The Bio-Med Trials

I am a lover of research.  All of my siblings and I, we love it.  I think it’s kind of like a form of skin picking for the brain to us!  lol

We get a topic, and then we beat it to the ground examining it until we gain ridiculously freakish amounts of usually worthless facts about it that nobody cares about – except for us anyway. 

We do this with everything – current topics and trends, history that catches our fancy, people we get obsessed with, and of course, games. 

I remember one summer, my older sister, Snackie (yes, that’s what I call her, and she calls me that too!), was completely obsessed with a computer game called Magic Inlay.

Have breakfast, Magic Inlay. Go to the toilet, Magic Inlay.  Get a glass of water, Magic Inlay.  Entire family downstairs eating lunch – Snackie, Magic Inlay.  Going to bed – NO! Magic Inlay!!

We were so aggravated -“Are you ever going to stop playing that stupid game?”  And she said, “Snackie.  Am I the Ultimate Magic Inlay Champion yet?  No.  I’ll stop when I am!”  I think it took her about 24 more hours of continuous play, but she did finally become the Ultimate Magic Inlay Champion, and then she stopped and moved on to Word Whomp, or something like that.

Anyway, this is how I approached bio-med for Autism.  Research, diet. Research, yeast connection. Research, mercury poisoning.  Research, MMR.  Research, supplements. Research, chelation.  Research, vitamin D connection, cholesterol, MTHFR mutation, and on and on.

We started with the gluten/casein free diet. This then moved swiftly to the gluten, casein, soy, yeast free diet.  Corn and rice – out. All sugar – out.  Goodbye grains altogether.  We were down to a modified version of the SCD diet, because we had to cut nuts out too.  Eggs were still in, which was good, because I started making these fried meat/egg/pureed veggie pancake-like patties that Ronan called “pizza”.  It was (sing this with me now) “pizza in the morning, pizza in the evening, pizza at suppertime.  When Ronan eats the pizza, Mama make pizza every-time!”

pizzas.jpg <——- (I’ll ralph right now at the sight!)

Mama was making the pizza.  And Mama had to eat the restricted diet too, because Mama was still nursing Ronan – and Ronan was extremely passionate about his “boobies”.  My dreams were filled with dancing cream puffs, toast, bagels with real cream cheese and my old favorite – ice cream.  It was all I talked about.  All I thought about, and all I wanted – well, second to Ronan getting well, of course, but hot-damn, Mama wanted some cream!

Ronan was a champ, and even though he was extremely picky, I did manage to find things that he could have that were nutritious and safe.  I think he really benefitted from his special diets too.  We still avoid sugar as much as possible, and he is sensitive to dairy, so we try to keep away from that too – tough on the budget with his hemp milk at 4.00 a quart! 

New suggestions and studies and findings to do with Autism break every day, so I don’t think I’ll run out of topics to obsess over any time soon.

In the end, becoming the Ultimate Bio-Med Champion will be worth all of the angst. 

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Realization. How did you find out?

I vividly remember laying next to my toddler in our shared bed paralyzed with emotion.  I remember his blue teddy jammies and his lavender hair baby head smell.  I had and haven’t ever experienced such a devastation.  It really escapes words.

I was researching his symptoms, or what we called “quirky behavior” on the Internet.  He had this baby clothes hanger, and all he loved to do with it was hold it up in the air and spin it back and forth in his hand while he stared at it.  It wasn’t a game we could share in.  He was in Ronan World- very secluded and non-responsive.

I typed in “toy spinning” and “twisting objects” and I got in return about 10,000 sites about autism.  It was a word I had heard before, but I didn’t know that much about what it entailed.

Like a lot of people, I associated it with Dustin Hoffman’s “Rainman”, and I assumed mental retardation was a part of it.

My sister and I kind of laughed it off when we saw him doing his spinning.  “He’s one of us!”  We are all kind of quirky, so not really a stand out with the hanger spinning, but still, I had that Mom’s instinct – which Jenny McCarthy so pointedly talked about in her recent public appearances, and I agree whole heartedly – LISTEN to your mother’s instinct!!

I was a nanny for 10 years, and I have so many nieces and nephews.  I saw NT (what they dub Neuro-Typical) behavior in many kids, and I knew mine was different. 

So many talk about regression after vaccination, and we have to add ourselves to that bunch.  Ronan was a happy, smiling, chatty and social baby until about 12 months.  He had a series of shots, and I remember him screaming for a day with a fever – all supposedly normal reactions to vax for some kids, so I stuck it out.  Within a short period of time, the hanger spinning started. 

I brought this up to his pediatrician at his 14 month appt., this was long before I had researched the vax connection.

He said we should definitely have him see a developmental pediatrician, but let’s go ahead and give him his scheduled vaccinations for this visit.  This is the jab that I will forever fantasize about going back in time to stop.  It can still illicit chills and tears if I even think about it for a second.  I’m crying now….

The next few days were utter hell.  Ronan screamed non-stop for 3 days straight, fever, sleeplessness, nursing strike – something he was PASSIONATE about – his boobies, he wouldn’t ever go near them. 

I remember having to hold him airplane-style away from my body, because he couldn’t stand to be touched (a symptom of mercury poisoning I would later learn) and spinning him around at midnight while he screamed, just to get him to sleep for a few moments.

It is the most haunting, gut-wrenching, soul-ripping Mother moment that I don’t ever want to think about.

If only I knew.

Would that have made all the difference? 

Something I will forever be haunted by. 

That word. Autism.  Introduced to us via the internet, and confirmed by a developmental pediatrician.

A word we would wage against, embrace, reject, hate, love, cry upon sight of, celebrate, learn, love, beat down, and finally accept.

So, how did you find out?

Mom’s Writing the Posts – Our Intro

So, I’m Ronan’s Mom, and we have an etsy site (www.ronanjames.etsy.com) where we sell his artwork.  I had a site with my own work, but when i stuck on a few art cards that Ronan drew, they outsold my stuff!  lol  So, here we are with our blog now.  Here’s a little about my boy…

Ronan was given a diagnosis on the autism spectrum at a very early age.  One of the first things we noticed that led us to seek medical care was Ronan’s obsession with “drawing”.  Long before he could grasp a writing instrument, he would take one finger and “draw” in the air with it. 
When he started speaking at around the age of two, we realized that he had decoded the alphabet and could read!  He was drawing letters in the air.  Not only could he read, he knew how to count and add/subtract, recognized all 50 states with capitals, memorized the entire map of Africa and could locate most countries on a globe, knew many words in about 10 foreign languages, recognized all shapes, including a parallelogram (and could spell it!) etc. etc.

We taught him how to hold crayons and paint brushes, and off he went creating beautiful paintings and drawings. His latest passion is photography. 

He is a very talented little boy, but believe me, autism holds many challenges that he has to face every day.  He works extremely hard at the simplest things, like speech, relating to his peers and sorting out sensory difficulties.

He loves his art, and he loves seeing it on the computer! 

He is learning a skill he is passionate about, and he is also giving back.  We donate 20% of our sales to autism research!

So, that’s the start! 

Our First Blog!

We are just testing the format right now!  More to come later!

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