This morning I got the best news, it looks like we are finally at the end of what has felt like an incredibly long process. Kellen had always reached all his milestones within the ‘normal’ timeframe and once he started talking he would chatter away like any toddler. While his vocabulary would grow and he would put together multiple words, and eventually sentences, it seemed he was hard to understand. Not long before he turned 3 I remember asking a friend when her son started to speak more clearly so that others could understand him and she thought it was around preschool time when mom wasn’t there anymore to translate. So we plugged along and Kellen started nursery school in England. At this point Jamie, Patrick, and I were really the only ones who could understand him. It would break my heart to see him trying to talk to someone else and unless they spent a lot of time with Kellen and were used to the way he would talk they really couldn’t understand what he was saying. It seemed like everything was mumbled and some of the sound substitutions he made were unusual. He would get a lot of blank stares and smiles while people waited for me to repeat what he had said more clearly. But I told myself that he was little and eventually it would click.
A couple of months after starting nursery the teachers said that they felt his language was impacting his ability to interact with the other kids and it was difficult for the teachers to understand him. It was also getting progressively more frustrating for Kellen to constantly be misunderstood. At times when we would be at home or in the car and he would use a new word I often couldn’t quite get what he was saying and he would continue to repeat it, to the point of yelling, not understanding why I couldn’t understand him. This started a series of tests and appointments to try and figure out what was wrong and how we help him move forward. We went through long waitlists to get his hearing tested and get assessments done on what the issue might be. As we went along I learned a lot about all the different things that can impact speech. I was also given information explaining how delay in language can be an early indicator of delays in literacy, etc. So as we went along I worried about every potential issue we could be dealing with and what this could mean for the long term.
The NHS is amazing for many reasons, braces being 100% covered for one, but it does have its downsides. We finally did see a speech therapist and were given a few things to work on at home and told that they would check in 6 months later to see how he was progressing. To be fair there are children and adults in much more serious situations then Kellen’s but it was extremely frustrating to be essentially pushed through from appointment to appointment with no real clarity on what we were working on or how to do it. Then we left England and never ended up having the follow up appointment. Once Kellen started preschool here in Australia it felt like starting all over again. He had progressed some as any child will between 3 to 4 but was still far off from speaking clearly. I asked the preschool director for her opinion as she has so much more experience with kids at that age and no surprise they were actually going to suggest we have Kellen assessed… The saddest example was the day he brought in things from the Australian Museum. The museum had a special dinosaur exhibit running and we went to go see it. The school encourages the kids to bring in pamphlets or ticket stubs when they do interesting things so they can share with the rest of the class. Kellen brought in his dinosaur ticket and stood in front of his class excited to tell everyone about his day at the museum. The teacher said he was up there confident and excited but the other kids really couldn’t understand him. We were referred to a speech pathologist for an assessment of Kellen and I expected the same result but hopefully we could actually start some speech therapy as we are on private healthcare now.
The woman who assessed Kellen was great and actually came to his preschool and did the assessment there so he hardly even knew what was happening and didn’t have to go to another doctor’s appointment where the adults talk about how poor his speech is. When I got the assessment report I was amazed, she actually pinpointed what she felt was the source of Kellen’s speech challenges, tongue tie! What?! I had never even been asked about tongue tie and had never discussed it with anyone up until then and he was 4 years old. The first thing I did was make an appointment with the ENT she recommended and then searched online. I don’t suggest doing that unless you want to see terrible pictures of recently separated tongues. What I did learn was that while tongue tie is fairly common it is normally caught as an infant and can be corrected right there in the paediatricians office without even an anaesthetic. When caught as an older child it is an operation that requires going under a general anaesthetic. We were torn between relief that it was finally something tangible we could work on and a little concerned about the thought of our 4 year old going under a general. We have been very fortunate health wise, while I know many families have had to deal with far more serious operations none of us have ever had to go under and general and it was scary.
We met with the ENT and he agreed that Kellen was tongue tied but it didn’t appear to be very severe so suggested we try speech therapy for 4 months, at the end of the 4 months based on his progress we would either move forward with the procedure or continue to address it through therapy. While it was tempting to want him to say “Oh I can fix this tomorrow” I did feel good that we weren’t just jumping into anything and were doing the work on our end first before putting Kellen through a procedure. So we started going to speech therapy every Friday morning. I was so proud of Kellen during is sessions and then with his homework, he really did work hard even when it wasn’t easy. We were encouraged as we went along because we did see progress. As the end of the 4 months drew closer it was clear that while he did make progress he was really having a hard time making the sounds appropriately, and when he did it would be very slow. So instead of Long Kellen would say Lll-ong, since he would have to work hard to get the L sounds right and then hold it before moving on to the rest of the word.
We met with the ENT again and he agreed we should move forward with the procedure and was able to get us in just a couple of weeks later. Kellen’s appointment was for a Monday and since it was a fairly minor surgery they were able to do it from their day surgery and luckily we didn’t have to go into a hospital as I imagine that would have been overwhelming for him. We talked about what was going to happen the Sunday before, we didn’t want to build it up so much that it became a big scary thing and instead the day before we just talked about seeing Dr Taplin again and what was going to happen. I think I was the most nervous the night before first because he was going to have to go under a general anaesthetic and second because I really didn’t know what to expect as far as recovery. The next day we were at the doctors early and they were so good with Kellen, trying to make him and I feel comfortable. Once we were called back it was all very fast. I was able to stay with him while he went under the anaesthetic then I was taken out of the room. It was only about 30 – 40 minutes later when I was called back because he was in the recovery area. As he woke up he was understandably groggy but we were lucky that he didn’t get sick. After waiting to make sure he was eating and drinking we were sent home. The first time Kellen stuck his tongue out I was amazed as he was easily able to stick it out further than I have ever seen. He was lethargic for most of the day but by that night he was running around the house. By Wednesday he was back at school.
I assumed the change in his speech would take time but only a few days later we were in the car and he said something with an L in it and the sounds was not only clear but his speech was fluid. I was so relieved. Our biggest concern was putting him through the procedure only to have it not make a difference. Over the next 2 weeks the change in his speech was remarkable. He is speaking more clearly and much more quickly, it has been noticeable at school and at home. We had our post-op appointment with the ENT and he said that Kellen has healed perfectly, no need to continue to see him. The day of the surgery we only spoke with the nurse after as the doctor was held up in the surgery after Kellen’s. So it was only during out post-op that he had a chance to tell me that once he was in Kellen’s mouth he was surprised by the severity of Kellen’s tongue tie, he said he would categorize it as severe. He had to separate 2 ½ cm of tissue and it is no wonder her movement was so restricted.
Now to the best news. This morning we had our first appointment back at speech and I was looking forward to her seeing how far Kellen has come in just 3 weeks. She ran him through all of the sounds we have been working on and she said that it is amazing but he is fine, totally age appropriate now. The work he did the previous 4 months taught him how to make the sounds, it was just physically hard for him to do it, now that he had the ability he was naturally speaking in the right way. Kellen just turned 5 and this is the age where the R sounds becomes clear. She said that when there is an earlier speech issue it can then cause a slight delay in the progress of the future sounds. She even ran him through his R sounds and while he isn’t doing the perfectly in his normal speech, he can make the sounds and is right on track with any other 5 year old. We are going to meet again in a month just to touch base but as of now there doesn’t appear to be a need to continue with speech sessions.
The relief I feel at hearing that news is unbelievable. At different points over the last 2 years we have been worried about long term learning disabilities, hearing, his ability to process, etc. There has been concern that the difficulty in speech could impact social interactions especially as primary school starts in January. I was really focused on doing everything we could before he starts primary school. Right now the kids are so little and half of them talk in their own funny ways that it hasn’t been something to be embarrassed about or something other kids would tease about. I know once primary school starts even small differences can become the target of teasing and the last thing I wanted for him was to be teased for talking like a baby. I also think about how frustrating it is that it has taken so long to find out the issue was so easily addressed. Why wasn’t this caught as a baby or in any other assessment? I vaguely remember talk of tongue tie when he was first born and we were still trying to master breastfeeding but I was in such a confused state of post C-section pain pills and all the hormones that come along with just having a baby that I really can’t remember what was identified or why nothing was done. I also have to sit back and recognize how lucky we are that the issue was something that could be addressed. Last week I met a mom whose son is 7 and completely non-verbal due to autism. That was a much needed dose of perspective.
So today has been a graduation of sorts for Kellen. No more assessments and regular speech appointments. No more doctors’ appointments where he has to for the 20th time open his mouth, stick his tongue out, let them take pictures. No more having to correct him and work with him as he is just trying to have a conversation. No more having others not fully understand what he is talking about. Now if I could just do something about the percentage of time what he is talking about is Scooby Doo…