Wednesday, February 16, 2011

If it isn't one thing...

For Simon, (and for his entourage) this past week has been challenging. From Monday-to-Monday Simon underwent an MRI, appointments with his Pediatrician, Neurosurgeon, and Neurologist, and a full-blown evaluation with a Neuropsychologist. Over and over, with each new appointment, we braced ourselves for the physical and emotional impact of so much intervention, and so much information (or lack thereof).

The Pediatrician's appointment was a simple pre-op and check-up. It was uneventful other than being reminded -- again -- of how much we deal with in regard to Simon that is simply beyond the scope of your average pediatrician. A person I once looked to for all the answers (Why won't the baby sleep!? What should I feed them and when? What does this cough sound like to you?), is now following my lead and conceding that in a lot of our current concerns, I know more than he does. It isn't comforting, but I am getting comfortable with it. It does help that he has taken on the role of "cheerleader." When I recite the litany of medical issues we have going currently, he takes on a sincere look of concern, nods and tells me that I'm doing great. Sometimes, it is just nice to hear that.

The MRI and Neurosurgeon appointments did not go as expected, in that there was a lack of information and a confusing disconnect from physical evidence and the traumatic events surrounding the onset of Simon's seizure disorder. The Neurologist was status quo -- except that I found out that some medications I was giving Simon (like Benadryl and cold medicines) can be harmful to a kid with Epilepsy. I'm not happy that I wasn't told sooner (it is NOT listed on the bottle), but at least I know now and fortunately, no harm done.

The Neuropsych eval was the biggie, as I have known for months that it would be. Several months ago, Simon's coordinating doctor at Kennedy Krieger had a frank conversation with us about Simon's developmental progress. Technically, you can only say that a child is developmentally delayed until he or she is about five, at which point a more concrete diagnosis is necessary for school services (as well as to simply know what you are dealing with and how best to proceed). This conversation was the first time someone suggested that Simon could be mentally retarded (yes, he used those words, it is a clinical definition). It was one of the most difficult things I have ever had to hear, and atttempt to fully comprehend, in my life.

To help us, he referred Simon to one of the Neuropsychiatrists at KKI who could conduct a full evaluation and provide us with a clearer picture of Simon's IQ, as well as make a diagnosis and recommendations for future therapy and education. Being one of the best facilities in the country, KKI was booked out over six months in advance (as usual), so it wasn't until now that we were able to get in for the eval (though we did briefly meet with the doctor before Simon started the CIMT program).

Since then, Brian and I have been trying to come to terms with the probablity of an MR diagnosis. This was extremely difficult, made more so by the fact that we both highly prize our intellect. Olivia's burgeoning intelligence has been one of our greatest points of pride. Knowledge, creativity, and wit were very high on our list of important things.

So, how could we cope with this difference in our beloved little boy, within this narrow realm of thinking and valuation? It took time, and we had to completely rethink views and redefine values. We had to find a new way of looking at the world. Over these eight months we found our new normal, as we have come to call it, and we are truly better for it. We went from high-minded to open-minded and nothing but good can come of that transformation; though it is, and will always be, a work in progress.

The result was that, two days ago, when we finally sat down to discuss Simon's potential diagnosis with the Neuropsychiatrist, I was braced for a full head-on collision. But, that didn't happen. Instead, he told us that from their tests, they didn't think Simon fit the definition of MR. He had a lot of pre-academic skills -- labeling vocabulary, identification of shapes, letters and numbers. He was clearly learning and retaining information at a level close to age-appropriate (though they qualified this by saying it would take a few more weeks to completely compile test results).

This was, of course, great news. A huge relief! Not normal, but close, and learning and retaining information! I knew he was -- we'd worked on those same simple concepts like drill sergeants at home, at school, and at therapy for months -- years, even. And though progress had been slow, and hard won, it felt rewarded.

But, hang on a minute. Progress was slow and hard won, the result of months and years of work and therapy, and the best we had was close to age appropriate...? When Olivia was five she could read and write simple books and I had little to do with that at all... it was a naturally occurring event! What gives? If he's almost normal, why can't he understand us and talk to us as a "normal" child would? Why can't we converse? Why can't he follow simple directions? Play with other children? Function as needed to survive?

That was when the tractor trailer hit me from behind.

The doctors agreed with us that all of those anomalies were present. They agreed that Simon has something very wrong with his ability to communicate and interact -- so pervasively so that they felt the amount he had learned and retained was remarkable, and they gave us full credit for being good parents and having a great team in place to help Simon as much as possible. They told us that Simon is a very complicated child, and despite dealing with so much, we are on the right track. They told us to keep doing what we are doing, because clearly it is working. They also told us they want to give Simon one more evaluation. The ADOS evaluation, a speech-language test that would help identify the issues better...

So, what does ADOS stand for? The Autism Diagnostic Observation Schedule.

{To be continued, tomorrow, I think.}


  1. Wow, I've never seen the possibility of an Autism diagnosis used as a cliffhanger before. But it does read like it feels: a truck hitting you from behind. Hope you don't have to wait six months for the ADOS evaluation.

  2. Sorry, the ending wasn't meant as a literary device. I merely couldn't write anymore and wanted folks to know I'd be giving more info/details tomorrow.