Friday, September 7, 2012

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.

Tuesday, September 4, 2012

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.

Sunday, September 2, 2012

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.

Saturday, September 1, 2012

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:

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....