No updates from me in six months. I just never felt motivated enough to come back and write, I suppose.
I really, really wish that this was going to be an upbeat and happy post. I haven’t really even looked at this site since I wrote my last post in February, so it was actually a little jarring to see how upbeat my last one was.
I guess the short story is that Alex isn’t progressing in the expressive (talking) arena, and we’re worried again, so now I need my outlet.
Backing up a little bit, things were really looking pretty good in the winter back when I last wrote. Alex was doing well receptively, he was keeping his ears on, he was doing well in school, he was approximating some words, and he was even getting weened off of physical therapy. He was, for the most part, where he should’ve been at that point given his hearing age.
Today, he’s straight-up behind, and it’s heartbreaking. Alex still has low oral tone. He has a protruding tongue and a reverse swallow which will likely need work to reverse. Most importantly, though, he’s missed some significant milestones with his speech. There are a few indicators, but the one that’s bothered me the most is that by about four months in, he should have been able to approximate “m” “b” and “p”s. Alex cannot, or (probably wishful thinking) WILL NOT do them. Everything is a variation of “aaaah” or “uuuuh” “eeee.” So he’s got vowels, but missing some key consonants. The common theme for these is that they require lip work. Alex barely closes his mouth at rest, and I think I have yet to see him do it when he’s vocalizing. For a while there, it was relatively easy to write this off as him just taking his time, it would come, etc, but if you look at any sort of CI timeline, almost all of them will indicate that your child should have words after a year in. Alex doesn’t, unless you cheat and count “yes” or “daddy,” which is really more like “duhdee,” and both of which need to be coaxed out of him in order for him to say them.
Where things make my anxiety level skyrocket and my spirits plummet is when we start asking why Alex could be at this point. Back to Google, back to uncertainty, back to depression.
There are a few things that could be going on. A possibility is that his tone is just low and he needs more oral motor work. Alex gets OT therapy at his school, but we’re thinking that we need someone who specializes in this. We also know that Alex CAN close his lips, but no matter how many times we’ve sat in front of him and made a “Baaaaahbaaaaahbaaaaahb” sound with exaggerated lip movements, he won’t mimic. In some ways, I look at that as a good thing, because maybe he’s just being stubborn, but my hopes that that’s the case fade every day.
More scary, and what’s really going to be causing more sleepless nights, is that there could be an underlying neurological cause. Shannon researched Apraxia many months ago and has had it on her radar for a while now. Apraxia is a neurological disorder that falls on a spectrum, but generally what it means is that the brain has trouble communicating with the mouth and tongue. Because it’s a spectrum, there are a wide variety of symptoms, many of which Alex would seem to fall into, but at the same time Apraxia is generally not recommended to be diagnosed in children under three years old and when a child has hearing loss as well, it gets trickier to diagnose. All of that said, I’m still very afraid that Alex could have Apraxia, because reading the stories of parents who talk about what their kids were like as two year olds or reading some of the symptoms from the different sites, it’s not much of a stretch to place Alex into those scenarios.
The good-ish news is that Apraxia can be treated through more speech therapy, depending on how severe the case is. Were Alex to be diagnosed with Apraxia, it’s not a foregone conclusion that he won’t be verbal, but it’s practically guaranteed that he’ll have yet another fucking mountain to climb.
It’s also possible that it’ll just click one day and that’ll be that. I give this a 2% chance of happening unless he figures out that he can make cool sounds by closing his lips that he just happened to never try in the past year and runs with it from that point. I’m still chasing that down, though. At some point when he’s sitting on my lap, I really want to get him to just make a stead “aaaah” sound, close his lips for him, and cheer him on that he just made a “b” sound to see if there’s any reaction.
Physically Alex is also still behind. I didn’t read all the way through my last post, but I was probably talking about how we were excited that physical therapy would be dropping off. Well, he gets it once every other week right now, and we’re going to be bumping that up to every week very soon. Alex has technically improved, but his gait is still immature and he still trips pretty easily, often over nothing. Something that could easily be attributing to that is the fluid that’s filled Alex’s ears and throwing his balance off. Oh yeah, there’s that. Alex will be going in for surgery in a few weeks, again, to get new ear tubes put in, again, and possibly have his adenoids removed. We visited Alex’s ENT a few months back and he saw that Alex’s ears were filled with fluid and that the ear tubes that he had put in previously had fallen out (as they were designed to). He’ll be putting larger ear tubes in which should hopefully resolve the fluid issue. As far as the adenoids go, Shannon started raising her eyebrow at Alex’s constant open mouth posture months back, and in her research she found that a frequent cause of this was enlarged adenoids, and that was what prompted the ENT visit. The ENT had us take Alex to an X-Ray shop to get them checked out, but apparently they looked fine. He did tell us that he will take a look at them when he’s performing the tube surgery, and if they look large, he’ll take them out at that point. I’m hoping they DO look bigger at that point, because at least it’s something that would help explain the open-mouth posture and we would be taking a definitive action that could help. My hopes aren’t too high there, though.
I went off on a tangent there, but more on the physical side, Alex still W sits frequently. He’ll often (but not always) adjust his legs in front of him when prompted, but what he isn’t doing is putting his feet under his butt by himself. I think that’s where he ultimately has to go. Just writing this bit is depressing. I was talking about this stuff like a year ago and we’re still fighting that.
Believe it or not, that’s really the short version. Shannon did tons of research and found one of the best oral-motor therapists in the US and we even got on the phone with this person to talk. She’s convinced that Alex has a reverse swallow (when he swallows, he sticks his tongue out of his mouth like a baby instead of pushing it on his palette). She straight-up said “You won’t be able to fix that until he’s older because of the communication skills needed.” Great.
So that’s the general update. Emotionally I’m shit again. I was doing alright up until a few weeks ago when it became clear that Alex SHOULD have made more progress at this point and because it didn’t, that SOMETHING is probably wrong.
Something that REALLY gets to me is how guilty I feel about Taylor, our daughter. She’s just a happy, smart girl, and she doesn’t have any of these issues. There are times when Shannon or I are trying to do therapy with Alex and she’s running around talking her butt off, and I have to tell her to “be quiet” so that we can try to get something out of Alex. Taylor has never actually complained that we’re not paying attention to her because we’re too busy with Alex, but as soon as I began wondering about that I still felt guilty. The other layer of sadness in that scenario is the complete night-and-day difference between the two kids. Just ONE of Taylor’s words coming out of Alex’s mouth would probably make us throw a party. And he’s had so much time to do it. And we’ve worked so hard with him.
All of that therapy is exhausting, especially without results. I don’t even mind doing it, and I’m pretty sure Shannon doesn’t either. We’ve basically integrated it. Who I feel badly for is Alex. It’s terrifying to wonder if he can sense the disappointment coming off of me when he doesn’t mimic something I’m saying or to try to imagine how frustrated HE is that he can’t communicate as well as everyone else around him. Shannon and I are pretty good about giving him huge rounds of applause when he nails something and I think we’re both good at encouraging language where possible rather than showing our disappointment as some sort of motivator, but hey. We all have our down days, and I’m sure he’s picked up on it before.
To that point, Shannon and I have agreed that we’re going to give him some basic sign. Not full-on ASL or anything at this point, but he needs to be able to communicate effectively and it’s been shown in studies that sign language doesn’t harm verbal language development, and in fact it often assists it later down the road. There’s a popular show called “Signing Time” that we’ll add into the rotation. The CI boards I’ve gone on about have had some good advice on this front as well – let them make the sign, but ask for them to approximate it too, etc. I can actually see where that could help things at this point. If it gets to the point where Alex uses Total Communication (sign and verbal), so be it. If nothing else, we know at this point that he has access to the world of sound and he’s doing well with that.
There’s a lot of fear here obviously, but at the same time there’s still hope that things could still click, or that we could find the right therapist who knows the right exercises and techniques to get more out of Alex, etc. There are lots of kids who don’t have hearing impairments or things like Apraxia and aren’t talking at one year old (hearing age). But we’re in that window now. We’re officially allowed to begin worrying, and it’s brutal to be here again. We’ll get Alex whatever he needs and won’t idle, but just feeling this way is completely sad in itself. I’m looking out my window now and it looks like it’s going to be a beautiful summer evening, but I know I won’t be able to completely enjoy it with all of this on my mind. Hopefully this is just another of those low points and we find That Thing That Works for Alex and get back to some more happy updates.
I’m glad you were able to write an update. For my curiosity, yes, but far more for you to able to get it all out. The months around 1.5-2.5 years old can be brutal to parent anyway; I can’t even begin to imagine the added toll put on you guys.
A healthy, active 4-year-old friend was over last week, and her mother verbally corrected her W sit. I had never heard of it before, and it’s interesting to hear it here as well. I’m not sure bc I’ve never known to look for it, but I think my 3-yr-old sits like that somewhat often.
Thanks for the note! Your note is right on. A lot of what we’re seeing could potentially just be Alex being a two year old boy. There are lots of normal hearing kids who don’t start talking until later on or CI kids who take twice as much time before they decide to start talking. Even if it turns out that Alex has something like Apraxia, there are therapies for it that work. A lot of promising videos on Youtube in that regard.
But it’s always nice when people chime in to let us know that we’re not alone with all of these symptoms. Thanks again for the comment.
Parenting can really suck! I applaud you and Shannon for working so tirelessly with him and doing all the research you both do in order to help Alex gets what he needs. It might add a lot of extra stress but it also means that Alex will always get what he needs to thrive! As I commented on Shannon’s post, you have to do what you have to do to get through this and if that means obsessing over it then so be it. The one saving grace is that you have each other. The support, respect, and love you have for each other is a sight to behold.
I can understand your guilt with Taylor. Obviously I can’t relate exactly, but parenting is full of guilt no matter what the situation. The squeaky wheel gets the grease and that often means the other child is put on the back burner for big chunks of time (I speak from experience). That doesn’t mean you are a bad parent. You are showing her what it is to work hard to help your loved ones. You are also giving her the confidence of independence. Nothing about your situation is fair, for any of you, but you are doing what you have to do. She’ll be a smart, well-adjusted adult because you and Shannon are two strong role-models and won’t let her fail, just like you won’t let Alex.