Recently, I saw a string of comments in response to a fellow SPD adult's post about her personal acceptance with her sensory struggles. It went something like this:
Parent 1: I disagree with what this gal says.
Parent 2: Me too. My child will be way better prepared than this chica has been for her sensory life, so she'll be able to cope better. Let's disregard this post.
Parent 1: Hear, hear.
The post itself was lovely, welcoming, and engaging. The blogger said nothing untrue about her own experience with SPD, because as you will agree, all experiences are valid in this life. She also happened to say things that are spot-on, not only for the delayed-diagnosis sensory adults of this community (like yours truly), but for both teens and children diagnosed nice and early. What she wrote is what I've heard from pretty much everyone across all areas of this community as a leader of the adult faction. In short: this post was conceptually close to flawless.
And yet, here were these two parents doing . . . what, exactly? Pushing back? Mama birding? Proving something to themselves? Proving something about their children? Fighting their own insecurities about their differently wired children?
Listen. We're all in the same boat here. The vessel is the S.S. SPD:
Some of us are passengers on this ship and some of us are oarsmen. The thing is, although our experiences vary, we can learn so much from one another if we just stop and listen, without judgment. This is especially true with sensory parents and delayed-diagnosis sensory adults. There's something special in our connection if you know where to look.
So what can you learn from us?
We can give your child a voice.
We were once voiceless sensory children. In childhood, it's not only hard to understand what's commonly experienced by others and what's unique to your makeup, it's hard to find the right words to explain, in depth, what it feels like to live in a complex sensory world. Especially one that parents and teachers may not have experienced themselves and may not accept as being real.
Do you know those Before and After pictures that they show when they advertise weight loss supplements? Like this fella?
Well, I like to think of delayed-diagnosis sensory adults as the eternal Before. (Not in a morbid or powerless way, mind you, I feel quite positive and strong most of the time.) I agree that so much can change for people like me with the right types of therapies and tools in place. But in reality, we never will rewire in quite the same way as those diagnosed earlier than us. We have had too many life experiences. We've developed too many patterns. We've found a creative way to cope with our challenges. (We are the Kings and Queens of Coping, by the way, and not unable to cope as those comments wrongly implied.) Because we've been voiceless sensory children and we're the eternal Befores, we are - in many ways - going through exactly what your child is going through now. Some of us are new to OT. We have meltdowns and shutdowns. We are doing our damnedest to establish our sensory sea legs. The difference is we're older, we're more experienced, and we can better express what it's like to live in a sensory body.
We can unlock the secrets of living with SPD for you. We can demystify your child's experience of the world. Neat, huh.
Sometimes I jokingly tell parents that I'm the worst-case scenario for their children. I'm an example of someone who didn't receive the treatment and accommodations I needed because no one knew SPD existed, even though I was raised by the most incredible, loving family. And what happened to me in my life? I graduated from college and graduate school with great grades. I got married. I developed hobbies and passions. I work hard to fight for others like me. I have friends. I love and am beloved. Sure, I may process things differently and it may be uncomfortable for me sometimes. I'm not relaxed or laid back. I will never be "chill." I deal with significant anxiety in relation to my sensitivities. But I'm still standing - quite well, I might add. I turned out alright.
So instead of fighting us or distancing yourself from us, learn from us. Read our posts and see your own children. See the children we were as we struggled alone with an unnamed something. So many of you already have. See what you can glean from our expressive wisdom and toss the things you find less on-point. It's our honor to speak for your children and to take your hand and lead you through our challenges and triumphs. We want the next wave of sensory children to fare better than we have. Doesn't every generation want more for those who follow in their footsteps?
At the end of the day, though, it's our responsibility to come to the aid of others like us, as my friend did through her blog post. We lost children must reach out to one another and pull each other out of the whirlpool. We must hand one another a towel and a warm mug of tea. We must be each other's champions, especially since our older voices often get lost in the shuffle.
We are truly overjoyed to serve you, but it is ultimately our duty to serve each other first.
Shameless Self Promotion: Want to learn about SPD from a delayed-diagnosis sensory adult's perspective and hear more from yours truly? Pre-order Making Sense: A Guide to Sensory Issues today!