I knew Caleb had Autism before anyone else. I knew it even before I ever spoke it out loud. Before I knew it was Autism, I knew something wasn’t right.
The first time I recall concrete symptoms is probably 15 months old. But if I scrutinize really hard, I think I can recall some subtle signs at 9 months old. It took, honestly, until he was 22 months old for anyone else to see it. And then it still took me “making a case” for it.
Upon reflection, how odd it is to me that I lived on this lonely island of knowing the truth for the better part of a year but yet I still struggled so hard to find acceptance.
In the beginning, the denial phase made me google like a mad woman to see if it could possibly be anything but Autism. I don’t like admitting it, but in an effort to remain transparent, I will tell you that I wanted it to be anything else. Genetic syndrome? CMV? Severe hearing impairment? Those things aren’t exactly glorious either. And there is always the adage of “it could always be worse.” And yes, there is truth in that. There are terribly scary things like pediatric cancer, congenital heart defects, pediatric transplant lists. I think this personal struggle I had comes from two places. 1) accepting ANYTHING is different about your child is an extremely hard things to accept as a parent. 2) I do not do well with abstract. I don’t like things subjective. Autism is, in essence, exactly that. There is no blood test, genetic panel, machine induced readings that can be done to tell me with 100% certainty and most importantly to a concrete, left-brain dominated purveyor of logic- to tell me why. I’m married to a man who is a molecular biologist by education and medical researcher by profession so yes, I have educated postulations but at the end of the day….I don’t know why “my son.” I do not tend to go with flows. I tend to make thoroughly detailed plans with contingencies for a dozen different “what ifs.” I did not plan for this. I did not have a contingency action plan (for real ya’ll….I say “action plan” daily). And then….no one could tell me why. And I just find that difficult.
At 21 months old I took Caleb to the audiologist to have his hearing tested because 1) delayed expressive language 2) delayed social skills 3) decreased environmental awareness/responsiveness. And I knew that she would tell me he needed tubes and that there were likely some decent decibles being knocked off his hearing. But I also knew that it wasn’t what the bigger picture was. I knew that whatever disadvantages he was having with his hearing would not account for how statistically significant the gap was in his language development. I told her before we started testing that day “I am probably going to take him in for a developmental evaluation because I have concerns about Autism.” She did the testing. She told me, as I anticipated, yes, he needed tubes, yes he wasn’t hearing optimally. And then she said, “And I’d go ahead and schedule that developmental evaluation.”
And I felt like she literally just punched me in the throat.
I’ve told this story before here because that was the moment Autism became real for my family. In my original telling of this story I didn’t mention that everything became all the more real when Caleb had a straight up meltdown in that Audiology waiting room when I was checking out that left me squatting on the floor with him writhing on one hip while I pressed medical forms against a baseboard in an effort to put the pen to paper to try and sign some semblance of my name.
I cried on the way home. I first thought Autism 6 months before that appointment. I fought hard telling friends, families, and colleagues that I knew that is what it was and having everyone tell me I was probably over reacting. I didn’t know it would be so devastating the moment someone agreed with me.
I find that one of the most damaging things you can say to a parent of a child with Autism is anything in the category of “Are you sure?”. In the beginning…when things are still fresh….when they are raw….we will cling to anything you give us. Because acceptance doesn’t happen immediately. You have to grieve before you can accept. And I needed a good year before I started declaring to the world “Take that, Autism, you <insert string of expletives here>!”. So, when we’re still grieving, and you say to us “I don’t see it”, we’re going to try to not see it too. But that doesn’t mean it isn’t there. If you give a mouse a cookie, the mama mouse is going to desperately try to not believe her child has Autism. And then stress eat the cookie.
So, at 8:30 am on a Monday morning in Greensboro, NC, Autism straight up punched me in the throat. I couldn’t talk. I couldn’t breathe. I couldn’t swallow. Autism came at me and came at me hard. And it took a loooonnnngggg time for me to stop resenting the little Autism monkey that has taken up residence on my shoulder.
What has been advantageous though, is that in flight or fight situations, I always fight.
And I hope that is a trait I’ve passed onto Caleb because we still have a long ways to go.
Love and Autism,