Autism: Soup du jour

Autism:  Soup du jour

by Pamela Mari 

I've seen it written by many autism experts that if a child on the spectrum expresses a desire to learn, or a talent for a given activity, that should be fostered and encouraged.  I suppose tonite's activity falls under that umbrella. 

My son was watching "Barney" wherein the story of "Stone Soup" was acted out by the children.  If you are unfamiliar with Stone Soup, the plot is that a traveler teaches a group of farmers how to make soup from a stone.  The idea is that by sharing everyone benefits. 

It's 9pm on Tuesday nite.  Second day back to school after summer vacation.  A lot of getting back into the necessary morning routines and getting away from staying up late and getting up late. 

I leave the room for a moment and come back to find a chef's delight of vegetables on my stove.  Celery, potatoes, carrots, tomatoes.  Joey has garnered from the fridge all the ingredients he wants to use to make "stone soup".  

As mentioned, it's 9pm.  We have to get ready for the next day of school and it's hard enough to get my son with autism to separate from preferred activities.  I can see this "super soup" making us way too late in getting to bed.  Why do kids always wait until the middle of the night to request help with a project?  What's wrong with asking for help at 4pm?  

He seemed to be however, proud of himself for finding all the ingredients needed for the soup so I went along with it.  He enjoyed adding the veggies to the pot and even went back to the fridge to look for additional goodies to add to the soup.  Plus it seemed to me to be a more thought producing activity than sitting at the VCR scripting.  

"You can eat vegetable soup and it will get rid of your "suds", he told me.  (Spongebob Squarepants refers to a head cold as "the suds". 

I think we set the land speed record for making a pot of homemade soup.  It wasn't half bad either.  

It was one of those "pick your battles" moments.  I'm glad I didn't choose to quote the Seinfeld episode and say "no soup for you!"

Autism: I Forgot The Jelly Beans

Autism:  I Forgot the Jellybeans 

By Pamela Mari 

So how do you keep a 16 year old son who is blind and has autism occupied at home during the summer?  It's not easy and the boredom turns into frustration and down right crankiness. 

Yesterday when my son remarked that he wanted to make a chocolate cake with chocolate icing I replied "yes of course we can do that."  He noted though that it must have the following decorations:  jellybeans, gumdrops, gunk of chocolate,  (gunk of chocolate equals chunk of chocolate) M&Ms and sprinkles and gummy worms. 

At the supermarket I hit the lose candy isle to garner my supplies.  Twenty-seven cents worth of gummy worms.  A small bag of M&Ms.  A small bag of gum drops.  The gunk of chocolate I knew I had left over at home in a zip lock bag from Easter when we received a large hollow  Easter egg.  

Today is a very boring day so I offered to make the cake with him.  He wanted no parts of "cracking" the eggs for the cake mix.  

"We have to make sure it cools properly" he mentions.  (A script from a video, but appropriate.)  As evening approaches I tell him he needs to help me decorate the cake.  He helps in spreading the icing on to the best of his ability considering he can't see what he's doing.  

I offer up the decorations.  Gummy worms.  Gum drops.  Sprinkles.  M&Ms.  For "gunk" of chocolate I used a few left over Girl Scout Thin Mint cookies - just as good. 

"We need the jellybeans" he reminds me.  

INSERT IMPENDING DOOM MUSIC FROM JAWS WHERE SHARK IS HEADING FOR BOAT. 

I FORGOT THE JELLY BEANS!!!!!!

Now thus far this has been a pleasant, no meltdown activity and I'm determined to keep it so.  Mommy brain goes into overdrive.  "Where in the heck can I find some jellybeans?".  I dig frantically through the cupboard thinking I may have stashed a few for just this type of situation but alas, none to be found.  Ok.  Think.  Think.  Jelly beans equal Easter.  I sprint down to the basement where I stash the Easter baskets.  I dig to the bottom of the plastic easter grass and retrieve the golden treasure-a handful of jelly beans.  

Blood pressure back to normal, I ascend to the first level of the house and deliver the required final decoration.  He is pleased and finishes decorating the cake.  I'm the only one who is going to eat the cake anyway and I'm gonna scrape off all the excess sugar before I do so it doesn't matter to me how old the jelly beans are.  

Note to self:  Mom's memory is nothing compared to my son's.  Always write down what you need from the store. The Easter Bunny only comes once a year. 

AUTISM: "HE'S NOT NORMAL" YOU SAY?

Autism: "He's Not NORMAL you say"

by Pamela Mari

This week I drug myself to my doctor on dual purpose.  The first, to have my blood pressure checked as per Doctor's orders, and second to ask why I've had fever, aches, chills and general beat by a stick feeling for a few days. 

Don't get me wrong, I LOVE my Doctor.  He's highly intelligent.  He's calm and compassionate.  He listens intently to complaints about things not necessarily connected to the reason for the visit itself. 

I feel fortunate to have found him.  

And, he always asks about my son with autism.  This visit we started talking about why a person would complain of not being able to have a bodily function like, "I can't swallow, I can't hear" etc. when no medical evidence exits to support that complaint. 

Then, out it came "Well let's face it" he said, "HE'S NOT NORMAL". 

nor·mal 

adjective

1.

conforming to the standard or the common type; usual; not abnormal; regular; natural.

It didn't hit me till I got home and I'm not sure if I'm offended or not?  Of course, I suppose my son with Autism is "not normal".  You would think though that someone in the medical field would be a little more word choosey when speaking to an autism mom.  What ever happened to "he doesn't perceive the world the same as we do" or 

"his reasons for things may not be immediately apparent to us" or

"we may not be understanding his rationale for doing what he is doing".  

Yes I am painfully aware that rewinding ten seconds of a video tape over and over again:  is not normal. 

I'm aware that only having a 3 item diet: is not normal

I'm aware that having a dislike for certain common words: is not normal.

I'm aware that pulling your shorts down at the McD's drive thru

because your butt is sweaty: is not normal. 

I am painfully, agonizingly, cant sleep at night, gray hair and wrinkles, 30 lbs lighter - aware. 

Or - is it just a word?  Should I take no offense to it? But then I think would someone say, "well SGT Baker, we know that you cannot ride the city bus because your lost your lower limbs in battle and you're not NORMAL?

Or would the sports broadcasters say: We are so proud of the American wheelchairs athletes and what they've accomplished here today even though they're not NORMAL?  HELL NO they would not.  So we do we only use that term for folks with developmental disabilities? 

Since I've left the Dr's office the wound from the knife I felt stab me in the stomach has healed a bit.  Do I owe it to the other autie moms to point this out nicely to my Dr?  Perhaps I will. 

DEAR AUTISM-REGARDING YOUR ACTIONS OF TODAY

DEAR AUTISM: REGARDING YOUR ACTIONS OF TODAY 

by Pamela Mari 

Dear Autism:

Regarding your actions of today I am compelled to contact you.  This morning at home was nothing short of heart wrenching and I thought I was going to pass out for sure.  These meltdowns are starting to kill me.  Thank go we didn't have school this morning, however, we did have a very important eye doctor appointment in the afternoon. 

By 1pm I managed to get my son back on the semi-quiet track and myself in a state of semi-functionality to get dressed for the appointment.  These visits are always hard for my son.  You couldn't have crawled back into your hole and left us alone for today?  

We managed to make it to the Dr's on time and the wait was not long.  However, when the Dr appeared in the room in his typical friendly manner, your compadre "sensory issues" slinked into the room along with you and when the Dr's voice when UP AND DOWN, it set my son off on a mega-meltdown.  I'm tired of having to bring an actual "sign" with me to appointments that says:

AUTISM TRIGGERS - PLEASE DO NOT SAY THESE WORDS AND PLEASE DO NOT TALK IN KINDERGARTEN CIRCLE TIME SQUEAKY VOICE!  

Sometimes I just plain forget to warn people.  You could have reminded me!  It was too late.  My son was off in a full blown, cursing, crying meltdown.  Dr. and I left the room and left Dad to deal with the situation. 

I try to retain my composure to go to the appointment setting desk.  I can hear my son, still escalated in the  exam room.  

I'll have you know though, Autism, that by handing me lemons today, I went right on and made lemonade.  I never pass up an opportunity to explain to any living body standing still, about autism.  I explain that the sound of the dr's voice lilting up and down is like the sound of fingernails on a chalkboard to my son.  

Most folks listen and appear truly interested.  Perhaps they are just being polite but I don't really care.  They may retain one thought that I have communicated and pass it on to someone else in their life.  One more person educated.  

So in short, I wanted to let you know that I understand your presence is always there, looming around to create another upsetting situation.  But be warned I will not allow you to masquerade under the label of "bad kid" or "terrible parent".  I will tell all that I meet of you. Don't let it go to your head - I don't paint a pretty picture of you. 

AUTISM: I HEARD SOMEONE CRYING TONITE

I heard someone crying tonite

A single autism parent

Tired

Alone

Worn out

Wanting out

Without solutions

For a better life for themselves

And their children

A desperate cry for help

From one who appears to have

The strength of many

But it is a silent scream

Some days some years

The pain outweighs the good

The rainbow. The silver lining

Cannot be summoned here

And the will to persevere dwindles

A friend extends a hand

Just one passerby views this life

And lingers for a moment

With only words to offer

The silent scream becomes pure silence

In word and action

And the cleansing tears flow

The heart will regain strength with the new day

Fueled by love

There is no stronger power

Share it widely, please

Autism: Who's Guto?"

Autism:  "Who's Guto?"

by Pamela Rundall-Mari

It was one of those autie mom days.  You know what I mean.  The I can't take one more meltdown, one more script, one more request to repeat a script "say it, say it".  The kind of day where you know if you lay your head down on the bed, you are so beyond comprehension tired, that you would be out like a light. And you know you can't do that.  You are on day and night shift....alone. 

My son with autism loves to listen to the "How to Draw" tutorials of Disney characters on YouTube.  "I want "How to Draw Stitch" by BTSPRO."  BTSPRO is an artist who I believe may have or still works for Disney.  He takes you step by step through drawing the characters and we actually have replicated some of them following his directions. 

"I want How to Draw Pluto", my son requests.  I validate his request by repeating:

"OK...HOW TO DRAW GUTO".   "GUTO"?  WHO THE HECK IS "GUTO".  I'm so tired it strikes me funnier than all get out and I actually snort laughing.  I can't stop laughing at this stupid mistake I made.  I'm trying to restrain myself and my son says "It's not Guto, It's Pluto".  But, at the same time I catch him chuckling too. 

He's laughing at the fact that I am laughing uncontrollably.  I push my limits a bit and ask "Are you sure you don't want GUTO?".  I'm so tired and the release of laughing was a pleasant experience. And the fact that we SHARED a laugh, a bit of common understanding, a moment of theory of mind, shall we say,was fabulous.  I understand that you thought it was funny and I think it is funny too.  This is a type of moment I wish for more often 

Today, again with the Ipod asking for "How to Draw" videos.  First it was "Chip" the Chipmunk.  Then "I want How to Draw Tale"??  He catches himself every so quickly.  "Not Tale, I mean Dale".  

"Did you say Tale?"  I ask.  "Are you sure you don't want Guto?"  I start to chuckle again.  He returns the laugh.  I'm gonna ride this one as long as I can.  And poor Guto, whoever you are, it's all at your expense and I'm loving it!

Autism: For Once Everything Turned Out Perfect

AUTISM:  FOR ONCE EVERYTHING TURNED OUT PERFECT
by Pamela Mari

On bad days with autism it's hard to remember that there are in fact, good days.  The other day was no exception but the outcome made it all worth it.

My son had been bugging me to play a computer game with him.  Bear in mind that he can no longer see due to a horrible health condition.  So I am his eyes.  The game was a a Jump Start brand game and a relatively old version at that.  We have a desktop computer in our sun room that runs an old version of Windows just to accommodate his "old" pc games.

We start the game.  You have to pick a pet and then play other "mini games" to win prizes for the pet.  Then you get to fly the pet to a "new home" via hot air balloon. There are about 8 pets total.

A few years ago I went to a Best Buy store looking for some item my son had requested and I told the salesman we had some of the series but my son "had to have them all".  "Oh, he's a completist" he replied.

Completist:  noun
collector who attempts to collect an example of every item in a particular field.

While this is true of my son and mom can attest to trying to provide all the items in each particular collection, that's another blog.

I would say he's also:

A Finisher:
1. To arrive at or attain the end of: finish a race.

You can't just stop in the middle of the game.  YOU MUST FINISH.

With that in mind we muddle through the game.  We've got a few "pets" under our belt when all of a sudden, the game crashes.

I felt my heart and all my other internal organs, sink to my feet.  I knew what was coming.  The meltdown ensued.  The offering of "we can start again" did nothing.  I suggested, wondering if it was the program itself, or the old computer that was causing the problem, that we try again tomorrow in the bedroom on that desktop computer.  As the words exited my mouth I thought "oh God, what if the program won't run on that one?"  It runs a newer version of Windows.  But tomorrow is another day.

So, as it will, tomorrow came.  Predictably so my son headed for the sun room to take another shot at the "unfinished game".  I quickly grabbed the CD and ran to the bedroom.  I inserted the disc and low and behold it loaded. "Let's try it in your room today" I announced. And so we did.

I'm so desperate for this darn game to work and to be able to "finish" that I start clocking how long it takes for each "pet" to finish his appointed duties before we move on to the next one.  My heart is in my mouth that we can finish the game before another "crash" happens. 

Ok so you have to make the balloon animals, and line up the animals in the correct size order and give the pet his treat and then you can fly away in the hot air balloon.  But being the "completist" that he is, my son has to use each option, that while available, is not necessarily needed to move on to the next animal.  Meaning, he has to stop and listen to "the itsy bitsy spider" and "barn house rock" before we can fly away in the balloon.

And I as the "mouse operator" on this mission am

"WHITE KNUCKLING" hwīt'nŭk'əl, wīt'-) also white-knuck·led (-əld)
adj. Slang
Characterized by tense nervousness or apprehension:

my way through this game.

We finally train and adopt out the last "pet" and the words that I seldom hear make the whole nerve wracking, nail biting experience seem like a walk in the park.

As he leaves the computer and walks to the kitchen my son says "For once everything turned out perfect!".
"Thanks for playing with me!"

Was it worth it?  Oh yeah and I could not feel more "complete".