This past year has been challenging. I will never, ever sugarcoat that reality or pretend otherwise. I look back, and I wonder how I am still standing.
Having a front row seat this past year is something I would never trade. Not for anything. Seeing Kiran’s daily progress has been exciting. I have witnessed so many aha moments and so many tiny steps toward understanding.
He has grown in leaps and bounds with his vocabulary understanding. He was a rockstar this morning during his session with his teacher, identifying five common objects in pictures (We have been working on wheelchair, book, ball, glasses, and cup) with no prompts and on the first try…and his new picture (walker) only took one prompt before he got it! He is working on a lot more vocabulary with his SLP from Childserve, too, and is making progress identifying certain toys, animals, and articles of clothing.
And of course, the biggest, most obvious goal he achieved is independent motion in his pacer. I still can’t believe he’s walking, and I am so amazed with how well he is doing! He is starting to show signs of fatigue and frustration with it at times, but I know we will build up excitement and endurance with summer activities and practice.
Today, we had a virtual meeting with his school SLP, AAC person from the area education agency, and his Childserve SLP. We are officially moving forward attempting to get an eye gaze communication device for him to trial. This is where everything being virtual for over a year might just pay off! Everyone has noticed how much more attentive he is to the screen and how much better he is getting at shifting his attention with his gaze. This device will look similar to an ipad and has cameras that will calibrate to his eye placement and movements, and he will be able to choose a message or object by looking at it. We will start with cause and effect games – For example, by looking at this monkey, he will play the drums. His cause and effect understanding has gotten so much stronger, too, so I am optimistic about this new direction.
I am also overwhelmed. Communication has been one of the most emotional and frustrating journeys with Kiran. We are definitely seeing a lot of progress with his switches and more intentional communication – and certainly more of a desire at times to make choices and tell us what he wants – but it’s been a long time coming. And all of these different choices – the technology, the vocabulary, the system, the mounting – holy cow.
It makes me excited, though. I’m excited to learn about it as Kiran’s mom, to help him with his specific equipment and needs. I’m excited to learn about it as a grad student, as I am able to hone in on my interests as a future SLP myself. And it makes me excited to keep learning as a student clinician and as a therapist someday. I look forward to being able to help a parent down the line who feels as overwhelmed as I do about it right now. And I think I will be uniquely equipped to do so.
This whole life journey continues to take me by surprise, and I never once envisioned being anywhere near where I am right now, in any area. But despite everything that’s hard, I can honestly say this: Overall, I am happy. I am blessed beyond measure. And I wouldn’t change a thing, because I wouldn’t want to see the chain reaction that change might cause.
It’s a long road ahead, but we journey together. Here come some new adventures!