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A Parent's Journal

AParentsJournal

This is a personal journal of a mother whose child started stuttering at a young age. How stuttering, and the speech therapy sought to treat it, effects the child and the family is discussed. Names are not included to protect the child's identity.

February 26, 2013 – Why E?

My little boy has an assessment at ISTAR (Institute for Stuttering Treatment an Research) tomorrow.  It’s now 9:30pm, and in just over 12 hours I will be walking my baby there, knowing that he will be having therapy for stuttering.  Part of me is grateful that ISTAR is in Edmonton, so we only have a 30 minute drive to get to the some of the best therapy in the world. I know that with some therapy E will be fine and probably stutter-free, but a part of me feels like it is breaking my heart into pieces knowing that my baby is stuttering. I’ve had to tell my serious 3 year old that tomorrow we are going to meet a nice lady who helps kids talk better and she will help him unstuck his words.  I should be taking him skating or to a movie, not to speech therapy!

I am a person who stutters. I stuttered severely through much of my child and teen years and at the age of 17 avoided all talking situations.  I had therapy just before my 18th birthday and it changed my life.  I have been asked if I regret that I stutter and if I wonder what my life would be like if I didn’t stutter. I don’t regret that I stutter and think that I have achieved all that I have because of it. I worked incredibly hard to be fluent and did achieve good control of my speech.  I became a speech-language pathologist (SLP), was the national coordinator of the Canadian Stuttering Association (CSA) for 4 years, have given workshops at conferences, have a wonderful husband and two great kids.  My life is perfect even with the stutter that still challenges me each day.

When E started to stutter about two months ago, I initially thought that it was just developmental disfluency - he had gained a lot of language in the last few months and his speech system was struggling to keep up.  I listened to the stutters for a week without much concern, but then the stutters become more frequent and more intense.  I felt so guilty - he had inherited the stuttering gene from me.  I caused my baby to stutter.

February 27, 2013 – Background

My husband and I were older parents, because for years I said that I would not have children and chance that they would stutter.  At 33 years old I was okay enough with myself to know that I could help my future children if they stuttered. I’ve had a list of developmental milestones/stutter triggers in my mind that I have watched E achieved stutter free - 50 words and no stuttering, 100 words and no stuttering, combining words into sentences and no stuttering, new baby sister and no stuttering, exciting events like Christmas and no stuttering.  My list was done and he was not stuttering.  I had used a slower rate with him, placed no communication demands, modeled language, and gave extra time for him to talk, and anything else that I thought would help him not stutter. I breathed a sigh of relief and started to relax when all of a sudden he started to repeat words.  NOOOO!!!!

Over the next few weeks, I would listen to E talk and watch him struggle.  I did not want him to see me upset so I would bite the inside of my cheek trying not to cry, and glue a smile on my face as he struggled.  I panicked... I did not want E to stutter.  I did not want him to experience what I had to.  I told myself that he would get therapy as a preschooler so he wouldn’t struggle the way I did, but then I would get mad at myself because I know that it is really okay to stutter.  I was questioning my own set of beliefs - I would tell anyone that stuttering is okay, and you can do anything even if you stutter, but knowing that my child might have to deal with it for the rest of his life was destroying me.  It was not fair.  I had struggled so much – why couldn’t E be free of stuttering?

The day E was struggling to say something to me and stopped and said, “help me Mommy” just about did me in. I helped him say it, gave him a big hug and then cried for the next 15 minutes.  I had a flash of memory to me sitting in the corner of our kitchen when I was 16 with my knees tucked up and my face against my legs crying as I listened to the phone ring and knew that I should answer it, but if I did that I would not be able to say anything.  I don’t want my son to have those memories.  E asking for help to talk affirmed I was right when I wanted an assessment at ISTAR now rather than waiting to see if the stutter would just disappear.

As a person who stutters I know all the tricks of avoidance and already E is avoiding.  I watch him struggle to talk and see his mind working overtime to rephrase what he was trying to say, substituting words or even leaving words out.  E has even said “me forgot my name” when he knows that he is going to stutter on his name.  How can a 3 year old intuitively know how to make his speech easier?

March 4, 2013 - Assessment at ISTAR

It has taken me almost week to write about E’s assessment.  I think the emotions were just too raw to write about.  The assessment went fine and the staff at ISTAR is wonderful.  Marilyn (my mentor, former research supervisor, past SLP, dear friend) was there to offer support.  I was honest to Marilyn, and admitted that I’m scared and didn’t want E to face a lifetime of stuttering.  I’ve been trying so hard to be brave and optimistic for my husband and E’s grandparents.  I keep telling everyone that he will have therapy and all will be fine, but on the inside I am completely freaking out.

E did so well during the assessment.  He is normally quite shy and often does not talk in unfamiliar situations, but he talked with the SLP.  My husband, Joe, and I answered a lot of questions about E – I now know how difficult it is for a parent to answer all my questions when I’m the SLP asking about a child.  I don’t think it is the questions that are difficult to answer, but having to answer them on the spot is challenging.  For example: describe your child’s speech, when does he stutter more/less, describe your child’s personality, were there any concerns at birth/infancy?  I would answer a question and then think that my response made E sound worse than he is, and then my next response would make it sound like I had no concerns.  As a parent you want to give the “right” answer, but there are no right answers.

E, Joe and I start therapy at the end of March.  We will be doing Parent-Child Interaction Therapy so it will be more focused on Joe and me.  For now we are to work on giving E specific praise as a way to build his confidence.  I don’t think he is not confident as much as he is introverted. His personality seems to becoming more and more like me all the time.  I would have been perceived as lacking confidence as a child, but will now say that I was just very introverted and chose to be an observer until I was comfortable in a situation.  I have lots of confidence now but a stutter or person’s reaction will still make me feel like that anxious little girl I once was.  I’m not sure how building E’s confidence is going to make him fluent, but I am the parent and will do what the SLP has suggested (I’ll also teach him fluency skills at home).

 

March 5  - Practice Makes Perfect?

E has taken to practicing words that he is getting stuck on.  Out of the blue he will start repeating a word, usually his name, to practice saying it. We have talked about how he needs to practice skating to get better at it and seems to have applied this to his speech.  He practices his name, usually stuttering on it, and then says “Mommy I can say my name.”  I know I should model his name and get him to say it fluently but this seems next to impossible right now so for now I just say, “good trying” and think that at least he is still talking.

Joe and I have been modeling "stretch" and sometimes it is successful at eliminating the bumps (i.e. stutters) but often on his name it is not.  E is so proud when there are no bumps and also tries to be so brave when he keeps practicing his name and there are more and more bumps each time.  My mom watched him “practice” tonight and you could see that it breaks her heart too when he stutters.   Even as an SLP and user of fluency skills, I’m not sure how to help E when he continues to stutter on his name when given a model.  I know what he needs to do, but I don’t have the words to explain to a little boy how to release the tension, ease into the word and lightly move his tongue for the second syllable…maybe we will figure that out tomorrow.

March 7 – When We Just Don’t Understand

Today was a challenging day.  E was stuttering a lot and I’m finding that I have to work really hard to maintain my fluency if he is stuttering.  I am exhausted.  E attends a library story time so we are always in a bit more of a rush after lunch to get ready to go to library.  Today, he was trying to tell me something as we got into the car.  I got his sister’s car seat in and he was stuttering and trying to tell me something.  I had no idea was he was saying as the stutter was about 10 repetitions and then he would just stop and move on to the next word. I told him to get in the car, and tried to guess what he might be saying.  As I strapped him in his car seat he said it again “u-u-u-u down” and said “Mommy you say it.”  I had to tell him that I couldn’t say it because I didn’t know what word he was trying to say.  You could see the hurt and frustration in his eyes and I watched his eyes fill up with tears.  I told him I was sorry and would try to guess.  Luckily the word started with /u/ so there weren’t a lot of words to guess.   He was saying “under down” which was really “underneath.”  He had seen snow melting underneath the car in the garage.

Sometimes his speech is quite difficult to understand as a result of sound errors (e.g. no /f/ or /sh/, k is t).  Even when he isn’t stuttering, I need to ask him to repeat what he has said.  Now with the stuttering it seems even harder to understand him.  He has the speech errors, stutter repetitions and just stops saying words when he is stuttering, which all results in a lot of guessing.  I hate to ask him to repeat! I'm often interpreting for my husband or my parents.  No one wants to stress him by getting him to say things over, but I’m worrying that they are not catching all that he is saying.

March 11, 2013 – A reaction to stuttering?

E had pretty good weekend fluency wise. He goes to a Sportball class with Joe on Saturdays and Joe said he was just a little off this week.  His skills weren’t as good as usual and he just wasn’t as involved as he usually is.

Monday is swimming lesson day, and he was not as willing to try swimming skills as he usually is.  I figured it was just a result of the time change, as I know I didn't feel like going swimming today either.  E has commented after his preschool classes, and after swimming today that he was "not noisy".  I’ve told him that I’m glad that he’s doing good listening but I’ve realized that this is his way of saying that he is not talking.  At swimming there is not much opportunity for talking but I’ve seen the other kids talking to each while waiting for their turns.  As a parent I’m thinking good he is listening and the instructor does not have to tell him to be quiet. As a PWS, I’m wondering if he is not talking because he is afraid to stutter.  Would he already have developed that fear of listener reaction?  I have pushed myself since he was born to be social – so we have gone to child and parent classes and I’ve talked with other parents (not enjoying any moment of it).  I did not want E to develop my anxieties about social interactions, but maybe he has.

Before he started stuttering, I wasn’t concerned that he would not talk with other kids.  He was a late talker so I thought some of the social language skills were just late to develop too and he is a shy kid.  It’s hard to be gregarious when neither of your parents are blabbermouths.  Now you throw stuttering into the mix and I see every little quirk in his behavior, sleep pattern, social interactions, etc.… as perhaps a reaction to the stuttering.  I’m going to drive myself insane if I keep this up….

 

 

March 14, 2013 – What Makes My Child Special

I’ve been writing for a few weeks now about E and his stuttering… more about his stuttering and very little about him as an individual.  I don’t want him to be seen as just the kid who stutters, as there is so much more to him than the way he talks.

I often ask the families that I work with, what makes their children special? So here goes – what makes my child special:

At home and in comfortable settings, he is lovable, happy, fearless, and imaginative.  He spends hours playing with his Thomas the Train trains, cars from the CARS movies, and cranes.  He loves cranes and any vehicles with hooks for towing and lifting.  He plays very well on his own, but will play with others when he is comfortable with them.  He can be a little bossy when his cousins aren’t playing trains how he wants them to.   E loves books and nightly stories are enjoyed by all of us.  He is usually fluent during book sharing.

He loves to run, jump and climb.  He has taken to sprinting around the house lately (we so need our snow to melt so we can run outside).  Already he loves sports and often practices throwing his football, kicking his soccer ball, and hitting his baseball in the basement.  We’ve been going skating and he hopes to one-day play hockey.  He takes swimming lessons and enjoys being in the water.

He has a phenomenal memory.  He remembers little details and often blows me away when he recalls them.  E is a thinker and his memory is going to be a strength once he goes to school.

E loves to help others.  I often tell him that he is a “really useful boy.”  Anyone with kids who like Thomas the Train will know that the trains all want to be “really useful engines” so E thinks this comparison to Thomas is funny.   I wish I could get him to be helpful by putting his toys away but that is one thing he does not like to do.

E is extremely polite.  Joe and I have modeled manners for E and he never misses saying a please or thank you.  E loves to share and is happiest when sharing with his Nana.

E is truly a special boy and we see this great kid when he is comfortable.  When he is in unfamiliar situations then he becomes an observer.  He is quiet, needs adult encouragement to participate in activities, and has a look of sadness/uncertainty.  This look worries me, as I so want him to not hold back; this is when I see myself in him. I just want him to feel comfortable.

 

March 15, 2013 – Building Confidence

The first step in the therapy we are going to be doing at ISTAR is to build up his confidence. Anyone seeing E interacting at home would say that he is confident, but when he isn’t comfortable then, yes, he does appear to lack confidence.  How do you make a child confident?  Does he lack confidence, or is his personality just more introverted? We have been working on increasing praise.  He has always received a lot of verbal praise and I’m thinking maybe it is has gotten a little excessive.  E will now do something (e.g. hang up his coat) and then ask, “Mommy, is that being helpful?”  I’ve gone from having a child who smiled when he received praise to having a child who seems to need to hear that praise for affirmation.  I want him to grow into a confident and independent child who has self-worth.  He needs to value his own successes and skills and not rely on others for their opinions.  I guess we’ll have to discuss this with the SLP when we have our first treatment session.

March 18, 2013 – A Stuttering Day

E had a reasonably fluent week.  Every so often he struggled but overall was doing okay until today.  I’ve always said that I have stuttering days and well this has been E’s stuttering day.  He has shown his usual repetition (e.g. a-a-a-apple) and prolongation of initial vowel sounds (e.g. EEEEEat), but he has also been repeating whole and part words (e.g. my my my cookie;  pi-pi-pi-pillow) today.  There have been some unusual pitch and voicing behaviors, and some secondary behaviors of eye and head movements.  By lunchtime my chest hurt from tightening up every time he stuttered.  Joe and I tried to slow him down and modeled "stretch" for him, but he didn’t seem to be able to gain control today.  I just want to wrap my arms around him and protect him from the world.  I’m so scared that one day another child or adult will make a comment or laugh at him – I know that day will come and I guess its my job to build him up so these comments aren’t damaging.  “Sticks and stones can break your bones, but names will never hurt you!” If only that was true….

March 23, 2013 – Filling in Words

I’m beginning to understand why people used to fill in my words for me.  Sometimes E is struggling so much that I just want to say the word for him.  He is trying so hard and I know that one more repetition of the sound and he will probably just give up.  I don’t want him to give up on talking but I know that filling in words is not helpful.  Sometimes I think that if I just model that one phrase that it will be enough for him to continue on his own with less struggle.  Right now my approach is to just wait and let him say it but sometimes his big brown eyes just stare at me and I just want to step it and say it for him.  Being a mom of a child who stutters (CWS) is hard too!

 

 

March 29, 2013 – That Dreaded Word

Every person who stutters (PWS) that I have every met can tell you that they have a dreaded word; a word that he/she stutters on every time he tries to say it.  For many people it is their name or some word that has significant meaning like a number that is in their phone number.  E is having trouble saying the word “open.”  A preschooler says this word a lot since they need help to open a lot of things – doors, containers, backpacks, etc.  E says “open” about 500 times in a day; okay maybe that’s an exaggeration, but he says it a lot.  He needs help to open the door of the car, to open the fridge, open his packaged snack, open his yogurt, etc.…  Since his little sister is crawling, we have baby gates in two locations in our house.  E is able to open the gates about 25% of the time, which means he needs to ask for it to be opened the other 75%.  Sometimes he will stutter and eventually say “open,” but I’ve noticed that he has started to say “help me with this” (gate), ‘I need in there,” “can’t get it (fruit snack package).”  He can be quite creative at saying “open” without saying “open.”

It amazes me how quickly we learn these coping mechanisms.  He still calls cars “go-goes” and often leaves out words when asking questions (e.g. where we go today?) but he has the language ability to avoid using the word “open.”

 

 

April 4, 2013 - Therapy

We have had two treatment sessions at ISTAR now.  I am so nervous going to the sessions and have realized how daunting treatment sessions and meetings must be when parents have to meet with me.  Attending therapy is being good for me professionally and is making me re-evaluate some of my own clinical practices.  E loves going to ISTAR, as he likes playing with the toys.  Most of the hour session is Joe, me and the SLP discussing what we need to do to build on E’s fluency – when during the days he is most fluent and what we can do to facilitate that fluency.  I don’t want to go into a lot of detail about the therapy, as it is very individualized to our family and E’s communication.  I won’t share the goals that we are working on, as what we are working on may not be helpful for any other child.

I understand the rationale behind Parent-Child-Interaction (PCI) Therapy and am sure that it is very successful, but I feel that some tools/strategies (i.e. fluency skills) wouldn’t hurt. I don’t want to do this interaction therapy for 6 weeks, then 6 weeks of consolidation time to then re-evaluate and determine that E needs some more direct therapy.  I would rather do the direct therapy now, and if the stuttering miraculously disappears then great…. but if it doesn’t then E’s had fluency skills/Lidcombe practices 12 weeks sooner.

April 6, 2013 – Stretching

I’ve been kind of adamant about teaching E skills and not waiting.  The SLP has asked both Joe and I what helps E be fluent during our special one-on-one time, and our response is fluency skills.  We work on the other targets that she has suggested and I’m sure that they too will help his fluency, but a slower rate and continuous airflow is going to help too.  Fluency skills will also make me feel that I’m giving E tools to help his speech.  I can lower the demands on his speech when he is talking with me, but that is not going to help him when he is interacting at playschool or playing with his cousins, but knowing to slow down his rate of speech will.

I want to help E develop a toolbox of techniques to use for his speech – this may be PCI goals for his mom and dad, praise for fluent speech (i.e. Lidcombe) and fluency skills.  Maybe we’ll throw in some yoga for relaxation, and summer camps for self-acceptance.  I just want him to be fluent – or at least to feel that he can control his stuttering.

April 9, 2013

E’s speech has been very good the last week or so.  He is still stuttering, but the severity and frequency of those stutters is less than it has been.  He’s probably back to where his speech was 6 weeks ago.  I almost feel that I’m tempting fate by writing this. His stuttering is very transient, so one moment he can be very fluent and then the next moment he is struggling on every word.  Since January, there has been probably 3 times, about a week long, where he seemed to be improving.  Joe and I would comment to each other that E was doing well and that maybe it was just developmental stuttering, but then the stuttering would reappear full force.

It’s early morning and I can hear E waking up in his room….hoping for a fluent day!

April 11, 2013

It’s Thursday today – therapy day.  E was excited all day about going to ISTAR and I spent the day wishing that we didn’t have to go.  The therapy was fine, but I so wish that I could be taking E somewhere other than speech therapy.  E continues to be fluent and I am so grateful for that, but I don’t know why he is fluent this week and wasn’t last week.  Part of PCI therapy is to do more of what makes the child fluent.  I don’t know what is making E fluent and I was guessing when I made suggestions to the SLP.  I’m wondering how a parent who is not an SLP would find this therapy approach – am a reading too much into the sessions or trying to utilize my training too much?  I’m finding the sessions very frustrating as I would like someone to tell me how to help E’s speech rather than asking me what I think.  I do agree that structuring conversation so E is saying less is helping; for example, giving E choices rather than asking open ended questions (e.g. Do you want an apple or an orange).  I know that eventually, you move to less structured conversation and hope that he can be fluent then too.  I am constantly thinking about what I need to do to target our PCI goals during the special times that E and I have each day.  I just want to play with my little boy and not think about what I can do to make him more or less fluent.

Future topics:

  • whento step in and when to just wait
  • future (schooling)
  • fake yawning or secondary behavior
  • · “How is E?” – Nana code for is E stuttering a lot or a little today
  • · Smooth road – Apraxia book
  • · Therapy now as compared too 30 years ago
  • · Fluency skills – why E is so good at them

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