FASD and all of it’s brothers?

Posted: April 25, 2013 in 2013, FASD and all of it's brothers?, Raising Hearts

As a parent of two young adults with FASD, it has frustrated me to no end, how difficult it is to get our world to understand this, or even believe that it exists!

How much MORE frustrating it is for my kids!  How embarrassing it is for a kid to think of themselves as ALCOHOL damaged.  The stigma is huge!  They were HARMED when their birth mom drank.

 The person who drank and harmed their child is also stigmatized. That person cannot admit to what they did, or the world will crucify them! Even though they often had no clue how dangerous it was to drink.

How can we get the world to understand FASD, not stigmatize it, and find a place where our kids can fit? Our kids need services, understanding, acceptance

Well for starters, what are we going to call this?  It currently has several titles which can alone be so confusing.

1) FASD Fetal Alcohol Spectrum Disorder, ‘

2) FAE Fetal Alcohol Effects

3) FAS Fetal Alcohol Syndrome

4) ARND Alcohol Related Neurological Disorder

Our kids have Traumatic Brain Injuries and often due to poly-substance.  Prescription drugs, street drugs, alcohol and pot can make the mix.  We are not calling it PSSD Poly-Substance Spectrum Disorder. Why?  Alcohol is the worst culprit and others can slide off as mild. However I have a son who was supposedly only effected by prescription drugs due to birth mom’s mental illness and he has memory deficits, sensory processing disorder and ADHD. He was effected.

 Simple lack of oxygen during the birth process can cause a TBI. There can be many causes for brain injury before, during and right after birth.  Simple psychological’s and neuro psychologicals’ both can test neuro development and executive functions. Cognitive delays can be found.  

When a child appears able, but absolutely cannot, without help, they are brain injured. What a relief it was to me to figure this out. So many areas I expected my children to be able to function, it wasn’t because they were being stubborn and refusing, but they honestly could not perform these tasks, due to their brain injuries.

 How awesome it would be if they had a diagnosis that understood this and helped them to tell the world what they struggle with, without using the term alcohol. Then others would not look at them like they had ten heads,  are mentally ill, or even worse, WRONG! I mean, so many people deny alcohol can be dangerous. So how can this be true? You are making a big deal out of nothing? What a slap in the face that is to a person who has a TBI!

  Everyone needs to be accepted, understood, loved, and have purpose on this earth. No one likes labels that make them feel victimized, or bad.  Even the term MR is a negative term for it. Some do fit in the MR catagory, and for those, how much better would it be if they could have a brain injury, not a demoralizing brain NAME.

Of course there is another factor here. Alcohol and other substances also can effect far more then the brain. Many FAS children have lung difficulties, endocrine issues and more.

BUT the real biggie that hits across the board with these kids is the brain injury. Often they have executive function delays with normal IQ’s. People see the normal IQ and cross them off the list for services, understanding and help.  This leads to low self esteem, depression, frustration, pain and often raging.

The luckier ones have a low IQ?  Well NOT, but they are the ones that get the diagnosis and possible services.

We need a title for these  neurological-neurodevelopmental  disorders that covers all the basis and yet does not stigmatize the person who has it, nor the birth parent.

 Our children have been victimized enough!  Their world is tough to manage!  They are often seen as normal individuals who are expected to be able to do things that they cannot do.

 They very often need an external brain for life. 

Why are we victimizing them further by labeling them alcohol damaged?  Because no one has thought about anything different?

It is the elephant in the room, but if we look further at the most basic brokenness, they have a BRAIN INJURY!  They have a brain injury that occurred in utero. They present the same neurological findings as folks who have traumatic brain injuries from accidents.

They have a brain injury that can be caused by alcohol and other substances. Even cigarette smoking has been linked to lower IQ’s in children.  

 Why can’t we call a spade a spade? Because it happened before they were born?  

OK then, Call it FETAL TRAUMATIC BRAIN INJURY!!!!  FTBI………….WOW!  This takes the victim out and puts in far more understanding then the drug alcohol. Our world cannot see the danger in the teratogen alcohol, but they would understand the words BRAIN INJURY.

 OH FASD world, give me feedback. Do you feel the same way as I do? Do you think that there should be a proper diagnosi  for our kids to fit into that takes out the victim and stops stigmatizing them?

 Oh LORD HEAR OUR CRY!!!  WE need to get understanding and acceptance for our kids. So many more are becoming victims daily. We can’t shove this under a rug forever. It needs to be recognized. As long as it is stigmatized, it probably won’t get due recognition and understanding.

 Can we use a different set of letters? FTBI?

Terry Quinn

kidznlildogz@aol.com

Comments
  1. Savanna Pietrantonio says:

    I totally agree with your logic and your compassionate response to the label and stigmatization!! I am of normal IQ and I do not have facial features of FASD. I did not receive help till I was 35. this delay almost quite literally killed me.
    Still I have to advocate for myself and I had to save my own life. I have not come across in all my years, any professional in a position to help me that knew about, understood or believed me or in FASD. I had always felt like a worthless, needy, dumb, defiant, rebellious, mentally ill person until I made a resignation to be true to my soul, live my truth and be proud of what I can do. I still feel like a “dirty little secret” & their are those who I just cannot tell as they would not believe me (my family doctor included). I live with my external brain and am successfully dependent. I challenge myself everyday and work really really hard to make sure FASD works for me not against me. ,
    Thank you for writing your article and being our voice!

    • Savanna, Wow you have so touched my heart in your description of what it feels like to suffer with FASD and not have support or a medical diagnosis. It is my heart cry that more people that deal with this will get help/services and not have to suffer as you have.
      However you blessed my heart so much in that you have shown your awesome strength and beauty of your soul. Thank you for sharing with me. hugs, Terry

      • Savanna Pietrantonio says:

        Oh thank you Terry! Its me who is tearing up now! I am truly grateful for those who do not have FASD who fight the stigma and fight to be heard for themselves and on our behalf. (LOL it is only now that I have been able to read the website name-when the letters are all connected I usually can’t interpret it.) So I am very glad my comments might shed light as I was apprehensive about already having posted on a website for parents of children). Thank you for your supportive comment!

    • gj04 says:

      Savanna, your comments are so what I needed!! I have been searching for insight into your age group–my daughter is now 38, she’s very bright but resistant to the “external brain” concept–and wish she could meet you… Your words, your life, are a godsend.

      • Savanna Pietrantonio says:

        I’m so glad my experience could help someone. I believe there are many gifts that come with FASD if you know how to see them. I’ve just begun. It starts by seeing yourself being yourself. An awareness that sometimes can only come with age. She is the age I was when I started to see how what I was doing wasn’t working. But I didn’t know how to help myself. There is a page on Facebook that would accept you and your daughter called Flying With Broken Wings. I would gladly give you my email address if that is acceptable on this site. I know this: never give up and never let her give up. I didn’t let the people who wouldn’t or couldn’t help me stop me from living a purposeful and beautiful life. i know you want that for her and in her soul, she wants that for herself too!

  2. Patrice Mishaga says:

    I just found this blog and THANK GOD!!! I have been struggling for years to get my son ( now 17) the help he needs. His services have been fragmented because, as I have come to realize, he is being treated like other kids with learning disabilities. I cannot get people at the school to unrest and that what he has is different! I’ve been trying for years to get him into a program at a local hospital called “the Brain Injury Clinic” and told he doesn’t qualify. I feel so alone and frustrated and angry! Like you said, lets call a spade a spade. His brain is injured. Damaged. If someone would actually look at his brain they could see the damage!

  3. Joanna says:

    I agree FTBI would be better for all involved. It makes sense.

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