Childhood Apraxia of Speech: Tyson’s Story

Hi all : ) I have been debating posting this because it such a personal story. I felt it was important to share our story with family and friends, but most important for other families who might be going through the same or similar situation.

Our perfect, sweet, hilarious and loving little Tyson has been diagnosed with CAS, aka Childhood Apraxia of Speech. This is only the beginning of his story with much still to be written.

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Tyson was born December 28, 2011, 10 lbs and 4 oz. He was the most beautiful little boy with thick dark hair and cheeks to die for. He was such a happy baby and loved to sleep. He nursed like a champ and was on the move immediately. He was sitting at 5 months and walking by 9 months. He loved to jump, run, dance and be silly. Before he was one he made a few sounds and even said mama! Then around 15-16 months, he wasn’t saying anything (not even the few words/sounds he had said before) and I began to get worried. Our firstborn Payton was talking in full sentences by 16 months, which I knew was early, but I also knew by now he should be able to say something, anything! Even though Tyson wasn’t speaking, he was trying. No words were coming out, but he attempted to communicate with his version of talking, which were grunts and random sounds. I would try and get him to imitate words and you could see his mind working so hard, but he couldn’t get the sounds to come. He was frustrated and would get so upset that no one seemed to understand him. At a doctor’s appointment I mentioned to the doctor that I was worried about his speech development. They said not to worry, boys speak later, he was still so young etc. and we could discuss this again at his 2 yr appt. I tried to take that in, but something in me knew it wasn’t right.

I felt horrible and immediately turned to the internet (haha) for help. I found many other parents going through similar situations and came to the conclusion that we needed to contact the states Early Intervention Program and visit an ENT (Ears, Nose and Throat Doctor). At first Billy was not on board and thought I was crazy. He said Tyson was perfect, we needed to wait it out, but I pushed and pushed and we made appointments with both. The Early Intervention Program deals with all areas of development and we set up evaluations for everything. The program comes to your home to evaluate and also offer their therapy. After his evaluations, it was determined Tyson did not actually qualify for the program by his scores, but because of the complete lack of speech, he was able to get in. We had an amazing therapist coming to work with Tyson once a week and also counsel our family on skills to work on throughout the week. Around this same time we also made an appointment to see the ENT. The ENT found quite a bit of fluid in Tyson’s ears and said he would need tubes to drain it. He said it was very possible the fluid was affecting his hearing. Everything he was hearing was probably muffled, which explained why he could not imitate us.

We went ahead and made the ear tube appointment as soon as possible, and also decided to do a complete hearing test. The surgery went great and he passed all of his hearing tests during the follow-up appts. Great, “now we know” with certainty that he can hear us and also a relief because it gave us something to work with. He could hear us, so at least we knew that it was not his hearing that was affecting his speech.

A few months passed (with no huge improvements) and after another speech evaluation we heard the term apraxia for the first time. Neither Billy nor I had ever heard of apraxia. After being told not to research it online, I immediately researched it online lol. I was definitely not prepared for what I read. ¹CAS is a motor speech disorder where the child knows what they want to say, but their brain can not coordinate the muscles needed (lips, tongue and jaw) to speak. Basically Tyson understood everything and knew exactly what he was trying to say, but his brain couldn’t tell his mouth to actually say it. An easy analogy I use is that the highways from his brain to his mouth were never built, so we have to help him build them.

After reading what apraxia was, I was devastated. Our poor sweet boy was literally living in a speech prison. Here he understood everything, with complete thoughts in his head, but could not verbally communicate them to us. I also found out that apraxia is not a developmental disorder. Tyson would not simply outgrow CAS, he would need intensive therapy to speak one day.

I should add that through all of this, I was completely overwhelmed/sad/angry/confused. Through it all Billy was my rock and I leaned on him for the most mental and emotional turmoil I’ve ever experienced. This was our BABY and to think he was dealing with something that would affect the rest of his life at such an early age was a devastating feeling. Looking back now, I want to slap myself. Why was I devastated? He was healthy, happy and so loved. Maybe he wasn’t a typical talker, but he was perfectly made and exactly who he was supposed to be. Billy made me realize this was not something to pity, but to take on like any other challenge in the world. There was nothing “wrong” with Tyson, life is about overcoming obstacles and this was nothing but an obstacle.

Challenges are what make life interesting and overcoming them is what makes life meaningful.

~ Joshua J. Marine

After hearing/learning of apraxia, we decided to get started helping Tyson immediately. We found a private speech therapist in our area and began seeing her twice a week for 30 minutes. After a few months with her and endless hours of research we found a well known and phenomenal facility that focused on Apraxia. It was called Foundations Developmental House, owned by Lynn Carahaly. She developed a program called the Speech-EZ Apraxia Program that was doing amazing things for so many children. Countless blogs written by other families going through our exact story raved about her program and traveled countless miles to attend workshops/camps for their children. We contacted them and set up an appointment to visit. We immediately felt at home and knew this was the place for Tyson. And oh yeah, it was a two-hour round trip from where were living at the time.

As destiny would have it, Billy and I were already shopping for a new house, our first house! After learning about the Foundations Developmental House, we knew we needed to move as close as possible so that we could get Tyson the help he needed. With the help of a realtor we were lucky to move fast and find a home close by. It was a big move and a huge step, BUT it was without a doubt the best decision we’ve made as a family. I always get emotional thinking about this huge change in our life because Billy worked so hard to make it all possible. Not only was he working so hard to allow me to stay at home with our kids, but now he was working to change the life of our son. I smile everyday I wake up in our beautiful house and think about how far we’ve come. Not only did we move close enough for speech therapy, but this is the home we will raise our kids in : )

After moving we started speech therapy before we were even unpacked! Tyson started going 3 mornings a week, an hour each day. He was beginning a journey that would shape him for the rest of his life. Tyson’s SLP (Speech Language Pathologist) Anna-Alyse, was literally sent from god and I can’t even begin to explain how grateful I am for her. Dealing with any 2 yr old is a challenge and a 2 yr old who can’t speak? Yikes! She welcomed him with open arms and Tyson fell in love. I won’t lie, the first few weeks were a HUGE challenge. Tyson didn’t want us to leave the room and definitely wanted no part in sitting at a table for intensive therapy. After a while though he was quick to adjust and started stopping us from leaving the lobby. He puts his hand up to say stay while he runs back with Anna-Alyse. After a few more weeks, he started sitting down at the table and getting work done. I’m not sure what magical powers she has, but we love her for it.

This is where we are now. Tyson continues speech therapy 3-4 days a week and has grown more than I could imagine. He can say all sounds (when he wants to) and we are working on putting sounds together. He can say a few words and has many “words” for everyday things. Hearing him call me mama again after over a year was a moment I will never forget, and it meant more to me than I can explain. We recently decided to re-evaluate Tys for OT (occupational therapy) to see if it would help with his speech progress. We are starting 2 sessions a week of OT and hope to see even more progress. With about 6 one hour sessions a week Tyson is quite busy, but he enjoys going, so we feel good about his schedule. Even without speech Tyson tells us so much. It’s his hugs and snuggles every morning, his happy laughter while he plays, his tears when he is upset, his kisses throughout the day, and the way he cups your face to say I love you. We all love Tyson so much and I know his story will have a happy ending. There are very tough days and moments I want to cry for Tyson, but I remind myself that he is perfect. Our hope is that in the next few years he will find his voice and start kindergarten with typical speech. We can only take a day at a time and I try hard not to look too far ahead. I can only hope he knows that we hear him, we get him, and we love him. One day he will look back and be so proud of the immense challenges he was able to overcome. I am so proud of him and will never know the strength he possesses. He is our warrior man or as Billy calls him “Champion” and I can’t wait to hear him talk my ear off one day.

Those who care about you can hear you, even when you’re quiet.

-Steven Maraboli

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There is so much more to this journey, but this is a quick tell all to explain how we got here. As time goes on, I will share more progress, in depth explanations and new things we are trying etc. If you have any questions or want to know more, please contact me! I have gained so much knowledge and strength through the online community of other families struggling like ours.

A few random side notes to help those just beginning their journey….

Explore your options

Like all unknown issues with a child, I urge you to explore all options/evaluations etc. With Tyson we didn’t take one opinion and go with it. We looked down multiple avenues to find our best route. We evaluated him for everything under the sun to eliminate any other disorders he might have had. Although he is diagnosed solely with CAS, it was important to us to rule out any other “obstacles” that might get in his way.

find an expert

Find an SLP (or any other specialist) that loves their job and your child. With such an intensive therapy, your child needs to enjoy going to therapy. Yes it’s hard and there are definitely tough days, but you want this to be a good experience for your child. This is going to help them find THEIR VOICE and what is more important than that?

natural remedies

Don’t rule out natural remedies. We are just now starting to explore the possibility of supplements/diet changes that can aid in his speech progression. It might seem silly, but is it? Our amazing bodies need the right nutrients to function correctly and there are experts out there that can help you.

online support

Everyone always says DO NOT go online and look up explanations etc, and for the most part I seriously agree. However, the online community can also be your biggest support. There are families everywhere with stories to tell and advice to give. I don’t think you can find solutions online, but you can definitely find ideas, tips and resources to get help. My favorite blog for apraxia is Jake’s Journey, written by Jake’s mother Tori. She is honest, uplifting and so knowledgable in CAS. Search out these types of blogs and I promise you won’t regret it : )

Smile, go on

Get the support you need. I know this is happening to Tyson, but it’s also happening to every person in our family. Everyone is affected by this all consuming disorder and it’s important to stay positive and not get sucked in by sadness/guilt/confusion/anger etc. This is one small part in your long life and we will all get through this!

trust your gut

I knew something was up with Tyson’s speech and I trusted my senses. We are our children’s advocate and it is our responsibility/right to get our children help! I had countless people tell me not to worry and hey, they could have been right. But they weren’t. You may go and find out nothing is going on. Awesome! Now you can breathe and move on.

find joy in the small things

Tyson may not be speaking yet, but he is healthy, smart, happy and developmentally where he should be (besides speech). We can dwell on the hard things or enjoy all the good things. Choose to embrace life and all the blessings you’ve been given.

I will continue to blog and get more in depth on Tyson’s disorder, but for now this is good. Thank you for taking the time to read this very personal and emotional post. I hope this helps you as much as others have helped me.

¹ For a more thorough definition read here or here.

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20 Comments

  1. Alison wrote:

    Oh jayme!! I had no idea you were dealing with all of that! You are truly such an amazing mom. You are so brave for writing this and I am so happy you did! Imagine how many other moms you are helping that are searching for answers for their own baby. I have no doubt your beautiful little boy will thrive with yours and Billy’s love and support through all this 🙂

    Posted 12.11.14 Reply
    • jaymepierce wrote:

      Thank you!! I hope I can help any other families that are struggling with something too. I have no doubt Tyson will get through this, no matter how hard it seems right now : )

      Posted 12.11.14 Reply
  2. Alicia wrote:

    Jayme… You and Billy have done an amazing job with Tyson!!! I know it’s hard especially when they tell you something is wrong with your baby… I know the feeling… Being told Andrea had autism was devastating to me but I learned that she was still my baby and I would do anything possible to take care of her and help her… You are a great mommy friend!!!! Love you and can’t wait to see you guys!!!

    Posted 12.11.14 Reply
    • jaymepierce wrote:

      Thanks so much lady : ) I admire your strength so much! You are such an amazing mommy! We need to get together soon, I miss you : (

      Posted 12.11.14 Reply
  3. Amanda Ruiz wrote:

    My oldest (Damien) has been in speech and OT for 6 years and has made sooo much progress. I’m confident your beautiful boy will tackle his challenges with his loving and supportive parents by his side!

    Posted 12.11.14 Reply
    • jaymepierce wrote:

      Aw thank you! So good to hear positive stories from other parents! I know Tyson can get through this!

      Posted 12.11.14 Reply
  4. Becky Blackstock wrote:

    Wow Jayme I didn’t realize you had these issues with Tyson. I am so glad you found out early and so happy you went up to bat for your baby boy and getting him help early! The earlyer you get help the better off the chilren do with any issues! All your babies are beautiful. Are you going to go back to teaching again any time soon or be a stay at home mommy now. I don’t know if you remember My daughter Dori and all her heart problems/surgeies…but like you said you have to look at the day to day and not at the big picture or issues and that gets you through ALL the stuff…God Bless you and Billy and your wonderful children!!!

    Posted 12.11.14 Reply
    • jaymepierce wrote:

      Hi! I do remember Dori and her heart problems. You are such a strong mama for helping her through all her struggles! I may go back to teaching once all the kids are in school. I won’t be staying home for sure, but not sure where I’ll end up lol. I love teaching and my students, but it’s so far off, who knows what will happen : )

      Posted 12.12.14 Reply
  5. So proud of you for sharing your story! It feels good to just get it out there, doesn’t it? So glad we have met along this journey with apraxia. Best of luck to you in healing your son’s voice.

    Posted 12.12.14 Reply
    • jaymepierce wrote:

      Thanks so much for reading : ) Your blog has been such an inspiration and support through Tyson’s journey!

      Posted 12.12.14 Reply
  6. megan morton wrote:

    Hu jayme, i found your blog through kambria. I also went to arhs. My tsin boys (garrett and evan) born 11/17/11 have been in speech for two years. Over the summer, we were assigned to a new slp who had high speculation that both boys have apraxia. It has been a long tough journey, but i jut heard “i love you” in their luttle broken voice. It was a huge milestone and was worth a million dollars to me. Sorry that youre having to also go through rigorous therapy, but tyson is blessed to have you!

    Posted 12.18.14 Reply
    • jaymepierce wrote:

      Hi Megan! Thanks so much for reading my blog! Twins, how adorable! I can’t even imagine how beautiful it must have been to hear I love you. Ahh my heart! I’m sorry that you and your boys have to struggle through speech, but they are amazing kids who are SO strong and special. So happy to hear you are seeing so much progress. Sending good thoughts and prayers your way : )

      Posted 12.21.14 Reply
  7. Courtney Key wrote:

    I am literally sitting at my desk crying reading this. My son Jagger just turned 3 in October, and our experiences are IDENTICAL! Jagger is my third child of 4, he was my biggest baby, and I had him completely natural. As a baby he was full of expressions, laughing, smiling. After he turned 1 I started to realize he wasn’t babbling, at least not like his older brothers did, but I chalked it up to having two older siblings that would “speak” for him and gave him what he wanted before he really ever had to ask. I as well mentioned it to our pediatrician and was referred to an ENT for hearing screenings. He BOMBED those…they were so bad that they scheduled him for ear tubes and adenoid removal for two days later. His tube surgery went great, but the adenoids…not so much. He had chest congestion that we were unaware of since there wasn’t a pre-op done, and when they put the breathing tube down his throat it was blocked off, his body seized up, and he stopped breathing. They were able to remove the breathing tube after giving him an injection of a muscle relaxer…his adenoids were never removed. After that whole ordeal Jagger still wasn’t talking. He passed hearing tests at our states Center for Children with Disabilities . Our ENT wanted to put him under to have a brain scan done…I declined. I didn’t want to put him through that process again. I instead contacted the local First Steps agency, thinking it was something other than his hearing, and much like your story he tested very high in all other areas, except for speech. The evaluator noted that he was in great need of therapy, but we wasn’t accepting into the program due to the other high scores. I was crushed, but determined. I turned to our town’s Head Start/Preschool program. He was tested again, and scored high in other areas again, but they did notice his severe speech issue, and how quickly he would become frustrated when he tried to communicate. He has been receiving therapy for the last couple months three times a week…and we are starting to notice a difference. It is so upsetting to see him struggle to communicate, and I have had several sleepless nights researching and looking for answers!! I am glad that you were able to share your son’s story, and I will be sending prayers your way.

    Posted 12.29.14 Reply
    • jaymepierce wrote:

      Hi Courtney! Reading this made me tear up! Jagger sounds just like our son and I know he must be one of the sweetest and strongest kids out there. I am so happy he is improving and I know we must share all the same heartwrenching emotions 🙁 Sounds like you are an amazing mommy and have done everything so right! I know our boys will conquer this, and will be stronger for it. God only chooses the most special kids to overcome such huge obstacles! I will pray for Jagger’s progress and your own struggles as a mom watching your son go through this. PLEASE keep me updated. We can share notes and learn more as we tackle this for our boys! Much love sent your way : )

      Posted 12.29.14 Reply
  8. meli wrote:

    Hi I have a question…I took my almost 6 year old to the nurologist he told me he has aprexia but he can not diagnose him because insurance will not pay for his speech therapy I’m so confused .sad that I don’t know what to do

    Posted 1.1.15 Reply
    • jaymepierce wrote:

      Hi! So sorry you are having trouble helping your babe : ( First I would contact an SLP ( Speech Language Pathologist) in your area and take him in for an evaluation. Usually insurance does not cover those, so it would be out of pocket. Then with that diagnosis you need to contact your insurance and see what they cover for speech therapy. All insurance is so different so it’s hard to know what they cover. Many times they will cover a specific amount of visits a year and the rest is out of pocket. Your SLP office should be able to contact them with all the coding from his evaluation and tell you what they will cover. I hope you get it figured out soon : ( Please let me know what you find out!

      Posted 1.5.15 Reply
      • beatriz slp wrote:

        with a 6 year old, assuming he attends school , the school SLP should be able to do a comprehensive evaluation for free

        Posted 11.5.15 Reply
        • jaymepierce wrote:

          Hi! He is actually 3 years old : ) Although the school evaluation will be great one day, he would not receive enough speech through school. With apraxia he needs intensive speech therapy daily! Thanks so much for your input : )

          Posted 11.5.15 Reply
    • beatriz slp wrote:

      If your son attends school he can have a speech evaluation done for free by the school based SLP
      the testing will determine if he qualifies for therapy in the school …which is also free 🙂

      Posted 11.5.15 Reply
      • jaymepierce wrote:

        Hi! I just replied to your other comment, thank you! He is now in preschool and receives some speech therapy, but not enough for his apraxia. We are combining school service with private speech, which is going great! I think preschool has really helped him with communicating with the other kiddos and the private speech really focuses on his apraxia! The growth we’ve seen is spectacular!

        Posted 11.5.15 Reply

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