The Awesome Power of Caregivers

Don’t worry my friends who enjoy the more frivolous commentary of my blog – I’ll return to my regularly scheduled whimsy soon. At the moment, I have picked up my puzzle-shaped coat-of-arms and joined my brothers and sisters on our quest to spread autism awareness throughout the land. We’re the Knights of the Spectrum Roundtable, and I can assure you, that table is a perfect 360 degrees; no lopsided ovoids for us.

I’ll be hopping analogies, metaphors, and all types of figurative language today, so I hope you’ve eaten your breakfast. To continue: Parenting, I have been told, is tricky. Parenting a kiddo with autism is tricky, with a capital T, fire shooting out of its mouth, spoken in a foreign language, looking at the world below from the precipice of a cliff with angry mobs prodding our backs, while other people tell us to have faith and climb on down, but we’re afraid of heights.

Fear or not, we have to make our way down that cliff. There are probably those of you who want me to provide a lovely image of making my way up a hill and standing on top of the mountain all victorious, a Rocky of Autism Mommahood. That image doesn’t work for me. I don’t mind an uphill battle; I don’t mind hard work, sweat and tears. I mind failing, I mind falling, I mind crashing, so my mental model is all about the fall.

I am not at war with autism. I refuse to capitalize it unless it’s part of a title, but that’s just my way of showing a word who’s boss. I am not tired of fighting my way through the educational system I’m proud to be a part of. A huge part of my experience as a warrior on behalf of people with special needs has been in reframing other people’s ideas and assumptions anyway.

We, the warriors, learn how to rappel down the developmental cliffs with the people we care for, providing a safe landing on firmer ground. We learn how to tell a buckethead practitioner from 20 paces away, and we can stop a patronizing discussion before it begins. We also know how to ignore the helpful commentary of strangers while our loved ones are melting down. We develop thick skins; most importantly, at some point we learn how to recognize that we didn’t tame the dragon, we harnessed our own.

Our best weapon is a combination of knowledge, endurance, and practice. Humor helps, of course, hence the faulty allusions to either Camelot or the Game of Thrones, depending on how old you are. The battles are emotionally bloody; we fight to secure a future in which our children and loved ones can be productive, happy. We have every reason to think that they should be, and I know it’s worth a cliff dive or two (metaphorically, please) to ensure that all people have access to their futures. Did I tell you anything new about autism? Nope. I hope, however, that we all understand that warrior-parents and caregivers, their teachers, therapists and service providers, are a formidable army of awesome and we need to continue wielding our power so that all people have access to early intervention, quality care, and the necessary supports to be successful.



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