I asked for feedback, in my original post on this subject ,and I got quite a bit. If you haven’t read that one, you might want to read it, before you read this one.
https://parentingfasdkids.wordpress.com/2013/04/25/fasd-and-all-of-its-brothers/
Ok, I am going to list some statements that represent the feed back, that I received from viewers:
1) We cannot leave the word “alcohol” out of the diagnosis, as it is the source and a statement to the world that drinking in pregnancy is dangerous.
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2) Most birth mom’s do not admit to drinking, so it is almost impossible to get a diagnosis of FASD for a kid who has it. So using the term FTBI does explain what my child is dealing with, since he was born with brain damage.
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3) We are just starting to make headway with the world about the dangers of alcohol, we can’t give up on that, though I see the value in terming it a TBI when so many kids are seen as having behavior issues that are blamed on their environment.
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4) I so agree with this. It would be possible for my son to get some support without all the drama.
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5) Our school does not get that our kids can have a high IQ and yet still not be able to function to the level expected. They don’t “GET” that alcohol in utero could do that.
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6) As a person living with FASD, I feel that if there is a stigma involved we have to be the ones to go out there and meet the challenge to show that we are just people too.
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7) I agree that it might be good to have Fetal alcohol spectrum disorders categorized under the umbrella of brain injuries, b/c just like with the TBI there is no cure, there are only adaptations or Accommodations, and medications for the secondary disorders.
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8) I’d say move on forward with this… I call the adults living with the challenges of FASD – Life Experts
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4) So that we would understand that there isn’t a cure, only adaptations, accommodations and/or medications.
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5) So that our kids with FASD are not stigmatized.
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6) So people would understand that their behaviors are brain injury related and not environmental.
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BUT one very BIG point that I got in the feed back, WE CANNOT leave out that alcohol is the cause here and the message that drinking is very dangerous in pregnancy.
Sooooooooo I was thinking today about an addition to the acronym FTBI. How about AR-FTBI?
Alcohol Related- Fetal Traumatic Brain Injury.
Does this make a stronger statement then Fetal Alcohol Spectrum Disorder?
Do you think people will “Get” our kids more if we have the TBI in the diagnosis?
Having Alcohol Related Fetal in there, includes the reason, but the person who doesn’t want to carry the stigma can still just state that they have a TBI for more understanding, compassion etc. from teachers, bosses, out there in the world.
How much more real this would sound, then telling them they have FASD which to the largest part of our population means “Oh you are blaming your problems on alcohol?”
I mean, “I DRANK WHILE I WAS PREGNANT and NOTHING HAPPENED TO MY KID” That is the response I have often heard OR, the French drink daily, but their kids are ok! Are they?
So today I told my friend, Ann, that I want to call it AR-FTBI and she ended up in a conversation with her daughter’s case worker at the group home where she lives. She has never been able to get this woman to understand her daughter, so she used this terminology. She told her that her daughter has an Alcohol Related Fetal TBI and guess what? That woman said, REALLY? And she all of a sudden “GOT IT!” What has taken her years to try and get this woman to understand for her daughter, just clicked.
She responded to Ann, “You mean it is permanent?”
TOUCH DOWN! Well most of us parents hate using that “P” word, (permanent) , as we don’t want to limit our kids, but we sure do need to get others to understand that at least for now, and a long time from now, our kids CAN’T, not WON’T, BUT are not doing this on purpose!
I welcome feedback on AR-FTBI Alcohol Related- Fetal Traumatic Brain Injury.
I know full well that I am not going to change a whole diagnosis with a blog post, but I am going to advocate just the same. If you cannot get your child diagnosed with FASD, maybe one day there will be this option.
If you cannot make others understand what your child is dealing with, maybe explaining it this way will help.
If your child does not like being labeled ALCOHOL, maybe your child can choose to use TBI, as it is the truth.
Thank you Lord for helping us, help children, who have Alcohol Related- Fetal Traumatic Brain Injuries.
Terry Quinn
kidznlildogz@aol.com