The Weight of a Word

When we least expect it, life sets us a challenge to test our courage and willingness to change; at such a moment, there is no point in pretending that nothing has happened or in saying that we are not ready. The challenge will not wait. Life does not look back. A week is more than enough time for us to decide whether or not to accept our destiny.
~Paulo Coelho

Some stories are very hard to tell… The words hang heavily on the tongue, and the heart weighs even more so on the soul.

The “telling” might be therapeutic to some, releasing the words that can, in effect, create a greater sense of understanding for everyone involved.

But what if the act of telling changes everything? Could you ever turn back, away from the truth? Could you change someone’s perspective? Would what they see overcome what their brain wants to tell them? Would they see what we see because of the immense love that we share?
Sometimes not telling is a kinder action.

Then again…

Sometimes you have to see everything else, outside of yourself. Sometimes you just throw yourself at the mercy of others and pray that they have your best interests at heart.

This is our journey. It is full of love, pain and a heck of a lot of courage. Our journey became a story the minute that I wrote this. The telling of the story is somehow the hardest part.

cam in the tunnel

The choice to become a mother was one of the single most defining moments of my life. There was a certain appeal to being in my 30’s and having very limited responsibilities. Yet, something more called to me. A part of me wanted to prove to myself (and maybe the world) that I could become a loving and nurturing parent, despite a laundry list of reasons that I had convinced myself were against me.

I am not one to believe that having a child completes a family. I didn’t think that it was possible to love my husband any more than I did the day we were married. The day that our son was born – I thought that my heart would burst with love.  It couldn’t possibly grow any bigger. I was convinced that the love we shared couldn’t become any more profound than the deep connection between two people who welcomed another life into their fold.

I was wrong.

The day that our son was diagnosed with autism was the kicker. That day I knew that I loved my husband more than I ever knew could be possible. He had saved me from myself in the journey that we were on, and he helped me to pick up the pieces when I fell apart.

We had been on an emotional roller coaster for two months going from speech pathologists to neurologists to developmental pediatricians collecting data that would shed some light on why our son had experienced such a drastic change over the summer. In what seems like a moment, he stopped talking and the level of interaction that we experienced with him was startling. I don’t know if you can imagine what it is like to desperately wish that the word, “Mama” would once again come out of your child’s mouth. I yearned for his sweet laughs

Something was different and we were on a mission to figure it out.  In the meantime, we called in the big dogs and started working toward what we knew to be true. My best friend is a behavior analyst. What are the chances of THAT? Apparently somewhere near 1 in 68

She flew down and completed the VB-MAPP which is an assessment tool for children on the autism spectrum. She was puzzled because he was immediately responsive to her interventions, which was not “typical.” We soon learned that there is nothing typical about our child. What looked like autism, was only present some of the time. But when it was there – there was no denying it. On a good day, you’d never guess. On a bad day… You couldn’t doubt it. He was so quick to respond to behavior therapies that every professional who met with us was left scratching their head.

We started using applied behavior analysis “lite” at home and magically the words started to emerge!  In one weekend, we went from 5-10 spoken words to over 40. In two weeks, we were at 70+ words. Soon we lost count. In two months, our brave boy made such progress that most parents take for granted… On one particularly great day it was all I could do not to grab the mic at Target and declare, “Good evening, Target Patrons! My son has made a year’s worth of verbal development progress in two months. Carry on!”kisses

I say that we practiced ABA “lite” because in reality we were only using discrete trial training and to see a behavior analyst in action is to witness a near miracle. They combine a plethora of strategies and techniques that are individualized for each child and it is so incredibly effective as a form of early intervention that it is miraculous! I don’t know what the formula was for our success. I know parents who worked just as hard, if not harder, and the results were different. At the time we only knew that time was of the essence, so we pushed. Hard.

We started with ABA because we wanted to give our son the tools necessary for him to reach his full potential. We wanted to break down the wall that had unexpectedly risen between us. In no way were we capable of delivering what our son needed to reach his full potential, so we started collecting data that would help us to help him. Unfortunately, ABA can only be administered by certified professionals and we couldn’t afford to hire one out of pocket without the assistance of insurance. Insurance will only cover ABA for a diagnosis of an autism spectrum disorder. And not all insurance.

CamshouldersThe catharsis that came with obtaining the words we feared most in order to get him the help he needed even more… It was indescribable. With three words written down on a prescription pad, we were able to get our son the ABA treatment that he needed.
Autism spectrum disorder.

Three very big, heavy, and daunting words.

But only three.

ONLY three little words used to describe a mere part of the magnificent creature that is our son.

Cameron struggles greatly with two aspects of autism: Social interaction and verbal communication. The desire is there, which is our greatest gift, but we are learning that his brain works differently in HOW it learns. We changed the way we teach.  He began coming back to us.

I remember that there was a very clear and distinct moment where I had fallen apart and was sitting on the bathroom floor in a heap of tears, snot and tissues. I stood up, looked at myself in the mirror and told myself that there was no time for denial, no room for self-pity and that I needed to pull my sh*% together in order to help him become who he was meant to be.

In that moment I made the conscious choice to see Cameron for who he is, and I put my emotions in their place.  After all, autism is only a small part of who he is…

painting pretties

You have to choose to see the child before the exceptionality. You have to choose to acknowledge that autism is the way in which his brain operates, and that he is still the same sweet, creative and silly little boy that he always was.

Well, you don’t “have to.”
But I need you to. He needs you to see him before you see his disability. Because, if you see him first, then you will see that he is a work of art. He is incredible. He is working harder to understand his world than you and I ever could imagine. The kind of hard work that creates such verbal masterpieces as, “Daddy,” “Mama, “”purple,” “open door!” and “Ready set go!” or most recently, “I love you!” These may be scripted, but they are a start.

These words are precious to us. They tell us to keep pushing on, that the little person that we love has something to say, that we need to listen.

And there is absolutely nothing that we will not do to make sure the whole world hears him.

(Please note that this blog post has been two years in the making. There were many times where a sentence was produced, only to induce tears. Others, not one word made it to the blog.)