Inspiring Link

I was sent this link on one of my news groups.  I know that many ASD kids have a different struggle, and maybe some won’t have this great of a stride with communication, etc., but it still made me feel great about how the stereotypes of “Autism” are being changed/challenged more and more.   Here it is!

 The Michael Marino Story | CHILDNETT.TV

Some of Ronan’s Artwork

monk41.jpg Mad Monkey!  GRRRR!


Original photo “chalkbin”

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?