I think if you’re in the position of regularly seeing a pediatric neurologist, you’re probably used to the underlying stress we have running an undercurrent in our lives. I wasn’t consciously anxious about this appointment, but I felt sick to my stomach as we drove there this morning which is the tell-tale sign I’m experiencing significant anxiety.

The appointment actually went well. There wasn’t any scary new symptom to discuss or treatment to ponder. Mostly we spent the time talking about things we are seeing in Nathan’s development and the doctor confirmed that what we are seeing is really there and not a figment of our imagination. That’s good in a way. Bad in a way. Mildly encouraging that we’re on top of things.

Basically, Nathan’s speech is developing very slowly. And I mean veeerrrryy slooooooowwwlly. We’ve heard the all the cheery encouraging thoughts like: “It will come soon” “Before you know it he’ll be talking up a storm” “I bet he’ll start talking after he’s home a year. That’s what happened to my child.” We’ve also heard the very annoying “Just be grateful. My kid won’t STOP talking.” But something we’ve known for awhile and was confirmed today is that those cheery hopes are not Nathan’s story. Yes, eventually he will talk, and eventually we will join the ranks of parents who just want their kid to stop following them around telling them movie plotlines for the thousandth time, but it won’t be in a few months, it won’t be next year. It may not be the year after that. Maybe by elementary school? All we can do is guess.

Nathan most likely has apraxia. We expect to receive that diagnosis soon. He also seems to be ever-so-slowly following the “traditional” language development timeline. There has been no gain in his basic number of easily understood words in over a year – and that list tops out at 2. At the same time, he is gaining the ability to make sounds like “h” and “p” and he can attempt to say words, although only those who spend a lot of time with him would know what he meant. His babbling has picked up significantly in recent months and he babbles in sentences, obviously saying things that make sense to him. On rare occasions he will blurt out a word that anyone can understand, but he can’t repeat it on demand.

This has led to increased frustration in our household. As his world and body of knowledge expands at a pace his language cannot keep up with, he has more and more things he wants to share and no way to let us know most of what he wants to say. There’s a lot of yelling, and gesturing, and hollering. And crying. We all in turn get angry about it. Jason and I get sad. And we work hard all day every day to help him develop a voice.

The next few months will see me working to begin reading prep with him and I’m not quite sure how to teach a child to read when they can’t speak. It will be a challenge, but I think I’m up for it. I’m grateful that homeschooling is not daunting to me as I think it will provide him the best opportunity to achieve his highest potential in all areas without being held back by the one area that is a challenge for him.

In addition to his speech delay, it’s become obvious in recent months that there is a visual component to his motor delays. The neurologist confirmed that this is consistent with the location of the brain damage. We believe that his eyes are in some way involved due to the right-sided weakness. He will be seeing an opthalmologist soon and we think he may end up wearing glasses. He’ll fit right into our families! And the cuteness factor may get notched up a bit, if that’s possible. Hopefully we’ll find a way to help his eyes that will greatly increase the speed of his motor skill development. It’s hard to learn how to walk up stairs when you have hindered depth perception!

So, that’s our latest Nathan update. He continues to thrive in general and is developing well, sometimes in big ways and sometimes in small ways. And most of all, his smile still lights up the world.

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