At 42 Degrees

At 42 Degrees

Thursday, April 3, 2014

Our Take On: Autism Awareness 2014


Autism Awareness 2014

Our Face of Autism


Eating a Gibson's donut,...of course!

Yesterday was World Wide Autism Awareness,...but we're aware of autism every single day,...we live with it,...and some days are easier than others. Like yesterday,...it wasn't an easy day,...to say that Speech Therapy,...ahem,...went badly would be putting it mildly,...because it wasn't the Apraxia causing all the difficulties with sitting in that little blue chair and focusing on a story - who knew - Hunting The Fluffy, Fluffy Bunny - could be so tormenting - tongue-in-cheek - of course - because whatever sensory/behavior/developmental issue that was going on with Isaac and his speech pathologist is not a joke,...it's real and it's autism. 

For our family we are a year into Isaac's official autism diagnoses,...although since he was two months old,...we kinda had a feeling something wasn't quite right,...eye-contact was tough,...and that strong will was a WOW,...and feeding soft, gushy, mushy baby food,...to Baby Isaac,...wasn't happening,...those tiny lips were cemented shut,...and during bath time when six month old babies happily splash and play,...Isaac was inert,...nothing moved him, not bubbles, not cool soap, not uber-cool bath toys,...nothing,...nada,...very business like attitude: 'Wash me if you must, but let's get this over with' ....and there was the communication and speech stuff,...Patty Cake Patty Cake wasn't happening,...but Isaac didn't stem: flap hands or spin, he didn't line up toys, and on his terms he was very affectionate,...so while we had an inkling something wasn't quite right,...we never considered Autism,...because that was something that other people's children had,...not ours. 

Then when Isaac was two years old, he was flagged for autism,...and after waiting on a waiting list,...he was tested, with the results: A-typical Autism,...PDD-NOS: Pervasive Developmental Delay - Not Otherwise Specified - or in other words: "We don't know what's going on with your child,...except it is not typical development."

OK,...what's a family to do? 
Early Intervention - check.
Special Needs Preschool - check.
Speech Therapy - check.
Behavioral Therapy - check.
Acceptance - double check,...because our son has autism,...that's the reality we live with,...and we celebrate the joys and try to learn from the struggles,...laughing and crying as needed. 

If anything Isaac has taught me in the past four years,...it is to:  live in the moment

Here are some moments out of our lives and what autism means to us: 

 Autism is puzzling


I am sure Isaac wonders why everyone else acts so strange, but he's polite about not mentioning it.
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Autism needs a helping hand


Thank you to everyone who has supported Isaac with such unconditional love
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Autism has different perspectives


I know I constantly tout the above, but it is so true: 
Isaac experiences the world in a different way,...and he makes sure you do too!

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Autism is isolating



Sugar coating doesn't help this issue: autism can be lonely.

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 Autism can be exhausting


Not for Isaac, of course, where he gets his super-sonic hyperactivity from I don't know,
but I wish I could borrow some,...because hyperactivity combined with sleep issues,
make for deep dark circles under parent's eyes,...and that's just another reality we live with. 
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Autism is fearless


It's nice that Isaac's isn't afraid of the dark,...but crowded streets,
or crowded stores, or let's get off the refrigerator dear - moments are part of our lives

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 Autism likes to wander,....


Security is constantly on a parent's mind: are the doors locked, is the room secure,
what is that noise: where is Isaac, where is Isaac, where is Isaac,....
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Autism is expensive




Doctor appointments, therapy sessions, therapy books,
therapy DVDs,....little ceramic tea sets,...ect,...it all adds up.

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Autism wants to connect, but doesn't know how.


This one is a toughie,...because the simplest interactions for us,
are complex and bewildering to him,...and yet our child still tries,
such courage will make you weep,...

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Autism goes hand in hand with sensory issues


Isaac will eat liver, but not ice cream,...that sums up the extent of his sensory challenges. 

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Autism is strong willed


Or at least the autism we live with is,...and our little guy is a master negotiator,
dogmatically sticking to his point whether it be, "Noooooo, or Yes, Yes, Yes, Yes, Yes, Yes, Yes!"

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Autism means lots of doctor appointments


For the past two years just about every new professional adult
 in Isaac's life have wanted him to sign: more,
and Isaac's been a pretty good sport about helping out all the forgetful Phd's out there 
who can't seem to remember their elementary sign language. 

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Autism isn't always fun


Lot of expectations are heaped upon a very little guy who only wants to live and let live.

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Autism changes your perspective of the world



Aside from a landscape designer who else would go to a world class zoo
 to examine the bamboo fences?
But we go with it and have discovered many unhidden wonders,
that Isaac notices, but we would walk by - unaware. 

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Autism is confident



Or at least Isaac is,...if there is a speech or behavior problem,
then it is your problem,...not his,...he's good.
Also, Isaac is not judgmental about other people's receptive speech difficulties,
because he knows exactly what his gibber-gabber means,...thank you very much,
and if you don't than he knows a good speech therapist he can happily recommend.

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Autism doesn't like group photos.





Not for prosperity,...not for Mama,...

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Autism is really, really, really cute



Or at least our version is,..and what few photos I get are but the tiniest scratch
in our little guys adorability,...he's a hoot!

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Autism is dramatic


Yes,...Isaac pretty much sucks up the oxygen in every room he enters,
and while our little guy is strong willed with a WOW,
he thankfully doesn't have over the top temper tantrums, 
(outside the realm of being a preschooler that is)

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Autism changes your world

From how you eat, sleep, shop, relax, socialize, 
or even how you take a selfie,
no sphere in daily life is untouched by autism.

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Autism is amazing



Hard sell here, I know,
but, leave off the social, speech and behavior difficulties,
and you'll be amazed by what you discover:
because if nothing else - autism strips down an individual to
the bare essentials:
our little guy - is PURE ISAAC - undiluted - rare and precious. 

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Autism is sooooo exciting


Another hard sell, I know, I know, but hear me out:
April is Autism awareness month.
World wide - hundreds of thousands - maybe even millions of people
  celebrate the uniqueness that is Autism.
And for us, we might as well celebrate,
because Autism is a life-long condition,
and the choice is:
 joy or despair.

In the last century - think Rain Man - 
Autism wasn't understood
or celebrated, 
but in 2014,...it is,
and that's gotta be positive. 

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Autism is OK.
















                   

Do we want our son to have Autism,...that would be a, "No." 
But, we have to live within the reality of our world,...
and the hard reality is that our little guy has Autism,...
and that's OK,...we love him,...as is.

For our family what is so heartwarming and what give us so much hope and courage is the reality that Isaac loves himself. To our little guy the world is thumbs up,...there is mud, there is dirt, there is water,...and little camo-boots and sensory-numbing gloves to wear outside,...he's good!


Until I post again,...may God bless and keep you!


















2 comments:

  1. I didn't choose to be autistic, but I wouldn't trade it for any amount of (insert precious resource here).

    ReplyDelete
  2. When Isaac is old enough to express his views on his condition,...I suspect his attitude will be as great as yours Anna. :)

    ReplyDelete

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