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.