My favorite thing about the Doublewide Ranch is our front porch. We have a swing, two rockers, and a 15-mile view where we can see the lovely skyline of Asheville, eleven miles away. At night, the lights of the city twinkle and shimmer, and Asheville looks like the Emerald City in the Wizard of Oz.
But on this side of Asheville, there are lights that shine even brighter than the city lights, and for a long time, we speculated about what they might be. They shine luminous and golden and lovely—strung out like diamonds on a necklace. From a distance, it looks like a magical, fairytale sort of place and we spent a fair amount of time driving around in that area until we finally found the source of the radiant glow. What was it? Why, it was…a prison. Which, of course, explains the very bright, shining, golden lights.
The point I want to make here is that, from a distance, things aren’t always what they appear to be. And until we look closer and know more about a situation, we can often draw conclusions that are far from reality. And I make this point because, in recognizing National Autism Awareness Month, I want to talk, not so much about autism, but about the great harm that words of judgment (so often based on scant knowledge) can do.
And as the mother of an autistic child, I have certainly known judgment. It’s bad enough when it comes from complete strangers—like the people who look askance when your child behaves in an inappropriate way in public. Truth is, I soon learned to tune those people out and shrug off their heedless words. But the judgment that hurts the most and cuts the deepest is judgment from the people you love—in my case, my extended family.
When Benjamin was very young (from about age two to four), he would scream in terror when I tried to cut his hair. It wasn’t a tantrum scream (believe me, I know the difference)—he was genuinely distressed. Having his hair cut was obviously, for whatever reason, very traumatic for him. (I have learned since that that’s fairly common with autistic children). So I made the decision to leave his hair long until we could figure out why it troubled him and how we could make it easier. (I did cut his bangs while he was sleeping).
This resulted in no end of snide comments and even ridicule from most of our extended family. Of course, I explained the reason to them, but it seemed to make no difference. Comments ranged from He looks like a girl to He looks ridiculous to You shouldn’t give in to his tantrums to Don’t you realize this is going to cause real gender identification problems for him?? (I reckon that means that they also didn’t like that I let him play with dolls.)
Around about the same time, Benjamin went through a phase where he liked to recite the complete dialogue (including narration) from videos he had seen. Amazingly, he could do this after seeing it only two or three times, and he did it verbatim, complete with inflections and accents. A real favorite was The Wrong Trousers (with Wallace and his faithful dog Gromit. Benjamin really fancied a British accent.) It was very entertaining, really. But, of course, this just gave more reason for my extended family to issue more unsolicited and ill-informed advice. “You must be letting him watch videos too much. That’s not good for children.” Well, no…actually I limited my children’s TV and video watching when they were young. I explained to my family that Benjamin could do this after seeing a video only two or three times. I could see from their self-righteous expressions that they didn’t believe me.
While most parents probably second-guess themselves and wonder if they’re doing the right thing for their children, I think parents of autistic children live with that feeling more than most. Often, it felt like I was traveling in a foreign country without a map, and sometimes all I could do was to put one foot in front of another, hold fast to hope, and pray I was traveling in the right direction. And it was not helpful to have people who have never been to that foreign country tell you that you’re going wrong.
I could go on and on with examples of how destructive to our spirit all the ill-informed opinions and unkind judgments of others were, but there’s really no point in that. But what I want to say is: If you know someone who is going through hardship—of any kind—first of all, listen. Listen to their fear, listen to their sadness, listen to what they’re NOT saying.
Second…educate yourself. Ask questions, read, seek answers—it shows you care. I really don’t think a single person in our extended families ever bothered to learn much of anything about autism. Yet, remarkably, they fancied themselves experts on how we should raise Benjamin. Imagine that.
Third, encourage. One of our dearest friends (who passed away a few years back) was our friend Ernie who, although blind, had the clearest vision of anyone I ever met. We were talking on the phone one day and she said, out of the blue, “You are the BEST mother!” And I cried. Just five little simple words, but they meant the world to me. We miss Ernie.
Fourth, unless they ask for it, resist the temptation to offer advice based only on your own experience. Remember: your reality is not their reality. As they say, don’t judge unless you’ve walked a mile in their shoes.
The irony here, of course, is that I’m likely preaching to the choir. Because if you’ve read this far, it means you care enough about me and my family to read through this little diatribe and that you’re probably not the sort to make rash judgments. Often, it seems that the very people who most need to hear something never do. As Paul Simon said in The Boxer, “…still a man hears what he wants to hear and disregards the rest.” (And, in case you’re wondering, no one in my extended family reads my blog. Even if they knew about it, I doubt they’d be interested enough to read it.) But if my words make one person think, then I think…perhaps…they are worthwhile. If nothing else, it’s probably a good thing to get this off my chest—it’s been a source of great pain for us.
So thank you for listening…and for your comments. They make me feel as though perhaps I’m not just crying in the wilderness—that my words are not all falling on deaf ears. For that, I am most grateful.