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".

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

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?

PLAY NICE!

SHARE!

DONT SAY MEAN THINGS TO OTHERS!

IT'S NOT ABOUT WINNING!

NO NAME CALLING!

NO BULLYING!

EVERYONE HAS THEIR OWN WAY OF DOING THINGS!

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

DODGEBALL!                                                                            

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 it...my 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!

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".  

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!