Meet Anna – #35 of 90 Real People. Real Lives #FASD

MEET ANNA – Anna is an enthusiastic 14 year old who loves playing Barbies and is currently saving her money for a real looking baby doll.

STORY – Anna has partial Fetal Alcohol Syndrome.

STRENGTHS – She tries hard and often does well playing with younger children. Anna loves her cat (she named him Justin Bieber!) and her dog, Ziggy. She has 5 older brothers and sisters and she has 3 nieces who look up to her and love to play with her. Anna is a blessing to all who know her!

STRUGGLES – With school and making friends.

 

WISH – Anna wishes she would find a friend.

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Meet Emily – #32 of 90 Real People. Real Lives #FASD

MEET EMILY — Emily possesses a passion for sharing her personal story, the story of so many, a story worth being told. She travels internationally educating and advocating on behalf this 100 percent preventable pandemic.

She has served as a member for SAMHSA’s Fetal Alcohol Spectrum Disorder (FASD) Center for Excellence Expert Panel. Currently, along with two other individuals with a diagnosis along the spectrum, Emily is conducting research collecting data on the physical ailments that arise in adults with an FASD diagnosis, a lifelong, full-body diagnosis.

Emily is a founding member of the first national self-advocacy network, Self-Advocates with a Fetal Alcohol Spectrum Disorder in Action (SAFA). Though she was born addicted to alcohol and cocaine and had marijuana in her system, and though doctors told her adoptive parents she likely would never make it through school,

Emily graduated Summa Cum Laude, ranking number one of her graduating class. She earned her bachelors of Science majoring in psychology and counseling, minoring in Christian ministries. She volunteers her time at a family care center as a counselor. She has held many pageant titles, including Miss Illinois Outstanding Teen 2008, garnering the overall talent award with a classical piano piece, and has worked as a model for a QVC makeup line. Every year, she travels to Monterrey, Mexico where the children of La Isla steal her heart.

In her spare time, she enjoys playing Native American flute and has one daughter, a Yorkshire terrier named, Willow.

With faith playing the key role in her life, her main message aside from FASD is 100% preventable, is that she believes God has always had something bigger for her and for YOU despite a diagnosis and despite our weaknesses. It is in our weaknesses His strength is perfected, His glory can shine through, and we can be a beacon of light and hope for others.

If you are interested in having her speak at an upcoming event or conference, please contact her at: missilteen08@yahoo.com

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Meet Marissa – #31 of 90 Real People. Real Lives #FASD

Day #31 of our International Relay race is going to be more than just running – Marissa and Mac are going to tumbler their way around the world building FASD Awareness. Go TEAM!

MEET MARISSA – Marissa loves crafts, reading and watching her YouTubers. She won 2 gold metals at our finals for Special Olympics in gymnastics this year! She is currently making beautiful friendship bracelets. She’s a generous soul and gives everything away! Ha! Including the cash in her mother’s purse. LOL!

MY STORY – Born addicted, detoxed in the NICU. Found her forever family when she was 7 months old.

STRENGTHS – Sweet nature, loves animals and people, such a helpful girl!

STRUGGLES – Activities of daily living, understanding boundaries.

WISH – To be a vet tech!

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Meet TJ – #6 of 90 Real People with #FASD

It’s Day Six of our 90 Day Count Down to September 9 – And Mac been looking for courageous kids to stand with him in making a difference. Kids and their families are stepping up with their support and red shoes to share their lives. A Big THANK YOU! We’re loving the action. People are out strutting and jumping and rolling and climbing with their RedShoesRock.

Meet TJ – TJ is a fun teen with a big heart. He loves playing with his lizards and doing science projects. Like many teens he has dreams of getting a car, learning to drive and getting a job so he can grow to have his own apartment.

My Story:  Premature, born to parents who both struggled with substance abuse and mental illness.  Removed and placed in the system and placed then with aunt who became his forever family.

Strengths:  He loves to garden.  He loves trains.  He loves science projects and dinosaurs and playing with his lizards.  He loves helping people.

Struggles:  He struggles with full FAS, speech difficulties, sensory issues, fits under the Autism Umbrella and is bipolar.  He doesn’t understand why people are mean to him.  He is very concrete and is a highly verbal young man who doesn’t understand abstract but lives in a world of black and white.  He has a big heart and is very easily mislead and no one is a stranger.

Wish:  That he is allowed to get his own apartment and go to work.  He wants people to know even though he is very verbal he is often misunderstood by those who he parrots.  He hopes someday he can drive a car and get his license.  He wants to go to work and get a pay check.

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Meet Toya – #5 of 90 Real People with #FASD

Day Five of our 90 Day Count Down to September 9 – And Mac has been busy collecting friends and sharing them. We are so appreciative of each of you! We’re loving the action. People are out strutting and jumping and rolling and climbing with their RedShoesRock.

MEET TOYA – Hi, I’m Toya and I was born in Sacramento California on July 4th 1995. I was 1 pound and 10 ounces at birth and I was born to an alcoholic. I am now 20 about to be 21 in just under 3 weeks from now and I have an FASD diagnosis of ARND (alcohol related neuro-developmental disorder). I have a learning disability in math but my IQ is well into the gifted range (above 140).

MY STORY – I was born prematurely, went through many foster homes, experienced abuse and neglect prior to age 5, I also had 3 failed adoptions, and have been in residential treatment centers as well as in juvenile detention centers. Growing up with FASD has indeed been a challenge, but it’s also been a gift because I am a success story. I have a part time job and I attended college for a while but got stressed out but I do plan on going back.

STRENGTHS – I don’t let my disability define me, I am good at many things including singing, writing, art, empathy, and I never judge anyone.

STRUGGLES – FASD, certain social skills, executive function/impulse control, dyscalculia (math disability), PDD-NOS (closer to Aspergers), ADHD, RAD, sensory issues, and certain abstract material is difficult for me and certain things may need to be broken down for me so that I can process them better.

MY WISH – For people to understand and not judge, for people to not assume that just because I look and can act neurotypical, that I am not neurotypical. (That can be really frustrating). And to be treated the same as everyone else.

WHAT I WANT THE WORLD TO KNOW!

OK, so I have a pet peeve about the way that people refer to FASD (fetal alcohol spectrum disorders). They have said that it’s the most common cause of mental retardation (which is an old term still floating around the universe) or low IQ. The reason that it irritates me is that they say that is because most of us have an IQ that is either average, above average, or even gifted/very high. Some with FASD may indeed have MR/ID but most of us don’t. That is a stereotype that brain damage of all kinds inevitably lead to a low IQ which is extremely inaccurate. Those of us with FASD usually have a learning disability but mental retardation and learning disability are two very different diagnoses. Many individuals with learning disabilities have an IQ above 90 and can even be intellectually gifted. So please, anyone who hears people say that about those of us with FASD, don’t assume that just because we have an LD or brain damage, that we have mental retardation because chances are, we have a normal or above normal IQ. Thanks, Toya.

You don’t know what it is like to be me…

You have no idea what it’s like to be molested and raped before the age of 4.
You don’t know what it’s like to be in foster homes from the age of 4 to 20.
You don’t know the pain of feeling unlovable and unworthy of love.
You have no clue what it’s like to be 5 years old and move from foster home to foster home 6 times in a 7-8 month time frame.
You don’t know what it’s like to experience 3 failed adoptions as a young child.
You don’t understand what it feels like to have 2 parents who were/are completely unavailable to you all of your life.
You don’t know what it’s like to feel like something is missing in your life.

You haven’t been through the extensive childhood trauma that I went through so you’ll never truly understand. I hurt and push away other people because I’ve been hurt sexually, physically, and emotionally. I have put up a wall just to protect myself from further hurt. I’m not bad, I’m just living everyday with the memories of my past and it haunts me daily.

You haven’t lived my life or walked down my path, so don’t judge me.

EXCERPT FROM CDC WEBSITE (Read more at Centers for Disease Control and Prevention)

Types of FASDs

Different terms are used to describe FASDs, depending on the type of symptoms.

  • Fetal Alcohol Syndrome (FAS): FAS represents the most involved end of the FASD spectrum. Fetal death is the most extreme outcome from drinking alcohol during pregnancy. People with FAS might have abnormal facial features, growth problems, and central nervous system (CNS) problems. People with FAS can have problems with learning, memory, attention span, communication, vision, or hearing. They might have a mix of these problems. People with FAS often have a hard time in school and trouble getting along with others.
  • Alcohol-Related Neurodevelopmental Disorder (ARND): People with ARND might have intellectual disabilities and problems with behavior and learning. They might do poorly in school and have difficulties with math, memory, attention, judgment, and poor impulse control.
  • Alcohol-Related Birth Defects (ARBD): People with ARBD might have problems with the heart, kidneys, or bones or with hearing. They might have a mix of these.
The term fetal alcohol effects (FAE) was previously used to describe intellectual disabilities and problems with behavior and learning in a person whose mother drank alcohol during pregnancy. In 1996, the Institute of Medicine (IOM) replaced FAE with the terms alcohol-related neurodevelopmental disorder (ARND) and alcohol-related birth defects (ARBD).

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I Will Never by Vicki Brewster, May 21, 2004

I Will Never
I will never have the children I dreamed of adopting-
But I do have the children
God planned for me to adopt.
So I will adopt new dreams
for my family and children.
I will never be able to be the mom I want to be.
But I am “their” mom
So I will be the mom they need.
I will never have a “normal” day – one without meds,
doctor appointments, therapy, IEP meetings.
But I do have normal moments.
So I will learn to savor the moments
and take each day as it comes.
I will never be able to assume my children can
follow the simple rules, act appropriately,
understand the consequences of their actions,
or be safe.
But I can surround them with a support system
who will think for them,
remind them of the rules and consequences,
and keep them safe.
So I will be their external brain.
I will never know what my children could have been.
But I can celebrate the wonder of who they are
and what they can become.
So I will give them all the love, support,
encouragement, and the tools they will need
to become productive adults.
I will never be able to change the fact that
the birth mother drank during her pregnancy.
But I can forgive.
So I will not condemn, pass judgment or hate her.
I will never forget the damage that alcohol has done
to my children’s brains.
But I can make a difference for another child.
So I will share my knowledge and experiences
as often as I can.
I will never see another child screaming in a store
and just assume he’s misbehaving due to poor parenting.
But I can sympathize
with the stress and frustrations of meltdowns.
So I will smile
and offer words of encouragement and support to the mother.
I will never hear another horrible news story
about a child in trouble with the law
and not wonder – was he FASD?
But I can pray for them and their families.
So I will pray for the ones in the news
and the ones we don’t read about.
I will never know a bigger joy
than watching my children master a new goal,
remember a rule, or sleep thru the night.
But I can lower my expectations of them and myself.
So I will celebrate with them
every mountain climbed and hurdle crossed.
I will never have a day that is not wholly consumed
with the results of a woman who drank during pregnancy.
But I can raise the community’s awareness,
education and support
of this totally preventable birth defect.
So I will.
So I will.


True Commitment – Fetal Alcohol is NOT who I am!

CLICK TO PURCHASE

Liz Kulp founded the FaceBook Group for adults and teens living with the challenges of FASD. Her group is called Striving for the Best Ability – Living with FASD not letting it defeat me.

If you know a teen or adult who needs positive – faith based input – check her site out! I’ve learned so much from my daughter whose life is affected by Fetal Alcohol Spectrum Disorders (FASDs) — Author, Liz Kulp, celebrates life at age 27. She is a published author of two books and winner

Braided Cord Tough Times In and Out

  • Mom’s Choice Gold Award – Adult Non Fiction – Life Challenges
  • 2012 USA Best Books – Health -Recovery and Addictions.

Best I Can Be Living with FASD (Revised 2013!)

  • Mom’s Choice Gold Award – Best Contributing Young Author
CLICK TO PURCHASE

Congratulations Liz on Four Years of Sobriety and Five Years of Living Independently! You are achieving your dream of making a difference in your generation to prevent FASDs! Blessings on beginning the career of your dreams this year!
Mom’s Choice Gold Award – Non Fiction – Life Challenges

TO VISIT LIZ’S WEBSITES
 www.BraidedCord.net  or www.BetterEndings.org
TO ORDER HER BOOK  https://www.createspace.com/3436934
TO VISIT FASD BOOKSTORE www.fasdbookstore.com

To read more from Liz’s book click here

Committed to each other for a life
worth living – walking the road
of FASD together

True Commitment
(Poem circa 2008)
By Liz

Alas I sit,
glued to a place of undoing and unmaking
of all the mistakes I have achieved
or contemplated making.

Waiting for renewed independence.
Proving to you who I am
and who I can be
and who I shall become.

No longer broken, but bent
Bent upon making a difference
with different choices and
new becomings
Reframing my thoughts
and laying down my rebellion
to fight for a future
instead of wants I thought
I so needed but didn’t
An though committed by a decree
that states I am an “other”
in need ot care and watchful eyes

I have learned what commitment
truly is – that it is the love
of family who remains
hopeful and helpful
that it is the love of
my sweetheart who
stands true
that it is a belief in myself
that I can do and be better
and emerge from
a state run commitment
to a self formed commitment
of being true to myself
and all of you.