“Knowledge is only rumor until it lives in your bones.”
The Asaro Tribe, Papua New Guinea
I recently read this quote, and it really resonated with me as an autism mom. At first reading, it might seem a little odd, but just think about it for a minute…knowledge is only rumor until it lives in your bones…
Don’t we all feel that way as parents to children with special needs? How often do we say, “Until you live it every day, you wouldn’t understand it.”
Maybe you thought you knew. Before you had kids, you knew of autism. Maybe you knew the clinical definition. Maybe you even knew someone with autism. Maybe you were like me and worked with children on the spectrum. You knew what it looked like, and you weren’t even taken aback by sensory issues or social communication deficits.
As a speech language pathologist, I worked with children on the spectrum. I could see autism traits in strangers at the grocery store…but until I lived it every day with my own son, I had no idea, really.
I had no idea that it’s work, day in and day out.
I had no idea that it can be a constant battle for services.
I had no idea that it’s sleepless nights and exhausted days that only strong doses of caffeine can manage.
I had no idea that it’s sudden attacks of worry about their future.
I had no idea it’s sometimes two steps forward and three steps back.
I had no idea that it’s occasionally jealousy and resentment when you see their typical same-aged peers do the things that your child cannot yet do.
I had no idea that everyday tasks can be so challenging.
I had no idea of the isolation you sometimes feel living this autism journey.
I had no idea just how expensive it can be.
Since the knowledge of autism now lives in my bones, I have learned some amazing things:
I know that an autism diagnosis doesn’t change your child or the love that you have for them.
I know that kids on the spectrum work harder than other human beings on the planet.
I know that every milestone is hard-earned and should be highly celebrated.
I know that the little things are truly big things.
I know that the people who dedicate their lives to helping these kids are real heroes.
I know that our world isn’t necessarily autism-friendly, and we need to work really hard to make it more so.
I know that this autism journey is often an uphill battle, but our kids are worth it and deserve the best.
So here is the knowledge that lives in our bones – may we know it, and use it for good.