#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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