Thursday, August 14, 2008

Autistic Children in Public

This news article didn’t just hit close to home—it struck me right in the heart:

Autistic Kids’ Outbursts Stir Furor and Guilt

We know our autistic children are disruptive, and we don't like it anymore than anyone else. We don't excuse it, to the extent that we try to avoid putting them in situations where they will disturb other people. But sometimes, we have to take them out--e.g., to the grocery store or doctor's office, where there are other children. I do not relax on any of those occasions, for fear Baby Bear will spit on some unsuspecting person or knock over a smaller child like a bowling ball picking up a spare. In fact, Mr. Lucky thinks I should relax and not be so overvigilant and sensitive to dirty looks.

For the very reasons stated in the above article, we’ve never taken any of our children to church. We trust God understands this, because He’s God. Once upon a time, children like mine were probably thought to be demonically possessed. On the other hand, one might think Baby Bear’s nonsensical babbling is “speaking in tongues” and that he’s full of the Holy Spirit. I do know he’s full of unholy spit, and like the young man described in this article, he deploys it wherever we go. I'm always afraid that one day he'll spit at the wrong person, and suffer violent retaliation.

Baby Bear has never been to the movies, for the same reason he’s never been to church. The Crown Prince, on the other hand, does fairly well at the theater. Even though he’s almost twenty years old, he still likes Mr. Lucky to take him to see the newest Disney/Pixar and Dreamworks cartoons. Not only have they gotten strange looks from people, but once a woman actually approached my husband and son in the theater, and asked if they weren’t a little old for the likes of Finding Nemo. She may have been wary that they were pedophiles on the prowl, and I can understand that concern. Still . . .

Our children are not good travelers. It’s an ongoing struggle to keep Baby Bear buckled in; he liberates himself every time we go out, and we invariably have to pull over and strap him in again. They can handle a drive to their paternal grandparents’ house two hundred miles away, but beyond that, all bets are off. When we moved from California to Florida in December 1993, we drove the whole way on Interstate 10, and the Crown Prince and Fiona all but stopped eating during that week. (Don’t get me started on when the car broke down halfway between El Paso and San Antonio, on a Sunday afternoon when everything in rural Texas is closed. That’s on my Top Ten Worst Moments of My Life list.)

Even without the children, neither Mr. Lucky nor I have ever enjoyed air travel, considering it a necessary evil. We will not board a plane with any of our children unless we absolutely have to. Fortunately, this has only happened once.

When we lived in California, the military doctors at Travis Air Force Base wanted to send the Crown Prince to a specialist at Wilford Hall Medical Center at Lackland Air Force Base in San Antonio, Texas. Right before the military medivac plane took off, the crew insisted on removing him because of the disturbance he created. After being rescheduled for another flight, with doctors’ orders to be sedated, he and Mr. Lucky managed to fly to Texas and back. The consultation, meanwhile, turned out to be a total waste of everything. Mr. Lucky said they could’ve just mailed copies of the child’s medical records to WHMC.

And just like the parents of the kid in the article whose uncle thinks he should be institutionalized, I’ve had to call the police when the Crown Prince, in the absence of his father deployed overseas, became violent toward me and Baby Bear. I didn’t know what the hell else to do. I hated doing it; I hated myself for doing it—so much so that the last time it happened, in May 2006, I let him chase me out of the house and into the driveway in hopes the neighbors might see and call the cops, because I didn’t want to. (It worked. To this day I don’t know who called, but a short while later, two sheriff’s deputies pulled up in front of our house.) He was placed in a group home after that, and fortunately he’s very happy there, but I wish it hadn’t happened that way.

Just taking a trip to the grocery store is a subject for a whole other blog entry.

I’m not complaining; I certainly hope that's not how this sounds. I’m just saying that what’s in that article is dead on, and this is how we deal with those issues chez Lingefelt. (If we had a "normal" kid, we probably wouldn't know what to do with him!)
It’s the life we know, and we can’t imagine any other. But we still love our kids for it.

By the way, the article failed to mention how important it is for everyone, on both sides, to keep their sense of humor about it. That, I believe, is the secret ingredient for dealing with this.

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