This is my first “Spoken Word” Piece.
It’s about December 2, 2016.
Diagnosis day.
Nothing really prepares you for it. Even if you know what to expect…
Diagnosis day for us was difficult.
We were given a 19 page summary of two 2-hour evaluations by a complete stranger over a one month period regarding our son’s future.
Out of 19 pages, all I saw was this part:
DIAGNOSTIC IMPRESSIONS (DSM-5): Autism Spectrum Disorder (ASD 299.00*)
• With developmental delays
• With limited functional communication
• With anxiety features
*DSM-5 severity rating of Level 3 (requires very substantial support) is assigned for Social Communication and Restricted/Repetitive Behaviors.
There are only three “levels” of autism severity under the current diagnostic model. “Three” being the most severe.
We were told our son has “severe” Autism.
That is what the stranger, who had spent all of 4 hours with him revealed to us about how she saw him.
Severe autism.
What did that mean? What DOES that mean?
Certainties about his future became uncertain. And with uncertainty came worry. And worry caused stress. And stress led to anxiety. That’s where I was. For a long time.
Autism is a HUGE spectrum and we had no idea where he would fall on it. We still don’t. And though, we will do all we can to help him succeed in life, he is and will always BE autistic. Things that we cannot control have a direct effect on his successes and failures throughout his life.
There is no guarantee that he will progress developmentally no matter what we as parents do.
Uncertainty, in and of itself is not inherently “bad,” but fear of uncertainty can be CRIPPLING.
It was for me. And so what did I do?
I grew despondent, depressed and fearful. I began seeking out the “worst case scenarios” and “awful possibilities” with autism, watching kids uncontrollably melting down, parents unable to do anything to help. I sat there wondering, “how long until ‘that’ was us?”
I worried about us. I worried about the future. I worried about the burden it would be on our extended family.
When a stranger told me how I should see my son, I discredited everything I already intrinsically knew about him since the day we took him home from the hospital, and saw my son how THEY portrayed him from the few hours they “observed” him.
When I realized that when I had heard the word “AUTISM,” I no longer saw my son… I saw a label. I saw a broken shell of a little boy and all his Daddy’s dreams for him…and it left me…
…absolutely DISGUSTED with myself.
It’s like God had to kick me in the rear to pull myself out of my self-prescribed misery and look at the beautiful boy He had made.
“In His image.”
And that left me in tears. Jonah had not changed one bit. If anything I was the “broken” one.
I looked at Jonah from a COMPLETELY different perspective.
I was comparing my outlook on Jonah’s life to the outlook other’s have for their kid’s lives.
He’s not other kids…
I do not want Jonah to be raised believing that his potential is limited by one section in a 19-page diagnosis.
We all have our own journey in this life. We cannot compare our journey to those of another.
No, we STILL do not know what the future holds, but with or without autism, we are not even promised TOMORROW.
And whatever the outcome, I will continue to push Jonah to be more than he thinks he can be and do more than he thinks he can do. I will grow as a person to be his fiercest advocate, and I will accept him for EVERYTHING he already is, not despairing over the things that he is not.
Where success is measured by lives touched, not by scores on some evaluation or a “diagnostic impression.”
I will be there to support him every step of the way.
THAT is what “Severe Autism” means to me.
Original Facebook Post.