hand. Thank you again for sharing! What a wonderful family you have it sounds like!
    Sincerely,
    Aly

    • The nursery were amazing, as they know I stutter they totally understood my concerns for Kieran and were happy to sit down and chat to me and we have regular ‘stay and play’ sessions were you can talk to the key leader for your child.
      They were able to tell me what he was like during the day, how his speech was under different circumstances and `I was able to tell them the approach that may work best.
      For example, if he was running about outside getting really hyper with a few others and his speech may start to deteriorate, usually just now to over excitement, the teacher would maybe ask if anyone would like some quite time with a book and suggest that Kieran might like to come in first to choose the story.
      This would work a treat, bringing him down bit and then getting him chatting in a quieter environment, on a one on one basis and his speech would settle down again and the teacher would then perhaps comment on how lovely his talking is today. They would never ever comment on it in a negative way, or mention it to him unless he got super stuck and got upset, in that case it was a cuddle and just gentle words saying that sometimes we all get stuck and its ok, lets go do something fun…..
      I speak to the teachers regularly and they say he is doing great and so far since sept we have had a very fluent phase, but as we know we cannot take anything for granted.

  22. Thank you for sharing this! As a new speech-language pathology undergrad student this paper was very eye-opening to personal/parent level one might experience. I wish you the best!

  23. Mandy,
    Thank you so much for sharing your story and showing the different stages that people go through!
    Jenna

  24. Hello Mandy! Thank you for sharing. I am an SLP student and really found this to be interesting. Stammering can be a long journey, but it is great to make the best out of it. I love how you said that it is good to be open about it and not to be afraid to tell people how they feel and speak out. I think it is very important, especially in the school systems that kids speak out what they deal with and how the faculty can assist them!

    • This is probably one of the most important issues that we need to get children comfortable with, being open about their speech, good and bad, however it can be so difficult.

      Thanks for reading,

      Mandy

  25. Hi Mandy!

    I really enjoyed reading your post. It brought a lot of insight into the life of a PWS. I am a graduate student at the University of Minnesota Duluth and I am currently taking an advanced fluency course. I was wondering what advice you would give a parent of a child who stutters who is experiencing the feelings of guilt or like it is because of something they did/didn’t do that caused their child’s stutter?

    I greatly appreciate you sharing!

    Have a great day!

    Riley

    • I have met a few people who have had these feelings and guilt is such an overwhelming thing.
      In my experience I have always said to talk about your speech quite openly and especially once your child can notice your own speech is different, it helps them understand.
      Do things together and let your child help you, suggest that you say things together, let your child hear you stammer and do not apologise to others for it. Let the child see it is ok to stammer.

      At this point too, guilt can make people more proactive in dealing with their own speech and so may got to therapy. A family structured therapy would be amazing for families with more than one person who stammers, and gladly as people educate themselves more they know nothing they have done has made this happen.

  26. Discovering your child has a stammer can be really difficult to understand whether or not the parents have a stammer or not. Being able to recognize the symptoms can be terrifying as well as being confused about what is happening with your child. I really found it interesting how there are different phases of the journey of helping their child overcome their stammering. For those parents who do not have a stammer themselves or do not have experience in helping a child who has a stammer, who is helping guide these parents?
    I also found it interesting that the types of therapies can also vary, depending on the child and what the families/professionals think will be more beneficial for the child. Is there truly a cure for a child with a stammer, or solely assistance and tools used to help their overall fluency?
    Overall, I really enjoyed your paper and really helped me understand what it is like to be a parent of a child with a stammer/ any speech issues. It truly can be a rollercoaster and I hope to keep this in mind in my career to also be offering assistance to parents as they are struggling too. It is a learning curve for everyone and wanting to help and do what’s best for all who are involved is essential.
    Thank you for sharing!
    Mariah

    • There is no cure for stammering, only management and that is different for each child and family. Families who have never experienced stammering before really do need more support as it must be truly an isolating experience.