Meet Natalie – #18 of 90 Real People with #FASD

MEET NATALIE – Once you meet her you never forget her. She has a heart of gold and forever a large smile in place. That smile is her shield. No one would know that behind that smile she fights daily to hide, to keep at bay the trauma that is forever trying to control her and make her go out of control. That trauma has a name. FASD! Natilie’s wish is to not be feared as she learns to live with FASD, to be loved and accepted.

NATALIE’S STORY – Prenatal exposure to Alcohol. Early neglect.

STRENGTHS – Natalie excels in Maths, Sports, Arts, Gymnastics, Dance, Anything Multi Media Creative, Blogs, Vines….

STRUGGLES – pFAS, sleep difficulties, abandonment issues, OCD, ODD, ADHD, SPD, PTSD, Black Rage & violent Meltdowns, Has no fear, expressive language issues, struggles with social skills

NATALIE’S WISH – Natalie just wants to be loved and accepted for who she is, and not feared for what she is capable of doing. To not be loud or lose control. To not get so mad she hurts the ones she loves but can’t remember why?

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#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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Literal Language Interpretation – #FASD #ASD and the Other Ds

What we say matters!

Dee and Holly

“You’re in the dog house.”

Guest post from Ann Yurcek
For more blogs by Ann visit http://annystribe.blogspot.com/2013/11/literal-language-and-misinterpretations.html

When I tell my daughter she is in the “doghouse”. This is what she thought. I did not say that she is in TROUBLE.

For my kids with special needs the English Language and its abstract meanings of words can be confusing.  Think about all the different interpretations that we simply understand that “throw” our kids.

That last part of that sentence would cause my kids to stop and look at me with confused expressions. No,  I would not “throw my kids” as they would think I just said.  But we understand it as an expression.

Language Comprehension/Auditory Processing Difficulties


Characteristics: Children with Asperger’s Syndrome, FAS, some with Noonan Syndrome and other developmental disabilities generally interpret auditory information literally and concretely. They can have difficulty understanding figurative language, jokes/riddles, multiple meaning words, teasing and implied meanings.

Children are literal thinkers, meaning that they interpret words at face value. Children need correct information given in concrete language. For kids/teens/adults with Autism, FASD’s and other special needs they remain a literal thinker just like younger children. It will not be apparent until mid childhood when they do not move on to understanding more complex auditory and abstract meanings of speech.

So many things can be a set up for confusion or even disaster. They will follow the instruction to the literal meaning and sometimes that may have repercussions or consequences and it will end in a blown up rage because they did what we said.

The first time I noticed anything with our adopted sib set was I told  them we were going to “RUN ERRANDS”. They did what I told them, they ran in the grocery store, they ran in the mall, they ran in the parking lot. I asked them to walk and one of them told me I told them that I told them we were going to RUN ERRANDS make up my mind?  It took me a few minutes to understand that I did say “run errands” and had to correct my instructions.

I knew what I had done because Miss Becca with her Noonan Syndrome can be very literal and I had to teach her the double meanings of many phrases.  I told them to run and they followed my instructions.  From then on it was we are going to the store to buy groceries, to the mall to ….  and we walk in those places.

A mother said to her child, “Stop back-talking to me”. The child said, “I’m sorry Mom, I’ll talk to your front.”  A prime example of literal and concrete interpretation.

If said to a teacher said the same phrase to stop back talking and responded with the talk to your front statement, the teacher would think the teen was a smart A…. and consequence him with a detention. The teen would escalate because they would not understand that they offended a person in authority.

A friend today gave me the topic of the post when I was talking to her on the phone. She was with a little one who has FASD for the day.  They were at a craft fair and the little girl asked my friend when was the “Craft Show”?  They had already been through almost the entire auditorium.  My friend was taken a back and I explained her confusion.  She was thinking she was going to a show, like a play, movie, etc. I told her to explain that “the people who make the crafts are showing their things and selling them”.  It now made sense.  Later I talked to my friend and she had explained it to her  adult daughter who couldn’t get it, but then she explained that they think differently than we do.  A CRAFT SHOW would be a show about crafts. She figured out that she probably should have said a CRAFT Sale, and I said that she would probably even do better with  ” adding an explanation of a place where they sell crafts and things that people make”.

Recently my older daughter S… with Fetal Alcohol was told that she needed to take her meds for 30 days with only missing 3 doses a week and she wouldn’t need a guardian.  She made the 30 days and then thought she didn’t need to take them anymore.  She understood what they told her but they forgot to add the information that she needed to continue to take her medications and she had to continue to show she could do it in order to have an intervention.  In her way of thinking she did exactly what they told her. Then they went back on their word.

One of mine was in the teens and I said she had a stomach bug. She thought there were actually bugs in her stomach and she freaked out. Explaining that only caused further anxiety. I finally just said her stomach was sick and she finally stopped panicking.

When working with kids with FASD’s, autism, and other neurocognitive disorders it is very common for some of them to be very CONCRETE in their interpretations of what we say.  Talking simply and thinking about what we say can save confusion and mixed messages.

***I will add that kids who will often present with  delays in processing information auditorilly. Even though they may be able to comprehend the auditory information given, it may take them additional time to process this information prior to responding. They may also have difficulty following multi-step auditory directions.

I often tell Becca or Dee as part of something I said that I was just joking or being facetious, or sarcastic to make sure they connect what I was saying.  They understand that I was not being serious. Eventually they learned many of the double meanings or when we were joking and laughed even when they did not understand. Implied meanings really make them struggle because they are hard to explain because the rules and circumstances are more fluid and not consistant. My kids with FASD got the teasing much better than Becca with her autism and Noonan Syndrome.

So when I see my kids stare at me with those confused eyes, I wait to see if they get the little light bulb look at they just processed the information or they still are confused. I then rethink what I just said and explain it more simply and then I see that they finally figured out what I was meaning.

Strategies:

  • Auditory information/prompting should be kept to a minimum.  It is often too overwhelming for some children/adults. Visual cues should be used to assist the child to more readily comprehend directions, questions, rules, figurative language, etc.
  • Give the child enough time to respond, in order to allow for possible auditory processing difficulties.  Wait before repeating/rephrasing the question/directive.  Double check for understanding from the child’s perspective.
  • The adults in the child’s environment should be aware of the child’s concrete/literal interpretation of figurative language. We should help by providing concrete explanations.  We need to increase the child’s comprehension of figurative language skills, such as idioms, multi-meaning words, jokes, teasing, etc., through the use of simplified explanations.

Figurative vs. Literal Language

    When working with children/adults with FASD, autism and other processing issues. Speak slower giving them time to process, simply and concretely.  Watch for looks of confusion and misunderstanding and check for understanding with asking a question. Then explain again using more literal/concrete terms.

Use visual supports which helps them have the ability to independently complete tasks/activities and as always we need to show more and talk less with our kids/adults with auditory processing disorders.

One thing I have found highly effective with working with my teens and adults with auditory processing difficulties is to use their always present cell phone as a tool to help them be more independent. I talk less, I text more and thus they are highly successful and Mom is not nagging from prompting, prompting or explaining. They see it, they can do it, they can reference it if they forget and they can ask questions that simplify my responses.  It also cuts the processing time way down and it is done much faster.

Meet Anna – #16 of 90 Real People with #FASD

It’s Day 16 in meeting Real People with Real Lives living with FASD and while Mac was out searching for more kids he met Reuben’s sister Anna. She’s a really funny at great kid who adds sparkle to any day.

MEET ANNA – She is amazing! She is the funniest, sweetest girl around. Her big personality hides her invisible disability. Anna was born with FAS. She struggles with schoolwork, social situations and anxiety. But she does not let this get her down.

MY STORY –  Born to a woman with FAS and unable to parent, immersed in therapies and early childhood education with her new forever family.

STRENGTH – Her greatest strength is humor, this child is funny!

STRUGGLES – Her struggles are around school, socializing and making connections.

WISH – Anna wishes to be seen for who she is and not for her disability.

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#1 of 10 Steps to Know about #FASD

Thank you Ann Yurcek for stepping us through the 10 Things You Need to Know About #FASD – We are sharing this from Ann’s Blog

10 Things You Need to Know About FASD– #1 People with FASD have challenges due to no fault of their own!

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Day 13 and 14

My friend and I were venting about the unfairness of FASD. I was sharing with a friend one day about a conversation with Miss Dee who was talking about her FASD.  “Why did she and Mac not have the right to be born with healthy brains?”

How can I answer that question? She wanted to know “Why people made her feel bad that she had Fetal Alcohol Syndrome? It’s not her or Mac’s fault!”  Talking further, “I get in trouble for forgetting. I get told to try harder. I can’t learn like everyone else.”

She added, “Why do people not care about us until we are born?  “Why would anyone care more about having fun drinking alcohol than their baby? A loaded question.

Dee and Mac’s  birth mothers had challenges of their own and they had their first drinks long before they took their first breaths. Both mothers had learning problems, mental health issues and had substance abuse dependencies and both Mac and Dee have full fetal alcohol syndrome. I  have learned that they all have complex challenges and trauma.

Those who have FASD are innocent victims. Innocent Victims of being exposed to alcohol prenatally and further victimized by the lack of appropriate services. . Misunderstood and blamed for their hidden neurodevelopmental challenges.

There is no place for people on the spectrum to fit,  Mental Health Services, Developmental Disabilities, Autism, are the silos where they sometimes can garner support for their prenatally acquired brain injuries.  So many service silos require a fail first mentality, you have to fall so far to get any help. We need preventative early intervention services from birth on and a circle of support and understanding for life.

For the fortunate few, they kind of fit someplace. FASD needs a category all of its own. They fit on the DD if their IQ’s are low enough, or on the Autism Spectrum if they have enough social inadequacies or sensory issues, or on the Mental Health Spectrum when they have floundered and failed enough to fall into secondary mental health issues. People who have a Traumatic Brain Injury have a silo to garner services, but not FASD.  Services and understanding by professionals who understand FASD’s are hard to find and expensive.  It is said one person with full Fetal Alcohol Syndrome may cost over two million dollars in a lifetime.

How many people are living with FASD?  We do not really know.  From the CDC statistics, “based on community studies using physical examinations, experts estimate that the full range of FASDs in the United States and some Western European countries might number as high as 2 to 5 per 100 school children (or 2% to 5% of the population).”

How many kids are prenatally exposed to alcohol and are diagnosed under the Alphabet Soup of co-occurring diagnoses like ADHD, autism, bipolar, anxiety and learning disabilities?

Statistics of FASD. 

Why can’t we get diagnoses and help for those with FASD’s. It is a shame based disorder. Most will not get diagnosed to the root cause. It is OK to have ADHD, ADD, Autism Spectrum Disorders, LD  learning disability, or other mental health problems in our society. But to get diagnosed, there has to be confirmation of drinking alcohol during the pregnancy which then becomes someones fault. In our legalistic society, we blame the parents, we blame something for outcomes.  What parent is brave enough to admit they caused their child’s brain injury?  Some may not even know. There is conflicting information on how much alcohol is safe and up until recently, no dire warnings.  There are a few courageous Parents who love their child enough to admit to alcohol use but most who are diagnosed are not the families of origin. Foster parents, adoptive parents, kinship parents are in the majority getting diagnoses and that is never easy to find and get.

Causing FASD is not just a problem of chronic substance abusing parents.  It is a much larger problem. A women binge drinking before she knows she is pregnant prenatally exposes the baby to alcohol.

What we can do?  Spread awareness about FASDs and be supportive, caring and understanding to those who have FASD’s.

Anny

Meet Reuben – #15 of 90 Real People with #FASD

Welcome to Day 15 of our 90 Day journey to meet Real People with Lives living with the challenges of FASD. Mac needed some younger guys and went searching and found Reuben. He’s a great guy!

MEET REUBEN – Reuben was born premature, suffered cardiac arrest and a brain bleed. He was bathed in alcohol for 7 months while his little body developed. He was critically ill the first 3 months of his life. Reuben is a kind, gentle soul who does not understand the world around him. He struggles with relationships, school and making connections. He is a loving and hopes that he can be all he can be!

HIS STORY  – Premature, cardiac arrest, medically fragile for the first year of his life, diagnosed FAS at 16 months.

STRENGTHS – Includes loving heart, willingness to do what needs to be done.

STRUGGLES – full FAS, secondary ASD.

REUBEN’S WISH – To be with his family. He is currently in residential treatment where he is learning about relationships and connections.

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Meet Rebecca – #14 of 90 Real People with #FASD

MEET REBECCA – I am an adoptee who searched and found.I live with Fetal Alcohol Syndrome. I was diagnosed by a pediatric geneticist in Albanu New York. I WROTE A book about my journey: https://www.amazon.com/Tenacity-Rebecca-Tillou-ebook/dp/B01F31JYC

MY STORY – My name is Rebecca, and I was diagnosed with Fetal Alcohol Syndrome at 34 years old. Diagnosed with a pediatric geneticist who read my adoption story, read my struggles, and shed light on my “quirks.” FAS does not define who I am. It has lit a fire inside me though, and I have started on a path to Educate to Erase #FASD.

 

Rebecca-Baby

I am a woman, a mother, a wife, a full time employee at a job for 11 years. I am a runner. I am a friend. I am so many things, and I have FAS. I am NOT FAS. After my diagnosis in November 2014, I started looking for educational opportunities. I have had the pleasure of speaking on a panel of adoptees, birth moms and adoptive moms at the MOFAS conference in 2015. I got to tell my story and be inspired by others stories of struggle and hope. I was asked to tell my story to undergraduates at The College of Saint Rose in Albany, NY. I co-presented about FASD at the Adoptive and Foster Family Coalition in Albany, NY in 2016.

My campaign of educating keeps going. I recently published a memoir on Amazon Kindle. The title is Tenacity. (https://www.amazon.com/Tenacity-Rebecca-Tillou-ebook/dp/B01F31JYC ) It relays my adoption journey, and my journey through the ins and outs of FAS struggles growing up. I also have a Youtube video about my life with FASD. Another tool I hope many will use to educate themselves, teachers and doctors about FASD, and that there is hope for those living with an FASD. In the near future I will have a Blog up and running. It will tell my tales of “FAS” moments I have lived through. Many are funny, some are sad, and some are strategies I have found helpful in my daily life to keep calm and move along. So come along with me on my journey. Come and educate to erase FASD!

STRENGTHS: Intuition into subtle emotions, writing poetry running and being a mom

STRUGGLES: Impulsivity, handling money, understanding personal space, staying on topic

WISH:  Educate to Erase #FASD

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Meet Heather – #13 of 90 Real People with #FASD

Marching into Day 13 – we are meeting some extraordinary people. Heather reached out to us and said count me in. Thank you to all the adults who are standing tall in their Red Shoes Rock!

Meet Heather – Hi. I am Heather. She is passionate about helping others in Alcohol and drug recovery as she has 21 years of sobriety. Heather has a gift of gab and the ability to talk to people and make them feel better about their situations. Heather is a loving wife and homemaker and is very active in her community with homeless people and people in need.

MY STORY I was born in Bethesda Maryland in 1970. Always knew I was different in a very young age because I had to go to children’s hospital to learn how to walk at the age of 3. I was raised by my father and I didn’t see my mother until I was eight because she was in the psychiatric hospital for schizophrenia alcoholism and drug use. It was discovered at the age of 13 that I had severe learning disability’s and I went to boarding school for people with learning disabilities. At a very early age and started stealing and lying. This turned into more significant criminal behavior and in 1995 I got clean and sober. I was officially diagnosed at age 42 with fetal alcohol syndrome. I’m never been able to keep a job but I’ve worked for 20 years but got fired continually. Today have a good life I married him on house I do not work and I don’t have any children but life is very good.

STRENGTHS – My gifts are the gift of gab! I’m very compassionate and I help others in my community I take a special interest in people in recovery because I’m recovering addict myself 21 years.

STRUGGLES – I struggle with people still picking on me because I have cerebral palsy and I walk funny

MY WISH – Are that people and mothers would understand that fetal alcohol syndrome is 100% avoidable

I’m honored to be a part of the Red Shoes Rock thank you very much!!

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