So many acronyms…PDD-NOS, MB12, ASD, IEP, GFCF, MRDD, CDC, OT, PECS, PT, LRE, ASI, SLP…
Can I buy a vowel Pat?
Some days, it seems as if the world is one big acronym, and I, MOM (mother on mission) am meant to decipher, remember and pronounce with clarity, each and every one.
Yet this A word is simple.... and different all together…. Read on....
December 7, 2001: Congratulations, you have another daughter! Snapshot: Me lying comfortably on a feather comforter. I'm in a beautiful white eyelet bed jacket, blonde hair braided down my back, candles burning and my sweet husband by my side. Mozart is playing on my ipod (no nay sayers please, ipods arrived October 2001…so coulda been) One push.... PERFECT. If you could peek through the window, you would see my checks still aglow and our brand new daughter, wrapped in a snowy white hand me down receiving blanket. Sophie had arrived.
SCREEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEECH.
December 7, 2001: Jean overalls and a hoodie, my favorite pair of Doc Martens tap on a hospital waiting room floor in Columbus Ohio. Barry tells me to breath. Yet, deep fear pounds in my chest. What if she changes her mind ? How long have we been out here waiting? I think of our adorable 17-month-old red head, home with a babysitter, not remotely aware of the life-changing event about to happen.
Congratulations, you have another daughter!! Our birth mother's mother (BMM?) was standing in the hallway. A DAUGHTER!!!! We were whisked to the nursery and there so very still and beautiful was Sophie. Amidst the plethora of deep mahogany hair, were the biggest eyes I had ever seen in my life. “Would you like to hold her?” Was she kidding? This precious bundle was handed to me. I looked down at this gift and thought if my life stopped right now.... I'm good. To hold this new life in my arms, was a type of bliss I had only known one other time. Sigh.
“Boy, I bet you got a lot more than you ever bargained for, huh? ” It's May 2003. I’m in line buying broccoli. Sophie is throwing the broccoli, while simultaneously trying to run out the door, while simultaneously screaming a solid, high b flat. “Excuse me?” I hiss.She continues: ”She's quite a handful. I remember you adopted her, right? You know, a little tough love and some good old-fashioned discipline…. That'll straighten her right up! If you ask me."
As Lucy Van Pelt would say. ” WELL, WHO ASKED YOU???!!!???”
Daily, parents of children with autism relive this scene. In libraries, on subways and in the supposed privacy of their own homes. Children on the spectrum, most often look quite typical. Thus inviting looks, sneers and head shaking from the friends, relatives and neighbors alike. Is Sophie a lot more than we bargained for? You bet. Sophie is my life’s lesson. She's why I'm here. Sophie was brought to me to help me see life through a different pair of rose-colored glasses. As many who know me might say, I've always had the prescription, but Sophie has given me the chance to take a second look.
So here's the RBP (really big picture). Sophie keeps taking the supplements. We continue to become immersed in the GFCF diet. Then, in about eight weeks, test results in hand; we go back to our DAN! Doctor who will check, re-evaluate and move us up to the next level of protocol. Then…… we pull her out of PDD-NOS. Get rid of ASD diagnosis ASAP and move on to BFF's and HEA.
BTW:
Dan! = Defeat Autism Now (Physicians with special training in biomedical intervention)
PDD-NOS= pervasive developmental disorder, not otherwise specified (who made that one up?)
ASD=Autism spectrum disorder
ASAP= guessing you know that one
BFF= best friends forever
HEA happily ever after....my personal favorite
As a side note to blog #2. There has been much talk recently about the study, in the Lancet, by Dr. Andrew Wakefield, (recently revoked\much media hoopla)First and foremost it was one case study...one. An attack against physicians/researchers like Dr. Wakefield, who are trying to find the answers into the causation of autism, is an attack against our children. It hinders the forward motion of science. It sets the precedent that individuals seeking answers in controversial areas will be personally attacked and their careers destroyed. It is far easier to destroy Dr. Wakefield's career than to thoroughly research the uncomfortable hypothesis he brought to light. This is shooting the messenger instead of attempting to understand and solve the problem. 1 in 91 children have some type of autism. 1 in 91.
Some of the answers are inside the syringe.... JMHO. (just my honest opinion)
Monday, February 22, 2010
Monday, February 1, 2010
Invasion of the Body Snatchers
Vaccines…there I said it…let’s get it out of the way.
Hello? I hear clicking. Don't leave just yet...I promise I am not implying a remake of “The black plague 201 0, The Squeakauel” So, are you still with me? I write the following 547 words to really say one, be informed…(ok two.)
As I said in my first blog, Sophie was A+. We did everything we did with our first baby. Second child...even easier. So here’s the Reader’s Digest version of the beginning of the end.
Cut to Wizard of Oz cyclone: Sophie had a bazillion ear infections…I hated the idea of continually giving her antibiotics…there was even talk of adding the alien tube trauma. During this illness frenzy, it was time for her usual check up, including vaccinations, MMR (measles, mumps and rubella) Sophie’d been sick...was it ok to give her the vaccines? Should we reschedule? All those shots…she’s so little, can her body handle them? I called, I pondered, I gave her Tylenol and off we went. Bam! Bam! Bam! A few tears, a band aid…done! Vaccination side effects were handed to me on a bright green sheet of paper. Off we went! (Note to self: did I miss the part about the child slipping away into darkness? Maybe it was in-between hives and slight fever)
But I digress. Glassy-eyed Sophie spends the next days with a fever and a disposition much like Barney on LSD…. Hmmm, this is odd. Of course we called in, like the green sheet of paper told us to…“slight reaction”...Yes, ok I’ll go with that. So life marched forward. She seemed to recover..maybe...sort of.
It must be difficult to imagine, how you could miss the disappearance of a child. But...it happened kind of gradually (and who wants to notice anyway???)
.
Here’s how it went:
Me: (to anyone who would listen) “She’s quiet…as in...too quiet…don’t you think? It’s like Invasion of the Body Snatchers…”
Me: (to anyone who wouldn’t listen) “Am I crazy? She had the abc’s down…her name, nursery rhymes…she’s too happy playing with NOTHING”
Me: (to myself, when no one would listen) Something’s’ terribly wrong…I look deep into those huge brown eyes…where is she? She’s slipping away…
Most of the world to Me: “Oh, she’s such a good baby” “She has her big sister to talk for her”. “As children gain new skills they sometimes seem to lose the old ones” “Einstein didn’t talk until he was 3.”
People stared, our lives crumbled. We couldn’t go out. It was hard to stay in. Her behaviors were getting worse. The whole world seemed to become a black and white movie with a never-ending melancholy soundtrack. The same movie just played and played and played.
The trigger had been pulled. By whom? You’ll find no blame here. What you’ll find here is strength in knowledge. After years of researching, reading and being pointed again and again to the same answerers. Something triggered Sophie’s autism. Was it a coincidence that we lost her after her vaccines? Is it a coincidence that thousands of families tell the exact same story? Thousands?
As I write, Sophie continues, taking her first footsteps into biomedical intervention. Shots...creams...drops...change of diet...hire tutors...interview speech teachers, therapists…run tests…track results…Sleep…don’t sleep…Wake up…start over….....Pray.
Hello? I hear clicking. Don't leave just yet...I promise I am not implying a remake of “The black plague 201 0, The Squeakauel” So, are you still with me? I write the following 547 words to really say one, be informed…(ok two.)
As I said in my first blog, Sophie was A+. We did everything we did with our first baby. Second child...even easier. So here’s the Reader’s Digest version of the beginning of the end.
Cut to Wizard of Oz cyclone: Sophie had a bazillion ear infections…I hated the idea of continually giving her antibiotics…there was even talk of adding the alien tube trauma. During this illness frenzy, it was time for her usual check up, including vaccinations, MMR (measles, mumps and rubella) Sophie’d been sick...was it ok to give her the vaccines? Should we reschedule? All those shots…she’s so little, can her body handle them? I called, I pondered, I gave her Tylenol and off we went. Bam! Bam! Bam! A few tears, a band aid…done! Vaccination side effects were handed to me on a bright green sheet of paper. Off we went! (Note to self: did I miss the part about the child slipping away into darkness? Maybe it was in-between hives and slight fever)
But I digress. Glassy-eyed Sophie spends the next days with a fever and a disposition much like Barney on LSD…. Hmmm, this is odd. Of course we called in, like the green sheet of paper told us to…“slight reaction”...Yes, ok I’ll go with that. So life marched forward. She seemed to recover..maybe...sort of.
It must be difficult to imagine, how you could miss the disappearance of a child. But...it happened kind of gradually (and who wants to notice anyway???)
.
Here’s how it went:
Me: (to anyone who would listen) “She’s quiet…as in...too quiet…don’t you think? It’s like Invasion of the Body Snatchers…”
Me: (to anyone who wouldn’t listen) “Am I crazy? She had the abc’s down…her name, nursery rhymes…she’s too happy playing with NOTHING”
Me: (to myself, when no one would listen) Something’s’ terribly wrong…I look deep into those huge brown eyes…where is she? She’s slipping away…
Most of the world to Me: “Oh, she’s such a good baby” “She has her big sister to talk for her”. “As children gain new skills they sometimes seem to lose the old ones” “Einstein didn’t talk until he was 3.”
People stared, our lives crumbled. We couldn’t go out. It was hard to stay in. Her behaviors were getting worse. The whole world seemed to become a black and white movie with a never-ending melancholy soundtrack. The same movie just played and played and played.
The trigger had been pulled. By whom? You’ll find no blame here. What you’ll find here is strength in knowledge. After years of researching, reading and being pointed again and again to the same answerers. Something triggered Sophie’s autism. Was it a coincidence that we lost her after her vaccines? Is it a coincidence that thousands of families tell the exact same story? Thousands?
As I write, Sophie continues, taking her first footsteps into biomedical intervention. Shots...creams...drops...change of diet...hire tutors...interview speech teachers, therapists…run tests…track results…Sleep…don’t sleep…Wake up…start over….....Pray.
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