Johnny had his first of many evaluations between the ages of 2 and 3, or just a few months shy. I do remember vividly this first evaluation and completing the endless paperwork to document Johnny’s milestones or lack thereof. As I filled out each sheet I wondered if these people were going to think I was just crazy or how did I let this child “go” this long without getting him any “help.”
My answer, yes, maybe I was a little crazy but anyone who has traveled any stretch of this road knows that feeling is just one of the many perks of taking this scenic path. But, no, I did not “wait” this long to try to get him “help.” I had been trying to get “help” and “answers” for months and months. Problem was, by the time I got my whole story out to any doctor I would be given the “broad range” of normal option and hurried on my way, as I was using more than my alloted appointment time.
As I said before he also did not “test well.” From day one, Johnny has not fit into anyone’s parameters. He was always very affectionate and would climb into people’s laps and snuggle in. While this won many hearts, it seemed to really skew any observations. The message seemed to be that “typically” a child with Autism would not exhibit such affection.
And about Johnny banging his head on the floor? The advice, “he will figure out it hurts” and stop doing it. By the end of these doctor’s appointments, I was the one wanting to run screaming and bang my head on the floor.
This feeling of frustration only fed into my growing “guilt” that perhaps I had done something to cause all of this. Earlier I mentioned that the doctors called him, “happy to starve” as a newborn. When I tried to nurse him he ate and seemed “content”. Problem was, I was barely producing milk so there wasn’t much to eat but unlike his brother, he did not make a peep. From the get go, Johnny squashed all those parenting tips like, “don’t worry, if he is hungry, he will eat.” Turns out being hungry, apparently, was not that big of a deal to Johnny. For many years, I worried that perhaps this was the “cause” of Johnny’s developmental delays. His mother had starved him and stunted initial brain development. That was it, I was sure.
Evaluation paperwork always had the potential to take me to the next exit, labeled, “guilt” or “bad parent.” I took these exits often. Don’t know why. Guess there was no sign that said, don’t waste your gas, taking this exit will only get you no where. So, being a slow learner, I took them often.
At this first “official” evaluation by early intervention I remember that he had to stack blocks. Ten blocks to be exact. Johnny could only stack 8. Not good enough. Delay. Bad mom.
Where had I gone wrong that my 2 1/2 year old could not stack blocks. More guilt. What kind of Mom doesn’t teach the basics? How did I not realize he could not stack blocks? What had I done?
Again, I was quite convinced that we were traveling this road, clearly, only because I was a very bad driver. Had I been better I would have noticed signs earlier and been driving somewhere else…like to the store to buy more blocks for Johnny to stack. Because had I been paying attention, he surely would have been an expert in this block stacking business.
When Johnny was about 16 months old, the Captain deployed to The Gulf. The Big Brother was 3, Johnny was 16 months old, and I was pregnant with the Little Brother. Good times. No stress, AT ALL…in case you were wondering. Please refer to Krispy Kreme Memories for any clarification.
During the time of the Captain’s deployment I was not focusing too much on stacking blocks. I was just trying to get through the days. That Christmas the boys had gotten a train table and trains and Johnny was hooked. He would spend hours playing quietly around the table and with his trains on the floor. This was great, I thought, a child that can entertain himself, as I chased Big Brother all over the place. It was right before the Gulf War started and I was just a little stressed out, as we had no idea when the Captain would be coming home. So, you got it, I blamed myself for not being more “aware” of Johnny hitting the block stacking milestone or why I never questioned his contentment to be alone. I was just happy, at the time, that he was happy. What Mom wouldn’t want that? Right?
So there I was in the midst of evaluations, growing more and more convinced that had I done more and done it better, all would be well.
What have I learned traveling this road and continuing to take the blame and guilt exits? It’s like nailing jello to a tree. Nothing, and I mean, nothing gets accomplished. Plus every time I took that exit, I had to then do a u-turn to get back to the road I needed to be on. But not knowing where this road was taking me, I didn’t always trust the signs.
(This is Part Two of I don’t know how many posts, on our early Autism journey, when I was not quite “aware.” Please check back to see which exits I take, which I miss and where the road takes me.)