“Mommy do you know what would be the best Christmas present ever?”
“What’s that buddy?”
“If on Christmas morning we went into the family room and all of our pets were home from heaven.”
Before his diagnosis, I was talking to an acquaintance who has a lot of experience with psychology. This person assured me that Caden couldn’t possibly have autism because she had seen him smile. I wasn’t even on the journey yet and had no idea if I wanted autism to be the explanation or not but I did know that something wasn’t quite right and that until we found “the label” we weren’t going to be able to seek out therapy or medicine or whatever it was that our sweet little boy needed to bring a bit of calm to his very chaotic world. Honestly when he stopped talking, I didn’t know if it we were looking for something physical or mental or developmental. I just wanted answers and the speech therapy evaluations were suggesting that autism testing was warranted. Not knowing anything about autism, I asked her to elaborate and she very matter of factly told me that ASD kids were emotionally cold.
Let’s just say the first evaluation didn’t leave any room that DSM code 299.00 applied. Maybe it is my years and years of practice with coding for insurance but as much as is blurred about that diagnostic findings meeting, I walked out with those numbers as clear as day in my mind. We waited another 6 months and re-evaluated at another facility and walked out with the same verdict. Caden was on the spectrum and no one had any doubt about that.
I did what any terrified parent would do, I started reading anything and everything I could get my hands on. I talked to anyone and everyone who had ideas about autism. I learned the language, the therapy options, and what other conditions liked to hang out with ASD. In other words I thought I became an expert.
December is the 7th year anniversary of his initial diagnosis. Looking back now I realize how naïve some of my ideas were. For example I thought problems would resolve as we worked through therapy; I never considered that as we would overcome one thing, something else would pop up in its place. In other words it didn’t dawn on me that autism would grow and change as my son grew and changed. As I have talked about here and here, (oh and let's not forget here) over the years it has also been painfully obvious that while I tried to act on the research I was finding, I was wrong a lot. Just like Caden’s talents are different (not better, not worse, just different) than his big sisters, his autism like his personality and talents is uniquely his own.
Maybe some individuals with ASD are emotionally cold. Or maybe they don’t know how to express the emotions they feel. Or maybe the emotions are too overwhelming so they shut down. Or maybe the emotions are felt so deep a fight or flight response is necessary in order to cope. Or maybe a hundred other scenarios I’m not even thinking about.
I just remember recalling my acquaintance’s words in the hours following Caden’s diagnosis and wondering if that meant he would spend his life alone. In my darkest hour, I even wondered if it meant that he didn’t and maybe never would love me. Flash forward to today. One of Caden’s favorite and most reliable coping mechanisms when life starts to get overwhelming or hard is to tell us that he loves us. He has to repeat it until hears that we love him too. His need for that reassurance is desperate and genuine as is his perfect Christmas morning scenario. I’ve cried a lot today—some of those tears are remembering how much I miss the loved ones we have lost and some of those tears are at the purity, beauty, and love he displayed in that brief interaction.
Knowing the depth of his love for so many things just might be the best Christmas present that I could ever wish for although I have to admit a few visitors from heaven would be pretty amazing too.