Autism: Driving Under the Influence

Today's daily trip to McDonalds turned out to be an adventure in autism.  About 3 minutes out of the  driveway and down the road, the meltdown started.  Try as I migh to divert my son's attention it persisted.  When we came to a stop light at a very busy intersection I decided to take a longer route to a McD's further away to give him time to de-escalate.  No such luck.  I found myself pulling into the parking lot of a local shopping mall to be in a safe spot, off the highway.  

By now his voice is loud and there is banging on the windows, the dashboard, crying and screaming.  I scan the parking lot visually for onlookers.  I fear the day when someone, perhaps an officer of the law intervenes.  I propose it might go something like this:

(no disrespect intended toward our officers or first responders, somewhat tongue in cheek). 

My son: no, no stop singing Joey
Me:  I'm not singing.  Let's go to McDs.

Tap, tap, tap.
I turn to my left to see a officer standing by the car. 

Officer:  roll down your window Mamm.
Me:  Officer, there really is no problem. 
Officer:  Looks like a problem to me, what's going on here. 
Me:  This is my son he's upset. 
Officer, yes that's obvious, Hey son, stop banging on the windows. 
Me:  He has autism, he doesn't mean any harm. 
Officer:  whoa, hey buddy stop hitting your Mom. 
"What is the problem for him?"  Why is he like that?'
Me:  Hard to explain.  I said something he didnt like and this is what we call a "meltdown". 
Officer:  I saw you pull in off the highway.  Are you in danger?
Me:  No in times like this we seek a safe place to wait out the meltdown. Obviuosly the road is not a safe place.  Better to wait it out here. 
My son:  'A Clue, A Clue"....."I have to call Steve, I have to call Steve'. 
Officer:  "What is he saying?"  Why is he asking about clues?  Is Steve his Dad? 
Me:  No , the "A clue reference is from Blue's Clues...the children's show".  "Steve was the host of the show". 
Officer:  Why is he saying that though?
Me:  It has meaning to him.  At this point in his life I do not know what that meaning is.  Saying those things is his way of dealing with this distress he's feeling.  It's tough though because I can't call Steve as you well know. 
Officer: "Well he can speak I would not have thought he had autism". 
Me:  Some autistic children are verbal and some are not.   Meaningful communication is difficult for them and for some impossible. 
Officer:  'Doesn't it hurt you when he punches you?" "Isn't there anything you can do about that?"
Me:  yes, of course it hurts.  I'm only human.  You try your best to either block the blows or get out of the way, again, no where to go when you are in a car, another reason we pull off the road. 
Officer: "Don't you have anyone to help you?"  "I thought they gave aides to families with disabled children."

Me:  No most of the time I have no one to help me and that is true for so many autism families.  Funding is not there to pay for the assistance we might need and how often we need it.  It's not a budgetary priority for our State or Nation.  No one thinks of the futures these children and their families will face as they grow older.  We would like to be independent and not have to ask for help now so that when he grows he too, can be independent. 

Officer: "He seems to be calming down now." "Are you alright buddy?"

My son:  "Yes, we have to go to McD's now, what's the holdup.  You need to stop talking now. Let's go!

Me: "That's another thing our kids struggle with is social skills and manners.  Please don't take an offense officer.  He really is a good kid.  Life is just much harder for him. 

Officer:  "Is there anything I can do?"

Me:"Yes, please tell your superiors about this experience you just had.  Please tell them to sponsor training sessions for officers like yourself and our first responders so they know what autism can look like.  Please tell them to always ask the parents first what is going on if possible.  All children with autism are different and the circumstances also will be different.  We as a community need to know that you are educated as best possible and wanting to help us as we so desperately need it at times.  

Officer:  "I will do that and I hope you have a better day". 

I breathe a sigh of relief as he walks away and back to his car.  Another meltdown survived.  I wonder will he tell his fellow officers so they have just a glimpse into our world?   

Today's trip did not turn out as above.  We simply sat it out in the parking lot until it was ok to continue on our trip.  I want to communicate however when you see that mom or grandmom or dad in their car trying to calm an upset child please do not judge or criticize or offer nasty suggestions on how to raise a child, simply think that perhaps that person is "Driving Under the Influence:  Of Autism". 

Autism: No Remote Needed

Autism:  No Remote Needed 

I've come to the conclusion today that if I were stranded on a desert island with my son with autism, I would never be bored.  I wouldn't have to think "gee, I wonder what's on TV?" because living with my son with autism is like having the TV on 24/7. 

He loves to script.  At this moment we are in the middle of the commercial for "The Muppet Movie".  You get both the play by play of the movie or video tape and the trailers and commercials that accompany each. 

Now, it's "Bear in the Big Blue House".  The "channels" change at will.  There seems to be no rhyme or reason to the changing of the channels, just whatever comes into his mind. 

The voices are amazingly close to those of the characters, including the british accent of one of our favorites, "Kipper the Dog".  Now the channel has changed to "Stuart Little".  

I guess I should be thankful he's not into professional wrestling or monster trucks because not only do you get the "script" of the show, you get the sound effects. Whether it be a "crash" a "bang" a "boing" or the most dreaded by me, a "scream" they are all delivered with perfect timing to fit the script.  

The hardest part is trying to teach him that the neighbors may not prefer to hear "The Rugrats" belted out at 10 at night.  I've taken to shutting the windows lately to prevent the sound from lofting across the street.  In the time it took me to just step outside to smoke a cigarette, we've changed from Lilo and Stitch, to the line in Rugrats Movie where Mrs. Pickles is in labor and the Dr says "alright Dee Dee, you can do it...push now".  "Now on video" . 

But sometimes he uses the script in realistic situations.  I remember one day we had to go to the radiologist for an xray of his wrist.  Killing time in the waiting room is not easy for a child with autism, and Joey began scripting from Spongebob.  Across the room a distinguished looking gray haired gentleman sat reading the New York Times.  Joey left his seat and climbed into the chair next to this man.  "Excuse me sir" he said.  "Oh no" I thought. I knew exactly what was coming. 

"I hope my horrible ugliness won't be a distraction to you".  He had delivered the "we're not ugly, we just stink" Spongebob and Patrick script to this man waiting for his own xray.  I rushed over to take him away from this gentleman.  I'm sure the man had no idea in you know where what this kid was talking about. He had played it out exactly as Spongebob did when he tapped the man in the seat beside him in the theatre on the shoulder. 

As I wrap up this blog we are now on "Scooby Doo and The Cyber Chase" commercial.  I know there are "behaviorist" explanations for why he does this.  He is capable of having a brief conversation.  It is not his preferred thing however.  He would prefer that you participate in the scripts and god help you if you miss a word or get your lines out of order.  His memory is incredible.  There must be a way to use this skill in a more productive and possible vocational manner. I struggle with these questions daily.  

But right now it is late and I need to find the "mute" button on this remote.  

Autism: Up, Up and Away

Autism:  Up, Up and Away 

Ahhh, a quiet Sunday morning in beautiful Central Pennsylvania.  Birds chirping, clear blue sky and a bit of chill in the air.  I awake at 7am and prepare to face the day until 8am by having too many cups of coffee. As I stand out on the porch, I scan the horizon for the dreaded "monster", that one thing that drives my dog completely out of his gourd.  I try to kill time before letting him out to do his business so that it is not too early  should he bark and disturb the neighbors, but  early enough to avoid "the monster".  The "monster" usually appears without warning for you or I, but he can hear it coming miles away before the human eye can detect it.  

Ok, all looks clear and I open the back door and he takes off quietly to take care of business.  I call him back in saying "time for coffee".  Ahhhh, a sigh of relief.  All is well and we can all wake up now as most folks do on a Sunday morning. 

My son with autism is still in his bed, covered up with his blanket pretending to be a ghost.  As with every day, I hope for a day free of meltdowns, no upsets or triggers, a somewhat "normal" day. 

Hate to disappoint you Mom, it isn't gonna happen. 

WOOOOF, WOOOF, WOOOF, WOOF, WOOOF, WOOOF, WOOOF, WOOOOF, WOOOF, WOOOF

(YOU GET THE PICTURE).  The dog is in full blown barking meltdown. 

THE MONSTER HAS ARRIVED. 

He is running around the house, sliding around on the hardwood floors, barking his hyperactive head off at 50,000 decibels. I love my dog, I will protect him from anything as I believe he would do for me.  Labor Day weekend, he injured his right hind leg chasing "the monster".  It has taken me 10 days of semi house confinement, massages and assisted walking to get him back in shape.  I see him shrugging off any residual pain to zoom around the house, looking out the windows, determined to get to the monster. 

NOOOOO, Kipper stop! I try to stop him from over exerting the leg as he runs and jumps to see out the windows.  (By now the suspense must be killing you, "what is the monster?".  It is the hot air balloon that flies over our house.  Beautiful to behold, my dog views them as the coming of the "aliens".  The owners actually landed the balloon in our back yard one year.  My son and husband loved it, but it drove the dog to froth at the mouth.  "What's Kipper barking at?".  My son calls from the bedroom trying to be heard over the barking. 

"No, Kipper"I demand again and that's where the explosion ensues. 

"No no, you're screaming at me saying "no".  My son now, is in full meltdown.  Banging himself in the head, crying and screaming. "no, no".  I try to tell him I'm not telling him "no", I'm telling the dog. Too late, we are off and running with a full blown meltdown.  I do not know what the aversion to the word "no" is.  For him I'm sure it is connected to some script in a video.  Perhaps it was the level of my voice when yelling at the dog.  Mom error.  I've not respected the  "autism rules of the house", certain words that he cannot tolerate.  My heart sinks.  Please God, let it be a short lived meltdown.  He moves to the kitchen where he proceeds to vent his anger and frustration by banging on my kitchen counter.  He and the dog are now in full concert with each other with regard to noise.  I try the "hand squeeze", nope ain't working.  He's gotta work it out for himself, he's gotta vent, and de-escalate himself.  

After about what seems like an eternity, but in reality only about 20 minutes, things calm down.  The dog doesn't understand why I'm giving him dirty looks for something he cannot control.  He is scared of "the monster" and he doesn't understand what it is and what it could do to him.  He lacks the language to explain his fear, frustration and sensory overload that "the monster" creates.  

Not unlike my son's situation with autism.  I understand them both. 

But on mornings like this I can't help but think "Mr. Monster balloon, would you stop and take me up, up and away?"

 

Autism: "My Butt is Sweaty!"

Autism:  "My Butt is Sweaty!"

This blog falls into the "you gotta laugh" category because living with autism, if you don't allow yourself a laugh now and then you will self destruct. 

So just another day on the autism road.  I pick Joey up from school and as our ritual would have it, we head for McDonald's to get his french fries and orange Hi-C.  Still in the 80's here in Pennsylvania so the kids are wearing shorts and t-shirts to school.  Not quite autumn yet.  As we are driving along he's in the front seat next to me. 

"My butt is sweaty", he proclaims.  I've heard this many times before.  I assume the nylon material of the shorts causes him to sweat.  The fact that the car seats are leather doesn't help either.  "Hang in there" I suggest, "We'll be home soon and you can change clothes". 

We arrive at McD's and I give the drive thru lady our order and proceed forward to pay, then head for the pick up window.  I'm more concerned with planning out how to hold a bag of fries, a large drink and an ice cream cone, than I am with what's going on next to me. 

"Here you go" the pick up window girl announces, and I reach out to take the ice cream cone from her hand, turning to give it to Joey as my eyes fall on his lap. 

In true autism style, with no concern for the social situation surrounding him, he has lowered his shorts to alleviate the "sweaty butt" syndrome.  My mouth hanging open, ice cream in hand I just want to shout "pull up your pants"!  Something holds me back.  I hand him the ice cream and whisper "pull up your pants".  On the slight chance that the girl at the drive thru didnt notice I decide not to bring any more attention to the situation.  

But then as usual, the thoughts start racing through my head. "Oh my god, what if she did see?"  "What must she think of him?"  "What is she in there telling the rest of the staff at the restaurant?"  We do have a group of young people and the manager at this McD's that know us and know of Joey and they probably would come to his defense but these workers all seemed new lately.  These are times when I want to have a big Autism Awareness Ribbon plastered onto the driver's side of my vehicle.  If I had the money truthfully I would have my vehicle painted in puzzle pieces from bumper to bumper to stop the stares, questions and remarks we autism parents know all too well. 

As we drive home to a point I marvel at the logical way he solved his problem.  If we did not live in a society with rules and norms that we follow the obvious solution to your butt being sweaty is to remove your clothes.  It just plain made sense to him.  

I remember a teacher in high school asking the class one day:

"why do you iron your clothes?"

"because they are wrinkled", every replied. 

"do they not fit because they are wrinkled?" he asks'

"are they dirty and smelly because they are wrinkled?"

"no"

Another rule of society that truthfully has no practical basis.  We do it because society tells us to, that's they way it is and that is what you must do to fit in.  For a person with autism this must be horribly confusing because it is not based in logic.  It requires that unspoken desire to gain the approval and acceptance of others that many folks on the spectrum just cannot grasp.  

Obviously we must have some rules in order to survive without total chaos but think how much more relaxed we would all be without so many of them.  

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. 

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.