Best of AofA: My Addiction

Managing Editor's Note: Cathy Jameson is on a well deserved summer sabbatical with her five kids - so it's not really much of a sabbatical is it?  :)

By Cathy Jameson

I have problems. They’re not going away. 

I’m an addict and I’ve been in denial for many years.  I hide behind labels while retreating with internal pain.  I’m trying to change but it’s something beyond my control.  Who am I?  I am a parent of a child who falls on the autism spectrum disorder and I am scared.  I am also tired.  Somehow I am able to remain hopeful.

Several years ago, my son Ronan started to change. If I could rewind his early childhood years, I’d bring myself back to the summer of 2003.  Ronan was seven months old and gorgeous.  He was developing typically.  Ronan lit up a room with his smile. He was chunky, tan, content, normal.   He nursed well, ate even better, played and laughed all the time.  That summer was the last summer I felt things were normal for both of us.  A friend captured Ronan’s beautiful being on black and white film.  It’s those baby pictures I love dearly as they remind me of who this child of mine was and should be. 

The summer of 2003 was spent at the beach with stopovers to friends along the east coast.  We relished the idea of having time off together, of being a typical family, living the good life now and having thoughts of us growing old with our kids.  The only agenda we had was find time to see friends, relax, and watch our daughter Fiona, then 22 months, and Ronan play.   We had new playgrounds to explore, different tastes to discover and the ocean air to breathe in.  It was the perfect chance to watch time go by.  Ronan learned how to roll and get into things like all normal babies do while Fiona found her love of dolls.  We enjoyed two months of vacation and none of us wanted to go home to the regular routine of things. Toward the end of the summer, I slowly started to pack our bags, say our goodbyes and make plans to get back to real life.  I had a list of things to do with one task I wish I’d never completed. 

I’ll never forget the phone call I made just a few days before we left the beach.  I called our local pediatrician to schedule Ronan’s next well-baby visit.  He was nine months old and I clearly remember asking, “He’s due for his next round of shots, right?”  I was a doting mother doing only what I had been told to do:  I had a shot record for each child and had to fill in the boxes.  I remember talking to the nurse, letting our small-town practice know we were on our way home and to please schedule Ronan in the following week so he could catch up on his shots.  As we left the beach, heading south, Ronan was about to leave us mentally and physically. 

Ronan’s health and development started to change, and not for the better. I had no idea what caused these changes but I recognized they were not normal.  I knew the phrase “boys develop later than girls” could only explain a fraction of what I witnessed in my child.  Over the next year, Ronan began to develop gastrointestinal problems, food intolerances, sleeping problems, language delays, gross motor/physical issues just to name a few.  He couldn’t walk, couldn’t talk, had eating problems and started to have behavior issues. He was no longer the happy, contented, play-appropriately-with-toys child I once knew. He was an irritable, slow-to-do-and-learn blob.  Something changed my child and I needed to know what it was.

Back then when it came to the Internet, I knew the simple basics and how to email. I visited only a few websites, none of them medical or health related. Beyond that, I had no interest in technology.  The drive to find out what was wrong with Ronan turned me into a computer nerd.  I had no idea what a search engine could do but I quickly found out how important a site like Google was. I was able to start thinking like a medical student, probing and hypothesizing and later researching every ailment children have.  None of them fit Ronan’s profile.

All the Internet searches I entered came back inconclusive.  Nothing was an exact fit.  Nothing made sense. Nothing helped lessen the amount of time I was glued to the computer, ignoring my children, my husband and my daily activities.  Though I would have denied it then, I became addicted to the Internet—not for trivial reasons, but because increasingly I believed my child’s life depended on it.

Over Ronan’s second year of life, he worsened and my compulsion to find out what was wrong increased even more.  Ronan was diagnosed with seizures, battled chronic constipation and then chronic diarrhea.  He would either sit on the couch moaning or manically crawl around having enough energy for twenty two-year-olds.  Nothing made sense and time was slipping from my hands. 

I stumbled upon a website, was redirected to it from another website and learned how to bookmark it to be able to revisit it later. It had a new phrase that caught my eye and quite possibly fit Ronan’s list of problems. This new phrase made more sense to me. I was actually excited to learn more although it would open a door to unbelievable sorrow.  It was called vaccine injury.

For the next three years I devoured information about vaccine injury as THE explanation that made sense.   I found other parents who believed in it too. We bonded over biomedical treatment and therapy that brought children with vaccine injury to better health.  In those early years of research, I also danced around the autism websites as they too made sense when I thought of Ronan’s issues.  I didn’t like the thought of autism since there were so many negative connotations about it.  But I immersed myself in anything that could help me help my son. I had to find the little boy I lost, the baby who was growing up in a pain-filled body. 

As a toddler, Ronan tried so hard to do simple tasks.  He’d fail miserably over and over again. I felt like I failed along with him as I had to first learn how to help him and then find the time, therapy or money to create the opportunity to reach him and meet his needs. Of course, I went back to the computer to look up anything and everything to help me.

Today, Ronan is a big boy about to turn seven. For me it’s been an amazing path in self-education and I still research nightly. I do feel I have become an expert in knowing which sites to visit, which doctors to believe, which publications to trust. I don’t have to search as hard for answers since more people are coming forward with their stories, their successes and even their own child’s recovery from autism.  I have my doubts still in how Ronan’s story will pan out as he has been a non-responder to several therapies and has a mitochondrial disease too, but I have found some faith along the way.

After working tirelessly reading for at least two hours each night for the last five plus years, plus 20 minutes here and 10 minutes there of quick searches, you’ll see that I’m addicted to all things autism and anything related to vaccines.  This addiction has led to my belonging to several groups that advocate for children on the spectrum. I reach out locally to families like mine.  I write about our journey and share it so other people won’t have to go through the grief and turmoil my own family has gone through.  I advocate for Ronan in ways I never knew a parent would have to for their child.  

I’m addicted to this life and this path even though I don’t really like what led me here.  I embrace this addiction because it gives me power over despair and hope over defeat.
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Cathy Jameson writes about her son’s journey while juggling the life of her four typical children.  She and her husband have grown stronger and louder in their search for answers.  Their family treasures the small ‘wows’ Ronan shares since those feed the continuing investigation to make life better for his many needs. Cathy runs the Age of Autism FaceBook page.

Comments

[Kapoore]

Hello Cathy,
I hope your summer is has at least a little of the magical summer you describe at the beginning of your essay. Is there a Mom syndrome that goes along with having a child with a vaccine injury, or autism? A syndrome where we have to cover the pain, again and again, can't move on can we, and search for every clue on the internet because the main stream media and the medical establishment have failed. Then we tell stories to ourselves or maybe others like in days of old when stories served the psyche as well as a chronical of experience. There is always a little bit of my story in your story. The beginning with the perfect bouncing, briliant baby; the middle when in come the evil forces, sitting in the waiting room of the doctor's office and then leaving the doctor's office with a changed life; and the end with a new science trying to break through. Will it be a happy ending or will it be a anti-hero story with a muted ambiguous ending: The good endures and the bad wins the day with programmed applause.