A Parent's Journal, Part 2

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Anonymous
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journal

This is the continuation of a personal journal of a mother whose child started stuttering at a young age. Read Part 1 here.
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.

April 16, 2013 – E the Follower

E began a play school program today. He’s been in the program before so I know that he does not talk with the other kids and the teachers have shared that he usually picks toys to play with where there are only one or two other children. He tells me that he is a little shy at school.

The program has a great gym area that he really enjoys. I’ve peeked in the window of the gym to see what he does and he seems to follow the other kids around.  He doesn’t interact with them, just picks a child or two to follow and chases them from activity to activity.  Today I noticed he was following a boy around and copying what he was doing – being the follower.  This boy was not playing appropriately and E was doing exactly what he was doing.  I then heard the teacher tell both boys to stop; I know E knew what he was doing was not good but he just wants to be like the other kids.  I worry about him being a follower or becoming the child that others can persuade to do things that are wrong.

I’m watching E become more withdrawn during social situations and less confident.  It’s so hard to know this is happening and not know how to fix it.

April 19, 2013 - Advocates

Our therapy session yesterday went really well. We talked about how he was less fluent this week than last, probably because we notice he is using stretch independently during his conversational speech when he is stuttering more. The SLP acknowledged that stretching seemed to be most helping E the most and he was very receptive to it.  It only took us until session 4 for the SLP to accept that focusing on stretch may be the best approach for now.   (*Stretching – prolonging the vowels in words so that the rate of speech becomes slower)

I came home feeling proud of Joe and myself, as we had advocated for using stretch, though we were open to the other methods the SLP recommended as well.  So for all the parents reading this:  do what you feel is right for your child.  If you think your child and your family need to do more/less of something than express that to your SLP.  You are the parent and a parent’s instincts and understanding of their child have great value too.  Speech therapy is not a recipe that you follow and should be different for every individual.

Each day we are doing activities that focus on stretch, but we are also introducing it incidentally throughout the day.  I think he is so good at it because he has always heard it from me.  I’m so proud of how hard he is working on stretching his words and fixing his bumps.

April 22, 2013 – Therapy Then and Now

I started to stutter at the age 2 and a half.  My mom asked our family doctor about my stuttering and she was told not to worry, as I would outgrow it. The doctor was still telling my parents that I would outgrow it when I was ten. I wonder if he is still giving that advice to parents now?  I know that some medical professionals still give this advice – as a parent if you have been given this advice, PLEASE contact a speech-language pathologist.

My first experience of stuttering therapy was when I was seven.  I learned how to turtle talk – not much different than the stretching that E is doing now.  I was also taught relaxation and visualization exercises.  That SLP made an impact on me as I decided at age seven to become a speech pathologist.

I think the difference from then to now is the emphasis on moving the skill use from the therapy room to natural, day-to-day activities.  All of E’s therapy is done through games and everyday conversation.  It’s our job as E’s parents to increase or lower the complexity of the language during these activities so he is fluent and feels successful.  He enjoys his special talking times that we do each day.

April 26, 2013 – Unusual Behaviour

Not long after E started to stutter, Joe noticed an unusual facial movements.  I’m very aware of secondary behaviours or things that a person will do as a way to move through the stutter such as eye blinking, head nodding, or arm swinging, and I was watching E closely for such behaviours as this would indicate that his stuttering was becoming more severe.

One evening, Joe mentioned that E was doing this facial grimace and thought it was a secondary behavior.  It was like an exaggerated, reverse yawn.  I asked E what he was doing and he said he was “just a little tired.”  Now when I see E doing this I just smile.

E’s speech has been good during the last two weeks.  The stuttering has been mild and the avoidance of words, asking for help to talk, and frustration has disappeared.  This has eased my worries, but we continue to stretch and have no plans to stop.  The therapy is working!

May 7, 2013 – Trip to BC

I haven’t had the opportunity to write in almost two weeks.  My grandfather passed away on April 27 and our life hit a big bump for a few days.  I don’t think E fully understands the loss, but does understand that his mom and dad, and Nana and Papa have been sad.  We had to travel to BC for the funeral and then E met family that he sees maybe once a year or even less.  This was initially very intimidating for my shy guy, but with time he warmed up to everyone, and having his cousins with him helped.

My grandpa was a retired railroader and loved trains so we kept our plans to travel to Calgary to ride Thomas the Train on May 4.  We travelled from the interior of BC to Calgary on May 3 and had a great time at a Day with Thomas.  E was so excited and the happiest we had seen him in weeks. The long drive and more time away from home were well worth it, just to see the genuine delight on E’s face.  We didn’t worry about his speech all day and just let him talk and stutter and be a kid.  He deserved a day without thinking about how he was talking.

Since we got home on Sunday, E’s speech has been the worst it has been in weeks.  I was hoping that it would settle down once we got back to routine but so far that hasn’t happened.  When we do our structured speech practice, his speech is much better but can’t seem to keep that control during daily activities.  This has shown me how fragile his speech system is and how much work we still have ahead of us.

May 8, 2013 – Play Date

E’s SLP has been encouraging me to set-up play dates for him.  I was able to meet with a friend and her two kids this morning.  We have not seen them in a while, but soon E was playing with the little girl.  But he was not talking.  He would point, gesture, use eye contact and even take her hand as ways to communicate, but was not talking. After about an hour you could tell that he was more comfortable and was talking a bit more. It’s so hard to watch him become so introverted. I still do not know how I can build his confidence so that he is not afraid to talk.

It has been recommended that we set-up longer play dates so he has more time to become comfortable.  I wish I knew another family going through therapy so that we could work on this socialization goal together.  Play dates with another child who stutters would be great… already my mind is thinking that I need to start a support group for families.

May 11, 2013 – Happy Mother’s Day

Tomorrow is Mother’s Day.  As I sit here to right tonight, I am wishing that I could just take E’s stutter away and wondering how many years that my mom wished that for me.

I have been extremely blessed and have a very supportive family.  My mom and dad would have done anything to ease my communication difficulties as I was growing up.  My mom was my voice when I could not say the words myself and then became my biggest cheerleader after I had therapy and was learning to do my own communicating.  She is my best friend and without her I know that I would not have achieved the successes that I have.

My mom’s role has changed in the last few months to that of Nana to a child who stutters. She’s the one who hugs E and tells him it’s okay when he is refusing to talk. I now have the role that she once had of telling my child who stutters that he needs to use his words and making sure that he does his speech practice even though he would rather be playing outside.  I’m becoming my mother and that’s a good thing.

Happy Mother’s Day Mom and thanks for everything.

May 13, 2013 – Preschool Programming

I have been attempting to get E into a communication-focused preschool program for the next school year.  We could enroll him in a typical preschool program, but then we need to look at speech therapy  too and possibly continuing with the weekly sessions at ISTAR. Therapy would be at least twice a week in addition to preschool and any other activities to work on his socialization.

A specialized program would mean that he could have the preschool experience while receiving speech and language therapy right within the classroom. He would receive some therapy for the speech sounds, would hear models of slower speech and would be gently encouraged to socialize with his other peers. It would be a very positive experience and that is what I want his first school experience to be.

I have contacted a preschool program and am now waiting. I have sent two emails and have made a phone call and have had no response. The waiting is so hard! This program was our number one choice, but I am now thinking about what other options are available.  A different program will mean a change of day home as well.

In September I will be going back to work and not being with E all day. There will be a new provider and new peers he is not familiar with in a regular preschool.  I wish the program that I have contacted could realize the impact these changes will have on my little boy socially and speech-wise.

May 16, 2013 – Time for Speech Practice

Spring has finally arrived in Alberta and we are spending as much time as we can outside.  E loves the outdoors and spends hours happily playing with his trucks in his sandbox, trying to catch butterflies in his butterfly net and kicking his soccer ball.  I love to hear him chattering away fluently as he plays by himself – he has no care in the world and no thought of bumps or smooth speech.

Part of E's therapy is to incorporate two activities per day while focusing on using a slower rate and having no bumps. His father and I each do one activity. We want these practice times to be enjoyable, not a chore.  I have attempted to do the practicing outside, but there are just too many distractions.  I have created some more motivating activities using his favourite CARS characters, but even that interest is short lived.  I’m thinking that today I will hide objects in the sandbox for us to find and hope that he will happily play along.

E’s speech has stabilized again and we are hearing around 20 stutters per day.  The number of repetitions per stutter (e.g. my-my-my) has decreased and I am no longer hearing variances in pitch during audible prolongations (e.g. waaaater).  With a decrease in severity, I am less concerned about fitting in the speech practice times and am just using a slower rate and repeating what E has said when he stutters.

May 22, 2013 – Last Therapy Session

E had his last weekly therapy session today. He has continued to do well, with his stuttering decreasing. He did not stutter once during the hour-long treatment session, which made us feel very proud of how well he is doing.

We now enter the “consolidation” stage of therapy – we continue to work at home and follow-up with the SLP in 6 weeks.  His dad and I will continue to work with E daily through specific speech focused activities, and will incidentally stretch throughout the day.  I think even if E has days when he is stuttering more, we will be able to work with him to get his speech smooth (stutter-free) again.

May 24, 2013

Yesterday I went to visit the preschool program that I want E to attend, and he will be able to go there in September.  I am so happy that he is in the program and know that his first school experience will be positive. I shared how hard we have been working in E’s communication during the last year. This will give him a supportive environment to work on his social skills and to build confidence as a communicator. A huge load has been lifted from my shoulders, as I was very worried that we would have to start looking at other options.

Another positive:  I have not heard E stutter once today. This does not mean that he hasn’t, as I often miss mild stutters if I’m not concentrating on listening for them.  I know that I have stutters in my speech all the time and don’t even really process that I am stuttering.  I’m accepting of a certain level of disfluency in my speech and may be accepting of that level in my son’s speech as well.  E had a fantastic speech day with either no stutters or a few mild ones.

Future topics:

  • whento step in and when to just wait
  • future (schooling)
  • “How is E?” – Nana code for is E stuttering a lot or a little today
  • Smooth road – Apraxia book
  • Letting him just talk (no skills)
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