The Diagnosis…

March 6, 2016

It’s not the end of the world. It’s just the end of one world. A world you created but then destroyed. It’s not over- just different…as if you never had a plan at all.

Leading up to this day we had been with ECI (Early Childhood Intervention) for six months, seen several doctors, specialist, had a hearing test (both awake and sedated), seen Occupational Therapists privately and through organizations, had speech therapy on the regular, consulted with pediatricians, I had become ill with mono (Epstein Barr Virus) as a result of stress and endless exhaustion, and ultimately lived each day knowing that something was indeed wrong with my son. It sounds ridiculous to think that I wasn’t prepared- but I wasn’t. Not even a little bit. Not at all.

We waited at Child Study Center. He, of course ran back and forth and back and forth in the waiting room touching the walls each time. There were toys but he didn’t play with them- he just ran, carefree. We were called back shortly for the nurse to get a routine height and weight on him. These parts of doctor visits were always difficult. He didn’t understand why he had to stand still on the scale. He would step on after we forced him but then would just run off. We ended up doing what we had to do for many months- I would weigh-in by myself then I would weigh-in holding him (as he kicked and screamed since we were standing still); subtract the difference between the two weigh-ins and you have his weight! I don’t think they even attempted to get his height that day after seeing the struggle at the scale. Blood Pressure readings were (and still are) out of the question as he will not sit still for it- not one bit. So we headed back to “the room” and waited for the developmental pediatrician. I don’t remember anything leading up to the doctor’s arrival- so maybe it’s safe to say the next twenty minutes were uneventful. The doctor came in- honestly I can’t really remember his face, just his voice- that voice will never leave me.

The doctor talked to us about our life history and his history from gestation, to birth, to infancy, and present. All his milestones were documented with approximate dates and occurrences—every infection, doctor’s visit and so on. It was eerie to re-account how “normal” he was through most of his short life and then suddenly it all seemed to spiral out of control until one day it was if he had never been typical at all. All of this was documented in the 40 plus page application I had to fill out to even get the appointment—this was the first of many occasions I would have to tell and re-tell my child’s entire life history.

He then proceeded to evaluate my son. It went exactly as I predicted… he was content until you made him do something other than run and touch walls. The doctor attempted to get his attention- with no success. He was actually unaware that the doctor had even entered the room (which was the size of a large pantry). Then we tried to get him to sit down so the doctor could assess whether he could point to certain pictures (like a dog). I already knew this was not possible but there was a piece of me that kept saying- maybe he will amaze us! Maybe he is going to do all these tasks and the doctor will tell us that he’s right on track! It was about ten second prayer that this would happen before he was in a full fledged tantrum. He did not want to sit down and he certainly was not going to point to this picture of the dog. He wasn’t even looking at the picture he was just kicking and screaming and trying to escape. Tears gushed from my eyes and I wrestled with him on the floor; attempting to calm and focus him. I wanted to scream- JUST POINT TO THE DOG! IT’S THE ONLY PICTURE THERE, JUST POINT TO IT! Instead I wrestled with him, my tears silently streamed down my face, I couldn’t wipe them, I just let them soak my neck and eventually fall to the floor. I was defeated again by his will to just GO and my grip loosened as he sprinted for the door.

That concluded our “evaluation.” I knew the outcome wasn’t going to be what I thought- and I think then I knew my life was about to change forever. You cannot brace yourself for sudden impact- you just have to absorb it. His diagnosis was borderline severe autism with possible and probable mental retardation; due to his age (25 months) the doctor wrote PDD/ Infantile Autism as his “official” diagnosis for paperwork. All I heard was AUTISM. It was the word I had trained my brain to ignore as this could never be a possibility- or so I thought. The doctor left. I cried and my husband did too. We just held each other. My son was still running around the room. I remember walking back to the car and going to Chick-Fil-a before coming home to our daughter. February 26, 2010 my life changed forever. It was a Friday so there was no work the next day- just the weekend to let it soak in (I don’t think it actually sunk in until weeks after). For a while I thought that was the worst day of my life…now I have a different perspective.

The weeks and months after the diagnosis were the hardest months, but most proactive. My emotions got the best of me at the worst times but I was in overdrive as to how to help my child. What was about to happen next was nothing short of a miracle. Those of you who know us now know that our story gets worse (way worse) but then somehow gets better (way better).

The diagnosis was the death of many things. The loss of “what could have been” is a very real and significant loss. Some days it feels like the pain will never go away- and it never completely does. But this day also brought us a new life with a new perspective, new friends (now so close we call them family), and a new way of thinking. Stay tuned…we spent the next two years fighting our way out of autism.