I’ve had a lot of people ask me over the last year “how did you know?” How did we know that something was not quite “right” with Sam. The absolute truth is that we knew for a very long time, but took a decidedly ostrich approach and buried our heads in the sand, so to speak, to the full extent of his problems.
As I’ve written before, I most certainly knew that Sam was sick early on – soon after he was injured – but didn’t understand or recognize the extent of the damage that had been done. Quite frankly, I didn’t want to believe that my perfect little baby could be anything but perfect in every respect.
We were fortunate that Sam was attending a wonderful local preschool (where Zach had gone) with a great staff that served as the proverbial – and somewhat literal – kick in the butt for us to have Sam evaluated by First Steps, our local early childhood development service. In retrospect, we probably waited too long to take that step. We’d talked about how he wasn’t meeting the milestones his brothers did. We’d discussed the concerns with his pediatrician. We’d even had arguments about whether we needed to look for help beyond what we already had to figure out why he wasn’t progressing like his little friends in his classroom. We’d been told by the doctor not to worry yet, not to measure him by his brothers’ achievements, that he would likely catch up. All those assurances certainly contributed to our initial complacency in seeking out a diagnosis for Sam.
Shortly before his third birthday, a woman who has become a wonderful friend, who happened to be the owner of Sam’s preschool, a mother of a child with autism, and a person with such integrity and genuine love in her heart for the children her school cares for, told us point blank that she believed we needed to have the evaluation. If we weren’t sure of our own gut instincts about Sam, our trust in and respect for her made us sure. We scheduled
the evaluation as soon as we could get him in.
The catch – if you want to call it that – was that First Steps doesn’t diagnose autism. And we didn’t know to look further. He was severely developmentally delayed, and eligible for OT, PT and speech therapy through First Steps – but only up until his third birthday. Which was less than four months away. After age three, First Steps transitions children to the public school Early Childhood program. So, in August of that year, Sam began attending the EC program at a local elementary school four days a week.
Unfortunately, there was a catch there, too. The special education teachers in the public school won’t – can’t – tell you they think your child may have autism, or suggest that you seek further medical assistance to get a more distinctive diagnosis beyond “developmentally delayed.” There’s simply too much potential liability in even hinting at such a thing. It’s unfair to parents like us who were pretty much clueless, but its also unfair to the teachers that want to help, but just can’t.
When Sam started back to the EC program the fall of the next year and we had our first case conference with his teachers, it was like a ton of bricks just came crashing down on us. Sam wasn’t making progress. He wasn’t improving. And there didn’t seem to be much hope that anything was going to change.
And that’s when I knew.
Sam needed more help than what we had been able to provide up to that point. And to figure out what to do next, we had to know – know, for sure – what we were facing. I had done my share of internet searching (yes – it is as dangerous as everyone says it is!) to see what I could learn about the symptoms we were seeing in Sam. I had started to wonder if autism was the diagnosis we’d ultimately receive.
And that’s when the real hell of getting a diagnosis began. I spent hours making calls to doctors only to find out that Sam had to be put on waiting lists years – yes years long before he could even be seen. (We’re actually still on one locally that doesn’t have his first appointment until October of 2012.) With each phone call and waiting list story, the anxiety over finding out what was wrong with my son increased. It wasn’t a far step between anxious and desperate.
When we finally found someone who would see Sam, we still didn’t really know what we should be looking for in a doctor. We jumped at the first opportunity for anyone to see him. Unfortunately, our first experience also introduced us to the world of docs that can’t give true diagnoses, can’t provide true medical help, and are more interested in revenue than recovery.
If there was something truly positive that came from that experience, it was an keen consumer’s eye for medical care, which we’d always taken for granted and trusted. And through the benefit of beginning to meet more people than we ever imagined sharing this journey of autism with us, we got an “in” to a wonderful MD that was able to give us the diagnosis we expected. It was that diagnosis that allowed us to start getting Sam the intervention he truly needed.
Six months after we started trying to get answers, we had one – and about a million new questions. But it was a start.
It was Day One.
We took Step One.
The marathon was on.