Red Shoes Rock

There's a small movement occurring across the world right now.... and I’m not referring to the Ice Bucket Challenge.  This grass roots movement is called Red Shoes Rock. The idea is to wear red shoes from now until September 9th (Fetal Alcohol Spectrum Disorders Awareness Day) and every time someone comments on the red shoes, the wearer educates another person about FASD.  (As if I need another reason to buy me some new Red Shoes!)

Today my shoes took me to a place of grace, flowing with hope and source of peace.

God surely knows that on this FASD journey I need grace. Boy Wonder also requires grace on a daily basis. Living on the Spectrum can cause him to be THE. MOST. ANNOYING. CHILD. EVER!!  In our house we have run the gamut of annoying OCD habits.  Lest you think I exaggerate, here are just a few:
Whistling that would put even the Seven Dwarfs to shame.
Humming incessantly as long as he’s awake.
Biting nails like they were his Last Supper.
Picking skin until it is scarred and bleeding (we should've bought Band-Aid stock!).
Sucking fingers as if they were slathered in sugar.
Right now however, its clapping. Non-stop clapping. Eating and clapping. Walking and clapping. Reading and clapping. Playing and clapping. Clapping. Clapping! CLAPPING!! So yes, in case you wonder, grace is needed in my home.

Here’s the catch: The more irritated I am at his annoying traits, the more grace he needs...yet the longer the annoying habits manifest themselves in my presence, the less likely I am to give the grace.

Still the real irony is found in the fact that the less I am to give him grace, the more likely I am to lie in bed at the end of the day and ask God to give me grace.

And once again, I find that my child with disabilities truly has the ability to teach me oh so many lessons which I need to learn. God has pointed out many of my short comings through his young atypical life.

So when Sunday morning rolls around and I slip beautiful Red Shoes on my feet, they are walking me into a place I need to be. My soul is parched and desiring Living Water. I need the sweet grace of the Holy Spirit to fill me with cool, refreshing water of life that I may overflow into my family.

Where will your Red Shoes take you?

T-minus 2 days

My lofty goal of writing a post a day hit the wall of reality: kids, meals, school, laundry, spouse, groceries.   I may have been slowed down, but I’m not done writing yet…there are 2 more days until Sept 9th.


Here’s FACT # 4

FASD causes underlying changes in brain structure and function resulting in primary and secondary behavioral changes. 

Following are a few of the behaviors FASD causes:

• A person with FASD often acts first and is then able to see the problem after the fact. 

Effect on child:  Doing the action - - throwing, hitting, peeing pants, lying, touch/grab things -- triggers their memory that it was an inappropriate action/behavior.

• A person with FASD often has memory impairment.

Effect on child: They are forgetful & needs frequent reminders.

• A person with FASD often has difficulty learning from past experiences - repeats the same mistake over and over again in spite of increased punishment.

Effect on child: They often do not even understand the punishment and rarely makes the connection between the violation and the consequence.

• A person with FASD often has difficulty with abstract concepts.

Effect on child: They do not visualize anything.

• A person with FASD often has difficulty understanding safety vs. danger, friend vs. stranger, or distinguishing fantasy from reality.

Effect on child:  They will believe anything & walk away with anyone who is kind to them.

•  A person with FASD often has difficulty forming links and associations, often unable to apply a learned rule in a new setting.

Effect on child: Understands no throwing on the playground; doesn’t apply it to the classroom.

• A person with FASD often repeats rules verbatim, then fails to apply the rules.

Effect on child: They can tell you what’s expected, they just can’t apply what’s expected, especially when over-stimulated and excited.

•  A person with FASD is often prone to confabulation and lying. Lying is to deliver a false statement to another person which the speaking person knows is not the whole truth, intentionally. In psychology, confabulation is the spontaneous narrative report of events that never happened.

Effect on child:  They will blend actual events with imagination and/or stories heard without understanding the ramifications of their confabulation. Other times, they will boldface lie just as a 4-year old child would.

• A person with FASD may talk excessively, yet is unable to engage in a meaningful exchange.

Effect on child:  They may be unable to express emotions and will most often laugh while being disciplined - - they are not being disrespectful, they are frustrated and unable to express it.

•  A person with FASD often has the inability to do more than one task at a time.

Effect on child:   Choose reading, playing, coloring, going to the bathroom, or eating.


Did you just read that entire list?  If so, thanks for tracking with me.

Now read it again. Slowly.

Imagine that all of those primary behaviors were going on in your brain. All at once.

Imagine how frustrated and confused and overwhelmed you would feel. All the time.

Imagine there being no medication to slow down any of these affects. None.

Imagine these behaviors lasting your entire life.

Welcome to the devastation caused by FASD. Welcome to the world of my child and thousands like him.  Now do you begin to understand why I am so passionate about educating everyone about the dangers of drinking any alcohol while pregnant?

Help spread the word and prevent another child from ever living with this disability! Please take the time to pass this blog post on to at least 1 of your friends, link it back to your blog, share it on Facebook, or tweet it on Twitter.

FASD Awareness Day: T-minus 6 days

Thanks for reading along with me as I journey to Fetal Alcohol Spectrum Disorders Day: September 9th.  There is so much I want to share...

Fact #3:

It takes children with FASD longer to grow up.


My child's greatest disadvantage is that he looks normal.  If you saw him on a playground, the first thing you would notice is that he is a very handsome boy. He is average weight and average height. He loves to laugh. He loves to run and play.

However, if you paused to observe him for longer than than 15 minutes you would soon change your opinion of him.  You would hear him babble with giddiness and excitement. You would see him appear to tease other kids.  You would watch him cut in line on the slide, throw sand in the air, pick up gum from under the teeter-totter to happily put in his mouth, and wander around talking to every stranger sitting on park benches. You would see him gravitate toward the younger children on the playground. You would see the mothers of those preschool children casting wary glances at a boy who looks so old wanting to play in the sandbox or on the baby swings. You would begin to think that he is obnoxious and unruly. You'd probably question his parents child-raising abilities. You'd find yourself wondering if he is spoiled and runs the household.  By now, you're most certainly irritated that he is annoying your child.

But here's the truth:  my son is dysmature, not immature.  Dysmaturity means a person is functioning at a younger developmental level where immaturity suggests the capacity to catch up with chronological age.  I really like this quote taken from Whitecrow Village website:

"The IQ of persons with FASD is most often within the normal range, yet they do not have the ability to meet many of society’s age based social and academic expectations.  Since FASD is usually not outwardly visible, the effects of dysmaturity on persons with FASD can be puzzling to themselves and to those around them."

For example, a child with FASD who is 7 often functions as a 3-5 year old would; a child with FASD who is 11 often functions between age 7-9.

So you see, my son is being socially appropriate at his younger developmental level.

To be honest, we have no idea how far my son will mature developmentally.  He may develop the same as other children, only at a slower pace (and yes... many 23 year old men act like 17 year old boys!)  or he may reach a developmental age and never move beyond.  Each day he wakes up and makes progress is a blessing we don't take for granted!

Please remember: Adjusting expectations to be developmentally appropriate will greatly help a child with FASD.    


If this post is your first exposure to one of the many life long disabilities caused by prenatal alcohol consumption, I hope you will contact me and let me know your thoughts.  As a mother of a child who will have life-long challenges I challenge you to have 0 drinks for 9 months. 

I hope my posts encourage many who are living with the realities of FASD, and educates many others who are new to the disability.

FASD Awareness Day: T-minus 7 days

Welcome to my second post about Fetal Alcohol Spectrum Disorders Awareness Day.

FASD FACT  #2:  
Prenatal alcohol exposure causes brain damage that affects behaviors, e.g., poor judgement, difficulty learning from experience and difficulty understanding consequences. 

FASD is most often an invisible physical disability. 

Here is a very insightful quote from the National Center for Biotechnology Information

"Prenatal alcohol exposure is known to disrupt many areas of brain development, including the cerebellum, hippocampus, basal ganglia, and the corpus callosum (Sowell et al, 2001; Mattson, Schoenfeld, and Riley, 1999). Other pathologic changes to the central nervous system include enlarged ventricles, abnormal neural/glial migration, and changes in the microvasculature in regions of the brain such as the cerebellum and hippocampus (Miller, 1992).

.... More likely, there will be identifiable patterns related to differential alcohol exposure (timing, amount, and frequency), combined with other genetic and environmental factors. These patterns may be reflective of general patterns of atypical prenatal brain development due to a combination of factors, and may not be specific to alcohol as a teratogen. However, some of the more commonly identified problem areas in FASD include attention, learning and memory, abstract problem solving and strategy generation. While individuals with FASD will often be within normal limits on measures of IQ, they often have other significant neurocognitive deficits. Many areas of cognitive functioning are only peripherally assessed through an IQ measure, such as attention and concentration. In addition, IQ testing does not assess other domains, such as higher order executive functions. These deficits will have a profound effect on the ability of a person with FASD to function, and without appropriate supports and interventions this can lead to secondary impairments."

So what does that mean in terms of parenting???

We have learned the importance of giving appropriate environmental accommodations -  no one would discipline a blind child for not reading the blackboard or expect a child in a wheelchair to run a marathon. FASD is an invisible physical disability.

It means no down-time as a parent.

It means constant supervision.

It means a whole new way of parenting - - far different from the way my parents raised me or my husbands parents raised him.  

The child needs a stable home: A healthy, processed food free diet. Structure. Routine. Boundaries.

It is 110% work to raise a child affected by Fetal Alcohol.  It is life long for the child.  It is life long for the parent raising the child.

Which is why I cannot say it too many times:  If a woman is of childbearing years she should avoid alcohol during the time she is ovulating and fertile for pregnancy.

It's that simple. Really.

Please pass this info on to others. 

From one parent to another: let's educate our communities and prevent another child from ever suffering this life-long disability.

FASD Awareness Day: T-minus 8 days

September 9th, Fetal Alcohol Spectrum Disorders Awareness Day is almost here, so I want to take the next 8 days to give you some startling facts about Fetal Alcohol.  My hope is to promote awareness and education which will enable change.  And change begins with me sharing with my family, with my friends, with my city, with my state, with my country and with the world. So here I go, sharing with YOU.  Please join my conversation...tell me what surprises you, what angers you, what frightens you about Fetal Alcohol Spectrum Disorder.

You can start by reading one of my archived posts which fills in the details as to why I started this blog last year.

Now on to the real purpose of this post:

FASD FACT  #1: 
According to the CDC 1 in 100 live births are affected by FASD in the US.  FASD is the leading cause of cognitive disability in Western Civilization...yet it is 100% preventable!

What this means is that you are surrounded by more children than you realize who are affected by FASD.  More babies are born with FAS, than with HIV or Autism or Downs Syndrome. 

Consider this interesting reality: children who are with biological families are diagnosed with ADHD, while children placed in foster or adoptive homes are diagnosed with FASD.  Our desire is not to criticize past mistakes, but to educate those we come in contact with to the fact that FASD is very prevalent right here in our own communities. In your neighborhood.  In your school district. In your state.

What grieves my heart the most? The fact that Fetal Alcohol Spectrum Disorder is absolutely, positively 100% preventable. 

As a mother who lives the rollercoaster of raising a child with FASD, here is my plea: If a woman is of childbearing years she should avoid alcohol during the time she is ovulating and fertile for pregnancy.

It's that simple. Really.

I know there are those who argue that "it's a woman's body and she has the right to do what she wants...and no one has the right to tell her not to drink."   Just for a moment, think about this...those same women avoid tuna and sushi because there might just possibly be a trace of mercury.  Or they willingly avoid caffeine.  Hmmmm.  Possibly a trace of mercury, so sushi is skipped?  Yet 100% positive for alcohol and "it's my body"?  I just don't get the validity of that argument.

Here's the deal with alcohol: it goes directly from the mama's lips, into her bloodstream and on into the amniotic sac where the developing baby's body is basically soaking in alcohol. 

Here's what the NCBI  says about it:
"Because the brain is constantly developing throughout gestation, the effects of prenatal alcohol exposure on the developing brain can occur at any point. Therefore, exposure at different times and with different doses during gestation may explain why FASD presents as a spectrum of central nervous system dysfunction. In addition, individual differences in the mother and child modify the effect of prenatal exposure in the individual, and not every child exposed is affected (Streissguth, 1997)."

So for the life long sake of your unborn child...just say no for 9 months. 0 drinks for 9 months.  It's really not asking for much.   Trust me on this one...the 9 months of no alcohol will be nothing compared to the frustrations that you will be avoiding for the rest of the child's life!!

Come back for more information tomorrow....

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 sign...no 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.

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.