always fluid, always changing

I watch as little five year old fingers guide their way over the plastic keyguard to say “outside” and “big”. The “outside” was intentional, I can’t say so much for the “big”. Each time his left thumb pushes the 0.5 in x 0.5 in button, he is required to hold for 0.1 seconds so that his other fingers aren’t accidentally pushing other buttons along the way. “come, she, milk, outside, all done, please, please, please, please, on”. It’s far too easy to lightly tap 6 buttons when attempting to push one when your fine motor skills are unrefined. It’s also an added challenge that he is using his thumb rather than his index finger, which is also a result of fine motor delay. Knowing he has spoken eloquently, he glances up at me with a grin, indicating that he’s just requested something, assuming I should fully understand. I do my best to fumble through his words, searching for inflection in his facial features and body language. As he lays his device down, he quickly moves his hands together, somewhat resembling a clap, but just barely touching. He wants “more”, quickly! I’m fairly confident that he is not truly asking for “more”, but when I can’t seem to follow what he has said on his device, he tends to resort to “more”, because it usually gets him something.

Our communication is not always this abstract, at least from my perspective. Most days, he’ll help himself to the milk in the fridge, grab a banana, grunt and point towards the plates for breakfast. He’ll walk up behind me standing in the kitchen, as I stir his oatmeal  over the stove, he’ll place his face on my right hip while looking up at me grinning. He’s saying “I love you”; this is Noah’s form of a hug – face on object of affection, what we have come to call a “face hug”.  We are speaking the same language, even though one of us doesn’t use spoken words. Using assistive technology hasn’t always been the way I have communicated with my son. Years ago, before his diagnosis, we used a handful of signs that he created, but we understood. When we were first approached about Alternative Augmentative Communication Devices (AAC), we feared the challenge it presented and still jumped at the opportunity to give our son access to a voice. As we make our way through the troubleshooting phase, which I’m convinced never actually ends despite the speech therapist’s reassuring comments – we have crossed milestones off of our list while we continue to add to the list. Communication is always fluid, always changing, and I believe it’s instinctual to always want to learn. I do not foresee a time when this milestone will ever be fully fulfilled.

A year and a half ago, we welcomed a fierce and loving daughter into our home. As I’ve watched her achieve language and meet milestones in what sometimes appears an effortless manner, I’m thankful that Noah was my first child. He was and is my normal. His challenges were just a part of being a first time parent, and I took them on as though they were just par for the course. I’m not suggesting that if he were my second I would have lacked the motivation to step up to the challenge, just that I gained a valuable perspective in the way our lives unfolded. After my daughter was born, I was more aware of how much work it required/requires of Noah every single day to have his needs met. So, while it’s a beautiful vision to watch my daughter seamlessly point and request for the puzzle that she wants me to play with her, I know one of the biggest milestones we have watched her gain is in how she communicates with her older brother, Noah – with or without the AAC.

A month ago, I was exploring a new page on his device, and pressed on the buttons “hug” and “maeby” (his sister’s name). Noah rose from a seated position on the floor. He walked over to her and placed his face along the top of her head. She closed her eyes gently and leaned in to lay her face along his. She has learned how to engage in Noah’s form of communicating, through his “face hugs”.  She will acquire this in a way completely different than any of us, meeting milestones and presenting new milestones for Noah that we aren’t even capable of imagining.

4 thoughts on “always fluid, always changing

  1. ♥♥♥I love this and can just picture the precious image of Noey giving Maebs a hug and her face hugging back. She can be quite the feisty girl but she loves big because she has learned from her big brother. I love them so much♥ C


    1. Thank you, Michelle! It’s easy to uselessly use words. To hurt, to heal, to share – having little Noah has truly taught me what words really matter. And you’re right, sometimes, words are not needed. So many blessings to you. Love!


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