When R was about 2.5 the first alarm bells started to ring. They were faint for quite some time. However, I couldn’t shake the idea that his language seemed…stuck. After daycare we would ask, “how was your day, R?”. And he would just stare at us. It was clear he heard us, it was fairly clear he understood us, but his answer wouldn’t come. He seemed, well….stuck. I would say, “Did you play with Aiden today?” And that would elicit a “yes” or a nod. Sometimes. Then, life would move on. R would eat dinner, clear his plate, sing songs, “read” books (memorized). In fact, I began to realize the only time we heard R speak in complete complex sentences was when he was singing (long and quite complicated) song lyrics, imitating a movie (which he could do brilliantly), or retelling us the story from a book we had read before.
2.5 years later, and I barely blink when I tell people who know R about his diagnosis. They know R, they see R, they value R, they love R for the bright beautiful child he is.
However, the words get caught in my throat when asked by specialists, therapists, doctors, perspective teachers, extracurricular teachers, etc. I pause. It’s during those moments when his diagnosis hits me. And sometimes hits me hard.
R has a diagnosis we are not AT ALL ashamed of. However, until he understands it, I won’t be sharing what that diagnosis is.
To many people, this is the first thing they know about my dynamic, kind, funny, joyful, thoughtful kid; his diagnosis.
This diagnosis, any diagnosis, is NOT a death sentence. This is NOTHING any of us need sympathy for.
Understanding, yes. We could use some of that.
They way we discipline or interact with our child might look a little different. We do take out the iPad if we’re all out to dinner. My GOD. People sit in judgement of what my family looks like and now we’re THOSE people? The people who let their kid watch a screen at a RESTAURANT?! Gosh. We’re the worst, aren’t we?
Yes. We are those people.
We are the same people who have rearranged our lives in service to our child and his needs. We are the same people who have a magical child who, quite often throughout the day, need to “get creative” (read: breath deep and practice patience) to get our child through the most menial tasks. We Are “those people” who need to divide and conquer with one set of eyes ALWAYS on R because one minute our 5 year old will be heating up his own mac and cheese telling us about the principles of Black Lives Matter, and the next, he may be getting curious about what does happen when you put your finger in an outlet (developmentally delayed in some ways and wise beyond his years in others).
We are those people who can’t always control our child’s volume or big body movements and I will not discipline my child’s behavior (IT WON’T WORK) when the behavior is simply a symptom of his diagnosis just to please you, or just to look like the parent I’m supposed to be. I’ve had that advantage for 5 years; I’m used to not looking like the parent most people expect when they see my kid, and now I most certainly do not act like the parent people expect. Oh the judgement in people’s eyes when all my child is doing is jumping and LAUGHING (yes, most of the time he is the loudest and the wildest) on the playground.
Things only get more sticky, don’t they?
Rory is also a Black child. A Black BOY with these diagnosis’. So, not only is it often assumed he is far older than he is, people make constant assumptions about his behavior. He is big and Black and loud and to many people that translates to aggressive and violent; two things my child is not. My big Black loud boy plays “butterfly” on the regular. This involves him coming out of cocoon (blanket) as a scared baby butterfly who needs a bottle. My big Black boy needs me to turn the hall light on first before he’ll venture down. My big Black boy reaches easily for my hand when we approach any intersection. My big Black boy needs to know “the plan” for the day each morning so we can talk through anything (of which there are many) that may cause anxiety or cause him to “freeze up”.
A word on Rory. He is the bravest person I know. Each day he challenges himself to step up and learn and take risks and be flexible and change and be open; all things we’re continually told are not easy with his diagnosis. He does these things day in and day out and it is not easy. He does them with grace and perseverance. I strive to be as brave as he is.
My son’s Black boy joy may be A LOT for some people to handle. That’s fine when I’m around and monitoring and protecting and redirecting and helping. But we all know that won’t always be the case. We all know his loud big body and Black boy joy could one day cause him great harm and pain in this world in which we live. This is what keeps me up at night. Not a diagnosis that simply means his brain is developing differently.
I’m not quite sure why now, today, I’m compelled to write. But I am and so I do. Let’s love all the children we see today; no matter what. Let’s also love their moms and dads and caregivers with no judgement. We are all doing the best we can in this mixed up world.