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!