Come Hell or High Water (guest post)

Today, I have the honor of sharing this guest post written by another AAC mama.  Thank you, G. Rae Watson, for taking the time to share your story!

Come Hell or High Water...

  “Can I wear your sunglasses?” he asked, forearm shielding his eyes, the other cradling a Nerf football.
  “What happened to the Oakleys I bought you?”
  “I left 'em on the bus and they got stolen.  Probably the kid who gets off after me.”
  “It's unwise to accuse without proof, kiddo.  Maybe they fell under the seat.  Ask Rita to look.”  He made a bratty face and threw a high pass that tipped off my fingers and landed in the tall weeds.
  “As If, Mom.  Only girls and dweebs talk to the bus driver.”  Tickled and strangely relieved, I searched the weeds and thought, hormones are already kicking in - nothing slow about this kid.
  “Found it!” I hollered and threw a decent pass that he missed.  
Bratty face intact he said, “Lemme wear your sunglasses or switch me sides, please.”  He crossed the field and tossed the ball from hand to hand with the natural ease of a boy well on his way to being a man.  I gave him a proud hug that he briefly endured.
  “Okay,” he said and squirmed away.  “It's not like you're donating a kidney or anything.  Go long, Mom.”
  “He's gonna be alright,” I say as the ball spirals through the thin October sunshine.

Then I hit the snooze button, press my face into the pillow, and try to retain the sound of his voice.  Somehow I never do.  What triggers these dreams is often a mystery, but this one was easy to decipher.  My son has started to notice other boys skateboarding, playing ball, and just hanging out.  Watching him watch them has me wondering if he is dreaming similar dreams.  Lord, I hope not.  The slumbering euphoria is heavenly and the waking is hell. 

But it's not all bad news.

Three years ago we were fortunate to find a brilliant SLP who succeeded where others had failed.  She developed a workable communication system specific to my son's auditory and visual challenges.  Finger tap by finger tap, snippets of his personality have emerged through the use of high contrast PECS [Picture Exchange Communication Symbols] with rudimentary words and images.  Chief among them are: Bathroom, Eat, Bedtime (he pretends to not understand that one), More, and All Done.  These PECS and the SLP-provided training have maintained my parental livelihood and day-to-day sanity.  Before a communication path was cleared, parenting my non-signing, non-verbal child was similar to navigating a dense forest by moonlight.

The acronym SLP stands for Speech Language Pathologist and it is the only title I use.  In my plebeian opinion, calling what an SLP does “speech therapy” is akin to saying Pasteur and Fleming were fond of mold.  Ridiculous.  The blanket term doesn't begin to encompass the sensory and behavioral issues that accomplished SLPs confront and conquer every day.  For instance, my son refuses to consume food.  Balled up pieces of paper towel, used band-aids, and playground bark, yes, but no food.  Everything must be soft, bland, and smooth or he gags and vomits.  Prior to finding our SLP we were passed off to dietitians, allergists, occupational therapists and a certain pediatric neurologist who was convinced that his problems were not physiological but psychological.  He had the gall to strongly suggest that I, “try withholding food for 24hrs and see how he reacts.  He'll eat something eventually.”  I think I speak for the majority of mothers when I say that whether you're an award winning Ph.D. or our child's everyday G.P., if you don't have the answer then just say so.  We've got stuff to do.  

It took someone well-versed in the mechanics of swallowing, chewing, and even breathing to recognize that my son's sensory issues and physical issues were connected.  Of even greater importance, I learned that forcing him to eat could prove fatal.  If I had been desperate enough to take the neurologist's advice, my child could have choked to death.  Just thinking about it makes me want to choke the neurologist.  The swallow study and gastrointestinal consult our SLP requested concluded that he suffers from dysphagia and dyspepsia.  Dysphagia means he has difficulty and discomfort swallowing due to abnormal nerve and muscle control.  Dyspepsia means he isn't efficiently digesting what he also has difficulty swallowing.  Confused yet?  So was I.

Understanding the medical jargon reminded me of a running joke from the 1980 classic, Airplane!
  “A hospital?  What is it?”
  “It's a big building with patients, but that's not important right now.”
The line is only partially applicable, but it makes my point.  For once, it wasn't my responsibility to guess what was wrong with my son.  I did not have to take that guess to a doctor in the hope that they would listen.  Figuring out the mechanics of his mouth and tongue and neck and everything else that pertained was his SLP's responsibility.  It was her, “but that's not important right now,” punch line.  She explained (more than once, god bless her) that my primary job was to take instruction and consistently follow through.  I did and still do.

Today, without the head slapping tantrums and gallons of tears, my son can tell me when he needs to use the bathroom or wants to go to the park.  He can tell me that he is frustrated or angry.  He can even tell me that he loves me.  Picture by picture, tap by tap, he is coming into his own and we are finding our way.

A sensory feeding program is currently in the works. The program is based on the slow and careful introduction of savory and sweet flavors.  Once he is comfortably consuming these new flavors we will integrate texture.  A committed SLP helped my son defy the odds (and my well earned pessimism) once.  I am genuinely optimistic that she will do it again.

Autism isn't a diagnosis, it is a hostage situation. Communication is the only realistic hope of rescue.  Without it, my son would be lost to me, the surrounding world, and eventually to himself.  Come hell or high water, I am going to bring him back.  Well, me and his SLP.