I have discovered as Ronan gets older that I don’t quite fit a specific Mom mold. Even though I have typical children too, I’m not a Soccer Mom even though I’d do anything to have time to sit and watch my daughter at a team practice. I can’t be bothered with being a Betty Crocker Mom creating concoctions of tasty goodness. I wouldn’t do well if I was a Room Mom since I don’t have time to put on a happy face and coordinate festive events for other little people. I am too tired to be a true Helicopter Mom even though I hover over many parts and pieces of my family’s every day existence. I know that I’ve slunk away from most events that include the social chit chat, catching up, diaper derby stories of ‘my kid can do more than your kid.’ What I am though, is a Mom who won’t be shut up.
When my kids were much younger, I spent most of my time indoors due to naptime, feeding time and crashing on the couch time. With the changes in my lifestyle as a new parent, I gravitated toward message boards to pass some of the downtime I had in between all those diapers, laundry and naps. I had worked full-time up until my daughter’s birth. Before then, I never had the desire to spend my time off trapped at a desk in front of a computer monitor unless I was creating a lesson for my students or writing something for my own pleasure.
Deciding to be a stay-at-home Mom turned me into a homebody which was anti-me for so long. I just wasn’t used to being alone and sitting down for that long! I slowly settled into all-things kids though and started to join internet-based support groups. I felt a need for some kind of communication beyond the playroom floor and sought other like-minded new moms to connect with. I belonged to a very large child development board so I could track my daughter’s every moving moment. Fiona’s milestones were hit with precision and I was so proud. I learned why she was in a certain stage, what body parts were being used, which systems were involved and of course, what to look for next. I was a confident parent soaking in the glory of a perfectly moving, breathing, sleeping, eating and pooping baby.
Along came Ronan. Here is where I have to breathe in and out slowly. I can’t tell you exactly when but at some point in his turning-toddler timeframe, I quit that message board that sent me weekly updates of where my child should be. He wasn’t hitting his milestones on time. He didn’t grow like other babies his age were growing. He couldn’t reach, grasp, swallow or poop like those kids did and I was scared. I didn’t so much run away from the other mothers on the message board because I at least knew something was not right. Instead, I quit that board so as not to waste time wondering when is he going to walk? When is he going to talk? When is he going to stop kicking his crib every night after he drinks his bottle of milk? I decided to turn my message board free time into full-on purposeful research. I knew something was up; but what was it?
Every day, even now, I feel like my search for understanding and answers to help Ronan, is equivalent to a final exam. I slave over articles and reports. I take notes and share them with my husband or other Moms like me. I search for certain words and find medical dictionaries to help me understand them. I look for similar stories of children like Ronan to know more about the daily needs and supports a kid like him should have.
I dreaded finals week when I was in college. How was I going to remember a semester’s worth of knowledge and then intelligently relate it back to the professor’s questions on a test? How was I going to pull one word out of hundreds I had learned to make an answer sound logical? As I got used to finals and how to take them, my fear of exams lessened a bit. The anxiousness never fully went away but as an upper classman, I learned how to read my textbooks and notes to remember all the details. I learned what was important by listening to how the professor emphasized main topics. I did better at attending to my classes as if my career depended on them because inevitably, the teaching degree I was earning would mostly be based on my college class experiences.
When Ronan’s development started to lag, I stopped thinking like a typical Mom and went back to my college-studying mode. I spent hours reading and making hypotheses of what could have happened to Ronan. I went from one library to the next hunting all sorts of books—medical, psychological, psychiatric, nutritional, behavioral, educational and anecdotal.
Armed with so much knowledge, I slowly went back to the message board world. I searched the thousands of topics known to be on the web and settled for a few on sensory issues and biomedical support. I also signed onto some faith-based ones because I knew I had the potential to crumble spiritually if Ronan continued to regress. I lurked for a few days before introducing myself to my new internet friends. I wanted to make sure I was in the right spot on the World Wide Web before sharing my story while hoping to learn from others.
Time spent on the message boards came and went like waves of the ocean. I would ride one board with enthusiasm as I started to connect the dots to Ronan’s medical problems. I could hang tight on another waiting for Ronan to reach the magnitude of other kids’ issues, always keeping in the back of my mind a word or name or place to revisit for future reference. I stuck around with a few message boards, mostly health-related ones, got rid of others that outgrew Ronan’s problems and started fresh when I needed a new direction due to Ronan’s new diagnoses required it.
Surprisingly, the one topic that was always a part of every board I have belonged to has been vaccines. You’d think it wouldn’t be that way with the variety of the 15 or so I’ve been on, not one of them specific to the vaccine industry or the manufacturing, testing or injecting of them. This topic reminds me of a pop quiz—it creeps up when I least expect it, but I have the confidence to understand almost all there is about it. I recently posted a comment to a thread on the one faith-based group I still belong. An article had made mainstream news a few weeks ago and was posted by a parent; it concerned the use of aborted fetal cells in vaccines and their connection to autism.
Who better than a ‘resident expert’ with a real-live vaccine injured kiddo to respond to this thread? I didn’t say too much in my response, just put in my two cents as the parent of a child who is experiencing a vax injury. Maybe I added one cent too many when I also stated and oh, by the way, parents can seek exemptions for vaccinations. I threw that in because just about every vaccine conversation I have had is followed up with the worried, “But, what about when my child is school age? Won’t I have to get their shots to put them in school?!” I wanted only to share a small fraction of my story, offer a link for further reading and to say I was available if anyone had questions.
A parent responded directly to me asking if I was proposing to the group that they not vaccinate their children at all, further stating that there was evidence against such a proposal. Instead of being able to reply, one of the moderators stepped in. How sad was I that on this, my only faith-based board that keeps me spiritually refreshed, it was requested that we not get into this topic because opinions on both sides of the issue are very strong. I was shocked. For one thing, part of the topic is related to our Church’s position—the prohibition of the use of aborted fetal cells. The other part of the topic is a part of every family’s life—to make a decision to, or not to, vaccinate. I wasn’t hoping for a debate. I wasn’t waiting to blast uninformed parents into next week had they never considered delaying vaccines. I wasn’t being ugly or rude. I was merely offering real facts about my child’s experience with a chance to be a source for other parents.
I couldn’t sleep that night. I was awake until 3 a.m., tossing, turning, hurt, angry and saddened. Why is this topic so difficult? Why does it have to be a “My side” vs. “Their side” with certain people? Why couldn’t Ronan’s past and present be evidence enough compared to a report? Are these parents only reading the pro-vaccine government studies? Are they only looking at the pharmaceutically-funded literature? Is their pediatrician being influenced to ignore each individual child’s medical history and needs while offering the one-size-fits-all recommended vaccine schedule? Why am I offended that no one stepped in on this thread to say, ‘Hey, Cat! I know you have some good ideas. Share them with me, please.’
There’s no big bomb ending to the conversation about the article. There was no name calling, no one got kicked off for crossing any lines. Knowing that I couldn’t let this thread be snipped off without offering one last thought, I wanted to stir the pot just a tiny bit. I was anxious, as if getting ready for that final exam that never happens. I thought for hours how to respond. I relived years of pain searching for a cause to my son’s problems. How I wished I had known I had the choice and the right to ask those scary questions in the exam room while reading the Vaccine Information Statements (produced by the CDC) from the nurses before they returned to jab Ronan. What if he is that one person who has a reaction? What if he is that one child who spikes a ridiculously high fever? What if he starts having seizures or worse, dies? No one offered me a chance to ask those questions nor said I could delay those vaccines. I’ve accepted that I can’t turn back my own clock to make a different decision, but I sure as heck should be allowed to share my thoughts with other people.
As I typed in my password to enter the message board, I felt calm. Since their ignorance was now my bliss, ignored the off limits request--how dare that be a final word with all that I’ve gone through! I went back the posts, opened the link, found the reply about proposing the group not vaccinate and wrote, “Just offering real live facts about my son’s vaccine injury that could have been prevented.” End of story. I was able to walk away from the potentially wonderful chance to share the thousands of hours of information I have with another parent so they didn’t have to do as much wondering, reading and suffering like I have had to.
I missed out on a lot Ronan’s early years when I let providers guide me with the now-ill choices I feel I have made. I miss out even more when it comes to my other kids and their extracurricular activities now because of those choices. It doesn’t make me as angry as it used to because I’m learning how to better manage my emotions with our family’s constant needs. I do this when I sit in the parking lot watching other parents trudge in and out of weekly practice, some of them begrudgingly watching the clock waiting for the session to end while I eagerly sit in the front seat of my car patiently waiting to ask how was practice, who’d you see, what did you learn and man, I wish I could have been there! Ronan can’t handle large crowds nor can I balance him and the baby at the same time. Add in the cheering on of hordes of kids in one location and you’ve got the making of mayhem. His needs suppress my want to get the tiniest peek at a performance, even if it is only at practice.
I miss out on celebrating a medal earned when Fiona is triumphant at a swim meet but we find ways to bring home those moments. I ask my husband to video tape our daughter’s musical performances so I can feel a part of her success and joy in singing on stage. I don’t bemoan the fact that I can’t be there with the rest of the family while Ronan and I hang out at home where life is a little bit easier for the both of us. He has his every toy, game, snack and quiet places while I keep myself busy cleaning or reading so as not to stare at the clock and wish everyone home quickly. I can’t wait for everyone to pile into the house though to catch the last few minutes of the exciting moment that I missed again. Pictures and videos capture the thrill of the day so that I can enjoy the glory of watching my children growing up.
I am not a Suzie Cream Cheese Mom. I’m not a Girl Scout Troop Leader Mom. I’m Just a Mom making one day better than the previous. As I sit here reading, learning, writing and sharing, I am given the energy and strength to find out what can and will work for me. I didn’t learn from one particular text book or research article. It wasn’t from a speech I heard or from an e-newsletter sitting in my inbox. With time, and the chance to be open-minded about Ronan’s needs, I discovered I can’t fit into a mold like some other parents. I’ve turned me into a new me. I found my voice while Ronan lost his which drives me to share real facts, findings and my opinion. I know that over the years what I’ve said and not said has been heard. To those of you that understand, who listen and believe, thank you for allowing me to grow into a stronger Mom. All for the love of Ronan, I’ll keep at it. Obviously, it’s working for him.
Cathy Jameson is a Contributing Editor for Age of Autism.