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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3 thoughts on “Meet Toya – #5 of 90 Real People with #FASD

  1. Thanks for sharing your story Toya. Like you my daughter has ARND and I suspect a very high IQ. She’s one smart cookie. In fact all the children I’ve met so far with FASD/ARND have been bright and articulate. It’s just some part of the brain that are damaged, not all the brain. We don’t call people with dyslexia mentally retarded yet often there at similar traits with ARND. It makes it harder as a parent in some ways to try and understand just what our children are capable of and I’m learning to accept it’s a wait and see but reach for the stars approach. Hopefully as awareness increases and more research is done education for children with FASD can be more tailored and supported to help everyone reach their own personal stars. Xxx

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