Tuesday, September 30, 2014

Isaac Was Here! And Why That Matters....

The school psychologist winced.  I don't think I was supposed to see, but I did.  She was just about to interpret Isaac's expressive communication skills but she inadvertently paused.  She ever so slightly winced.  She could tell that Sam and I were involved parents.  She could tell we were intelligent.  She had read Isaac's history.  Both Sam and I had advanced degrees.  We had sought early intervention, maintained a forty hour ABA program, and participated in Occupational, Speech and Physical Therapies.  Our weeks had been devoted to achieving the maximum benefit of intervention since we understood that Isaac had difficulty learning and even more so once we found out that he had autism.  She knew that, and yet her job was to interpret these test results.

She explained that people with autism generally have scatter skills meaning that some skills may be rated above average for their age while others are greatly impaired.  She cushioned the blow but she could not stop it from falling.  The data was unsympathetic and unchanging.  At this evaluation when Isaac was five, his expressive language skills were rated at about a six month level.

The psychologist was correct.  Sam and I were intelligent.  We were educated.  We were involved.  We had already known....but her words attacked us like shrapnel.  Language is powerful.  Knowing a fact and hearing it uttered are two entirely different things.  We continued to listen to the report.  I heard something else too.  She did not communicate it verbally, but I heard it clearly.  Isaac was not to be a Temple Grandin.  Isaac was not responding rapidly or well to all the interventions we poured into him.  Isaac was not "recovering."  The results of the psychological bombardment do not represent omniscience but they must be respected for what they are.  Isaac's autism was indeed pervasive.  Isaac's autism was and would be life changing.  Isaac's autism was disabling.  At that moment, I believed Isaac's autism was defining.

Now Isaac is almost 16.  Isaac's language skills have improved but they are still limited.  Isaac has made so much progress but he will not "recover."  He is no Temple Grandin.  He does not have high functioning autism nor does he have aspergers.  His autism is pervasive.  It is life changing.  Isaac's autism is disabling.  I suppose Isaac's autism is defining but not in the way I was prepared for it to be.
I feared that Isaac's autism would stop his contribution to the world in which he was born.  I feared that this neurological difference would rob him of his inherent right to make a stamp upon the earth, to let history know that he was a part of it...that he was here.  I feared autism would take away his importance.  That was what we were being prepared for by well meaning professionals.  That is what I could not stand.

Isaac was here.  He was a part of the world and of the family of humans who inhabited it.  My son mattered.  That is the battle we as Isaac's parents have continued to champion.  During those early years, we championed the ideology of Isaac's personhood by bringing large pictures of Isaac to his IEP meetings where large parts of his future were planned.  We did it by having a party at the anniversary of his diagnosis.  We celebrated all that he had accomplished during the year by making posters that read "I Can.....Write My Name" or "I Can....Cut With Scissors."

Ideology is a first step but one must move into the tangible world to create a real difference in it.  We championed Isaac's personhood in real ways as we collected school supplies at those autism anniversary parties and then gave them to the child development program for children with special needs.  There were boxes of markers and crayons and construction paper and enough copy paper to write twelve volumes on child development.  Isaac's academic progress was maddeningly slow...but his fingerprint on the planet was growing exponentially.

Here's a secret.  Here's why every parent is driven to see that their child matter.  Our children are our legacy.  They are that piece of us that we give the world.  Our children are made from the very pieces of our soul.  If they don't matter to the world, we don't either.   That may seem selfish to put into words.  I have a talent for saying out loud what everyone else knows but won't say.  My push for Isaac's personhood had to meet success.  He had to matter.  I had to matter.

And so last year, we started I Can for Isaac...the blog and the facebook page.  The list of things Isaac could not accomplish was growing.  Think for a moment of all the skills a typical youth should acquire.  Isaac has almost none of those.  Still, I look at my son.  There is intelligence in his eyes.  There is will and life and stubbornness too.  He wants to matter.  I want to matter.  There had to be a way.  I tried to think of the ways in which Isaac is gifted.  Even those individuals with severe limitations are gifted.  I watched my son and his goofy grin.  He had accomplished the task of changing the clothes out of the washer and into the dryer.  "Great Job!" he congratulated himself.

That was it.  Isaac Can....Encourage.  Isaac can give the light of innocence and the radiance of encouragement and love to those who need an injection of joy.  One thing was certain. We all face the shrapnel of sharpened unfeeling facts every day.  There are many reasons we may not want to face another minute.  We all need an infusion of joy and hope and love and encouragement.  My son had that gift and had the ability to share it.  He had had the calling to share joy and encouragement since before he had even been born.  I remembered back to my own childhood.  I remembered stumbling across the names "Isaac" which means "Laughter" and "Asher" which means "Happy" and thinking of what a wonderful name that would someday be for a child of my own.  Isaac Asher was here and in spite of all his documented limitations....he was gifted.  He was gifted in sharing the lovely intangibles without which the world would cease to exist.

And so....I Can for Isaac...and the amazing opportunity to bless over 800 people everyday with love and hope and joy...with a healthy dose of Happy Laughter.  Isaac enjoys making the videos and seeing his picture.  He spies my camera and says, "Big Smile!"  He knows his talent.  He knows his purpose and like all those who are truly gifted in a certain area, he relishes the opportunity to do what he is very good at.  I Can for Isaac.  Isaac Can for us.  Isaac Can...start your morning with a good morning song.  Isaac Can....read you a silly story.  Isaac Can....giggle and grin.  Isaac Can...create a First Day holiday.  Isaac Can...inspire Pizza Friday.  Isaac Can...name a mascot Chris the Penguin and inspire you to adventure with that same penguin in honor of Isaac and to benefit your spirit.  Isaac Can...Inspire, Encourage, Hope, and Love.   Isaac Can...Help You to Do the Same.

Love You Friends!  Bye!

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