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".

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!