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Non-Verbal Kiddos - Could there be a very subtle tongue tie?

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    Non-Verbal Kiddos - Could there be a very subtle tongue tie?

    May I share a story about non-verbal kiddos? Could there be a hidden tongue tie that on first glance, might not look like a big deal?

    Our story:

    It started on day 1 of new motherhood. When my first son was born, I tried, desperately to nurse. Getting a good latch was super challenging. When I did... It. Was. Excruciating. Being a new mom, but a new "older" mom at 32, everyone else around me already had children some time before, and I was very self conscious about my skills as a new parent. When it came to nursing, everyone in my husband's family had been able to do it. It was considered a challenging, but doable situation. My brain translated that to mean - "If you were tough enough, or had the will-power, you could do this.". (I had issues that I needed to work through.) I tried and I thought I was being ripped apart. Some aspects of labor were less intense than a single nursing session. I had to give up and use a pump. I tried again at 6 weeks, and had the same experience. I felt like a failure, and I could not understand how anyone could nurse at that level of pain. I was constantly told the same thing - I should expect some "discomfort". I felt like a weenie, and being self-conscious, I decided not to ask for any more help.

    I never understood why it wasn't possible until 16 months later, I had baby boy #2. While in the hospital, and only a few hours old, my new son was found to have a severe tongue tie. It was a stupendously obvious one too - his tongue was so restricted that it wasn't possible to extend it much past his own lips. You could actually see it and feel it. At 5 days old, I took him to a special pediatric dentist (The Woodlands, TX - if anyone is interested) and she numbed it, and eliminated it using a water laser. All of a sudden, he could nurse properly and I had no pain.

    On a whim, as my then 16 month old son still wasn't making any consonant sounds - at all - I asked her to look at his mouth as well. Sure enough, it was there. It was different though. Rather than being obvious like his brother's, it was long, and thin and at the time, she wasn't sure it would cause a problem. Her thoughts were divided on whether it was even mild enough to pose a problem because it was much more subtle and you would really have to go look for it - it was nearly "missable" in her exam. We decided to wait and see if it would truly impede his speech and set a date for 1 month after his 2nd birthday. If he still hadn't developed the ability to make consonant sounds, we would go in and remove it - just to eliminate it as a possibility. It would be more drastic than the newborn procedure, but it would allow him to fully move his tongue. At 2, still no consonants, we did the procedure. Within 2 weeks, he made a few consonant sounds. It took a while, and I had to really work with him with mirrors and pictures, but we have finally accomplished all English sounds. Some of them require more work than others - "Th" is sometimes missed but when I remind him, he's quick to correct it.

    Why is this relevant?

    I wasn't told until after this procedure on my 2 yr old, that my own brother had the same thing. My father too (he had died 20 yrs before). My uncle. One of my cousins. I get that 2 points do not a pattern make, but 6 do. What is especially telling is that other than my 2nd son, none of the other people exhibited a severe enough looking tongue tie to warrant a procedure. All of them were missed until adulthood. Sure, these others had some form of speech therapy throughout childhood. My brother had to learn to pronounce sounds differently and as his was never corrected, you can still "hear" it as he talks. Only my uncle, who at the age of 30, was told by his dentist that it existed. Until that time, he had been accused his entire life of "mumbling". His dentist casually asked if he wanted it fixed, and took care of it, but warned that it would come back. Apparently, if they are not addressed in early childhood, (very very early childhood), they are likely to re-grow. I was told the same by my pediatric dentist. My uncle had to have this procedure repeated every few years because he could feel it growing back and impacting his speech.

    I mention this because my nephew (sister's son) is also a non-verbal 10 yr old. She has had him checked, but they say it isn't there. However, he too, only has vowel sounds. She also tried and couldn't nurse him. Like my son, he also had an easy gag reflex. It frustrates me because I worry that whoever looked, might have missed it or even dismissed it because it wasn't dramatic enough - in other words, apparently it can be super easy to miss, even by professionals.

    I'm not about to imply that one snip can solve all problems. Fixing my son's tongue didn't wipe away his challenges. I only mention this because he actually had a physiological barrier to communication that could be missed, and was missed by pediatricians, speech therapists, and occupational therapists. I had to be directed to a tongue-tie specialist to find someone who could actually recognize it, and even she said it wasn't very overt - even to the point of being missed. This procedure was done just for the sake of "ruling it out". When she performed the procedure, she said that although it was "thin", it was actually very and "dense and strong", and would definitely have been impacting his ability to control his tongue movements. It wasn't apparent until she was "cutting into it" how "tough" it was. Graphic yes, but I think this is relevant. It can hide. It can look super mild, or even be barely noticeable, yet tough, dense, and restricting. My son would have been non-verbal, just like his cousin most likely. Other than these two, none of the other family members with the condition was ever considered "spectrum-y". In fact, I worry that because my nephew and my son have other challenges, this could have been more likely to be missed altogether as the non-verbal symptoms "aligned" with common spectrum symptoms.

    Don't know if this story helps, but it could be worth tucking away in the back part of the brain for the future.


    Melissa

    DS (MP3) - 9
    DS (MP2) - 7/8
    DS (K) - 6
    DD (Adorable distraction) 2 1/2

    #2
    Gosh, I just don't know.

    My middle guy was just as you described - nursing was a nightmare and his latch was a mess. My lactation consultant saw right away that he had a pretty significant tongue-tie and referred me to a super awesome specialist who performed my son's frenotomy at 11 days old. That same doc also picked up on my guy's laryngomalacia (floppy larynx) and explained that this was why he sounded like a donkey when he slept and why he choked and gagged when we laid him flat on his back.

    Now, that same little boy was nonverbal until he was 5 or so; however, he was also autistic. I have no idea whether any physical issues may have contributed to spectrum-related speech/motor delays. I had always blamed everything on autism. *weary laugh*

    My guy still has remnants of a tongue tie. Like you described, his is tough and even the doc performing the frenotomy told me that he wasn't able to get it all but at least "got enough" to get that latch going.

    It is astounding to me all of the factors one has to tease out in order to get at the root of some of these problems. I don't think you're barking up the wrong tree; rather, I'm just not sure anyone will tell you definitively that this is what's causing the issues you're seeing with speech.

    Geez, how depressing! I hope I haven't caused you consternation with my rambling non-answer!
    Mary

    DD14 - 9th core + CLRC Ancient Greek I & Latin IV + VideoText math
    DS12 - 7th core + Novare Earth Science + CLRC HS Latin I + VideoText math
    DD8 - SC level 2

    Comment


      #3
      My son also had a tongue tie. It wasn't discovered until he was almost 11 because of his other issues. It wasn't the reason behind his selective muteness or even the main reason behind his articulation issues, but having it released did have a positive impact on his articulation (just not a huge impact). Before the surgery, he had everything except L and voiced/unvoiced TH (L has been his bane forever). He is still working on those sounds, but they have improved...and he made a lot of improvement on the L despite the LONG time we'd been working on it with no success. We had to do stretches after the release while it was healing to help prevent it from reattaching while it was healing.

      I have found that who does the release makes a huge difference. The RN in me was a little freaked out by a Pediatric Dentist doing it in the office with a laser, but after I did my research I knew it was the way to go. His bio sister had a tongue tie that was released by a plastic surgeon (during cleft palate repair). Hers did grow back some but hasn't impacted her speech (she was only 9 1/2 months old). Ironically, even though she had a cleft, she graduated ST at 6 years old. He is nearing 12 had there is no end in sight. But, his issues are entirely different.

      Here are pictures of his tongue tie and one right after.

      This shows the "dent" in the end that indicates a tie.

      Click image for larger version

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      Here you can see the tie. It was at the very back, so difficult to see and get a picture of.

      Click image for larger version

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      Here you can see that it is gone and the "diamond" where it was attached. This was taken during one of the post-op stretches.

      Click image for larger version

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      Also, you can have lip and cheek ties. My oldest had a tight upper lip tie, but I didn't realized it. He could nurse, but he'd get a callous on the center of his upper lip that was indicative of a tie, but I didn't know it. When he was about 11 months old he bit on the edge of a Tupperware container, which sent the top of it up along the gum inside his lip...this tore the tie. There was lots of blood and I freaked out. At the ER they got a better look (after the bleeding had stopped) and explained that he had just released the tie. I really think we need to be more educated when it comes to ties!
      Attached Files
      Cheryl, mom to:

      ds 24, graduated
      ds 23, graduated
      dd 15, 9th Grade
      dd 12, 6th Grade
      ds 10, 4nd Grade

      Comment


        #4
        Originally posted by MBentley View Post
        I wasn't told until after this procedure on my 2 yr old, that my own brother had the same thing. My father too (he had died 20 yrs before). My uncle. One of my cousins. I get that 2 points do not a pattern make, but 6 do.
        Interesting. I do believe it is hereditary though. My first daughter was born and did have trouble nursing and I don't wonder if there wasn't some tongue tie issue, but her speech was above par at 18 months, so I don't know that it effected her. My next child was born and he was a "good" eater, but still a little trouble. I took him to his 1 week? checkup and the pediatrician said "oh he is tongue tied". I'll take care of that. Pretty much before I could even process, she had it "fixed". The next child was born and the nurse attending to me said "oh that baby is tongue tied"...she was clipped at 2 days old. I didn't even know anything about researching it or anything! My mother one day casually said "oh, I was tongue tied too". I had NO idea...I was 36 years old before I found that one out! LOL
        Christine

        (2019/2020)
        DD1 8/23/09 - SC5/6
        DS2 9/1/11 - SC3,4, 5/6 combo
        DD3 2/9/13 -SC2 to start, MP1 second semester

        Previous Years
        DD 1 (MPK, SC2 (with AAR), SC3, SC4’
        DS2 (SCB, SCC, MPK, SC2)
        DD3 (SCA, SCB, Jr. K workbooks, soaking up from the others, MPK)

        Comment


          #5
          Originally posted by howiecram View Post
          I had NO idea...I was 36 years old before I found that one out! LOL
          Exactly the same. All of a sudden, people decided to mention - as if they somehow forgot - and here I was dealing with a speech issue. Sheesh... Still, genetic tongue ties - all of my kids and their spouses will know to look for it because I don't need another point on that line to see a pattern. It's clearly there. The only odd thing - in my family, it's only affecting boys. I know girls can have it, and being such a genetic thing, I would have expected at least 1 girl to have had it, and there were many girls, and all of those girls have grown up and had many girls of their own. So far, not one is showing it.

          If anyone is ever told about a tongue tie with a newborn though - that water laser is amazing. And with one so small, the frenulum is teeny-tiny to begin with so there's not nearly as much to take away as there is with a 2 year old or 5 year old. It cauterizes itself instantly, and newborn growth factor being what it is, it heals within a few days. At that time, it's millimeters thick at most. Amazing how strong a few millimeters of tissue is though!

          Mary No consternation whatsoever. I just saw a post with mention of non-verbal, it triggered a rabbit trail in my head about a major challenge my son had, and I thought I'd start the conversation. Honestly, I knew, even at the time, at 2, my son was just different, and I had known it for about 8 months. First time kiddo or not - something was just not going to go the usual route. However, that tongue thing was a real physical issue and fixing that has given him the "ability" to speak. How he speaks, and how he processes language is very different, and requires intensive work to help him learn it.

          It's a weird thing though - just how many of us with special needs kiddos have this in common. What's even stranger - How in the world is it getting missed? Shouldn't that be right up there with the obnoxious hearing exam for newborns at the hospital? Or the dreaded heal prick and squeeze blood test? We aren't even that many people on this forum, and this many of us, as well as other members of our family, are seeing this? It must be wider spread than I thought.
          Melissa

          DS (MP3) - 9
          DS (MP2) - 7/8
          DS (K) - 6
          DD (Adorable distraction) 2 1/2

          Comment


            #6
            When I started researching tongue ties, one thing that surprised me is that it was often dismissed or seen as unimportant by Pediatricians and others in the medical field. My younger son's would have been missed as an infant/preschooler regardless because his Ped couldn't get a look into his mouth, but my oldest son's lip tie would have been caught if it had been looked for. Unfortunately, parents need to be more aware until looking for ties becomes more commonplace for Peds :-(
            Cheryl, mom to:

            ds 24, graduated
            ds 23, graduated
            dd 15, 9th Grade
            dd 12, 6th Grade
            ds 10, 4nd Grade

            Comment


              #7
              Originally posted by Cheryl in CA View Post
              When I started researching tongue ties, one thing that surprised me is that it was often dismissed or seen as unimportant by Pediatricians and others in the medical field. My younger son's would have been missed as an infant/preschooler regardless because his Ped couldn't get a look into his mouth, but my oldest son's lip tie would have been caught if it had been looked for. Unfortunately, parents need to be more aware until looking for ties becomes more commonplace for Peds :-(
              I am with you there. It is truly dismissed as having a significant role. What really bother's me is how a non-special needs kid with a tongue tie, who becomes an adult, isn't a more effective source to talk to pediatricians. If that person (and in my family, several of those) is unable to persuade by saying, "Listen people, that tiny little band of tissue is a seriously big deal when it comes to speech. Maybe it shouldn't be, but it just is."

              Melissa

              DS (MP3) - 9
              DS (MP2) - 7/8
              DS (K) - 6
              DD (Adorable distraction) 2 1/2

              Comment


                #8
                Originally posted by MBentley View Post

                I am with you there. It is truly dismissed as having a significant role. What really bother's me is how a non-special needs kid with a tongue tie, who becomes an adult, isn't a more effective source to talk to pediatricians. If that person (and in my family, several of those) is unable to persuade by saying, "Listen people, that tiny little band of tissue is a seriously big deal when it comes to speech. Maybe it shouldn't be, but it just is."
                Do you have family members who were benefited from tie releases and didn't say anything? The only adult members of my family who have ties still have them, and they don't affect their speech. They have severe tongue ties (can't touch their tongues to their lips). That some that severe don't affect speech while others do is really mind boggling to me, and is probably part of the reason many so readily dismiss them. I've read about adults having their ties reversed and reaping benefits that have nothing to do with speech. Maybe if more do so, they will become more vocal. But, I think there is a lot of misinformation to overcome. My family members who have the severe tongue ties were told that they would have to learn to speak all over again if they had their ties released :-O So, you can imagine that they aren't eager to give it a try.
                Cheryl, mom to:

                ds 24, graduated
                ds 23, graduated
                dd 15, 9th Grade
                dd 12, 6th Grade
                ds 10, 4nd Grade

                Comment


                  #9
                  Cheryl in CA

                  That wasn't the experience of my uncle. He had his reversed as an adult, and it only aided him. He recounted a story to me about how he was in a food line in a cafeteria restaurant and his wife finally snapped at him, "Mike, you're mumbling. She can't hear you. You have to speak up.". They did love each other dearly and were married for over 40 yrs. When he had this done, he found speaking to be very easy. He had no trouble projecting. He just had to keep it up every few years and revisit the dentist. He eventually had jobs where public speaking was required.

                  No one else had the surgery that I know of, other than my son, and in his case it helped immediately. My uncle, to the best of my knowledge, had no spectrum-y challenges. He never mentioned having to re-learn how to speak. I imagine he just had more ways to speak to make a sounds. My brother was taught to make an "L" sound by keeping his tongue flat and sort of swallowing his tongue. I try to do it, and I can get close to what he is doing, but you still hear a difference in his pronunciation of "L". It's pretty hard. My uncle had no problems with this, but I believe the first time he had this corrected was before I would have paid close enough attention to detect.
                  Melissa

                  DS (MP3) - 9
                  DS (MP2) - 7/8
                  DS (K) - 6
                  DD (Adorable distraction) 2 1/2

                  Comment


                    #10
                    Originally posted by MBentley View Post
                    Cheryl in CA

                    That wasn't the experience of my uncle. He had his reversed as an adult, and it only aided him. He recounted a story to me about how he was in a food line in a cafeteria restaurant and his wife finally snapped at him, "Mike, you're mumbling. She can't hear you. You have to speak up.". They did love each other dearly and were married for over 40 yrs. When he had this done, he found speaking to be very easy. He had no trouble projecting. He just had to keep it up every few years and revisit the dentist. He eventually had jobs where public speaking was required.

                    No one else had the surgery that I know of, other than my son, and in his case it helped immediately. My uncle, to the best of my knowledge, had no spectrum-y challenges. He never mentioned having to re-learn how to speak. I imagine he just had more ways to speak to make a sounds. My brother was taught to make an "L" sound by keeping his tongue flat and sort of swallowing his tongue. I try to do it, and I can get close to what he is doing, but you still hear a difference in his pronunciation of "L". It's pretty hard. My uncle had no problems with this, but I believe the first time he had this corrected was before I would have paid close enough attention to detect.
                    Oh dear, I think I have given the wrong impression. I'm sorry for the confusion! I was lamenting that my step-father wasn't eager to have his tongue tie released because had been given bad information (that he would have to learn to speak all over again). I'll edit my post above to make that clear. When I researched it because of my son, I encouraged my mother to talk with him about his and told her about possible benefits associated with tie release as an adult even if the speech is fine (like migraine headaches lessening or even disappearing....he does get migraines) and reassured her that he would not have to learn to speak again. The bizarre thing is that as bad as it is, it truly doesn't affect his speech. You would never know that he had a tie, let alone such a severe one. That really boggles my mind.

                    Edited to Add: I can't seem to edit my post above to clarify...the edit button is gone. I don't know if it's me or if maybe the option to edit now disappears after a time.
                    Cheryl, mom to:

                    ds 24, graduated
                    ds 23, graduated
                    dd 15, 9th Grade
                    dd 12, 6th Grade
                    ds 10, 4nd Grade

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