Thursday, January 26, 2012


I just did something monumentally stupid.  Okay, a string of things escalating in stupidity.  Sat on the couch, just to check my email.  Wound up on you-book, face-tube, twit-book... you know.  Got hung up.  Sidetracked.  When I realized I needed to get back to work, I stood up to take the computer in the kitchen with me, and the little magnetic charger thingy on the MacBook fell in my coffee. Panic-stricken, I snatched it out of the coffee.  Ready for this?

I licked it off.

Just a little zap, but enough to make me feel, well... really dumb.

Then it struck me.  Being me, miss neurotypical, I know that incident was just that.  An incident.  Me worrying I've broken the darned thing and doing something without thinking.  I have no fear of the computer, the charger, the couch, coffee, or the dog.  I can sit in front of the computer; even hold it on my lap.  Eat by it, sleep by it, dress and undress by it if needed, and all without shaking, crying, screaming, thrashing, running around in terror, or slapping and/or holding my ears. My mind processes the fact that I made a mistake, and what caused that little jolt on my tongue.

All the time, we find new things that Ryan associates with things that have happened.  It's no big deal sometimes.  Since Thanksgiving, he asks every day if we can go on the people train (DART rail in Dallas) on Wednesday.  Guess what?  We went the week of Thanksgiving... with me telling him all week leading to it... on Wednesday.  Every time we go eat at a Wendy's, he thinks we're going to a hotel immediately afterward.  Guess what?  Last July, we ate at Wendy's before we went to stay in a hotel in San Antonio.  The string of these things goes on and on.

No big deal, right?  All kids associate things with something, right?  No.  Most of the time, after the first three or five times he asks, he gets that things are different and they're going to be ok.  But that 25% of the time or so that it totally rocks his world into a meltdown that we're not going to the hotel after Wendy's... that's hard.  And not all associations are this cute.

Some of them are painfully frustrating for him.  For all of us.  Some of them are phobia-level, and we cannot for the life of us figure out what in the world caused them or how to help him reconcile and overcome his fear.  Over and over, we encounter these things.  Over and over.  We have to live.  We cannot simply avoid all these things.  Like flies.  One fly in the kitchen and he won't eat.  He holds his ears, shaking, sometimes screaming, sometimes crying.


We go to great lengths to kill flies at our house.  And moths, but to tell the truth I hate moths too.  Flying jerks, we call 'em.

I'm convinced it's the buzzing he can't stand for the flies.  Then there's the washer and dishwasher.  He will not eat with one of them running.  If he has to come in the kitchen, he holds his ears and darts through like a little ninja.

Then there's haircuts.  Oh man, the haircuts.  Simply horrific.  And candles.  Oh dear.  Shaking, crying, screaming.  The absolute worst part of all of this is watching him suffer.  I can give up candles at home, but I cannot make sure there are never candles burning anywhere we go.  Almost as frustrating is the (albeit usually well-meant) "have you tried?"  I can assure you that we've tried and tried... I've even tried letting him cut his own hair.  The candle thing has improved to a degree, but he still isn't crazy about them.

A lot of these things, one at a time, are a pain but could be dealt with easily.  Most times when folks say "oh, that's every kid" they see one of these things.  A very mild form of one of these things.  But it's not "every kid."  The "every kid" comment isn't as helpful as you might think.  It's pretty frustrating.  Okay, it's hurtful.  It feels like you're saying, "What's the big deal? What are you whining about?  I could do this with both hands tied behind my back.  Just calm down.  You're overreacting."  And "Just a little discipline" and "Just make him" are beyond infuriating, not to mention tragically misinformed.

To be honest, most people either don't comment or, especially at church, just pat us on the back and smile.  It's so refreshing and encouraging when people show that they trust our parenting in this way.  No pressure, no suggestions, no demands, no panic about trying to fix it for us... just brotherly, Christlike, amazingly simple abiding with us.

That's the first step of ministering to a family with Autism.  Hug our hearts.  Just smile, accept that we're truly doing our best, even though your whole being screams "I COULD FIX THIS!  I could do better!"  Because you can't.   Even if you can... is showing that you can and I can't helpful?  Edifying?  Encouraging?  Loving?  Would you really want someone else to say to you what you're about to say to that struggling parent?  Know that we have spent hours, days, weeks, months, even years studying and researching and listening to doctors and therapists and people who claim to know best.  We don't need to be zapped by your glare or burned by your words.  It zaps us enough to have to leave the candles off our other childrens' birthday cakes if we want brother to be there.  It burns us enough to watch as he grabs his hair and screams "NO!" when we walk in the room with scissors... not even shears for haircuts.

Trust me.  We get it.  We're noisy.  We make some of you uncomfortable. You're not more uncomfortable than he is.  Want to help?

Trust us.

Smile at us.

Tell us what a great kid he is.

Let us talk to you for a minute, realizing that we'll have to stop mid-sentence about ten times to answer a question, say "WAFFLES" with him, or make sure he's not wandering into traffic.

Invite us to have coffee... or lunch... or to the park... and understand if we can't.

Talk directly to Ryan.  He can hear.  He can think and feel.  He just isn't YET able to express himself in the same way we do.

You don't have to pressure us to "take a break" or feel pressured to take the kids for the evening so we can have a break.  We love our kids, we love our life.

If you truly love our kids and want to offer, that's awesome!  Understand if we can't accept.  It's as hard if not harder to leave them with someone new than to take them with.

Pat Ryan on the back.

Pat Maelynn and Richie on the back.  They're great kids, too.

Emails, calls, notes in the mail, and certainly texts are welcome too.

And you really want to know how you can help?

Find another family with Autism.  Or a family with a special need.  Or just one that isn't exactly like you.  Figure out how they feel love.  Show the love of Christ to them.  Shake off your knee-jerk to judge... we all have it... and reach out.  Outside your comfort zone.

You never know.  You might save a life.

And next time you see me, you're welcome to pick on me about licking off the charger.  That was really stupid.  :-)

For you were called to freedom, brothers. Only do not use your freedom as an opportunity for the flesh, but through love serve one another. For the whole law is fulfilled in one word: "You shall love your neighbor as yourself." But if you bite and devour one another, watch out that you are not consumed by one another.  -Galatians 5:13-15

Thanks be to God, who gives us love and shows us how to use it.  

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