Yesterday was “Marooned Without a Compass Day.” Really? Even on the interweb-thingy, nobody has been able to come up with an origin for this decidedly morose day.
But I couldn’t walk away from a day with such an obvious bond for so many parents who love a child with a “mystery illness” or a “developmental disability,” etc. I haven’t been around the block as long as some of the parents I know and love – but I’ve heard my fair share of memories from “D-Day” – which in autism- or chronically-ill-speak is called “Diagnosis Day.” We are handed confirmation of one of our worst fears: autism (or something equally staggering). Sometimes we are handed a brochure that details the state’s IDEA laws or ABA research links. But that’s about it. When it’s time to realize the enormity of your child’s gut/immune/ encephalopathy issues – you could spend a lifetime in their labyrinth of doctor’s offices paying co-pays until your eyes bleed – and have no answers or no help (that is, IF the mainstream doctors will even own up to the medical problems plaguing your child with autism).
So yeah. I kinda thought of all of us. Dropped off on this island. No compass. No map. No clue.
But guess what? There is a way to find true north without a compass. You really DON’T need that damn compass. Sure, it’s easier. But you are not freaking doomed without it. True warriors don’t need a bitch ass compass. We will MAKE our own damn compass ourselves. Up yours, compass! I will make you my bitch and create a compass out of the shadows. Or the stars. Or from the sun itself. So get over yourself. I’m good. I’ve got this.
How to find True North after D-Day.
My search for true north starts at with the wonderful folks at TACA (Talk About Curing Autism). At their website, they have collected a TON of good information for families in the throes of autism. It’s written by other parents who are navigating, or who have in the past, the same churning Class V rapids you are staring down. There is a section under “Family Resources” that is called “Newly Diagnosed”. BAM! Everything you need to get started, including making sure you get the most accurate diagnosis for your child. Everything from biomed to budgets, the information is right there. There are many other immensely wonderful organizations that help families diagnosis and recover their children from autism; my brain just happens to be able to utilize the information TACA provides in their oh-so-organized and relevant manner. It’s a great starting point – and if you need more, your TACA mentor can point the way to other places for help. Your metaphorical compass, so to speak.
My fail safe for finding true north is my sisters. Not necessarily my biological sisters, but ma sistahs.
My sisters-in-arms. The ones that shine bright, so I can find the shadow. Or blaze light in the darkness of night, so I can follow their stars. These are the people, sisters and brothers, who will point you in the right direction to get back on track. The ones who will shine a light on a dark path. Hold your hand. Give you a kick in the patootie when you need it. Your compass.
You may not find them at the first support group or Faceook group you turn to – but don’t give up. They are the ones who will lead you home.
How do you find True North, your path, when you feel lost?
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The first autism mom I connected with locally in 2002 — my North Star — showed me her PowerPoint data detailing her son’s regression after the MMR vaccine. She’d started a biomedical treatment listserv, which led me to other listservs and parents all over the country and the world. Their similar stories were helpful and inspiring, and I’m so very grateful.