*Just A Mom, n. = human; female; parent; nurturing; emotional.
Nope. That's not me anymore. I'd like to be Just A Mom, but I am much more than a dictionary definition of mom/mother.
I stopped being Just A Mom a few years ago when vaccine-induced autism raided my house. I had an A-ha moment last weekend about this change as I secured a tracking device to my son’s belt loop on his shorts. Because of that revelation, and the many other reminders of the downward spiral of Ronan's development, I realized I’m actually a private investigator. I'm not a high-dollar, in-demand sort of professional. I'm an unpaid, overworked seeker of information. I wish I was on the hunt for national secrets or a missing jewel. That sounds much more exciting and probably comes with maps or clues that will lead to an eventual discovery. No, my search has more intent. I'm on the constant hunt for Ronan’s childhood and how to fix what took that childhood away.
The hunt for Ronan's childhood is not an easy one. It should be because Ronan's childhood was sitting right in front of me just a few years ago. I promise you, it was there. It was in my home. It existed in my son! I recognized that childhood all those years ago, and I celebrated its existence daily. As a baby and growing toddler I could see it in Ronan's facial expressions. I could hear it in his hearty laugh. I could smell it on his sweet breath. I could taste it as I sampled his baby food. I could touch it when I held Ronan's pudgy hands or tickled his fat belly. I had all of that right at my finger tips.
That childhood started to slip away right in front of me. I wish to God I had more of a clue when it snuck out of my house. I easily recognize the signs of a lost childhood in my son now. I can see it in Ronan's blank stare when all manner of little kid fun surrounds him enticing him to play, but he doesn't. I can hear it in the silence that follows my questions directed right at Ronan--Ronan, are you hungry? Do you like this? Are you hurt? Where do you want to go? I can smell it in the disgusting poo filled diapers Ronan has. I can taste it in the tears that roll down my cheek as I cry after another moment of lost time fills my heart. Wait, that's emotion. I stopped being an emotional Just A Mom awhile ago, remember? Scratch that example. I can taste it in the bland gluten-free noodles I sometimes serve Ronan for dinner. Childhood should include mostly happy and life-living moments ready to be documented in scrapbooks. It should include playing and discovering age-appropriate games. Creativity and memories should fill one's childhood not repetitive inexplicable actions that make no sense to the rest of the world. Non-verbal "can't look you in the eye for longer than seven seconds" gazes shouldn't be the norm. But, that’s what’s taken over Ronan’s childhood years.
This hunt for my son's childhood is all consuming. It takes over everything I think and do. I have a hunch that parents of typical children worry and research like I do, but I think it's far less than what fills up my brain and my time. How lucky for them. I'm not jealous of those parents. Well, maybe I am just a teeny tiny bit. But, no, I'm thankful that those parents don't have to analyze, over analyze and then fully grasp the pediatric medical, psychological, behavioral, neurological, gastrointestinal and emotional systems of the human body all at once like I do. I do all of that hoping I can fully understand my child. I do all of that all the time, and honestly, it feels like I'm spying on Ronan!
I have to see what makes him tick. I need to know what sets him off. I have to figure out each of his next steps in order to know where mine will take me. I live each day hoping that what worked yesterday for Ronan will work for him later today and again tomorrow. I to do this because missing pieces and a lost childhood are not the normal I wish for Ronan.
Each moment of Ronan’s day must be scrutinized because one small change doesn’t just knock me down; it will cause Ronan to fall flat on his face: Will his energy level allow for a full day of therapy? Will his attention span limit his ability to go to a special event? Can he tolerate a trip to the grocery store or will he have a meltdown of epic proportions? Will we ever again brave the general public or is it easier for me to pay someone else to keep Ronan in his safe zone which is our home? How is it that one child is so incredibly complicated?
The all-consuming part of being my son's private investigator is that I continue to haunt Ronan's past in the hopes of discovering where his future might take us. How will Ronan ever transition to the next phase of life without developmental skills typically gained as a young child? I must find the answer to that so I find myself again questioning, asking and investigating past experiences of his and past experiences of mine. I couple that mysterious past with anything new I’ve gained from reading, listening and asking.
As that unpaid private investigator I’ve gained some pretty decent research skills. Those skills now come with a new edge: the annoyance factor. My life includes hours of thinking, convincing, acting and always believing that I personally can change Ronan's life. He hasn't told me I can (or can't) change his life; but, I don't care. I’m going to because I see that other children have improved greatly when their parents worked hard, too.
It’s taken a team of other helpers and investigators to work with me and Ronan. I’m proud of who gets to help my son. Some of "his people" (i.e., teachers, therapists, doctors) really appreciate how thorough I am with presenting Ronan's latest and greatest. We work really well together which means Ronan can be successful. Other people from Ronan’s past were quite the opposite. They would see me and cringe when I walk through their doors thinking, "Oh, no. She's at it again!" Ronan was neglected and abused by their lack of faith, commitment and unprofessionalism. I’m much more careful now at whom I allow into his life.
Ronan doesn't always see me as the nurturing Just A Mom parent I would rather be. I can be annoying in his eyes, too like when I try to get him to complete his speech therapy homework his fantastic therapist gave us. It's no fun for Ronan to have to work so hard on his OT homework either. He used to labor over just gripping the crayon or marker the right way. Being annoying, as well as being determined to find out why he was making those errors, helped both Ronan and me. He can write some of his letters now! Ronan's "people" trusted me to get the job done with their encouragement. I kept the faith and happily watched Ronan beat the odds.
Going from Just A Mom to private investigator has changed my entire outlook on how Ronan lives his life. I've invested more energy in his future than in anything I've ever done before. This task is clearly one of the most important jobs I've ever had. I've got to outthink Ronan's next move because of his speed and his sensory issues. My constant awareness and quick actions help buy time in case we have one of those “God Forbid What If” moments that are more common in Ronan's life than not. Those moments include wandering, a few middle-of-the-night Emergency Room runs and failed assistance that leaves me scrambling to make ends meet. Just A Mom would cry a puddle if left without resources to fix all those God Forbid What Ifs. In those moments, I’m glad to be Ronan PI because I get over the emotional mess quicker in order to hunt down real help right now.
If only I had more answers about where that typical childhood of Ronan's went…maybe I wouldn't spend so much of my day thinking about his past. Maybe I could let some of it go and have eyes only for the future. Too bad I didn’t have a honing device attached to Ronan’s childhood before it skipped out. If I did, maybe I'd be able to hang up this investigation gig I've given myself.
Until I can bring home some typical, at least the typical that used to be there in Ronan’s life, you'll find me sneaking around. I’ll be reading every article I can get my hands on. I’ll be the one asking annoying questions until the right answer is presented. I spy with my little eye a little bit of normal somewhere. Somehow I'll bring it back. I just have to.
Cathy Jameson is a Contributing Editor for Age of Autism.