So here we are, two weeks into Down Syndrome Awareness month and I haven’t posted a thing. Every good intention to have a conversation, share thoughts & educate just blown. I totally want to come up with wonderful, thoughtful, insightful posts filled with hope & positivity, but then my brain shuts down & I got nothing.
There’s so much I want to share – about Henry. About our experiences navigating his DS. About the positive and the negative. About our struggles and our triumphs. But it’s hard.
Let me start with this: I would never, not for one moment, change our lives with this amazing boy. From the moment he joined our family, everything changed. The things we thought were important became, well, insignificant. Things we hadn’t even considered became epic. The parenting experience we already had needed to be reevaluated. It makes me think of the quote from Game of Thrones that Ygritte would often say to Jon Snow north of the Wall: “You know nothing, Jon Snow.”
But we learned. Not everything – not by a long shot. But we learned as we went. It was like scientists in a lab; we had to re-calibrate all our instruments for the utterly new input we were receiving. Our measurements no longer applied. It was like in a movie when a new species or alien being is discovered and they call in all the scientists to determine what they’re dealing with and they try running all their tests and just look all puzzled saying, “We’ve never seen this before….we don’t know how to analyze this.”
I mean, all the basics were the same. Henry needed to eat and sleep and poop and be loved. But none of our previous experience or standards could really be used anymore. We had to invent a new “normal”. Back when Henry was very small, I did a layout kind of about this idea. I had learned the concept of “true north” & I found it kind of fascinating insofar as how it resonated with our situation. You see, you can’t find true north with a compass. That will guide you to magnetic north, which can shift with the activity of the Earth’s magnetic fields, but true north is a different idea. True north is a geographical direction represented on maps and globes by lines of longitude. So in order to find it, the tool you’ve always been given to determine direction is useless. You must use a tool that’s different from what you’re used to. It’s not impossible, just different.
This idea resonated LOUDLY with me. You see, I (and most other parents) begin our journey of parenthood equipped with a “compass”. (Not literally. This is a metaphor.) When something comes along in our parenting trek that deviates from the norm, if we attempt to use that “compass” to figure out where we’re supposed to go, we’ll end up miles from our ideal destination. We have to be flexible enough to realize that our current toolbox isn’t going to work and begin a search for the tools we actually need to take this journey. We need to “buy” new “instruments” to analyze, measure and develop valid theories.
For example, if I’m measuring Henry’s development, milestones and goals against a neurotypical child of his age, the resulting comparison is utterly unfair to Henry. He can’t do what those other children can do. It’s not better or worse, it’s just Henry. Also, if I flip it around and measure a neurotypical child’s ability to show joy or love or excitement, that NT child will not measure up. It works both ways. Henry has strengths that other children don’t and vice-versa. It just so happens that our world doesn’t place as much value on Henry’s strengths, you know?
I learned pretty quickly to throw out the tools I’d been using when it came to Henry. While I might wish he’d hurry up and walk or feed himself or whatever, I knew he’d get there when he was ready. I learned to measure his progress based solely on him. He learned to stand? Milestone!!!! He learned to walk? Let’s have a celebratory cake!! By doing this, we were able to get out of the quicksand of “my kid can’t” and get on the trampoline of “look what he did!!!”
That doesn’t mean I got/get it perfect. I still have trouble with this sometimes. Not so much in comparing him to NT kids, but I do find myself sometimes jealously comparing his progress to the progress of others like him. It’s really difficult when other kids with Down Syndrome who are his age are accomplishing so much more than he does. When they’re reading or toilet trained or in a mainstream classroom. I start to doubt myself and think about what did I do wrong that Henry can’t do these things yet. Thankfully, I have a husband who helps bring me back to only comparing Henry to Henry. But it’s always there.
Next week, Henry turns 11 years old. Henry is still in diapers. Henry only reads a few sight words. Henry has extreme difficulty with controlling his behavior sometimes. He throws things, will hit you or scratch you or inadvertently hurt you in his attempt to show love or establish friendship. I have to remind myself that Henry isn’t even a typical kid with DS. He’s HENRY. He is his own entity – his own species. I can’t measure him using current, modern equipment or methods (much like a scientist in a sci-fi movie). I work on patience with his autistic-type tendencies. I work on modification with his aggressive behaviors. I work on developing skills to help him live in the world as independently as possible. But mostly? I just give him all the love he can hold. Because that is what I’m best designed for.