Something New

A pleasant surprise

“Something new.” This is one of the latest of Declan’s sometimes-stress inducing phrases. He has roughly 5-10 Declan-approved activities that we cycle through, but lately he has been asking for us to try “something new.” The challenge in the phrase is that he is unable or unwilling to elaborate — and his interests are so narrow that trying to figure out what will be “something new” he accepts is…a struggle.

Struggle is an apt word for Declan’s history and relationship with language. As annoying as “something new” can be, I try not to take it for granted he’s able to ask for anything at all. Because we have videos of it, I have a pretty good idea when Declan started walking. That’s not the case with when he actually began talking — in my memory, it wasn’t until he was maybe five or six when he began to clearly enunciate multiple words. I have flashbulb memories, like when I emailed his speech therapist near the end of kindergarten because he managed to wish Caryn a “happy birthday.” Or I can picture him saying “merry Christmas” around roughly the same time. But those gains were slow — painfully slow and the lack of progress was scary. Suffice it to say there was a not insignificant amount of time when we weren’t positive he would ever be able to talk. Or at least not communicate effectively.

Declan not only loves the Easter Bunny, he can now ask for him.

Thankfully that worry has long since passed. His speech remains a challenge, probably one he will deal with forever. I always explain whenever we are in the process of hiring a new helper for the boys that it takes awhile, but eventually they will learn to speak Declan. That is to say, they will start to hear the way he says various phrases for what they are, or what he is asking for. The fact that we can now, with probably 85-percent success understand what he is asking for is a significant thing.

We have long believed that he understands far more than he is able to express verbally, so he is always taking in language but we aren’t sure when it will come back out. He’s at the point where if we tell him, “Declan, say ‘the sky is blue’” he will repeat it back as best he can. Again, these are monumental strides for him, but there is a large difference between repeating phrases and offering up ones own thoughts and feelings in words. There are countless examples of him doing his best to engage in typical conversation, but running into his own limitations. At some point, he learned that something he can ask people by way of conversation is “how did you sleep?” But rather than ask once, he often asks over and over again. Or at some point the phrase “no feel good” began to fill in for anytime he was upset about something.

His brain and behavior is a puzzle. Which makes it all the more entertaining when he suddenly adds new phrases or words to his repertoire without prompting. This has happened a lot lately with music, where we will be listening to a song, and suddenly he starts singing along (again, his version of singing along) to something we had no idea he was tracking. Allow me to share his current favorite as he sings along to the chorus of the ‘80s classic “Take On Me” by Aha.

These things don’t happen a lot, but they happen enough to brighten the darker moments. The big hurdle we hope he someday overcomes is whether or not he can start to respond to the “who, what, where, why”s of the world. In particular, if his brain and speech can move towards a place where he can tell us “why” he did something, or feels something, or wants something (or DOESN’T want something) that would be a massive breakthrough. He actually answered a “what” question from me recently, and I was positively floored. We never know when the progress will come, and it rarely comes in a torrential downpour — it’s one little drip at a time. But when the drips are all we have, they feel can feel like a flood. Or, to switch up the metaphor, a massive ray of sunshine.

Which brings us to Wednesday morning. Declan oddly woke up really early (thankfully he didn’t argue with me about whether or not it was actually early) and though I coaxed him back to sleep for awhile, it started the day earlier than I hoped. So my mood was generally a bit sour. After a few hiccups, eventually he was sitting at the table quietly eating breakfast. He seemed to have nothing to say.

I turned my back to him for a minute to check my phone to see today’s weather. In that moment, he suddenly and for seemingly no reason bellowed out “OH YEAH” as if he was the Kool-Aid Man. To my knowledge, he’s never used this phrase before, and it startled and delighted me.

No, he didn’t break through a wall — although given his mood this morning, it was not out of the question. It seems the funniest things are the ones you don’t expect. He doesn’t talk like a typical kid, he talks like Declan. We will likely never understand what is happening in his brain, or his motivations, but that doesn’t mean he can’t make us smile and laugh with the things he does say.

Something new indeed.