....Pictures in the air and such

“But I am embarrassed; she will make that noise and draw imaginary pictures in the air”

Hi, remember me? I am the person that got all A’s first semester, yet all C’s the last, because I just couldn’t find the glory in same old same old.  Give me new and challenging or give me a C.

So, yeah, that’s my excuse for my bloglessness it was well…too much pressure to get it right…no, not the worry of dangling participles, nor the subjunctive verb agreement….get it right. You know…the Autism thing.

I thought it would be really, great, cathartic and engaging to share with the world our journey….Sophie’s journey….cause  she’s the one with the “disability” the” Special needs” or my new favorite “learning difference” She’s  the one with the IEP,DAN!,GFCF,ABA and PECS, ( see prior blogs for clarification here)

 I never realized  how high the mountain was…..how low the valley stretched….or how another  wisp of a girl would be taken on this journey, the one with  no acronyms attached to her name.

You see, in our house of autism, lives another child…..with sun kissed freckles red hair and dimples. As I said, she has no IEP, no ABA and she can munch on all the  GFCF’s  she wants.  Yet hers is the cry I hear at night…hers is the shy face that now turns away from a new situation….she has taken the role of perfect sibling.

“Good evening ladies and Gentlemen, welcome to the Gee family theatre. Tonight starring the ever popular, BARRY, with his undying patience, gentle touch and master of all things kitchen. Also starring…the mom, LAURA, who will scan the web for cures while schlepping home the bacon and of course, the real star SOPHIE!  Sophie, will dazzle you with her extreme artistic ability, remarkable reading skills and overall adorableness….(just please don’t ask her to define  adorableness ) With of course a small cameo  role taken by…HAILEY….the perfect sibling”

It gets old.

 “Can we just wait ten or fifteen more minutes…? “ I give my best impersonation of a coping adult.  “I am sure after I coax, bribe, connive and cajole Sophie; we will get to the movie/zoo/playground… out of the car”.

M O V I E  ?  Sophie screams at the top of her lungs.  NO MOVIE!!! NO MOVIE!!!! Hailey turns and walks upstairs, these dates have been broken before. They’ve been cut short, postponed and sadly, obliterated all together.

So, I ask your permission, because there is a lot more here than Autism. I have heard it whispered, possibly spoken of in the back halls .  What about the OTHER child, brother, sister…..how are they?

 

While we strive to cure our stricken child, the years fly by…one concert, one parent, one conference, a half a parent, one bus stop….no parent. Yet you don’t have Autism, you are the lucky daughter…so we forgot to pick you up, you seemed fine, your head in a book, computer….pillow.

There’s another one afflicted, she’s the one in the wings, the one with the cameo…the one who breaks my heart, right where the crack was already lurking. She has no speech therapists, OT’s or special diets. Yet truth be known, growing up the sibling of a (fill in your favorite PC phrase here), can leave the other child little more than a co –star, an afterthought…a given.

This is not a blog of pity or self-indulgence.  My thoughts are here only to affirm how much needs to be done….for all of the Sophies…..yet for all of the Haileys too.  It is not one childhood that s stolen, it’s two.  Maybe in your house, if autism is an unwanted diva, you understand. Something must be done; the numbers are frightening and escalating.

I humbly ask; can this be a dress rehearsal?  Can all the newly diagnosed children and their families be spared this unfathomable burden? 

So, if my tone is not too deep, I will come here now and again, because the reality of Autism is the unknown, for everyone.

 

 

Lola....is doing great

Lola is doing great, thank you…….

My cell phone is ringing.... well not really ringing, it’s playing the theme from “Hotel for Dogs”. (It’s down loadable!) Sticky note in brain: do they have parental controls on iphones? “Barry, you’re breaking up”… “More eye contact?????” “What….helloooo???” “Talking in sentences…???” This is amazing.
I think it must be the methyl b12, the taurine, possibly the splash of vitamin A. More verbal skills, more eye contact!! I can hardly believe it!!!
The rub? The copious commentary was on Lola. Lola is our dog.

Seems the pooch has a hankering for Sophie’s supplements and pilfered the entire concoction………………………great. Our autistic daughter may not be making strides, but our cockapoo is multi-lingual.

Sophie unlike Lola, slowly takes the glass of apple juice from my hand…skillfully holds it up to the light, as if to scientifically discern the ingredients. She moves it left, she moves it right, and she jiggles it to and fro. “No fank you” (she has the polite form of autism). The glass has been returned…denied…sent back to the kitchen………..NOOOOOOOOOOOOOOOO!

Until today, the supplements have done a rather neat disappearing trick into the organic apple juice. Easy... this supplement thing, easy. Open capsules, drip the droplets, smush the ingredients into a pulverized state (BTW the “smusher” can costs a mere four hundred bucks). We opted for the one you see on the info. commercial at three a clock in the morning. THE MAGIC BULLET. Well…. not so magic today. Call UPS.

You see our daily repertoire has become like a well-rehearsed dance. The cream goes on her back, the salts go in the tub, the shot…well you know where that goes…but the supplements, well....THEY GO IN THE APLE JUICE!

So today I realized. It’s not that clear nor that easy. It’s an unexplained dichotomy…and those words are oddly familiar.

“Your infertility is kind of an unexplained dichotomy.” The OBGYN in $800 Gucci loafers delivers the long awaited decree.

“You and your husband both check out. We call this unexplained infertility.” That’s the diagnosis? “ But the good news is we have a smorgasbord of options to help you have a baby…many have least a 35% success rate!!!!” Groovy.

The color drained from my perpetually pale skin…. ok, does he mean, one from column A and two from column B? I hate smorgasbords. True, everyone in 1999 was on something it seemed…. shots…pills…legs up in the air for a prescribed time frame, IU, GIFT, IVF. But I digress to blog 3.

I rise and give Barry “the look”… “Ok... so we’ll get back to you on the brunch idea.” (The smorgasbord metaphor oddly conjured up a vision of clomid, amidst lox and bagels.)

We walk to the car silently. The engine remains still. “I just want a baby…not a 35% success rate” (Quite self talk: I hate to lose…I hate bad odds… “I WANT TO BE IN CONTROL OF THIS” “Let’s adopt”.

Now it’s not as If this idea had never been brought up. True- there are two types of couples. The ones that talk about babies and baby names while they are dating and the ones that talk about babies and baby names while they’re pushing. We were the former.
Actually- truth be known, I had hundreds of children by age 23.

I sometimes believe the yellow brick road to Sophie began over 20 years ago. In a children’s theater that was my very soul. I ate, slept and breathed the air of the oldest children’s theater in the U.S…. and got paid to do it.

“So I’ll need all 47 munchkins in these four shades of purple, yellow and orange” I say rather dryly to costumer # 63. (Seamstresses to the stars are hard to come by) “I can’t costume 47 munchkins in three weeks…. not with your budget.” Ha! My biggest problem of the week was not naked munchkins. Dorothy had laryngitis, the Tin Man couldn’t walk down the Emerald City steps in his costume, and it was looking more and more like the booming voice of Oz was to be played by a teenage boy whose voice decided to begin it’s adventurous descent into manhood just prior to opening night.

I am the surrogate mother of hundreds, and for a while it fills me up…. it’s enough.
It was enough for almost 15 years…then our lives changed…overnight.

Our first daughter came into our lives at six weeks old. Her birth mother handed her to me in a soft yellow blanket saying; “I know you’ll be a wonderful mother.” She walked out of the room and from the window, I could see her drop to her knees and sob. My happiness was tinged with an overwhelming sense of sadness. Her saddest day was my happiest. Another dichotomy. I’m beginning to see a pattern.

I know in my heart, one day, I will read a book with out a highlighter in my hand. One day I will see a 12-month-old baby and not be self-injurious to my tongue for fear I will go on a vaccine rampage. Some day Sophie will not answer the question “How are you today Sophie?” with “I’m 8.”

So for now, I will highlight, micellize, mix, empty, rub, schlep and puncture…..for you see today the update is not on Lola, but Sophie.
“Say it for daddy Soph”.
“Mama, I love you big.”

A my name is......

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)

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.

Sophie Squeaks

Sophie Squeaks
(a journey to rescue our daughter from Autism)

Sophie squeaks, she also talks to a world that is seen and heard only in the shadows of her mind. She frequently seems typical …. Unless you catch her chatting to her non-blue tooth buddies …. Or hear her say her own version of “I want an oompha loompa now daddy”.

Sophie has Autism …. I really still can’t even write the word …. So bear with me if I call it other things along the way….

Along the way started when Sophie was a bit over 2. Let me say in my most motherly voice “she was perfect”, milestone hitting, pincer grasping, perfect. Then she faded away. Through this blog, I want to share the disappearance of our daughter. How one day the ringlets from her beautiful dark head stopped gleefully bouncing and hung solemnly on her cheeks as if they too had regressed into her own dark world.

“Sophie…. Mama’s home” I put my briefcase down …. It’s February, Sophie was almost two. “Soph, it’s mama” …. Dear God …. She’s deaf! How could I have not noticed this before?? I spent the next weeks dropping pots and pans next to her …. Tickle me Elmo was employed to jostle and cajole. After a few weeks of “testing” I came to the conclusion that she was “selectively deaf” a term I coined to refer to her lack of response ….her total lack of response.
How did our perfect little girl leave?

Fast forward. I start this blog just after Sophie’s 8th birthday …. After years of struggle, years of tantrums, sleepless nights and fear…. Lots of fear.

I start this blog, as we start a new journey …. The journey to bring Sophie back. I want to document, as we begin the daunting process of bio-medical intervention. I want to go back and recount the loneliness, the desperation and the purest joy that comes in the form of being Sophie’s parent.

I want you to know that Autism is an epidemic, that my eyes refused to see, but now can never sleep peacefully until I get our daughter back.

So this morning, while she slept …. I took a deep breath and gave her her first shot …. I whispered in her ear, under her curls …. “Sophie, come back to me”.