Wednesday, 05 May 2010

• Tongue Tied

   

   
   One day in May of 2004, while he was still in his first year of preschool, I was driving home from the grocery store with Charlie and Rachel. Charlie was screaming in the car because we had not stopped at K-Mart and bought a toy for him. His screaming had set Rachel off and she was crying too. The road from Wellsville, NY to our home is one that you can't really pull off of. There is no shoulder, so I was just trying to drive as best I could for home and ignore the outburst. I knew that nothing was wrong with him other than the fact that he was ticked off that we didn't get him a toy.
  
  Our home is so remote that any trip to the store takes at least 45 minutes each way. Charlie had been screaming for what seemed like hours. We were still about 25 minutes from home. Not even half way home yet. I felt like my head was going to explode from the sheer volume of the shrieking and I prayed out loud, “Please God tell me what to do to help Charlie, because if he doesn’t stop I’m gonna to kill him.” I was only half joking.  
  
  Later that evening before bedtime, I was giving Jon and Charlie a bath and Jon was sticking out his tongue at me. This kid’s tongue is so long and pointed that I was laughing about it. Charlie was looking, but would not stick out his tongue. That night, after his bath, we were playing on my bed, which has an oval shaped mirror in the headboard. When we bought it we were really concerned about that headboard. Charlie and glass do not mix well, but here he was, naked, with his face right up to the mirror with Jonathan and they were both looking at Jon as he watched himself stick out his tongue at the mirror. I happened to catch a glimpse of Charlie trying to lift his tongue and somehow saw from the side that he was tongue-tied. Now, I knew about tongue tie, because I had been a dentist assistant and I had seen this before on other kids.
  
  I got up on the bed and got Charlie flipped over, so that he was laying on his back and tickled him until he started laughing out loud. When I gave a good look in Charlie's mouth, I could see that his tongue was attached from the bottom on his mouth right to the tip of his tongue and it was held fast to the bottom of his mouth.
  
  When he tried to stick out his tongue it was not pointed like Jon's was, it formed a heart shape where the tip was held back by the muscular attachment called the frenulum. I got the kids dressed and then booted up my computer and did some quick looking for tongue tie. I found some photos and just sat there looking at the computer dumbfounded. I called Chuck in and told him what I had seen. I made him lift his tongue so that I could see his frenulum. I made everyone in the house stick out their tongues so that I could compare and sure enough, our child was tongue-tied. Several doctors, two dentists, many speech professionals (including our two speech pathologists) had looked in that mouth of his and no one had seen his tongue-tie – and I had never seen it either – not until it was made clear to me – an answer to prayer.
  
  There are a lot of reasons that kids don't talk. One of those reasons is called Oral Apraxia. Oral Apraxia is defined as: a disorder where the child, who typically is a "late talker" is unable to coordinate and/or initiate movement of their jaw, lips and tongue (articulators) on command. An Oral Motor Disorder, which could be a different oral motor problem than apraxia (could be from weakness for example) is the second type, in which the child is unable to coordinate and/or initiate movement of normal eating movements (vegetative activities.)
  
  Suddenly it all made sense to us. Charlie, throughout his life had eating difficulties that were in large part due to this tongue constriction. He could not take bites of pizza, but scraped the toppings off with his top teeth and left the bread. When he had a cold he could not even lick his lips. He would get big chap marks because he would use his lower lip to wet his upper lip and then his upper lip to wet his lower lip. He had huge red marks above and below each lip whenever he had a cold, all because he could not stick out his tongue. We always wondered why he had those marks. We had never seen them on any other kid. He could not lick an ice cream cone. He could not make funny faces. He simply could not move his tongue at all. He would gag and choke often because he could not chew and swallow properly. He had horrible gas, probably from badly chewed food and excessive swallowed air. Click! Another piece of the puzzle snapped into place.
  
  We went to our Pediatrician with a day or two. She said, “How did we miss that?” She agreed that he needed the tongue-tie severed and she made the referral to an Ear, Nose and Throat doctor in Erie, PA, Dr. Kirk Steehler. He said that most tongue ties are caught when the child is in infant and he had not seen one that severe on a child as old as Charlie. We made an appointment for the surgery and brought him back to Erie two weeks later. It was be an outpatient procedure. The day before the surgery we arrived in Erie and stayed overnight. Chuck's parents met us in Erie, which is the half-way point from their house to ours. We had dinner the night before, which was awful for me. Charlie acted up at the restaurant and I took him and Rachel back to the motel to wait for the rest of the clan to get back.
  
  We got Charlie to the surgery center very early in the morning. It took a long time for them to call him, then they took him back and wanted him to dress in a gown. He resisted. It was a long, hard morning. Finally the nurse sedated him with an oral sedative. I suggested to them that they use an oral syringe rather than a cup to dose him. He became sleepy and giggled to me. The nurse and one assistant took him down the hall on a gurney and I went to wait with Rachel, Jon and Chuck in the hospital waiting room.
  
  It seemed to take forever, finally they called me back to the recovery area. Chuck stayed with Jon and Rachel. Charlie was fighting coming out of the anesthesia. He was scared of an IV tube in his arm, which was wrapped in gauze and he was trying to pull at it. They were forced to put more medicine into his IV line to calm him. He went back to sleep. As he came out of it again, I rocked him and carried him, he fought coming out again and they gave him another shot. Each shot put him out for about 45 minutes.
  
  Rachel, who was still very little needed to be nursed, so Chuck and I switched places (much to my relief) and he held and walked Charlie in the recovery room, trying to wake him up slowly and calmly. It took over three more hours for him to be able to leave the hospital. We went back to the motel, gathered our things, said our goodbyes to Chuck's parents and drove straight home. Although it took three hours to get home, Charlie was fine in the car the whole time, which was strange to us. The other kids were a different story. They cried and fussed. We had to stop a couple of times on the side of the road to calm them. I got into the back seat, which is very hard for me, I get so car sick, and actually had to nurse Rachel while we were driving and while she was strapped into her car seat. No, don't try to picture it. It was not a pretty picture. I cringed when ever we passed another car. I was never so glad to get to our house.
  
  On his first day home from the hospital Charlie grabbed a slice of pizza and bit into it. I couldn’t believe it! I called to Chuck to look. We were both drop-jawed, watching our son eat and chew food properly for the first time. Prior to this he would eat pizza by scraping the toppings off the pizza with his top teeth. We thought he hated crust. Nope. He just couldn't bite and chew. But now he could. Wow. What a change. The doctors had told us that he might have to be retrained to chew and eat, but apparently he had figured it out on his own. He did bite his own tongue a lot that first year after the surgery.
  
  You know, Charlie is the one kid who can stick out his tongue at me and it just thrills me.
  
  Charlie was soon making consonant sounds, mmmmm, nnnnnn and later words, but the speech was only needs-based, “movie” or “open”, to get us to do what he wanted. Words that John, the speech pathologist had tried to teach him were now in his vocabulary. It was not normal communication and even a year later; it was still pretty much the same needs-based language. This indicated to us that it was his brain wiring that was damaged. Not his speech organs or his hearing. He had heard and learned the words, but he didn't understand language at all.
  
  However, the impact of the tongue-tie, especially as severe as it was, cannot be over-estimated. When a child cannot make a sound, cannot move their tongue, they will eventually stop trying to do so. I feel that Charlie’s tongue-tie constituted oral apraxia and that, in combination with the autism, may have made his autism appear to be of a different or worse nature than it really was. We may never know if Charlie actually has Aspergers Syndrome, because the defining element of Aspergers is speech before age two. Who knows if Charlie would have had speech if he had not been tongue-tied. We will just have to wait and see how far he is able to go with his speech.
  
  Day by day he is coming along. He is opening up and noticing things that were just not there for him before. He began to answer simple questions in the summer of 2006. Most of those responses to questions such as “How are you?” are still rote responses, but sometimes he does come up with spontaneous communication. An example of this would be when he would me by the hand at night and say, “Go nite nite now?”. This is a huge jump for him to have an internal feeling and be able to generate a verbal request. It fills my heart with hope that as time goes on the learning curve will continue and he will become less and less different from other kids. But as of age five he was still only able to tell his name about 10 percent of the time.
  
  Charlie uses phrases from movies to express himself. This is called echolalia, for example, “Good Soup, Mum”, which is a line from Shrek II, indicated that he liked his food. “I am going to squash you like a bug”, from Spiderman indicates that he is just plain ticked off. Not only does he use the exact same words, but the same inflection and the actual voice is copied. It is uncanny. He could do voice-overs.
  
  At 5 years of age he could not express much more than basic needs. He could string 5 words together and sing beautifully, but much of Charlie still remained locked inside of his own head and we could not communicate with him much. He never came running to me with a toy saying, “Hey Mommy look at this cool toy!” I hoped that his speech would be that of a regular kid after the tongue tie surgery, but instead, the character of his speech convinced me that he truly is autistic in a way that his silence never could.
  

   

   

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