Moles Unite – Get Back Out Into The Big, Bad World

Safely celebrating a birthday in our burrow

Safely celebrating a birthday in our burrow

 There is a trend among the parents of young autistic children I like to call the  “mole syndrome” – where you and your untypical family go underground.

 There are many reasons for the mole syndrome, but the initial one is safety. Many of our kids on the spectrum just don’t behave safely when outside of the confines of the burrow. They are impulsive to the nth degree, many like to run (mostly away), most like to climb (the higher the better) and I haven’t met one yet that isn’t attracted to water- they will head straight for it like a bloodhound to a scent.  And, when it comes to water, they are not particular about the source, be it a puddle, fountain, river, ocean or toilet. When Zach was 4 he had a penchant for climbing in any toilet he encountered every chance he got.   (Incidentally, while at an autism conference a few years back I recall a slide show on just this nuance – a shot of a young lad soaking up to his chin in the can – it got the biggest laugh I’ve ever heard at one of those gigs.)

So, we parents learn to hollow out a little safety far away from prying eyes. We take turns “making appearances” (those are important!) we don’t eat out, visit friends, go to movies, malls, or markets together because the pandemonium factor is so daunting. 

Back at the burrow, we parents can let our hair down. We don’t have to take turns watching the doors (even the ones to the bathrooms) because they’re deadbolted and wired with alarms and potty locks. Who wants to visit the neighbors whose appliances aren’t bolted to the walls? Why eat out at a restaurant when your darling child can snarf food in a Tijuana minute and no amount of crayons is going to keep him or her from climbing under the table to look at the pattern on the rug, or better yet climb over the booth to taste the man’s french fries behind you.

I remember the last family outing we had right before we dug into our burrow.  Zach was 4, Patrick was 6, and Tyler was 8. It was Tyler’s birthday and we had arranged for a bowling party for a half dozen of his little friends.  Everything was going great – we got through pizza and cake without *cough* much incident. Then the kids started to bowl. In our infinite wisdom we rented two lanes, one for the birthday party crowd and one for the “Z ” man. While my husband was gently showing Zach how to roll the ball between his legs, Zach had a better idea. He took a running start and slid headfirst all the way down the finely polished lane. He was just getting ready to climb through the pins to check out the mechanics of the ball-return when the manager of the place was at our side shouting. We went home and didn’t emerge for a year and a half.

The other reason for the mole syndrome is one we parents don’t like to admit, embarrassment. It gets better over time, in fact the longer you live with an autistic person the less likely you are to become embarrassed about anything – and I mean anything, nudity, loud comments on balding doctors,  your son ogling (and sometimes hugging too vigorously) large-breasted strangers. Once this hurdle is made, along comes another -tedium – we tire of explaining our children to ignorant strangers whose senses are more impaired than our kids’.

Here’s a snapshot:  My three boys and I are taking a  five-hour flight from Los Angeles toVirginia Beach after spending Christmas with my brother’s family. Two hours into the flight Zach is calling me a “dumbass” over and over and over again. (Sidenote: I boarded this flight with Zach in a kid harness and his name, flight # and my cell # taped to the sweatshirt on his back.) I am done being embarrassed and am fairly numb if not catatonic after an hour of this.  Passenger X, to my left, who boarded the plane right behind me when Zach was trying to touch each and every person on the way to our seats, says: “What’s wrong with your kid?”

I would like to rewrite this whole episode with a pithy reply that makes Passenger X feel like shit, but what I really did was ignore Passenger X and his asshole comment. 

I think that may have been the beginning of our emergence back into the world and now we fly our freak flag with the regularity that Zach deserves.

We are still cautious though, movies over two hours are a no-no, a buddy system for public bathrooms (even if Zach, who is now as tall as me has to use the Ladies room), no going where we’re not welcome (a post for another time) and no apologizing or explaining Zach to anyone.  

This works well for us most of the time and each new outing gives us the courage to try new things or adapt how we operate. Sometimes all it takes to get back out in the big, bad world is a little bravado and a dash of creativity.

One thing we discovered was the joy of Hibachi bars.  If someone is playing with fire, juggling knives and making volcanoes out of onions, Zach is less likely to wander around the restaurant checking out the customers and looking for french fries.  He will announce loudly to the chef that he thinks shrimp is “disgusting”. And we have found it best not to let him participate in the “catch-a-piece-of-chicken-in-your-mouth” game. Zach was indignant for a week after one of our outings, telling anyone who would listen about the man who hit him with hot chicken!

Another trick we have learned is to bring along some of his favorite Star Wars Action figures in case we have to “wait” for any reason (the DMV, lines at Disneyland) – these keep Zach happy and since he makes the most authentic light saber sound effects you’ve ever heard there is an added bonus – free entertainment for strangers!

His Star Wars guys helped us get through another long flight to Los Angeles just last Spring – with his tray down,  Zach happily recounted  entire scenes of dialogue to the delight of the woman we were sharing a row with.  It was a little touch and go when he dropped Obi Wan into her lap, but she kindly handed it back to him and he kindly thanked her by saying “May the force be with you.”  An absolutely priceless moment for his proud parents!