Sunday, September 28, 2014

Autism: I Just Called to Say "I'm Tired"

Autism:  I Just Called to Say "I'm Tired"

by Pam Mari 

Dear Autism: 

I got your voicemail yesterday.  I suppose I was busy when you called and to be honest I usually don't respond to voice mails because they are usually from bill collectors.  

But your question deserves an answer.  You inquired " I just called to ask how you and your son are doing, being that I'm in your life I figure I'm entitled to know". 

Yes I suppose you are right.  Let me enlighten you.  


And since you seem to operate on a 24/7/365 schedule you must never tire.  It appears that you never tire of causing pain and disruption.  
You never tire of bringing tears to my son's and my eyes.  You never tire of stressing out marriages.  You never tire of stealing otherwise enjoyable moments from my son's life.  You never tire of tying my stomach in a knot first thing in the morning or the last thing at night. 

Perhaps your perseverance, stubbornness and never say die attitude is the only thing I could applaud about you.  But alas, for me, I'm freaking tired. 

Allow me to elaborate. 

As I stated before, I'm tired. 
I'm tired of the crying. 
I'm tired of the meltdowns. 
I'm tired of the sensory issues that make simple tasks like bathing, haircuts and clothing a major battle. 
I'm tired of the rigidity of thought you cause that makes it so I cannot utter certain words or phrases to my son because for him, they are only to be used in the context he heard them in - a video. 
I'm tired of hearing ten seconds of a video over and over and over and over again. 
I'm tired of trying so hard to teach simple social skills like why it is wrong to scream at ten at night. 
I'm tired of working so hard to get my son to take one little bite of a different food.  His diet stinks you see and I worry about his health. 
I'm tired of not having anyone over to visit our house. 
I'm tired of the looks and stares of others. 
I'm tired of fighting for a local classroom placement for my son since our local school doesn't provide an autism class. 
I'm tired of seeing friends on Facebook and other social media talking about their great vacation or dinner out or visit to the museum.  
I'm tired of scouring ebay for toys that ceased to be produced ten years ago.  (although I do consider it a victory when I find one).  
I'm tired of trying to explain to my son that they just don't make them anymore and watching him meltdown because he doesn't understand that concept. 
I'm tired of being hit. 
I'm tired of other family members who chose to walk out on us telling me "it's my fault".  I don't consider you to be "my fault".  You are just there, like a tossed away beer bottle on my lawn. 

I'm tired of looking like crap.  
I'm tired of not giving a darn that I look like crap.  I used to care. 
I'm tired of not laughing.  Of course, you would not understand that one.  Or maybe you secretly laugh at us.

I'm tired of eating or should I say "inhaling" my food.  There is always a behavior or a meltdown that needs attended to at that time. 

I'm 56 years old.  I'm tired.  I'm not dead yet but wonder how long I can carry on.  My son is 16. I'm tired of worrying about how he will survive when I'm gone.  

I'm tired of coming up with creative ways to thwart a crying situation or meltdown.  I'd much prefer to come up with creative party ideas or themes for college essays for my son. 

I'm tired of wiping butts.  However I will say that in this regard I consider myself lucky as so many other autism moms are still carrying diaper bags.  

I assume by now you get the picture.  I'm tired.  I'm exhausted.  Mentally.  Physically.  Emotionally.  Creatively.  

I'm tired in every aspect, regard and measure of my life.


But don't despair.  I won't quit.  I won't give up.  I won't change my number.  Please don't feel obligated to call again.  I  will simply push the "ignore" button.  And I will carry on with the mindset that the things that appears to be killing me, may be the thing that will save me.

Wednesday, August 27, 2014

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!"

Saturday, July 19, 2014

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.  


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. 

Saturday, June 7, 2014


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". 
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. 

Thursday, May 29, 2014


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:


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. 

Sunday, April 6, 2014


I heard someone crying tonite

A single autism parent
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

Friday, April 4, 2014

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!

Friday, March 14, 2014

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".

Saturday, February 22, 2014

Autism: "Doobee Or Not Doobee?" - And Never The Twain Shall Meet

Autism:  "Doobee Or Not Doobee?" - And Never The Twain Shall Meet

My sister in law called me the other day with a question.  As the mom of two neurotypical teenage boys, she faces her own unique set of challenges, totally dissimilar to mine, as I am an autism mom.

The situation was a friend of her eldest son had advertised himself as "smoking pot".  Whether or not this was actually true remains to be proved, however she was perplexed as to what to instruct her son to do regarding continuing to "hang out" with this other teenager.

She posed the question to me asking what would I do if I found that one of my son's friends was using drugs.  Now, remember my son is 16 also but has autism.

So, I admit when she first posed the question my mouth was open but nothing came out.  I didn't have an answer for her.  I knew she wasn't dwelling on the fact that Joey has autism and the likelihood of one of his friends smoking pot, though not  impossible, is highly unlikely.  

While this is not necessarily a situation in a young life worth celebrating, I was left with that tugging feeling, knowing that this is just one more problem that I as an autism mom, will probably NOT encounter.  

We ended the text conversation and I was left staring at the mental image of that list that  some autism moms know all too well.  The "things my kid will probably never do" list. 

Things like:

Worrying about getting driver's license
Not having enough money to buy his own car
Being upset about finding a date for the prom
Not making the track, football or basketball team 
Deciding what college to apply to 
Having a girlfriend and getting dumped by that girlfriend

I thought of the two young men, my son and my nephew.  I thought of the dichotomy between a neurotypical teenager and one with autism.  Both approximately the same age but living in two different worlds.  

Is my son,  in a way, better off that he will not have to deal  with some of these normal passages into adulthood?  Is his innocence to his betterment?  Is worrying about missing a "Finding Nemo " VHS tape less stressful than worrying about "finding a job"?

Or is it me?  My Mom used to say " you can't miss what you never had".  Perhaps my son will not feel the loss of some of these average teenage experiences.   But I will feel the loss.  I must stop imposing my perception of what his life should be compared to other teens.   I must let him live his own life on his own terms.   The two young adults are not the same and never will be...and never the twain shall meet.

Oh, East is 
East, and West is West, and never the twain shall meet,
Till Earth and Sky stand presently at God's great Judgment Seat;
But there is neither East nor West, Border, nor Breed, nor Birth,
When two strong men stand face to face,
tho' they come from the ends of the earth!
by: Rudyard Kipling

Sunday, February 9, 2014

Autism: Play Nice

Autism:  Play Nice!

When teaching our children, neuro typical or children with autism, what are the things we stress when it comes to dealing with others?


Simple everyday rules and guidelines such as these are the mindset we try to impart to our children.  Children on the autism spectrum struggle with these concepts more than other children. The interpretation of these words may be obvious to us but not as easy to decipher if you are a child on the spectrum. We as adults are charged with explaining the meaning of these phrases to them and  giving examples of how to implement them in their daily lives. 

I believe it's called: SOCIAL SKILLS.

So why then why do I see grown adults, most of them not on the spectrum totally ignoring these rules?  And to make it worse, these are folks in the autism community.  Lately I've seen family members of persons on the spectrum, reduced to tears over the rude, hurtful, bullying comments made by others.  

We are all on the same team so where is the concept of "play fair" amongst us?  

As we all communicate in the hopes of providing each other knowledge and support, can we not remember that "we all have our own way of doing things?"  If you do not agree with a parent with regard to a treatment, medicine or behavioral approach, by all means say so, but be constructive, not destructive. 

Every parent has their own vision for their child.  You do not live in their house, you do not know their child as they do. Of course I've seen parents talk about treatments or procedures that they use in the hopes of helping their child that I, myself, would never dream of trying.  But that's "MY" opinion.  And you know what they say about "opinions".  

So as you hit the "playground" of life tomorrow be kind to your friends.  It's about "winning" for each family member not "winning" the argument.  It's about giving the "high five", not pointing the finger.  It's not "popular" vs. "unpopular" team and it's certainly not

Friday, January 31, 2014

Autism: My Pom-Poms Are Flat

Autism:  My Pom-Poms Are Flat
by Pamela Mari 

"We are autie mommies"
"Mighty, mighty mommies"
"Everywhere we go 
people wanna know"
"Who we are?"
"So we tell them" Hooray!

I was not a cheerleader in high school.  I was in drama, theatre and served on the newspaper staff.  I vaguely remember trying out for cheerleading.  I think one of the tests was to run up and down the bleachers without breaking your neck.  After which, I departed the gym, knowing this group was not for me.  

In a conversation with another autism mom earlier this month we discussed the ongoing "cheerleading" we do for our kids. "Yeah, great job". "You can do it".  " Don't give up, we will get there" "One more try honey".  "Don't let the angry feelings get you."  "I am so proud of you."  "I will never give up on you."  

The list of encouragements is endless. 

It must have been a relatively bad day with autism at our house.  I felt as if I had climbed to the top of the "cheerleaders" pyramid, done the flip and landed flat on my butt.  Where was that person that was supposed to catch ME?  I remember saying to my friend "that's pom poms are flat".  There's no playbook, no coach, and no spare players on the bench.  At our house it's a one man team, and a one man cheering section.  There's no time outs, we are always in overtime.  I am the quarterback, the defense and the offense.  I'm ready to throw in the proverbial "terrible towel".  I have met the enemy and it has won. 

My friend in her wisdom let me rant. "I've tried and I've tried", I told her, I've repeated this a million times and he still doesn't get it!  

A seasoned veteran of the game she simply replied "Yes, but the million and tenth time, he will!

So here I go, with the Hail Mary pass into the fray chanting: 
"We are autie mommies, mighty mighty mommies!

Monday, January 20, 2014

Autism: The Mother of Invention

Autism:  The Mother of Invention 
by Pamela Mari

I guess I shouldn't complain.  My son with autism doesn't ask for $200 sneakers.  He doesn't ask for $500 gaming systems.  I don't have to listen to him lamenting about the fact that he doesn't have the latest cell phone or computer game.  His requests are relatively simple with one exception.  He usually asks for things that "don't exist".  

By this I mean he asks for things that he sees in videos.  He obsesses about creations that no toy maker in the world gives a darn about and certainly isn't going to put into production.  

In so wanting to give him what he desires I have become a creator of the un-purchasable.  My Mom used to tell me 
"necessity is the mother of invention".  

proverb has been defined as– when the need for something becomes imperative, you are forced to find ways of getting or achieving it.[3

Very true at our house.  

One example. Joey likes to watch Winnie The Pooh.  There is an episode in which Tigger pretends to be "The Masked   Defender" (or Offender, as I think Joey sometimes calls him).  Tigger takes on the persona of Zorro and does battle with a runaway bale of hay sporting all types of junk that it acquires as it runs through the Hundred Acre Wood. 

The intro to the cartoon mentions Piglet's new "stinky sidekick", which of course is the yucky bale of hay monster.  Joey hears this as "stinky inside kick".  So for years now he's been bugging me to build a "stinky inside kick".  I've been putting him off for years.  But this year I felt he'd waited long enough.  I promised him we would make it at Halloween.  We went to the local pumpkin and flower mart and bought a small bale of hay.  But shortly thereafter he developed a case of conjunctivitis, which in our house are deadly words so I thought perhaps it better to not use an allergy laden mess of hay.  I chose a cardboard box.  This stinky inside kick had arms,  supposed to be a garden tool and a plunger.  I used a potatoe masher and a turkey baster.  It needed a belt and sneakers.  Belt made out of yarn and sneakers fashioned out of cardboard.  But the real catch was it was supposed to drive wildly on a wagon.  We have no wagon.  So we used an office chair on wheels.   The googly 3-D eyes were made of the bottoms of take out soda cups.  Joey dressed himself as "The Masked Offender" by using a bathrobe, a belt, an old cowboy hat and winter gloves.  He was ready to defeat the "stinky inside kick".  

A more recent "invention" challenge was presented to me this week.  In the movie "Lilo and Stitch: The Movie", Lilo and Stitch the alien, reanimate evil experiments like himself, by using a machine that utters:  "Container ready", "Experiment 625 activated".  The machine dispenses a small ball which they then drop in the bathtub and an evil experiment creature is created. I knew my son would not settle for my voice saying the computerized sounding voice, so I took my Iphone and recorded the segments from the movie.  Now, to create a machine.  Humm, I went to Radio Shack and got a small bluetooth speaker shaped like a can.  I could then transmit the recorded lines to the speaker.  But now, what to use for the experiment "pods".  I got sour balls, the round candies, in the loose candy aisle at the supermarket.  I only grabbed a handful because I don't particularly like "sour balls" and didn't want to be stuck with a lot of them after the activity.  WRONG!!!  Half way through the acting out of this scene I ran out of sour balls, I had to dig them out of the water and try to salvage them to be re-inserted in the water bath.  Note to self:  Next time buy enough "experiment pods".  Nonetheless, he was pleased to hear the sound coming out of the speaker and it was successful. 

And last but not least how could we forget the day Spongebob, Mr. Krabs, Squidward and Patrick venture onto  "dry land" in a challenge issued by their friend "Sandy Cheeks" the Squirrel.  This video scene shows the aforementioned characters taking on the form of puppets, on sticks as they blast out of the sea and onto dry land.  This meant I had to create a Spongebob, Patrick Starfish, Squidward, Mr. Krabs and Sandy all in "puppet on a stick" format.  Spongebob, Patrick and Squidward were all carved out of household cleaning sponges.  Mr. Krabs was purchased in the seafood aisle of the supermarket, a real steamed crab.  And dear Sandy Cheeks was last.  She was shown as a real "hand puppet" in the video.  I called the toy store in our town known for horribly expensive but rare and unusual toys.  "Do you have a squirrel hand puppet?"  "Ok, I'll be right over".  After scoring Sandy at the toy store I brought her home to try to construct a "diving helmet" which she wears in Spongebob because she obviously is not a water creature, so she needs air.  I cut the bottom off a spring water bottle and it fit her head just right.  So now my son was able to play out all the characters just as they are shown in the video.  

I'm so happy he's not into Spiderman!

Sunday, January 12, 2014

Autism: Breaking the Sound Barrier

Autism:  Breaking the Sound Barrier

I don't know why I always think I am the only one experiencing a certain behavior in my life with my son with autism.  Before he was diagnosed, I thought it so peculiar and unique that he liked to rewind video tapes.  I wondered why he did it until I stumbled upon a list of 
"stereotypical" behaviors for autistic children, rewinding video tapes being one of them.  

Last week on Facebook I read of how many other children will have multiple media sources, the TV, the DVD, the CD player, the computer, all running at the same time, which my son does also.  Ok, guess I'm not alone in that one either. 

But today I touch on the subject of "noise". Again, I cannot be alone in this situation with regard to autism and our kids.  I think about the TV commercial where the homemaker answers the door to find a service man outside.  In the background you see two children jumping on the couch, beating each other with "pool noodles" making a good deal of noise.  We can assume this commercial portrays "regular" kids so sometimes I wonder 
"am I just too old for this?"  " do kids actually make this much noise?", "what about a family where they have numerous children of varying ages?" does it get this noisy at their homes?  

At our house we have "good" noise and "bad" noise.  "Good" noise is the type I am experiencing as I write this.  My son is in a good mood.  He's watching a video, and a dvd at the same time.  We have Charlie Brown on the TV and Chicken Little - on the DVD.  He's singing "Don't Go Breaking My Heart".  This "good" noise is accompanied by him rocking the bar stool so that the feet slam against the ground, bam, bam, bam.  As he is doing this he's also vocalizing some new verbal "stim" I guess it would be called "ooh, ooh, em, em, em".   It's driving me nuts.  I know he can't help it, but I cannot tune it out.  As he's doing all this, he's smacking himself on the forehead.  Another new one.  And when time allows, poking his index finger on the counter, tap, tap, tap, tap. There is a ritualistic series to these movements but I can't honestly say I've tracked it yet.  I have to admit though, many times this "good" noise, Spongebob yelling, Scooby Doo and Shaggy screaming all together, is too much for me.  I can honestly say I know what "sensory overload" is.  And I also think, that perhaps I am more sensitive to it than my son, or maybe it's a personalized thing, what bugs me does not bug him and vice versa. 

Bad Noise:  ca·coph·o·ny noun \ka-ˈkä-fə-nē, -ˈkȯ- also -ˈka-\
: unpleasant loud sounds

Best word to describe "bad noise" at our house.  I'm sure I don't have to explain "bad noise" to other autism parents.  The noise that goes with a meltdown, or at very least, an angry moment, a refusal or making no bones about the fact that my son is displeased with something.  LOUD NOISE. 

To the outside world though, all these noises must seem extreme.  I've decided to "classify" them based on the possible thoughts of those who might hear them and not know the full situation inside our house.


1.  Cartoon noise, Spongebob yelling, Patrick crying, or Squidward screaming "I gotta get out of here". 
As a female TV reporter who came to our house last week said "When we walked on the porch, we figured there was a special needs person living here".  "Oh, how intuitive of you!"

2.  Banging on the counter:  "hey I guess the neighbors must be installing new drywall". 

3.  Jumping on the bed:  "they must feed that kid too much sugar"


1.  "But I Don't Wanna Go to School"....because this is a fully functional sentence most people assume he is just a spoiled brat and the "if that were my kid" thoughts and comments flow.

2.  A sensory meltdown caused by a loud unexpected sound  from either the computer or vhs :  the stray cats run from the porch

3.  A "who knows what caused it" meltdown including hitting and throwing objects:  "the herd of deer crossing the property have jumped the fence to get to the other side of the road."

4.  the combo meltdown:  Mom committed some cardinal sin by saying the wrong word, or the wrong ending to a script, or god forbid the DVD player doesn't work or the gameboy gets stuck, topped off with puberty and a ton of other emotional issues:  the real estate agent contracted to sell the $950,000.00 house built about 100 yards from us is realizing she will probably never sell the joint.  

But there was a time when it was quiet here.  About a year ago my son was very ill.  It was very quiet here.  An eery, scary, doom filled quiet.  Without the physical energy or the mental desire to participate, there can be no noise.  I longed for him to have the drive to engage in any of those "noisy" activities he used to.  I swore at that point, that when he recovered, I would not complain about the "noise"....the "autism noise" as long as he was strong enough to produce it.  

So, it's 10pm here and we have both Lilo and Stitch and Spongebob and Patrick on.  Yes, it's getting on my nerves but.....I'll take it!