Thoughts on a Label

Thoughts on a Label

It’s 5:30 am and I hear a beep from the front door that lets me know someone has unlocked the alarm code. A moment later, my bedroom door opens and Raimee comes in (he lives in the house next door) and sits down on the bed. “Mom?” He is visibly upset and wringing his hands and obviously struggling to find his words. My mom panic mode immediately kicks in and I am instantly “awake.”
“What’s the matter, Raimee? Are you okay? Did something happen? What’s going on?”
“Mom,” he starts again, but I can tell he’s searching through his brain for how to say what he so desperately needs to say. And every bad thing goes through my mind in an instant… someone broke into his house, there’s a fire, a water pipe burst, or… dear god, no… is it hunters? (This is rural Orange County after all, and it wouldn’t be the first time…) My heart is racing.
Finally, Raimee stands up, takes a deep breath, and says, his entire body shaking, “Oh Mom, I accidentally called Sayde a scoundrel yesterday.”
I exhale. And as I feel the breath come back into my body, I pull Raimee in for a hug and smile, just a little bit.
Sayde is Raimee’s new co-worker, whom he adores, and while I’m relieved that this report did not involve injury or serious physical harm, I am crushed that Raimee has been carrying this weight for almost 24 hours, and probably lost precious sleep over it, and is feeling his guilt over a small act of minor unkindness so thoroughly. Oh, this dear, sweet human and his tender, gentle heart.
“Well, I guess that wasn’t a very nice thing to say to a friend. We all have those moments, Rai. Maybe today you could tell her that you’re sorry for saying that and next time find ways to talk about your frustrations without calling her a name.” Raimee sighs. I think he feels relieved to have unburdened himself and he hugs me back. “Okay.” And he’s out the door in a flash.
Later that morning I call Sayde to see if we need to have a conversation around the incident and she says to me “Well… I’ll be honest. I don't remember him calling me a scoundrel. Maybe he said it quietly, and I didn’t hear. But, I felt that we had a good, productive day. Maybe he was having a hard moment and he walked away to get a few things off his chest… but, all is good.”
I have to think about that for a bit. I am so glad that no one’s feelings were hurt (it may not seem like a big deal, but in Raimee’s world, being told you’re a scoundrel is somewhat equivalent to a swear word.) And I don’t want anyone on our farm to use words that make a person feel small. I also know Raimee’s heart, and his struggles with finding a way to communicate when he’s frustrated or challenged. And it tears me up that his only resources to go to to share his moment of hardship are the very limited vocabulary tools in his arsenal of language; and then he carries the burden of an unimaginable guilt in knowing that those tools really weren’t communicating the things he desired to express- but they were all he had.
This is such a hard way to move through the world.
Autism is so complicated, and I have been feeling the gravity of trying to understand it, and asking others to understand it, in an environment that has become increasingly more challenging as the spectrum grows broader and the reality of it so different, and possibly somewhat diluted, in the vast sea of all that is now recognized as ASD.
And, I’ll admit it. There are some posts that come across my IG feed that make me feel deeply concerned about the liberties some folks appear to be taking with the label of autism. I can’t decide if I find it normalizing or diminishing, and I also do not feel that it’s my place to make that determination. The ability to identify Raimee’s myriad of gifts and challenges as autism gave our family a flashlight to negotiate an otherwise dark and uncertain path in life during a time when the diagnostic criteria was less fluid and the stats were 1 in 10,000. Times have changed; and our environment, culture, and awareness have changed alongside them. And I can only imagine what a diagnosis has meant for others who have been walking in a certain darkness for years.
I’m finding myself reaching into my more empathetic places in order to gain knowledge and understanding and keep a compassionate heart. This feels profoundly important to me during this season, when we celebrate Autism Awareness and Acceptance in April, and an acknowledgement of mothers (and mother figures) in May. It’s no coincidence, to me, that the two months collide.
This year, it’s been a reminder to me, especially as Raimee’s mom, to pay attention, and cultivate a special awareness towards the things he feels and holds, and cannot talk about. And to carry that consciousness into other spaces where it can love and honor others who are also holding things, that may seem small, but are deeply affecting their empathetic hearts in ways that feel isolating and sad.
Across the span of the spectrum, these are the invisible, and often unnameable, pieces of the iconic autism puzzle. Not that there are missing pieces, or broken people, but that there are all manner of shapes and experiences within the spectrum that don’t fit into what we might, as a society, consider neurotypical. Maybe autism isn’t the right box either, but perhaps it’s the best of what we’ve got in our cultural toolbox; and maybe it can offer some kind of definition and understanding to a complicated set of perceptions and responses. Sometimes, we have to work with what we have and hold hope that those around us will be gentle guides when we’ve lost sleep over our missteps.
To all the mothers out there, the mother-figures, the dear aunties, the dads, and dad-figures, let’s hold each other close. Let’s ask thoughtful questions and receive each other with open minds and loving hearts. Let’s notice each other and take time to know each other. And please, keep talking to me. It’s how I grow, and I’m a better mom, and a better human, because of it.
Happy Mother’s Day.
With Love,
Rebecca, Raimee, and our Blawesome Family
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