#3 of 10 Things You Need To Know About #FASD – It’s Mostly Invisible

Guest Blogger for Day #17 – Ann Yurcek
10 Things About FASD #3 Most the Time FASD is Invisible

Parenting Complex Children Blog by Ann Yurcek

Did you know that the majority of those with prenatal alcohol exposure have no visible characteristics that would tell you something is wrong?
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It is estimated that only 1 in 10 kids with an FASD will have full Fetal Alcohol Syndrome.

In our Parenting FASD Group the parents who have children with the invisible signs of prenatal alcohol exposure struggle with getting diagnosis and help for their children who were prenatally exposed.  Often times parents struggle with knowing that their child has an FASD and will find many closed doors to diagnosis.

The children with full Fetal Alcohol are often diagnosed much younger and have the classic FAS features and growth failure.  With that they get more earlier intervention and understanding.

In Fetal Alcohol Syndrome the diagnosis is made by looking for the visible signs:

Abnormal facial features.
A person with FAS has 3 distinct facial features:

  1. a smooth ridge between the nose and upper lip (smooth philtrum),
  2. a thin upper lip
  3. a short distance between the inner and outer corners of the eyes making the eyes look wide spaced.
Growth problems:
  • Children with FAS are at or below the 10th percentile for height and/or weight.
    Some children with FAS can outgrow their growth failure later in childhood
  • Central Nervous System Disorders
  • Requires confirmation of prenatal alcohol exposure.

To get an FAS diagnosis the child needs to have all three of the above.

To learn more about diagnosis in Fetal Alcohol Syndrome

For the MAJORITY of the kids with Fetal Alcohol Spectrum Disorders you cannot tell by looking at them and even professionals struggle with diagnosis.

Learn more about FASD Identification at Nofas.org

From Nofas

“Although it has been over 40 years since the harmful effects of prenatal alcohol exposure were identified in medical literature, the majority of individuals with FASD—of any age—are not properly diagnosed.”
Those with most FASD’s are often times diagnosed with any of the little d’s of the Alphabet Soup instead.

Anny

#2 of 10 Things you need to know about #FASD – It’s complicated!

#16 of 90 Thoughts on FASD by Ann Yurcek – Guest Blog – Thanks Ann

Fetal Alcohol Spectrum Disorders is an appropriate umbrella for the wide variety of ways people exposed to prenatally alcohol are affected. Depending on the how much consumption, the time of consumption, stress, nutrition and all sorts of still being determined ways alcohol affects the development of the baby.  Add individual genetics, the timing of the exposure, there are so many things that come into play.

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It’s complicated.   Think about the new article where they gleaned information from the scores of articles on just Fetal Alcohol Syndrome and they found over 400 differing diagnoses and medical problems.

“Researchers at the Centre for Addiction and Mental Health (CAMH) have identified 428 distinct disease conditions that co-occur in people with Fetal Alcohol Spectrum Disorders (FASD), in the most comprehensive review of its kind.”

To see the article in the Lancet from March 5, 2016

Comorbidity of Fetal Alcohol Spectrum Disorders: A Systematic Review and Meta-Analysis

At least we are beginning to understand and acknowledge just how complicated FASD can be. For those who are affected and the families understand that prenatal alcohol exposure causes challenges that are different for each person who is affected.

Anny

Meet Tiana – #17 of 90 Real People with #FASD

Finding Tiana was great Mac. Actually on Day 17 we are wondering if you were after her cupcake – gluten free for you little buddy. Thanks Mac for getting these people to Red Shoe Rock with us!

MEET TIANA – She is 11 and has Classic FAS. She was diagnosed before she was a year old. Her bio mom drank through her whole pregnancy and smoked pot and cigarettes and abused prescription medications.

HER STORY – Tiana story is complicated because there are so many children involved. Tiana is the 5th of 9 children born to her bio mom. The oldest is 26 and the youngest is 4. She has one older brother and four younger sisters that have FAS. The oldest 3 children do not have an FASD. Soon after birth she was placed in foster care with family friends, returned home, placed with relatives. She and one sister were then adopted by our forever family. They have been able to stay in contact with all siblings. FAS has impacted our whole family but we are all trying to be the best we can for these kids.

STRENGTHS – She is a very happy friendly kid. She’s very polite, very smart and can be very insightful. She is my little ray of sunshine. She’s great with animals. She is a positive upbeat kind of person. She has a great sense of humor. She likes to learn new things and wants to make good grades and gets very upset when she gets something wrong. She is very involved with her 4-h club and participates in our community theater. Another strength is that she has a large support system. She has her siblings (adopted and biological), her grandparents, aunts and uncles, and the family who she spent her first two years with still come and get her every Saturday and they are grandma and grandpa to her in every sense of the word. It’s good for her to have all these people braided into her life.

STRUGGLES – Tiana struggles mostly with sensory issues. She cannot handle a traditional school setting so is home schooled. She struggles with going places that are crowded and noisy. Even doing school at home the sensory environment has to be strictly controlled. There can be no TV’s on in the house, curtains closed etc. or she can’t stay focused. Tiana also struggles with her memory. She has trouble remembering things that she was taught so I reteach until she finally gets it. She is very impulsive and it gets her in trouble. She struggles to make friends. She has a hearing loss and some muscular problems from the FAS. She also has a lot of trouble with sleeping. She has to take medication to get full nights sleep. She has been diagnosed with RAD, sensory processing disorder and ADHD along with the FAS. She was failure to thrive until she was 5 years old. She has Microcephaly and the facial features of FAS. She’s also very small for her age.

MY WISH –  (Tiana’s words) is for people to know that just because I have FAS and have some problems that I am no different from anyone else. I would also like people to learn that drinking while they are pregnant is really bad. Also drinking while you are pregnant can cause a lot of family chaos. Just please don’t do it! Thank you.

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