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 Vicky #30 – 90 Real People. Real Lives. #FASD

We are doing this Vicky and TODAY is your day — You are runner number 30 – Thank you so much for sharing your story and stepping out to run with Mac!

MEET VICKY – I grew up in the foster care system and no one talked about FASD openly so I did not get much intervention until I was an adult. That is very sad as so often I did not know what was going on and became angry. As I grew older I found people who wanted to learn about my challenges and help me. I’m so grateful for that.

MY STORY – I am not sure when I was diagnosed but I was in foster care from when I was 18 months old till I was 18. Back then FASD wasn’t something anyone openly spoke about so I didn’t get much intervention. I grew up being a very angry person cause I could understand what was going on most of the time. As I grew older I found people who wanted to learn and help me. These good people did a lot of work with me and I’m so grateful for that.

STRENGTHS – I am good at sports. I am also kind and careful to others

STRUGGLES – I have a big difficulty handling change. I have to know what is going on and if I don’t I spin out of control and get angry. My anger can be a real struggle and it gets in my way some days.

MY WISH – For there to be more help and support for people FASD.

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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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29 days of #FASD Love Bursts from Liz Kulp – Day 13

Happy Saturday – Love Burst from Liz
13_Love-FASD
I learned as a little child it was better to tell the truth. Mom and Dad had a “TRUTH TABLE” at our house and when I did something wrong they made it easy for me to tell the truth by having the truth table. All I needed to do was ask for a counsel and I could present my case and turn myself in. When I did that – they would ask me what I thought I should do about it. And that’s what I had to do. If they caught me not telling the truth I never liked the consequences – I would rather be able to learn to figure it out myself.
When I was 13 I wrote The Best I Can Be Living with FASD and there is more information in there to help you understand what I thought about it when I was younger.

Shoutin’ Out About the Realities of Fetal Alcohol

I am so proud of my A-Team who worked super hard all day shouting out about the realities of FASD in the life of adults living with these challenges.

We passed out 100  – 049 MOFAS chapsticks – got lots of commitments for Baby Showers and Sobriety Pledges, met a great group of men really interested in making a difference in supporting women, talked with a restaurant interested in hosting Baby Showers for 049 in 2013 – and hundreds of other wonderful people.

Great job A-Team! See ya’ll tomorrow at the Minneapolis Convention Center Health Life Expo…

Want to join us… You can come FREE — just bring something for the food shelf!!!

When Budget Cuts Create More Fail Firsts

There is no doubt that funding cuts are necessary,
and everyone will have a special program to address.

As a parent who has volunteered thousands of documented hours to MNASAP and daily provides 2-4 unpaid hours to adoptive families in crisis with tough kids I need to note that the infrastrucure these organizations provide me allow for efficient additional access to parents with children in crisis or handling complex issues. Families who adopt our Minnesota Waiting Children and Foster Families need supports to do a larger than typical life job. Behaviors due to genetic factors, prenatal factors and complex early life experiences are compounded when children are moved from family into new or established temporary family. These programs hired experienced, trained adoptive parents across the state to provide support, parenting skill development, and referrals to adoption-competent professionals and other community-based services to stabilize adoptive families and it was a place I could direct a family spinning out to gain parent to parent support – or be referred to trained and skilled professionals,

It has taken 10 years to get where we are today.
My daughter (diagnosed with fetal alcohol brain damage at 12.5 years) is in the first generation of this care – (one of the first three high-risk legal adoptions in 1986 – a foster baby at five months adopted at 14 months) She lead a successful life as a teen – graduated from high achool and passed her basic standards with a 70 IQ. This success happened because there were other organized families that surrounded us with ideas, compassion and directives to appropriate healthy supports. Other families we connected with who laughed and cried with us in this journey – developed friendships for respite.

Challenging children need safe places to play with caregivers who understand their issues. This is a chicken and egg issue – one could place blame on the child, or the new parents, or the system, or the original family. One could state this is an inappropriate funding priority that needs to be slashed. OR one could say that this system is working for families and children and because of this program we are seeing less complex issues arise. Our infrastructure fell apart when she reached 18 and aged out of supports – just as it has for so so many of these kids.

My recommendation, and I am but one, would be to increase ASAP and Harambee funding to develop an continuing adult program so that transition to adulthood is smoother and successful. Minnesota has been a leader in this area – these are the most vulnerable of our children – tough on the outside and fragile on the inside.

I challenge you to:
1. check the number of adoptive children (or previous foster children) in adult mental health
2. check the number of adoptive children (or previous foster children) who are incarcerated

CHECK THE COST of our adult failing infrastructure and it will give heed to what is about to happen to the younger age group also. Please look carefully at this issue. The answer is more complicated and it is perhaps because this sytem is working you do not see the total possible fallout. Parents are beginning to call and rely on other parents that is a real outcome, they also seek professionals when the issue become greater than what they understand.

In this time of economic trauma our young people suffer, our children suffers and our country suffers. The cost of adoptng a traumatized child is great. The cost of not allowing a child to have a healthy family is greater.

MN ASAP and Harambee have been instrumental in keeping families together – Personally I want to congratulate them on a job I hope they continue to do well.

Jodee Kulp
Director of
http://www.betterendings.org/
http://www.toolboxparent.com/