“What is wrong with his tongue?” This question has been asked by myself as a mother, by caregivers looking for answers, and by countless professionals. The following is an attempt by myself a mother, and a Speech Language Pathologist to explain this recurring question that every Speech Language Pathologist hears.
“What is wrong with his tongue?” I asked this as I squinted down at this beautiful human I was in awe of creating. I was also squinting with anticipation of the pain that was sure to come when my eight-hour old newborn latched. The nurses answered “nothing” he is perfectly healthy. They told me to “pop out his lips” and “wait until he opens bigger”. Twelve hours later, still painful. I was unable to keep his lips spread out. He was sucking his lips in every second; pulling, painful and bleeding. I found myself asking, “Was nursing supposed to be this painful?” Again I asked the nurses, “what is wrong with his tongue?”. Again, I asked to see the lactation consultant. 24 hours after birth, I begged “please can the lactation consultant see me now.” 6 hours before release from the hospital I pleaded “I can’t go home like this I won’t be able to nurse, it is not my milk supply, but this pain is unbearable.” Finally, just before hospital release the lactation consultant was able to make her way to our room. In TWO seconds she diagnosed my first born son with the unmistakable heart shaped anterior tongue tie. One hour later his pediatrician had completed the frenulectumy (a cut of the tiny piece sliver of tissue that tied the tip of his tongue down to the bottom of his mouth). His tongue was released within moments of opening his mouth and within less than a minute start to finish, he was nursing, content, calm and for the first time in the past 40 hours since his birth nursing was miraculously and instantly pain free.
Many professionals now know the unmistakable look of the anterior (front tip) tongue tie. The heart shaped appearance of the tongue is now un-mistakeable to those working in birthing and recovery rooms. Knowledge in the past decade about anterior tongue tie has spread like wild fire, women are nursing at higher numbers than before and support for nursing mothers is improving as well. This is encouraging and I hope the knowledge of anterior tongue tie saves others from experiencing the pain many nursing mothers have had to endure. However, there is still more I would like to share about this very question, “What is wrong with his tongue?”
Fast forward three years to my second son, he is two. He is still not talking. He tried to say words readily, while I used all the tips and tricks I knew of at the time to help encourage him. Nothing was working. “Moose!”, was on his first attempt “aanmawawa” and then he would try again “ehmomo” and finally with increased frustration he would say “wewooo!” before he would finally give up and I would congratulate him for trying. Then he would throw his little hands up behind his head and splay out his fingers, the universal sign for moose. Environmentally he was otherwise very healthy, he ate well, and he understood everything when we talked to him. He followed all our directions and he was a joy to play with. There was no weakness with his tongue muscle, no tongue tie, but I still asked myself “what is wrong with his tongue?”. Physically, he couldn’t move it to the side or up with me when I asked him to. He was however able to move food to the side and he had no problem clearing peanut butter sandwich from the top of his mouth with his tongue. He could point to himself in pictures, yet when we asked “What is your name?” He would just look at us and wouldn’t even try. One year later a brilliant Speech Language Pathologist (not myself) came into our lives, and I finally had my answer to “What is wrong with his tongue?”. She answered “I think he has Childhood Apraxia of Speech, CAS”. I had NEVER heard of it, or maybe I had during one quick 5 minute lecture I had taken 10 years ago and hadn’t thought of again. I dove in, I hit the internet, the old textbooks. I quickly learned no one in my area knew how to treat CAS. Then like a miracle in just 3 short months a training was coming to ALASKA people! Seriously! When does this training ever come here up to the northernmost state? It hasn’t come up again in over 5 years, but it came up just when my mommy heart needed it. After that 2 day training I had learned how to support my then 3 year old son with CAS and I was finally able to help him learn to talk. It took me two more years, of working with him and treating his motor speech disorder before he was finally able to answer “what’s your name”, and he said “Leon!”, loud, clear, quick and oh so proudly! It was the most rewarding day of my career. He has come so far and I will forever be proud of the determined, creative, and loving soul that has inspired, guided and taught me how to help others with CAS.
Since then I specialize in treating and diagnosing Childhood Apraxia of Speech in my private practice. Currently, I am the only Speech Language Pathologist in my area (180 mile radius) with the specialized training it takes to help kiddos with this motor speech disorder. Wait, this is not about me, this is about “what is wrong with his tongue?” Because my goal is to inspire, help, spread the word about “what is wrong with his tongue?” My goal both personally and professionally is to guide more pediatricians, parents, aunts, uncles, grandparents to understand that there is something wrong and that there is someone out there who can help! Our job is to find that person who can help you answer, “What is wrong with his tongue?” Because, 7 years ago there was no one within 100 miles who knew how to help my son including myself.
In my private practice I have seen more answers to “what is wrong with his tongue?” The clinical term is, Dysarthria; a weakness that makes it difficult for children and adults to eat or talk. As a result of muscle weakness, speech is often delayed, slow, and distorted. Feeding is difficult because dysarthria affects the muscles, making it harder to move food around especially the chewy stuff: meats, cheeses, hard veggies, candies etc.
Another answer to “What is wrong with his tongue?” might be posterior tongue tie, this little-known structural difference can significantly impact the ability of the tongue to lift up to behind the teeth, this can impact speech (t, d, n, s, z), nursing and or feeding and can even cause cavities behind the upper front teeth. I recently missed this posterior tongue tie in a client, yet instead of kicking myself for not recognizing I took the opportunity to write and share this. My hope is that there are others who can recognize the signs of this little know structural difference of the tongue. I mistakenly took my client’s difficulty lifting his tongue and producing these sounds (t d n s z) as a characteristic sign of his CAS. (Yes you can have two of these problems or even three all at the same time). With posterior (back) tongue tie, often the tongue can stick out and there is no significant “heart shape” of the tongue as you see in the anterior (frontal) tongue tie. Very few providers know about the posterior tongue tie, but don’t give up! DO your research and or visit professionals that can help you find out if this is “What is wrong with his tongue?”
Motor speech disorders including Dysarthria and Childhood Apraxia of Speech often co-occur meaning they affect the same person who has let’s say for example: Down Syndrome. Please be sure your child is receiving the right type of speech therapy regardless of any other diagnosis your child has. Furthermore, CAS and Dysarthria can sometimes look like Autism at an early age (under 3) because the child is not able to talk and shuts down in social situations because of his difficulty talking. Receiving a full Neurodevelopmental evaluation by a trained pediatric neurodevelopmental team is the best way for your child to receive the correct diagnosis and treatment. Your child can and should receive a neurodevelopmental assessment regardless of the “genetic syndrome” or any previous diagnosis they may also have had since birth.
I believe that my life’s calling and experience with my own children was meant to happen for so many reasons. Of most importance personally was so that I can help others. Spreading my knowledge and sharing my life's experiences can help me achieve this goal. You can help me by printing, sharing and spreading this with others as well! Knowing we are not alone and that there is help for what we are experiencing is so important. I encourage you to seek support, and look for the provider who has experience with, Motor Speech Disorders: Apraxia and Dysarthria or Tongue Ties. Don’t stop until you find that person! Please know I’m here for you with free consultations and online support. Cheers! To finding out “What is wrong with his tongue?”
Did this help you or someone you know? Please e-mail or submit a memo on the contact form and let me know. It helps me to keep the words flowing!