Night and Day

My boyz are as different as night and day.  We've all heard the expression ad nauseum "If you've met one person with autism, you've met one person with autism." but even the most jaded person in the world would think that two boyz from the same gene pool, raised in the same environment with the same diagnosis would have more things in common than not in common.

I'm here to provide evidence to the contrary.

Both my boys have communication problems.  Joe didn't talk at all until he was almost 3 and then started spouting words and phrases from books at a phenomenal pace although comprehension is still an issue at 18.  Alan, on the other hand, seemed to develop typically until he was about 2 and then rapidly regressed and seemed to stagnate.  Grrrrr  Just when you think you have this autism figured out, the second one is completely different from the first. 

What was difficult for Joe (potty training) happened almost overnight with Alan.

What worked so well for Joe (ABA) had almost no effect on Alan -- he just ritualized things. 

Alan goes barefoot every chance he gets (even in this picture from last December when there is still ice in the raingauge) but Joe puts on his sandals every time he needs to step on the grass because of his sensitivity issues.

Joe always has something in his hands in his toddler pictures (usually several somethings) but Alan always wanted his hands free to climb.

Joe has always been sound sensitive.  He hated fire alarms at school, he used to wear noise muffling headphones for watching fireworks (and we weren't that close) and he still wears them for cutting the grass.  Alan likes making the most piercing noises known to man but doesn't seem to care what sort of noises are in the environment.

Even for things that they both loved (their wooden toy trains) they played completely differently.  Joe would carry around a handful most of the time but when he played trains, it was to run them along the track stimming out of the corner of his eye.  Alan likes to make very long continuous trains and crash them off a high surface.

Joe is unbelievably gentle for a boy.  He doesn't like violence and has only lashed out physically a handful of times.  Alan came out of the crib headbutting.  I have a very vivid memory of telling him no about something when he was barely walking and him turning around and headbutting Joe in the back.


They both love swimming, but Alan loves the ocean and waves and Joe is skittish of critters and prefers swimming pools and his mask.

Joe used echolalia and scripting to start talking.  He would take a phrase he had heard in a book or a movie and apply it to a different situation to come up with an expression that was most times appropriate.  Alan just scripts for the stim.

Alan is a complete daredevil and climbs to the top of everything while Joe is a little bit scared of heights.

Alan has been known to elope on more than one occasion (going so far as to attempt to walk to his aunt's house 5 miles away), but Joe just leaves the situation and then comes back when he has calmed down.

Joe is a complete pack rat while Alan loves to "clean up" and has thrown out numerous things we then had to fetch out of the trash including silverware and unwanted toys.

Joe has always loved crafts of all sorts, but paper/pencil activities are torture for Alan.

Joe always slept like the dead but Alan had a more difficult time falling asleep and tended to wake up at first light.  This has improved since he has become a teenager but he is still our usual weekend alarm clock.  Trust me, it is impossible to sleep through a 160 lb. kid back flipping out of bed on the floor above you!

Alan is very motivated by "task completion".  At school, they frequently use finishing a job as the reward for doing the job itself.  We joke that this is the reason Alan gets in the ocean and starts swimming for the horizon -- he has to get to the other side!  Joe on the other hand, loves to start projects ("I am going to type all the numbers from 1 to 1,000,000.") and a few days later he loses his motivation. 

So for those people out there that do not like the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) changes to the definition of autism, I would like to point out that I think in many ways this will be more accurate.  Under the DSM-IV, both my boyz are "PDD-NOS".  This does not even begin to cover their complex differences.  At least with DSM-5 they will be level 1 (Joe) and level 3 (Alan).

Rob Growski of Lost and Tired said, "The most dangerous mistake in Autism is generalization."  He's got that right!

One Tough Cookie

Lots of kids with ASD are either hypo- or hyper-sensitive when it comes to pain.  Even Joe will have a fit over a shot but once got a nursemaid's elbow (partial dislocation) when he was about 3 and never cried.  But as with so many other things in our family, Alan wins the prize.

It was a couple of years ago on a Saturday about 1 in the afternoon.  Alan is sitting at the kitchen table eating, Joe and DH are in the next room watching a video and I walked into the kitchen intending to clean up the dishes in the kitchen.  I look down into the sink and see a bloody washcloth.  This wasn't an "I cut my finger and used the washcloth to stop the bleeding" amount of blood.  It was closer to "I cut OFF my finger" amount of blood. 

No one in the family is susceptible to nose bleeds and there had been no tears (or screams) all morning.  So I did what any typical mom of boys would do and called out, "Who's bleeding?"

Not too surprisingly, the only response was from DH.  "What?!?!"

"There is a bloody washcloth in the sink!"

"Well it isn't from Joe or me!"

Then in unison, we both head toward Alan from opposite directions.  Here was the sight that met our eyes.  (Actually this picture was taken later that afternoon after we cleaned up a lot of the blood but you can still get the idea.)  There was a 6" ring of wet on his shirt!  Since the shirt was dark, we hadn't noticed that he was bleeding but from the amount on shirt and the washcloth we figured it had happened about an hour earlier.  But did he cry or come to us?  No, he just tried to clean up the wound himself.  He is one tough cookie!  We never did figure out where or how he had fallen.

We called a doctor friend of ours and he said we could take him to the ER but reminded us that head wounds bleed a lot.  We debated but did attempt to take him to the ER.  Alan was fine with the getting in the car and driving over there.  He didn't cry until we got to the ER!  After not a lot of success the doctor basically told us to clean it up as best we could.  It healed pretty quickly.  The next day it already looked like this but you can still see the scar every time he gets his hair cut.

Last school year, he twisted his ankle jumping off the swing-set in our backyard.  He limped for days.  It was sort of funny in a way because his teacher made the very accurate observation that the fact that his leg didn't work seemed to bother him more than any pain that he might have experienced and she was quite right!

Yet this is the same kid that will NOT stand for getting blood drawn or shots of any sort.  The last time we successfully drew blood when he was awake, he was in first grade and it took four adults to hold him down and one very skilled nurse to actually draw blood!  When he gets his sedation shots for the sedation dentistry (which is a lot faster than drawing blood out) it takes two men (the dentist and DH) and several nurses to hold him down.  The last time we took him to the sedation dentist, the look of horror on the other patient waiting in the waiting room when 4+ adults tackled one little boy was priceless!

He is also mostly impervious to cold.  Anyone who has ever set a bare foot on icy cold concrete knows how uncomfortable this can be.  Several years ago when I was still driving carpool I needed Alan to get in the car one January morning.  He was dawdling about putting on his shoes.  Finally in exasperation, I decided I'd just make him get in the car shoeless and maybe after walking across the concrete he'd be a little quicker the next day.  It didn't work.  He just strolled out to the car. 

He almost always goes outside barefoot.   Unfortunately it is hard to see in this last picture that he is barefoot (but he is) although it is easier to see that the ice in the rain gauge hadn't melted yet.  It was in the mid 30's this day and Alan is out perched on the swing-set in just a sweatshirt and pants. 

I am still convinced one day Child Protective Services will be knocking on our door.  I also know that if they try to get him down without our help, it won't happen and hopefully that should convince them that this is his choice not ours.

Alan is one tough cookie!

The "Little People" aren't so little!

Today the bus driver was about 25 minutes late.  Now for a typical kid, this would not be a huge deal.  They would hang out, maybe read or watch a video or play a game or just chat with Mom (OK, I can dream, right?)  But for Alan, we have to be waiting outside for the bus.  That is what we have always done so that is what we must always do.  In fairness to Alan, I started this because the kid refuses to wear his shoes in the house.  If we only had to get a jacket on and race out the door, we could stay in until the last minute.  But since we have to put on socks, shoes, jacket and bus harness and usually use the restroom before heading outside, this is a little much to do once the bus has been spotted.  And routines are very important to kids on the autism spectrum!

So this morning it was about 35 degrees F outside and Alan likes to sit on the garage floor.  I have tried to provide him with a chair, but he always sits on the floor.  This child is a bit hypo-sensitive to begin with so it wasn't like he was complaining about the cold but he was getting impatient.  Every 30 seconds or so I would get "Bus?  Huh?"  If it weren't so annoying, it would have been fairly funny.  So I finally called the transportation department and they check on the bus and it is less than 5 minutes away by the time I check.  Of course, when the bus driver comes she says she made a mistake and drove past our street (hey, it happens) but she called the transportation department to tell them she is coming back for Alan.  Now why did the transportation department act like they had no idea whatsoever why the bus might be late when they talked to me?  Is it really that hard to communicate?  I guess it is.

Normally I try to be very supportive of all the "Little People" in my sons' lives.  After all, when one of them does not do his or her job, it is usually fairly obvious.  I always try to give nice Christmas presents and end of the year gifts to all the many people that help out my boys on a regular basis.  I have had people ask me why I tip the babysitter so much.  Frankly, I want these people to like helping the boys because when they like their job, it makes my life so much easier.