April Word of the Month - Tiny Pieces

"Courage is tiny pieces of fear all glued together."

~ Terri Guillemets

Courage comes in many forms.  Today I am going to tell you about a few.

My oldest daughter is one of the bravest people I have the privilege to know. As with most young parents, she knew in her heart of hearts all was not right with her toddler son.  Until the formal confirmation of her greatest fears, there was, at least, hope - hope that whatever she perceived was wrong was all in her imagination.  Reality can be devastating.  But Courage is surviving the diagnosis of Autism.  Courage is facing the facts and getting up the next morning, drying the tears, and beginning the long journey of the parent of a special needs child.  Courage is letting go of all the normal hopes and dreams a parent has for that child, replacing them with much different expectations..  Courage is being relentless in the pursuit of information, making hard decisions and sacrifices for that child that will resonate down the years, into the future. Courage is never giving up on that child, recognizing the potential that lies silent within him.  Courage is fighting for him, educating others, seeking the best possible outcomes, never settling for the path of least resistance.  Courage is having therapists in your home for hours, five days a week for three years. Courage comes in celebrating small victories.

This is the picture of courage, too.  This little boy was once lost - lost in his own world, practically non-verbal.  Screaming meltdowns happened constantly.  He was in a battle to be heard, to emerge.  For his mother, it was the wish to hear him say, "Mom" and "I love you."  Courage is enduring three years of endless ABA therapy with strangers in his home, strangers that soon become like family.  Courage is going to school and coming home to work with therapists 6 more hours of the day.  Courage is piecing the puzzle of language together slowly, methodically.  Courage is overcoming panic attacks that occur when going to new places, around loud crowds.  Courage is recognizing you are different but not giving up.

This is what courage looks like three years later.

But there's more that I want to show you.  Below are the faces of true courage.  Courage is being spit at, kicked, slapped, and punched and showing up the next day to do it all over again. Courage is sitting for hours in the floor holding a screaming child in your arms. Courage is loving that child unconditionally.  Courage is repeating the same word or picture or just simply making a child sit in a chair over and over and over until the behavior or word or emotion is learned.  Courage is supporting a desperate mother and father when they think all hope is lost.  Courage is never giving up.  Courage is saving children, one child at a time, every day for three straight years.  Courage is doing this despite the growing numbers of Autistic children, the low pay,  Sometimes, courage pays off in little ways.  Sometimes, courage pays off enormously.


These are a few of the therapists that have helped Walker, my grandson:

These are our heroes.  Last week there was a grand celebration party at my oldest daughter's home.  You see, Walker's three years of therapy are at an end.  These wonderful people are moving on to other goals, other Autistic kids.  Mr. Shawn, the one with the beard, is going back to get his Masters Degree, in what else?  Special education in Autism.  He is part of our family.  He will be missed.  But his courage and tenacity remain behind in the bright eyes of a little boy who was once lost.  To all the therapists that have had a role in saving Walker, it is a debt that his parents, his siblings and his grandparents and all those who love him can never repay.  Thank you from the depths of our hearts.

April is Autism Awareness Month.  The statistics are grim.  One in every 110 children will develop some form of Autism.  For boys, it is 1 in 70.  And yet, we bury our heads in the sand.  I can only tell you that early detection is vital.  And getting therapy is essential.  We had better, as a society, take a hard look at funding for these children NOW.  I would rather save these children NOW than face caring for them all through their adulthood.  Which do you think is more expensive? Three or four years of therapy or a lifetime of  institutional living?  The choice is ours........

And one last message to Walker, my little courageous boy and to his mother:

"Promise me you'll always remember.  You're braver than you believe, and stronger than you seem, and smarter than you think." ~ Christopher Robin to Pooh, A.A. Milne

If only I had half your courage.......

P.S. Paige got her wish.  Walker has found his voice. "I love you, Mom," is a commonplace thing in his vernacular.  Hopes and dreams may change their forms, but sometimes they are fulfilled.