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.
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.
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?
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.
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.