April is Autism Awareness Month. There are any number of erudite and passionate posts about the subject —some I agree with wholeheartedly and others significantly less so. I’m not jumping into the fray as my hands are more than a bit full right now with being aware of my son’s very real, very intense needs right now.
I am grateful to all those other writers who have the energy, the stamina, and the vision to stand and speak for those of us who are hunkered down in the trenches and feeling under siege. They often provide me with hope and encouragement. Sometimes, they provide a much needed laugh or the comforting recognition of a kindred spirit. Sometimes, they take a stand that is so anathema to my inherent beliefs that it helps me get clearer about where I stand on some of the more controversial elements of autism advocacy. I don’t always like what these writers have to say but I appreciate their right to say it and their role, I hope, in pushing people off the fence. It’s hard to advocate for something if you don’t know where you stand.
Here’s where I stand. I don’t believe my child is “vaccine injured.” Nor do I believe my child is “trapped” inside a shell waiting to be brought forth by some miracle cure. And, perhaps shocking to some of my readers, I don’t think Nik’s pain and intestinal issues are related to his autism. Certainly not in the sense that I believe resolving those issues will make him any less autistic. I do believe, however, that resolving those issues will make him a more physically comfortable autistic person.
Right now we’re going through a hellish time, I admit. But I don’t attribute that all to Nik’s autism and I certainly don’t think that my life is awful or that Nik’s life is awful. We’re just going through a crappy patch right now.
This, too, shall pass.
Until it does, I’ll continue to go to bed early, take the good times as they come, and rely on the community of parents I’ve come to know through my blogging and on-line efforts to buoy my spirits, to touch my heart, to speak the words I wish I had the energy to speak, to walk the walks and raise the funds, and to continue to advocate in the ways they do with integrity, dignity, and respect for our loved ones.
Awareness, my friends, takes many forms. Advocacy can occur on any scale. Mine is just smaller and closer to home these days. To borrow the words of my friend, GoodFountain, autism awareness has to mean Nikolas awareness —first and foremost. I think I’m doing okay there.