This little light of mine

This week, I got an email from my mother-in-law, where my sister-in-law forwarded to HER this link. She thought it would be useful, apparently, because it was about Autism.

Now I appreciate the thought. But at this stage of the game, that article is pretty much useless to us. My son was diagnosed five years ago, my daughter, four. We’ve been through occupational therapy, physical therapy, speech therapy, hippotherapy, aquatherapy, TSS, BSC and autism support classes. We’re now looking at new therapies: music, art and mobile. We eat special mineral-packed vitamins daily and bathe in epsom salts regularly to detox. We make our own playdough with strong scent and textures to work on lingering sensory issues. We never go to the restroom in Panera; the acoustics echo. And the prime no-no of all time: self-flushing restrooms. Little Miss will hold it all day rather than drown in that overload of sound.

I’m far from being an expert on autism, of course, so I do look at articles people forward me, or books they recommend, and most times I manage to find something of use. I don’t know why it surprises me so much that people have no idea what we’re dealing with, even with the multitude of stories out there now on the issue. They’ve seen Rain Man, perhaps. (Not even close. Well, not close to the Rain Man behavior. This particular scene…maybe.) They’ve seen Amanda Baggs’ YouTube video. (Also not close, but still thought- provoking.) Lots of people think of us now whenever they run across something bearing the A-word, and by passing on what they find, they believe they help us. But they have no idea.

Our daily lives are steeped in nuance and prediction. Which child is riding in the car determines whether we can have the bass on in the stereo. Which child is in the kitchen determines whether food is being filched from the pantry. Which child has a substitute teacher predicts whether there will be a meltdown…or not. Which child we’re giving directions depends on how detailed they can be, at what level of language, and how many times we have to repeat them to get past the ADD. We have to know. Every minute, every day.

This particular sister-in-law is currently stated in our wills to be custodian of our children should anything happen to us. But she clearly has no idea what these children are like. She and my mother-in-law live in the same town in South Carolina. She has two sweet chubby-cheeked little girls who show no traces of the family’s genetic autism streak, who visit Memaw (the southern word for grandmother, apparently) every week and are the picture-perfect image of what grandchildren should be. If she ever gets our children, she’ll have to start from the beginning, and I think she could. But I wish she knew now. Just in case.

If people want to help in a meaningful way beyond sending the latest CNN headline, that would be great! Invite our kids over to play with yours so they can practice the social skills we drill into them. Have the kids for a weekend to give us respite from our constant hypervigilance, because we need to recharge, too. Learn about the therapies we’re using and come participate with the professionals. Offer to brainstorm with us for IEP meetings. Ask what we need and be willing to carry through. We’ll be grateful.

Albert Schweitzer said, “Sometimes our light goes out, but is blown into flame by another human being. Each of us owes deepest thanks to those who have rekindled this light.” Parents need support, because raising children of any sort is a tough job. Raising these kids can be even harder because of the specialization of the spectrum. When you step up to help rekindle our flickering energy, find out whether you should bring a match, a lighter or a flame-thrower. It will make a world of difference.


5 thoughts on “This little light of mine

  1. Well said. I, for one, would like to hang by his or her toenails the person that invented self-flushing toilets. Our outside of this house life revolves around those toilets.

    Anyhoo…I’d like to print this post and hand it out to some of my friends. I know they’re trying, and I appreciate the effort, but it’s always hard to convey the challenges we face when all they see is a smiling little boy. It’s not that it’s bad, but it sure can be tiring.

    Thanks for the lift. It always makes me feel relieved when I find other people who are feeling the same way.


  2. I think people mean well by sending articles, bits of information they hear. It may be their way of trying to stay connected to us, when really, they are scared as hell of whatever it is that our kids have. Could be autism, could be a host of other things, but if it is diagnosable, that is often enough to make people distant.

    Coming into our lives is so much like learning a new language. You may sort of know it, study it a little, and yet actually going and speaking it with others takes time and energy… But it’s the only way you really get it. Spending real time with our kids is the only way anyone ever really “gets them”, too. And as you say, they are not lumpable into a category: they are unique human beings like all of us, people we get to know with habits that may be a bit unusual at times, hard as hell a lot of the time, but still unique.

    That light that you talk about in the quote from Schweitzer, that light from another that rekindles someone’s flame: that light may sometimes may be our children. That light may even be us. We all may reignite the passion and love in others, just as much as the friends and family to our imperfect lives may help us find our flames again.

  3. Beautiful piece. I too will be passing it along to the people in our lives who want to help but have no idea where to start. I know many people who think we are just over-protective and too controlling of our kids’ lives. And maybe we are. But we have our reasons.
    And self flushing toilets…oh how I dread our encounters with those things!
    Again, thank you for this. It has helped rekindle my flame.


  4. I despise self-flushing toilets. Despise. Abhor.

    Ah, and hypervigilance . . . something I think I might talk about at some point in the future. It’s not only seeing every minor detail, but for me, it’s also tied in with the feeling of eminent doom/attack. You know how in Dune the main character (whose name has escaped me for the moment) is told by his teacher to remember never to sit with his back to the door, because that leaves him open for attack?

    It’s a vulnerability that I have to be careful about not over worrying on. I think that’s why I like closed in areas (with direct exits, don’t forget that important part), because I can see all the space in front of me and I know what’s there.

    BTW, this raises another question (I could tell you the logical progression, but I don’t think you’d really want to know it all). How often do your youngest three get sick? I mean, other than stomach and allergy stuff?

  5. Oddly enough, my son has no issues with the self-flushing toilets and is the one who likes to flush, while it’s the one sound my daughter absolutely freaks out over. Our way of dealing with it is for me to stand behind her with my hand over the sensor until she’s done and can exit the stall.

    Otherwise, yeah. It’s nice when people try to be helpful, but with a big dose of “Seen it.” (Since my own social filter is learned rather than ingrained, I also have to stop myself from telling people that bluntly.)

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