It’s one of those weeks where we start to wonder what keeping a schedule is really worth. Argh. It only serves to make our efforts look like a poorly written joke.
Snow days, off days, half days. Now jury duty days. A cannot find his groove anymore, ergo neither can we. When school writes notes saying his behavior was ragey, I really want to write back, “Dear school peeps, It’s been a while since school was actually in normal session. Maybe we should table behavior talk for a bit, kthx.”
But of course I would not do that. They are amazing people who empathize far more than anyone else, and they don’t say flippant stuff about our situation or perceived attitude either.
That brings me to something I want to say directly here, not with intricate prose, or through the medium of subtle poetry. I want to say it because it has affected us on multiple levels lately.
It is not just intended barbs, casual rudeness, or observer impatience that can hurt an autism family, an autistic child, or a sibling of autism, though those are terrible, and believe me, they can leave a lasting impact.
It is also a little bit of knowledge in the hands of a non professional; well meant advice; pop psychology; anecdotes about other families meant to be teachable moments; and various “I mean well so bear with me” communications that isolate us.
If you get it, you have my blessing to stop reading here. If you are wondering why I am being such an ungrateful grump, then I implore you to read on.
These well meant interactions isolate us because they allow us to see how we look to you. And what we see is that you don’t think we handle ourselves with grace, joy, or verve. Even if we brush it off by saying you don’t know how rewarding our daily family life can be, along with how much we handle, the fact is that once the veil has slipped, we don’t trust you as we once did, or thought we could. You have shown us that at any moment, no matter how close to the edge we may get, you might say something that sends us over instead of offering a rescuing hand. Therefore you are not a safe person. Maybe you don’t feel you need to be, in which case I urge you not to say anything at all.
Also, we don’t go around telling you your parenting could be better. Even if it could be. So just because we have autistic kids with severe challenges doesn’t mean we a) want to hear it; or b) don’t have trained people to advise us.
And the most crucial, in my experience: pop psych is not okay, especially when applied to families going through crises they probably haven’t even told you about, and most especially when it’s aimed at our children. Just do not do it. Please. You do not know how much we struggle with the scars left by how well you meant.
Finally, if none of the above applies to you, please excuse my vehemence and know how much I appreciate you. But if at all what I have written has given you pause, a prickle of unease, or a rush of indignation, then I did mean to speak to you, and I love you for caring, and I know that talking to me can be fraught. We can talk about unrelated topics—books are always a passionate subject for me. Tea. Where you’ve traveled lately. I care about you too, and want to hear about your life. We do not ever have to talk about autism again.
But if we do, if we do, please let me (and others like me) lead the discussion. Please listen without talking over me. And please hear, along with the self doubt and exhaustion, how much love and pride and acceptance I carry in me towards my children. It all merges together, and sometimes I am dying to say it. Sometimes I need to drop the load of fakery and peppiness and calm, and I need someone to bear witness to my words. You are that witness, if you’ve read this far. You are important. And I need you not to edit my testimony. It may sound tentative or half baked, but it is my truth, and if I carry this duty to the finish line, it will be because I had somewhere I could whisper broken words of despair, sing exalted notes of hope, and lay my head in the lap of unbreakable solidarity.