Autism Moves Out

Recently, I was cutting CJ’s hair and giving him a shave, and it suddenly occurred to me that this was one more weird thing in the strange little world that is our Normal.

CJ has sensory integration issues.  A few years ago, I would have put that phrase in quotes.  Now, I won’t bother, as more and more people have become aware of what that is and that many children struggle with these peculiar sets of disconnected perceptions.  Many people now know of the kid who can’t bear the top seam of a sock across his toes, or the wind from a fan blowing across face or legs, etc.  Even the corporate world has gotten wise in a few cases.  T-shirt manufacturers have started making shirts with printed tags instead of sewn-in tags.  (This is great for the kid who would otherwise pitch a tag-induced fit and proceed to claw his shirt off in the middle of church, but not so great for moms everywhere trying to read the washing instructions in the tattered stamp of a well-worn Angry Birds XXL.)

Everyone has worn a scratchy shirt they couldn’t wait to get home and take off.  Most will wait until they get home to actually disrobe, however.  Everyone has had someone yank on their hair too hard.  “Ow!” or “Excuse me, not so hard!” usually stops the offender and life goes on.

Not if you have sensory issues.  A scratchy tag or a pull on the hair can produce an instant “fight or flight” response and you can find yourself running after your child with autism in the middle of a church sermon or struggling to put his clothes back on in the aisle at Walmart.  On a really bad day, you may find the entire contents of your garage scattered across five or six of the neighbors’ yards while the police walk up your driveway with professional smiles on.

Haircuts.  Tooth brushing.  We take them for granted.  Now…imagine that getting a haircut is actually physically painful.  Imagine that brushing your teeth can actually hurt.

Welcome to CJ’s world.

When CJ was very young, we had a neighbor who was a hairdresser.  She would cut his hair with scissors while he was in a swing or in his high chair.  It worked.  But as he got older, it wasn’t as realistic.  For a little while, we had someone who would come to our house.  Then I tried taking him to professional places a few times.  One visit ended with me pinning him to the floor in the middle of the salon while the stylist attempted to finish.  I can’t describe to you the end result but it was one-of-a-kind.  Later, we had a neighbor who cut her boys’ hair and she would do CJ’s as well.  For some reason, with her he tolerated the clippers in short doses even though the buzzing would drive him crazy if anyone else tried.  I didn’t question it and thought of it as a gift from the Haircutting Gods.  When she moved, I was once again at a loss.  Then CJ told me that he wanted me to cut his hair.

????

I do NOT cut hair.  No, no no no no.  I knit, I craft, I cook, I bake and I’ve even been known to laminate stuff.  Hair?  Okay, french braids…I’m all over that.  Pony tails and head bands…sure.  But actually cutting?  We did not own clippers.  I had no idea what to do.  Just…no.

But…the alternatives were a child who looked like a refugee, plus pointed, disapproving stares in public, and a monthly wrestling match at Super Cuts (if they’d still let us in the door), or…clippers.  So I bought a set and learned.  Never let it be said I can’t be moved by the twin motivators of public embarrassment and saving money.

At first, I needed something to practice on, and I can honestly say that this was the only time I have ever wished we had a dog.

Here’s what I now know:  if you cut on a #1, it lasts longer.  If you do a #1 all over, it is less noticeable if you screw it up.  CJ has curly hair and mistakes are hidden better that way.  We are all about the #1 cut at our house.  Some cuts go pretty well.  Some cuts do not.  He does NOT sit still.  Therefore, giving CJ a haircut can be something like shearing a sheep.  Grab, wrestle, grab some more, twist, throw a leg over if necessary, ignore the loud complaining and avoid actual bloodshed.  We have had a few interesting results.  Luckily, hair grows back, though his grows a little too fast for my taste.

Sensory issues don’t end with hair, however.  There’s the matter of oral hygiene, a daily torment for both the child with autism and the parent with a child with autism.  In CJ’s world, a toothbrush is a weapon and Mom is a marauding dental demon.

When he was little, I would pull his comforter up to his shoulders with his arms under it and pin him down with my knees on his shoulders.  When he screamed, it was my chance to jam the toothbrush in and start brushing.  I was big, he was small, and I was tired of chasing him around the house each day.  You’d have thought I was wielding a chainsaw instead of a Colgate-laden toothbrush.  Of course, as far as CJ was concerned, it was about the same thing.

That was SO much fun.

NOT!

Now, thanks to the miracle of years of occupational therapy, he has learned to tolerate much more these days.  Brushing we can do, but he still cannot get his teeth cleaned at the dentist.  He has to be put under general anesthesia to have any dental work done.  Insurance doesn’t like that.  I don’t like it.  CJ doesn’t like it.  I don’t even think the dentist likes it.  Certainly my wallet doesn’t like it.  But there is an amazing organization called Grotto that will pay for dental work for persons with developmental disabilities.  They covered all of our out of pocket expenses more than once, and CJ has managed to keep all his teeth so far.

Except for his wisdom teeth, which had to come out last year.  He did really well.  He has an amazing ability to heal ridiculously quickly.  Like, superhero/vampire quickly.  That works well for us, as the prospect of a 17 year old, 200 lb teenager with autism running around or trying to eat with bloody holes in his jaws is enough to make me hide in my locked bathroom with a Kindle and a week’s supply of food.

My new least favorite sensory overload activity is shaving.  CJ is nearly 18.  There’s more hair now, and the bearded Victorian look hasn’t come back in vogue yet.  (I keep hoping)

Shaving involves razors.  Razors are sharp.  Picture me, CJ and a razor and use your imagination.  Go electric, you say?  Ah, electric razors work, but only so well (the closer the shave, the longer we can go to the next shave, you see) and they vibrate…so you see where this is going, and we are back to the sensory issue.  Shaving a moving target is even more interesting than cutting the hair of a moving target…and you can’t go a month or two in between.

Luckily, so far, CJ has only been nicked a few times.  Most have been minor and I take full credit for my new, deft shaving skills.  But once it was my fault and it was on his lip.  Anyone ever get a cut on their lip?  It bleeds like you’ve sliced an artery.  And it does not stop bleeding.  I know they say that “head wounds bleed,” but they didn’t say for how long, or what you can do with it while it’s happening.  Together, CJ and I have discovered that if you flail around and carry on like a wounded dragon, you can get blood on your shirt, your towels, your bedding, other people, the cat, and anything in the general vicinity.  If anything suspicious ever happens in my house and they bring in one of those ultra violet lights they show on crime shows to look for blood, I’ll be put away for 20 years with no hope for parole.  Clearly, they’ll say, there was a murder in my kitchen, and they’ll start digging up my backyard.

Luckily, I have witnesses to what actually happened…my daughter, who is underage, and the cat, who isn’t talking.