Monday, May 10, 2010
The "A" Word
Houston, we most definitely have a problem. Below is what I had written in mid-April:
4/13/2010 "Early Intervention arrived yesterday for a three hour evaluation and Sam is functioning at about a 13 month level at age 19 months. I was very calm while they gave me the results. (One of the evaluators even commented about my reaction, remarking how well I took the news. I was expecting their results and had been through this before - they weren't telling me anything I didn't already know, even if it was deep down in my heart.) We still have lots of evals ahead, and may not know for several months or longer if we are looking at just a developmental delay or autism, but I have a pretty good idea which direction we are headed toward. I have suspected for months something was "off", but last fall there was not enough of a deficit for Sam to qualify for therapies. We are also participating in a sibling autism study, and experienced the same results: slightly delayed, continue to monitor. Now the delay is too significant to ignore."
Fast forward to May 5th, a mere three weeks later, and I was sitting in the CAR (Center for Autism Research) waiting room with Sam. Looking back, I have suspected for the better part of Sam's life that we would likely hear the dreaded "A" word, for the second time as parents: "Autism". I remember crying to Marc last Fall as he tried to reassure me, and me saying to him "I know what I am seeing!" My fears were solidified last week when I drove Sam to CAR to meet with one of the doctors who is part of the sibling research study we have been participating in since Sam was six months old. We were not scheduled for a visit, just an 18 month phone interview, but because of his increasing delays, our growing concerns, and the red flags that showed up on his M-CHAT (The Modified Checklist for Autism in Toddlers), they requested to see him.
Within the first 5 minutes, I knew what the doctor would tell me, but there was still that sliver of hope wedged in my mind that refused to budge until she uttered the word. I wouldn't say it for her; no, she would have to be the one to utter the word. After she said "Hello" in the waiting room and spoke with me, she then attempted to engage Sam several times, saying his name over and over, but he did not turn to look at her or even acknowledge her presence. Before we left the waiting area she said to me "You look concerned", and I thought, 'Autism', but I said, "I just want some answers". I didn't want to sway her perception and I wanted a truly objective opinion.
We walked the hallway back to the same little exam room we had visited for his 12 month eval. Two other women, part of the research team, stepped out to say "Hello, Sam!" as we passed their doorway. He didn't respond. Sam also had no interest in the toys laid out for him, and instead chose to focus on my bag and water bottle, poke at the door stop, and smash his face into the office chair that was every autistic child's stim dream - it would spin, had a texture to the seat with holes he could look through, and wires across the back. ( A "stim" is a self-stimulatory behavior; they can be very disruptive and all-encompassing). When he did use the toys it was in a repetetive manner - turning the dial on the toy phone back and forth, without purpose.
The doctor turned to face me, and the look of sad understanding in her eyes told me all I needed to know. We were scheduled for a two hour visit, but it took her less than a half hour to assess Sam and say, "He needs more intervention". I said something like "So, you think that it is...." trailing off, and she replied, "I can't give you an exact diagnosis of where he will fall on the spectrum, but yes, I believe we are looking at autism". It suddenly felt like she was talking to me from very far away and I had landed in a place that I had hoped we would never visit again. She called me an "expert" when I told her through my tears, I had suspected, and she added, "unfortunately science has not caught up with a mother's intuition". I had prepared myself for this, yet I still was holding on to the slim chance that I was wrong up to the moment she spoke that dreaded word. Sam will have a full diagnostic evaluation in the Fall at age two and then we will know exactly where he is on the spectrum. A formality really - the label isn't as important as making sure he receives the necessary therapies.
I know in my soul that there is a greater purpose within all of this, and in helping the other parents I reach out to, I have glimpsed the direction my life is meant to take. Right now I am grieving and moving towards acceptance. At any given moment, I cry, [a lot] but I know it is part of healing, so I let the tears fall. Anyone who has had a child diagnosed knows there is a tremendous sense of loss upon hearing "autism", but I know from our journey with our older son that many moments of beauty lie ahead, waiting for us - different, but still beautiful.
*Please see www.firstsigns.org for info on early signs of autism.