Friday, August 30, 2013

Autism: Thera-putty In My Hands

Autism:  Thera-Putty In My Hands

Today was the third day back to school for my son with autism.  We've been off for a year due to horrible health issues that have led to him losing his sight. Getting back into the swing of things and being amongst people are all things we must relearn.  

My son has some of the typical sensory issues with clothes many kids with autism do.  Hates tags in his shirts or shorts.  Doesn't wear underwear anymore because a counselor suggested we simply get rid of them to stop him from rearranging the underwear because he was sensitive to it. 

He never was fussy as to what he wore even when he could see it.  He preferred sweat pants over jeans.  Didn't demand name brand expensive sneakers.  Probably would have worn the same sneakers till they fell apart and getting him to try on a new pair was a battle.  A smile would appear if you produced a cartoon character t-shirt such as "Ren and Stimpy" or "Dr. Seuss, Green Eggs and Ham".  Other than that, what company logo was on the shirt made no never-mind to him.  Being "Cool" or fitting in with the other kids in school with regard to fashion just didn't matter. Im not ashamed to say I shopped at Target or Kmart.  He always looked clean and neat and appropriate. 

So on Tuesday after we re-appeared on the school scene and I dropped him off, I made a trip to the local outlet stores.  Having been stuck in the house for over a year, I was thrilled to be flipping through the sale racks of clothing in the Aeropostale store.  I was even more thrilled to find that the shirts that originally marked $34.50 each had been knocked down to $7.99 and $5.99.  Woo-hoo.  I'm on a roll.  I gather up as many as I can find in the XXL size and head for the register.  "You know," the sales clerk comments, "that those are another 50% off the lowest price on the tag."  So that means I ended up paying $2.00 and $3.00 for these shirts that originally sold for $34.50.  And they are a teen friendly, accepted and desired brand.  I took my bounty to the register to check out and was also given a $10 off $50 purchase coupon so I ended up spending $40.00 for about 8 shirts and a $54.50 hoodie!  Yes, I am the bargain queen!  And he will be with the "in crowd".  

The next day he wears one of the new shirts.  Looks good and I am happy to see him make his way into school on the arm of his personal care aide/sighted guide.  At dismissal time, it was another story.  As he climbs into the car I notice a large smear all over the front of the shirt.  What is that "schmutz"?, I ask myself. 

1. schmutz

Used by Jewish mothers to identify that you've got some kind of crap on your face
Mommy: You've got some Schmutz on your face, Oy! 

His teacher remarks, "It's Thera-putty", sorry. 
I didn't pay much attention at that point and we headed home. But when I went to attack the dreaded "schmutz" on the shirt I started to do a slow boil. 

I just bought this shirt.  Yeah I only paid $3.00 for it but it's the principle of the thing.  I texted the teacher "how do you get this gunk out of clothing?"

"Let me ask the occupational therapist", she replied.  For those of you who don't know what Thera-putty is, allow me to explain.  It is a stringy sticky mess of stretchy stuff that OTs use for kids with ASD to give them some hand manipulation work.  Lord knows what it's supposed to do in the long run, other than make a mess. 

"First, she texts, get an ice cube, rub on spot, put some WD40 lubricant on spot, rub some more, get a butter knife and try to scrape off, then rub with rubbing alcohol, then swing a dead chicken over your head while hopping on one foot". (my sarcasm) Point being, good luck getting this mess off your clothes.  And if you can get this stuff off I will nominate you to take Mr. Clean's place on TV.  The shirt is ruined.  

Ok, enough crying over a spilled $3 shirt.  A new thought entered my mind.  OMG, did he actually walk around school all day looking like that?  Was he paraded through the hallways so the other kids, let alone the faculty, viewed the "schmutz" all over his shirt?  My mind conjures up conversations being held about the shirt.  "What's with that kid?"  "Isn't he in the autism class?"  "What the heck is all over his shirt?"  "Why do they walk him down the hall like that?"  "Why does he wear those sunglasses all day inside?" "He probably couldn't see that his shirt was messed up when he put it on this morning." "What type of parent would send a kid to school looking like that?"  
My heart starts to ache over the endless possibilities of making fun that he probably endured over the "schmutz shirt".  

But then a wave of realization sweeps over me.  Having autism and the sub standard social skills that can go with it, he probably was not aware of any such social faux pas.  He could not care less if there is gunk on his shirt.  He is not out to please anyone.  He is not out for their approval.  Sure if someone says "I like your shirt" it may or may not please him, but it is certainly not what drives his day.  "Judge not lest ye be judged" is his mantra, because he does not discriminate against the few friends he has, be they black or white, skinny or fat or fashionable or fashion geeks.  In this case, the autism shields him from hurt.  

But this turns my thoughts toward another question.  Is he better off knowing or not knowing?  Is his lack of understanding sparing him future emotional turmoil that we all experience? My mom used to say:

"where ignorance is bliss, tis folly to be wise".  Perhaps that is true. 

Friday, August 16, 2013

Autism: " I shall call him "Brutus"

Autism:  " I shall call him "Brutus"

There is a young man of about 25 who works at our local supermarket. I shall call him "Brutus".  Is his name really Brutus?  Of course not but it got you to read this blog.  Let's call him Sam.  

Sam works as a bagger and general helper at the supermarket.  He is a large young man.  Would have made a good linebacker in high school.  Sam is one of the hardest workers at the store.  Some of us understand Sam, and some do not.  Some stare and crunch up their faces with a questionable look.  Sam, of course, has autism. 

On any given day you will find Sam at the end of the checkout lane conversing with himself.  He has a vast knowledge of sports teams, knowing the dates they played, the score and the upcoming schedules of each team.  He has a habit of smacking his hands together with such force that the sound resonates through the supermarket.  I often wondered if this was a coping skill taught to him to use when he gets nervous or if it was a replacement given to him for a more offensive behavior.  Or maybe for him it is a sensory issue. 

One day as he was bagging I said "So Sam, how are you doing today?"  He immediately put down the item he was bagging and walked away.  Oh my god, I thought to myself, you scared him and he had to walk away to avoid reacting negatively to it.  Then the cashier told me " he won't touch pickles"..."if you buy a jar of pickles he won't bag it".  
I breathed an autism mom sigh of relief.  I was having an "I should have known better moment there for a bit".  

Sam will talk with anyone.  Usually you can hear him spotting folks in the market he knows.  He will call from two aisles over "Hello Mrs. Brandy Miller" "how are you today".  "Mrs Brandy Miller are you still working at the bank".  "Nice to see you Mrs. Brandy Miller" "ok" "talk to you soon".  The problem is, as I noticed today, sometimes the person to whom the greeting is directed, fails to respond.  I find this sad.  

Today as I entered the checkout line, Sam was in a different position from his usual "end of the checkout" bagger's spot.  Sam was a customer.  "Sam", I called.  "Are you doing your own shopping today?"
"Yes, I am, how are you today, thank you I'm doing very well" he replied.  Sam had a decent size cart of groceries.  

My curiosity was aroused.  

Today as he had his groceries rung up he conversed with the girl running the register. "Ashley, do you work tomorrow?"  "I work ten to two Ashely", "Do you work tomorrow Ashley?".  "Ashley I will see you tomorrow when I work ten to two." "Ashley, what hours do you work tomorrow?" 

I wondered if he was really doing actual shopping or a practice run. I perused the groceries he had selected.  Many juice boxes.  Jug of lemonade, ice tea and a bottle of vitamin water.  A link of some type of smoked sausage.  Two or three "lean cuisine" type dinners.  He bagged it himself in the "reusable" "keep it green" type of plastic shopping bags the store sells.    And two Sunday newspapers. The total $133.00.  

"I'm going to pay for my order in a minute Ashley". "Ashley I will pay for my order in a minute".  He fished his debit card from his wallet. "I'm gonna pay for my order Ashley".  His gaze changed to the computer screen that shows the total as the register records it. "Ashley how much was that newspaper?".  "It should be $1.75", he made note to the cashier. "The Carlisle paper is $2.00 and the Harrisburg paper is $1.75.?  The cashier was confused.  "There are TWO newspapers there." I pointed out to her.  Sam knew the prices of both and noticed that the register had only rung up the one on the bottom as she slid them over the scanner, since they were one on top of another.  "I'm gonna pay for my order now Ashley".  He slid his debit card through the machine, entered his code and announced "I'm gonna go put these in the car now Ashley", "I will see you when I work ten to two tomorrow, I will see you when you are working tomorrow Ashley". "Have a nice day Ashley, ok bye bye."

And he departed. 

I wanted to grab the lady behind me in line and shake her saying
"Did you see what Sam just did? He bought his own groceries and paid for them correctly.  He has a job, he earns his own money and he came in here unescorted and did his own shopping.  Do you understand what a great accomplishment that is?" But of course I could not.  It would take me hours to explain to the average person not aware of autism, how much work, bravery and fortitude it took for this young man to get to this point in his life.  My frozen foods would melt in the time it would take me to explain that a grocery store full of crying babies, "deli order # 23 ready" loudspeaker announcements and crowded aisles and a sea of colors can be a nightmare for our family members on the spectrum.  So, I smiled to myself for his achievement and paid for my own order.

As I exited the store, the idea crossed my mind that I would love to be able to speak with his parents.  I would love to ask them how they managed to teach him all they had that got him to this level of independence.  I scanned the parking lot hoping that perhaps he was still loading groceries into the car.  I swore to myself I would approach them and congratulate them and Sam for his job well done. 
But alas, he was gone.  

Every time I see Sam at work at the market I am reminded that I too have a son with autism.  I wonder can I teach him what he will need to know to at least reach this level of self sufficiency?  I suppose it will be one day at a time and one "jar of pickles" at a time.