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I Spy

Ronan 1
By Cathy Jameson

I've decided I am no longer Just A Mom.*

*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 Ronan2 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.

Ronan3 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.

Comments

Rachael

A website should be set-up, to show people, before and after photographs/videos of how their children looked, acted and responded before their "vaccine-induced" autism occurred.

WILLIE

VACCINES CAUSE AUTISM

I am supposed to be in bed however I quickly glanced at AOA and found this wonderful piece with all the thoughtful responses so here I am

Cathy great piece of writing

Benmyson great thoughtful response from your heart and mine too. I also wanted more children and my wife has been utterly devastated by the vaccine caused autism in our child and the way it has affected our family and it is sad and hurtful because I truly love children and wanted a son or two to go with my daughters that were born normally and then vaccine injured.

I love my wife too much to stress her any further about children as she currently cries everyday over the youngest child and is filled with worry and regret. There is no purse, car, diamond, house, vacation that I can give her to make her temporarily happy only having her child back will suffice to make her happy and so this is my lot in life to cure my children of the ravages of the vaccines.

I have never met 99.9% of you the .1% is probably someone I have been talking to for years that blogs here and we do not know each other from the site but know each other. In any case I hope 1 day to met each and every one of you because all of our stories are so similar it is like each of you talks about a part of me at some point and it is truly crazy to read someone else reading your mind and your life. So I truly hope that since we all have a very similar or identical problem that we all have a similar and identical solution, and I hope I can provide it to all of you for free truly I do. We are a family of sorts so I will share these thoughts with you

I have been praying a lot for my daughter lately and all of your children too. I recently got baptized a few weeks ago and I have prayed to God in the name of Jesus Christ my Lord and Savior that he fill me with his almighty Holy Spirit and bless my work in this area as I cannot do it alone. Because I understand why I am a Christian now I am growing in my faith and I am enjoying it. I am not yet a pious man but a Christian under construction as it were.

In any case my prayer to God was that he heal my child so that I can teach her about Jesus Christ so that she can have a fair chance at salvation like everyone else and in fact I asked God if he could heal all of your children too so they could be taught about Jesus. Many of these children cannot speak or even understand their own name let alone the concept of Jesus Christ the Lamb of God.

Therefore I respectfully and humbly asked God if he could please help me figure this Autism puzzle out so that I can teach not only my child but you and your children can also learn about Jesus.

I told my wife who is a Muslim and who I have been teaching about Jesus and taking to church with me about my prayer to God yesterday evening I also told her that I am confident that God will answer my prayer and I truly believe that with all of my heart. My wife in the evening went upstairs to check on the children about 10 minutes after that conversation and came downstairs with tears welling up in her red eyes. I asked what was wrong and she replied “when I went up stairs Elika (6 year old with autism) said to me "mommy can you come with me? My wife replied "Yes Elika why" Elika answered "I want you to help me pray to God for the family". They got down on their knees at the side of the bed and prayed.

My wife was expecting Elika to ask God to bless her food thinking that Elika could never put together a complete thought let alone a prayer for the family, but no Elika did say a prayer for the family and asked for it to be answered in Jesus name.

I explained to my wife that this is simply God showing himself to her in a rather dramatic fashion and my wife agreed. I told my wife that God is waiting for you to say your first words to him proclaiming that Jesus, his son is Lord and Savior just like we were waiting to hear the first words from our baby Elika and just like we are so happy when she speaks and understands and processes God is happy when you speak and understand about Jesus. I told my wife I pray for that too.

So as a brother to all of you I just wanted to share this positive story with you and to encourage and strengthen you and to remind you that God hears all of your prayers and that you should ask for his counsel in Jesus name.

VACCINES CAUSE AUTISM

Taximom5

How about "Cathy Jameson, DM?" DM being a Doctorate in Motherhood. It's also the opposite of "MD..."

oneVoice

Love is a powerful force that moves us forward,makes us learn,search,spy and discover.Stay strong and we must keep searching and investigating until all the answers are found.
I always knew you had it in you Cathy.Your son is a beautiful child,thank you for sharing the pictures.

Dolly

What a beautiful little boy. My heart aches for you, and at the same time is also overjoyed that you are Ronan's mother, the private eye.
My son once asked me, if I could change him into not having Autism (Asperger's), would I want him to be different and like everyone else (neurotypical). The question caught me off guard really. I was stunned for a brief moment, then realized the truth as I spoke it. "No, you are the most loving gentle, compassionate and smart young man I know. I wouldn't want that to change". His question also made me realize just how much he did understand about his own "syndrome" and how far he had come.
Yes, it would be nice to see him with friends who really enjoyed being with him, and see him walk down the isle someday. It may happen, he progresses each year. Someone told me once to never call myself "just a mom". We do forget sometimes that we are more than that, a wife, a friend, a woman and mother to other children who also need us. We are the Supermom's of the world and I say that without bragging, but with pride.
Here's a hug from one supermom to another, and anyone else out there needing it! You are all wonderful human beings!

Vicki Hill

?How will Ronan ever transition to the next phase of life without developmental skills typically gained as a young child?"

Cathy, the best advice a neurologist ever gave me was to recognize that the human brain develops until the late 20's. Don't focus on where your child will be at age 18, he warned. Instead, focus on where he will be at age 30. When he is age 30, no one will care whether he met this developmental step on time, or whether he finished high school at age 18, or at age 19, or at age 20. The real key is developing the skills...and not whether or not your son develops them at the same young age as his chronological peers. My son with ASD is now age 23. Some days he acts like a 12 yo. Some days he acts like a 17 yo. Only rarely does he act like a 23 yo. But at age 17, his developmental age was in the 9 - 12 yo category. Progress....

Carolyn M

bensmyson,

My husband and I were told that the probability of our next child having autism was as high as 16%. The genetic testing that we had had done as part of our daughter's diagnosis was negative. But we have not had another child either.

Carolyn M

Cathy, this was a wonderful piece. It articulates something I have been thinking off and on for some time. But I would add that as much as none of us is "just" a mom, we are having to be not "just" any private investigator. Due to the magnitude of the problem, we practically have to be Sherlock Holmes.

Donna L.

bensmyson -
This is both a poem and a kick in the gut at the same time, and has to be one of the most powerful statements about autism and loss that I have ever read. Simply incredible.

Donna L.

Cathy,
Your story and photos are our story and photos...all of our stories and photos. I get the impression that those outside of the autism world believe our kids were all inherently flawed or damaged from the beginning, when in reality, our memories and our photo albums all tell the real truth.

And as for the PI skills, I think if med school curriculums were replaced with private investigator classes, we'd have an official answer to the cause and treatment of autism by now.

Kfuller Yuba City

Autism stole the life our son was meant to have. It stole the life my husband and I were meant to have as well. It stole the life our older 2 kids were meant to have too. Of course he is improved. Yes we got his voice back. Yes he is healthy again. Yes he is happy. Yes he makes progress all of the time. Did he graduate from High School with his peers in June? No. Does he have a drivers license? No. A girlfriend? No. Will he ever live on his own? Probably not. I am still looking for his stolen life. Still reading everyday. Still trying new things. Still hopeful. He's worth it.

Benedetta

bensmyson that is just too sad!
I wish you would have had two.
You sound like a wonderful father and husband.

bensmyson

"Too bad I didn’t have a honing device attached to Ronan’s childhood before it skipped out."

I believe if you did have that honing device you'd find his childhood in a huge underground warehouse buried in the woods in northern Durham County behind Merck's manufacturing plant. I've been there many times looking for what belonged to Ben. It's a huge catastrophic mess. It's at least 40 acres, stacked high with lost childhood experiences from all over the world. I found a box about the size of a couch one time and peeked inside. It was a Soapbox Derby car. Smaller boxes near by held Boy Scout uniforms, cheerleader pom-poms, a B-B gun or two, notes that might have been passed about between friends about cute boys and sleep overs. But it was one box that stood out, a real heart breaker for me, it was what would have belonged to a little boy just like Ben, it was a picture of a boy with his brother playing basketball in the driveway. I waited for the perfect wife/mother to have a child, the plan was to have two, we had one. We had one because Ben was diagnosed with autism, and we were told autism was genetic. Now it looks as if science is proving autism may be caused by something in the environment. So I guess one of Ben's boxes contains his younger brother, his best friend for life, I guess it's a box that we will miss most about what was lost.

Angus Files

Thanks Cathy reminds me of our son when he was younger such a waste of talent, a life never had.


Angus

Adriana

We're spying right along with you. Thank you for this, Cathy. You say it all. Tis a gift to be simple, but we've lost that choice.

Anne McElroy Dachel

Cathy,

Thank you for this piece. It says it all so well. I don't know any moms in my little town who spend their days tied to a computer like I do, going through the latest spin from health officials about a disorder they're happy to pretend doesn't threaten the future of our country. Not only are you a one-on-one mom 24/7, but you're also a very vocal advocate for a huge minority that can't speak for themselves.

Maybe having JAM (JUST A MOM) after our names isn't such a minor thing. Lots and lots of people with MDs and PhDs after theirs have proved totally worthless and even the cause of the struggle we face everyday. I think that the JAM's of the world are the only hope we have if we want to end the scourge of autism. Whenever I hear someone say, "My son (or daughter) has autism," I just want to hug them. I know motherhood demands from them so much more than it ever will from the moms of typical kids. And the work of moms like you goes largely unrecognized. Your worries over the everyday things and fears for the future take a huge toll.

The autism JAMs of the world don't come with conflicts--except the very obvious one of advocating for children with a disability. I trust what I read from a JAM. I know they seek the truth.

Maybe we should drop the "just" and leave it AM (A MOM). AM comes with years of experience and post grad study of a disorder even the top experts know nothing about.

Thank you for all you do Cathy.

Anne Dachel, AM

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