Friday, September 9, 2011

FASD Awareness Day

Honestly, I don't even know where to begin with this post.  My mind is so muddled, so utterly exhausted from the emotional and physical strain it is to transition back into the school year. I'd like to sleep for a week. I'd like to cry for a week.

Today is a day I never, ever imagined I'd be acknowledging.

Seven years ago I first heard of Fetal Alcohol. It was something that happened to children in far away poor countries, to babies in orphanages. It meant they looked funny and were difficult children.

Six years ago I adopted a boy from a far away place in the harsh wilds of another land. The doctors said his mother drank alcohol, but look how normal he was, he did not look like a FA child.

Five years ago my son was increasingly becoming more difficult. He was exhausting to keep after, but being a first time parent, I had no standard to compare him too. Everyone said it was a normal phase he would grow out of.

Four years ago I began researching the internet for information about FA. The more I read, the more I listened, the more I became convinced my son had FASD. Local professionals didn’t agree; they told me medication was all he needed. I tried him on medication for 3 months and I watched his appetite disappear and he became a zombie, until I said “absolutely no more, he is a toddler and I am not going to do this to him”.

I researched more and flew with him to a clinic where they specialize in pediatric Fetal Alcohol. They confirmed a dx of FASD.  I connected with a specialist, Diane Malbin, and my husband and I had weekly life-coaching, parenting phone conferences with her.

Thus began my "new normal".  My life changed and will never be the same. No matter how much I long for it, those days will never return.  Now, my quest is on his behalf.

I cannot even guesstimate how many hours I’ve spent attending conferences, reading books, making phone calls, researching the internet for articles, groups, professionals, books, dvd’s, resources...anything that will deepen my knowledge and understanding of FASD.

I was so uninformed.  NO, actually, like most of the general public, I was blatantly mis-informed. Fetal Alcohol is not just “a funny looking face”.  On the contrary, my son is the most adoreable, handsome little guy you will ever look at.  But my son is far from being a typical normal child.

FASD is a neurobehavioral disability. It is life long. It affects a persons brain, just as severely as diabetes affects ones kidneys, just as severely as MD affects the muscles. Yet often, there is no visible facial defects, no deformities.  Just abnormal behavior. Which in reality, is normal behavior for a child with Fetal Alcohol.  But you can’t see visible signs so the child is most often labeled uncooperative and disruptive.

FASD is the leading cause of Mental Retardation.

FASD presents itself as ADHD, Autism, ARND, Aspbergers, OCD, RAD, ODD, Bipolar, dyslexia, disnomia, MR and just about every other cognitive and or mental disability you can name.

No kidding.

Why do I tell you this?  I am not just rambling and seeking your pity. Although, I may be venting a little.

I am writing so you will begin to grasp how pervasive, how permanent, how life changing Fetal Alcohol is.  So that you will realize that if 1 in 100 live births in the US are affected by FA, that means you - - yes you -- you do know someone who has FASD.

Most of all I am writing because if I educate just one person then I have accomplished what I set out to do.  FASD prevention is all about educating others.

I hope you will pass this blog on to others.  I hope you will comment and express your agreement, your thoughts, your disagreements and your insights.  It is a very good thing to create dialog.

How to help someone with FASD....that I will save for another post.

Friday, September 2, 2011

FASD: An Invisible Disability

The intent of my blog is to educate people about Fetal Alcohol Spectrum Disorder and to encourage families who are living with FASD.  The hardest part of FASD is that it is a relatively unknown disability. 

Most people I encounter,  teachers, principals, doctors, neighbors and friends, have never even heard of Fetal Alcohol.  And those who have heard of it think FA is something that a baby might be born with that disappears quickly after birth, or can be cured with medication.

The startling reality is this: There is NO cure. It is lifelong.

I am reposting part of a speech that Jodee Kulp gave one year on FASD Awareness Day. She is an amazing mom who is raising a daughter with FASD, and she has been a strong advocate in the US for educating others about FASD.  Please take a look at her website or read the book, Braided Cord, written by her daughter Liz to learn more.

... Alcohol is devastating, and most devastating to the weakest and most vulnerable in our society -- the unborn child. Alcohol exposure is the leading known cause of mental retardation in the western world - US, Canada, Europe and Australia.

In the United States 10,657 babies are born daily (1999 US numbers are listed below)
  • . . . 3 will have Muscular Dystrophy
  • . . . 4 will have Cystic Fibrosis
  • . . . 4 will have Spina Bifida
  • . . . 4 will be infected with HIV
  • . . . 10 of these babies will have Downs Syndrome.
Researcher and fund-raisers are working for these children.

But -- are you ready for the figures --
  • . . . 20 babies will be born with FAS
  • . . . these children will have visible facial and other physical deformities
  • . . . they are the lucky ones
People will see with the eyes, understand and help will be provided. These physical manifestations are not caused by MORE drinking but simply because of the day in gestation the pregnant mother chose to drink.

Today is a day of awareness.
NOW -- are you really ready for the tough issue
  • . . . 100 babies will be born with Fetal Alcohol Effects
  • . . . these children's deformities will be hidden within their bodies, in their brains and organs.
  • Most will go undiagnosed.
  • Most will live a life with little help with behaviors misjudged and struggling with learning and emotional issues.

Today is a day of knowledge.
Brain damage is non-reversible and a permanent condition that an individual must live with for the rest of their life. The person with prenatal alcohol exposure does not have the choice of NOT being impaired, yet has the responsibility of learning to live and to fit into a society that neither tolerates nor understands their impulsive behaviors.

I hope this has been a sobering post for you to read.

Most of all I hope you will doing something.  Please tell everyone you know:  there is NO safe amount of alcohol consumed during pregnancy.

0 drinks for 9 months.

It's that easy to prevent another child from ever having to live with this lifelong disability.

I would love to hear from you if you have any questions or thoughts about FASD. Please email me or leave a comment.

Tuesday, August 30, 2011

A Bear of Very Little Brain

We've been reading The House at Pooh Corner.  I can't help but ponder this quote from chapter 6:
...when you are a Bear of Very Little Brain, and you Think of Things, you find sometimes that a Thing which seemed very Thingish inside you is quite different when it gets out into the open and has other people looking at it...."

I just see that as expressing what I am assuming my son must feel quite often. I am making that assumption based on his apparent lack of social skills and how often he is awkward or says or does awkward things.

I often wonder if in his mind these Things are not awkward; they make perfect sense to him inside his brain. But when he acts or speaks upon those very Things all of the sudden he appears quite foolish. Like at school where it is most obvious that he is different from the other children when placed in social settings.

My heart catches in my throat each time I watch it play itself out. This boy of mine truly is like Pooh bear in many ways and I, his Christopher Robin, loving him always and helping him make sense of his nonsense. My child often acts like a Bear of Very Little Brain: my son, like Pooh, is always friendly and never thinks anyone is a stranger; he wanders happily & innocently in a world of his own making; he never thinks ill of anyone; he loves hugs; he loves sweet honey; he is rumbly tumbly; he hums little tunes and makes up songs of Very Little Sense.

I write this in the most kind manner when I say he is of Very Little Brain, because, truly, that is what Fetal Alcohol does to a persons brain. It destroys it forever. Permanently.

And I say it with compassion and sorrow that it has to be so because FASD is 100% preventable. Yet I know, even with his FASD,  he is an amazing, loveable Pooh Bear boy. And I know God has a hope and a future for him.

I sure do love this child!

Monday, August 22, 2011

The Rose Colored Glasses of FASD

As we quieted down for our bedtime routine, my son lay peacefully calm and still with his head on his pillow, cheeks flushed from a full day of sunshine and play, three fingers in his mouth sucking away self-soothingly. He listened quietly as his brother prayed, then it was his turn. He wrapped up his prayers with a... “Thank you God for a WONDERFUL day. (His emphasis on the “wonderful”, not mine.) And thank you for playing the Star Wars matching game and for our food...Amen”.

My heart softened with love pouring over for this precious angel holding my hand, wrapping his arms around my neck, wanting kisses on his cheeks.  Oh! If you had only been a fly on the wall in my house from noon until 6:30 pm.  There was no “wonderful day” taking place. There was frustration flowing.

He couldn’t do anything ‘right’ today. Constantly teasing his brother, having a rough fast-engine with the neighbor kids, moving, moving, moving his body ALL day long. I gave him 1 minute time-ins to sit and catch his breath; 1 minute hugs to calm his body. I increased the down time breaks to 5 minutes. As soon as the time was up and we had discussed “is it ok to ever throw rocks?” “no mom, I get it, ok”  Yeah. Okay for all of the 5 seconds it took him to fly out the door. And throw rocks again. 

Constantly redirecting and working our way up to 10 minute in the house breaks to calm him from the chase game going on out in the front yard with the neighbor kids. Only to have the break end with us talking about reminders of not grabbing someones toy and not hitting other kids with hot wheel him walking out the door after four...count them...1..2..3..4..separate reminders not to do him immediately doing it and having to be redirected into the house. Again.

Yeah. That was the “wonderful day” we had.

What frustrates the dickens out of me is also what draws me into loving him so deeply. His childlike rose colored glasses that remember only the great things of the day...rolling with the dog on the lawn, catching a cricket with his brother, playing a board game with mom, reading stories before lights out.

I learn from him again today: Breathe deeply. Self soothe. Relish meals. Praise God for the joys of the day. Keep the good things foremost in my mind. And sleep hard.

Tuesday, August 16, 2011

So simple, yet so complicated

Its such a dilemma: I struggle with this decision to allow our child with FASD to play next door without me hovering. It really doesn’t have much to do with the neighbors because I allow his sibling to go over there freely.  It’s just him...the FASD.

I see in his eyes the longing to go over and be with the kids, and it breaks my heart as I want so much to let him go free. I do not want to be a helicopter parent, always hovering. Yet, Fetal Alcohol has deemed it otherwise.

As a rule, I say "No, I’m sorry, I can’t trust you and here’s broke this... you dumped this out when daddy wasn’t sprayed this when I answered the broke this threw this at your brother.  When you do all those things at home the minute I go to the bathroom or get a drink in the house, then how can I trust you next door.  I’m sorry. I can’t allow it."

For whatever reason, today when he asked, I said “ok”.  And his whole face lit up. "Really!?! This is the luckiest night of my life. Oh Thank you! Thank You!"  Which only pierced my heart all the more as I heard the excitement squealing from his whole being.

Yet the minute I allow him across the fence, he can’t control himself. Within a minute - that is no exaggeration - within a minute, he has picked up a watergun and squirted a toddler in the face who is yelling "stop! stop!" while he laughs at them. 

And here I am calling him back to our house. While all the kids are enjoying themselves to the fullest on the front lawn next door. 

I wish I could set him free. I wish I didn't have to hover.  I wish he could handle it.

I hate FASD.

Monday, August 8, 2011

Fighting the Force against my Jedi's

Is it just me or does the creator of Star Wars Lego Wii have a vendetta against moms?

Nothing pulls my children to the dark side faster than this game on the Wii. Every virtue, every character trait we have spent years instilling is suddenly gone...destroyed...wiped out in a matter of moments, just like the Death Star.

They pick up the remote and the frustration begins to build. They yell at the screen. They yell at each other. They swing the remote and jump around the room, anxiety building with each passing swipe and jab.

Seriously, what is the point? Somehow, by some miraculous power of the force, we managed to get through a level...only to have a message appear 1 of 160 levels. What?!? I almost started swearing.

Who created a Lego game, targeted toward 4-8 year olds, with no pause button? No save game mid-play button. No "stop now because mom said its dinner time" pause feature. It's insane! Really.

I have yet to meet a mom who likes what the game does to her children. We're talking screaming hysterics on the floor, red-faced sobbing, wild banshee dancing & yelling, kill your sibling mentality that just consumes the child. Did the devil himself create this game?

And don't give me the line that it says E-10 on the box....whatever! There is not a 5 year old out there with a Wiii in the home who doesn't have this game or isn't begging for this game. Its marketed towards them. For crying out loud: it's a LEGO game!

Lego's and Star Wars combined. You'd think my children had found heaven on earth when I brought home this game. Two of their absolute most favorite things ever to do. And then we opened it. Then we took off the plastic wrapper amidst squeals of delight, hugs of thanks, repeated phrases of adoration and love for the mother who so blessed them with this wonder of a game. Then we played it for an hour. And the tears began. The blood pressure began to creep. The sin nature of man became far too apparent in my children's bodies. Angry swipes at siblings. Stomps of frustrations.

Finally, as queen of everything, I set the timer for 5 minutes and began the countdown to shut off. Oh how the world came to an end!

We tried this again on a different day. The dark side had officially taken over my children.

But this mom is no padawan. They were messing with the wrong Jedi here. I simply took the game away. Forever. Fifty bucks gone like that. Thanks for nothing Lego.

But peace reigns again in my home. And I am amazed most of all that I am not alone: I heard the praise rising from the homes of many of the moms I know who also have had this game in their home. We are banding together and striking back.

Good bye evil Empire, may you rest in peace in a galaxy far, far away and never return to my home again.

Wednesday, August 3, 2011


How is it possible to be filled with such intense love for someone - - and at the same time be repulsed and empty and have nothing more to give them. 

It is only when I realize love is a commitment, not an emotion, that I am able to fully be in this FASD relationship with my child.

Monday, August 1, 2011


 Being a California girl at heart, I have an endless craving for the ocean. I can’t get enough of the warm grains of sand bearing the imprint of my feet. I love the wetness of the ocean sprays when the waves crash on the beach. I savor the salty air as it breathes its warmth on my skin. I long for the wet sand to squish between my toes as I gaze across the blue sky. And still as an adult, I feel the child inside me dance with joy when I spy a complete seashell.

Oh the beauty and perfection, the uniqueness of a sea shell. Smooth and polished on the inside from the constant motion and turmoil of harboring a living creature within. On the outside, a design so intricate, an artistic flair so engrossing, it cannot be comprehended nor copied by human hand.

I’ve often wondered how many shells are hiding in the depth of the ocean, never being seen my human eyes, yet none the less colorful, artfully shaped, and created by God. Shells that are tossed about by the waves of the sea, being carried by the tides, pulled by the undertoe, used by other sea creatures. What was His purpose for such a creation being hidden away?

Isn’t that shell just like my child with invisible disabilities: there is only one like him! While he may look like a perfect design on the outside, there is a turmoil going on inside of him no one else sees and rarely does anyone else comprehend it. 

Unless they too are of the seashell species.

How many of these children are there, hidden away in the depth of a disability they do not understand, overshadowed by the waves of a world that is often not welcoming of them. Rarely being accepted, often being used, yet each one longing to be found by an adoring adult who will protect it and value its uniqueness. Each one distinctly designed by God for a purpose I may never understand.

How I wish everyone could see the beauty of the perfect shell that is a child with disabilities.

I’m so thankful God didn’t stop with one shell, that He created hundreds, thousands of varieties for us to enjoy. And I’m grateful He entrusted this one precious shell into my care!

Friday, July 29, 2011

Why another blog? Why FASD?

So here I am, beginning a new blog. This time around, a bit more anonymous to protect my children, yet nonetheless honest, because, well, to put it bluntly, FASD (Fetal Alcohol Spectrum Disorder) is not pretty and it's time the world know.

You may or may not agree with the views I express on this blog. These are the views of me, an educated, smart, loving, intelligent woman who has: one, lived with FASD; two, read unending books, articles, interviews and medical studies about FASD; three, attended as many conferences regarding FASD as I can; and, four, continues to seek to educate myself and the world on FASD. 

FASD is NOT curable. It is lifelong. It is debilitating in a 101 ways as you will begin to see as you follow my blog.

FASD is preventable. 100% preventable.  Do not drink while you are pregnant. Ever. Do not drink while there is a chance you may become pregnant.

Never heard of FASD.  Here are some staggering statistics: Fetal Alcohol, according to the CDC, affects more than 1 in 100 live births. And it is more prevalent than Autism.

Yet you don't hear about it because diagnosising it in a child means put a label, a stigmatism, on a parent. And in this politically correct world, God forbid we tell another person they made a mistake and now they need to do something about it!  Thus, while I admire Jenny McCarthy for being so vocal about Austism and bringing awareness to Hollywood and the world....thus, you will not find many parents who are willing to admit they made a mistake, they drank while being pregnant, and now their child suffers from FASD. 

In my years of living with and learning about FASD I find it coincidental that children living with a birth parent are diagnoised with ADHD. While children living with a foster and/or adoptive parent are diagnoised with FASD.

This doesn't anger me as much as it saddens me. Because FASD cannot be cured or treated with medications like some ADHD can be. And how often has a child with ADHD been medicated, but not provide any other training.  FASD is all about routine, repetivtive training, calm surroundings, and patience. 

Kids with FASD are not bad people. They are people who need an extra measure of grace. They are people with invisible disabilities. They are people with missing and/or damaged brain cells because alcohol was consumed with they were in their mothers womb.

I hope you will follow along and choose to educate yourself about FASD. One-in-100 is a staggering number. There are many people out there who need your compassion and mentoring.

We CAN change the world. Start today. Zero alcohol for nine months. 0-for-9.