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.