Well here it is. I've decided to write a blog about our battle with apraxia. The battle is far from won at this point -- but I think I could get some value from expressing some of what we've been going through. I've struggled a lot with it, some times more than others -- and as of late that struggle seems to have intensified somewhat.
So, at Travis's two-year old doc appointment, I mentioned to the doctor about possible speech issues. At that point, I really wasn't worried. I thought he was perhaps a little behind but not much else. He wasn't really speech delayed - his speech was just unintelligible. I did a little research in the months that followed and any speech concerns focused primarily on speech delays. Everything said, "see your doctor if your child doesn't have x number of words by 2 yrs old". Well, he had a bazillion words -- its just that most people couldn't understand them. I could, of course, but most people couldn't. And I couldn't imagine that they expected all those words to be perfectly pronounced at age 2. Take Noah, for instance, he's a few months past two years old, has an insane vocabulary, but certainly doesn't pronounce everything correctly. With the benefit of comparison, I can clearly tell that Travis was light years behind Noah when he was that age...but as a first time mom, I didn't know for sure that the pronunciation issues were all that deep-seated, and thought perhaps they'd just clear up over time. All the parenting books and magazines said its not that unusual for a child to fall behind in certain developmental areas when they're overloading on learning another one....so, I thought, hey... Travis is such a smart kid, maybe his brain is focusing on critical thinking skills, unraveling the human genome, solving the Rubix cube, whatever... so he's not quite so focused on the speech. At any rate, I brought it up in passing at his 2-yr appointment, doc said lets just keep an eye on it and I bet you'll see it improve over the next 3-4 months.
Well, it didn't, at least not terribly noticeably, although it did a little bit. And I never really knew when to draw the line. I kept holding out hope that it would get better on its own. In retrospect, I wish I would have pushed it sooner, but I'm just not the type of person to jump immediately to outside intervention. I tried to work with him at home and just kept blindly thinking it would get better. I've done a lot of beating myself up over not getting him enrolled in speech therapy earlier, thinking he could be x percent improved over where he right now if I'd just gotten him started earlier.
So, at about 2 yrs and 9 months or so, I called the doctor and got a referral to the First Steps program which has a speech therapy component. Called them and they said it would take a few weeks to get an evaluation appointment, and then they'd only be able to treat him until he turned three at which point they have to turn him over to the school system who would have to re-evaluate so it probably wasn't worth it to go through it, we should just wait the few months until he turned three and start with the school program. So we did.
Shortly after his third birthday, we had the school evaluation, informal diagnosis of apraxia and began the one-on-one speech therapy. It was then that we learned that the problem was likely an issue of Travis's brain not sending the right messages to his muscles to allow them to form the words correctly. It was clearly not a cognition problem because the kid was sharp as a tack. He spoke primarily in vowel sounds, very few consonant sounds which he used occasionally correctly but more often incorrectly. Never used consonants in the middle of a word. The average person could probably understand about 5% of his speech. This was when it got the worst for me as I realized this wasn't something that would just improve on its own with a little time, and that we were going to have quite a road ahead of us. This is also when I started battling with the guilt of perhaps making a harder way for my son by not having been more aggressive and getting treatment started sooner.
Now, here we are, over a year and a half later, and certainly things have improved. I would say he is 85-90% intelligible to most people. If they're paying attention. I cried at back-t0-school night at his new Pre-K because his teacher told me she has a hard time understanding him. If you're talking to him one-on-one, for the most part he's understandable. If he's in a classroom with 19 other kids and he's one of many vying for attention, its probably much more difficult. So now I worry incessantly about whether he's adapting well socially in the class, if other kids avoid him because they can't understand him very well... if the teachers don't even understand him, does that mean he's all alone in the classroom? I can't be there by his side to help people understand what he's saying, how do I protect him, how do I get other people to realize what a fabulous little kid he is?
So we are doing private speech therapy on the side to address remaining issues. Ironically, since his speech two years ago was mostly just vowels, its his vowels now that need the most work. The hospital therapist said that, because jaw placement varies extremely slightly among the vowel sounds, that its likely jaw weakness that leads to his incorrect vowel pronunciation. He has a very difficult time saying "uh" and "oy" sounds, "a" sounds like "i", and short vowel sounds (short e in particular) are tougher. So we are currently working on jaw strengthening to hopefully remedy this situation.
Then there's the other issues. Fine motor skills, due to muscle weakness in his hands -- he has a difficult time coloring, holding writing utensils, changing his clothes, etc. He can do it, but its just not that easy for him. Then there's the feeding issue. As it turns out, the overactive gag reflex is a huge problem. His problem is not with the flavor of foods. I don't think its even just a texture issue. Yesterday, we did an exercise with a carrot stick where I had him hold the carrot stick in his teeth but not bite it, then put it against his tongue but again not bite it. Then I had him take a tiny shaving off the carrot stick, which he swallowed just fine (and said, yummmm, that's good....), but when I had him take an actual bite of it, it was too much for his poor tongue and he gagged and just couldn't keep it in his mouth. I then had him take just a tiny bit of carrot, place it on his tongue and hold it there for a few seconds, and then take it off. I was stunned by how hard this was for him. I told him we just have to work on training his tongue not to freak out, and we'd have to practice with carrot sticks for a while. I don't know how much energy I'll have for this....it brought me to tears yesterday seeing him struggle so much with something that most people would think nothing about.
And that's the end of my story. Hopefully in a year or so I'll be able to report that speech and feeding issues are 100% resolved. Until then, I'm just hoping not to be a total basket-case, for my children's sake. And my husband's (that's another post altogether.... its not that he doesn't take this seriously but he also doesn't stress about it, it just is what it is for him).
