FASD and all of it’s brothers? Continued…

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

 It is Brain and Body Injury.

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9) It’s very hard to be a one woman army. Taking on the acronym is a complicated battle given the AMA and the CDC never mind all the other organizations. It’s been FAS, FASD since 1973 (Ann Streisguth research) and probably before, but it’s unrecognizability lies in it’s greatest problem…the stigma. I’m not sure that whatever you call it won’t just be swept under the rug in the same manner. It’s a stain on the human experience. It’s weakness, though you and I know that it’s illness that causes one to drink. It’s ignorance, though you and I know that the medical field isn’t committed to sharing its truths, that drinking during pregnancy doesn’t cause harm. It’s a boatload of “stains” of the flaws of being human, which we all are….but no one wants to admit. I think that Nofas has had this huge obstacle and challenge in getting to a tipping point on awareness because of all these reasons…and of course, money….pacs, and other supports of the alcohol industry. It’s a tough nut to crack. That is not to say that I am not optimistic that it can be cracked, but like the environment….it takes more than one prius owner to save the planet. We ALL need to make noise. We ALL need to make a commitment. We ALL need to tell our stories. Our FASD affected need to speak up- which is hard, of course…one becuase many of them don’t have a voice and two because many of them are undiagnosed. And there, goes the rub. Right? So where is the shift most apt to happen? In the awareness? In the ability to get a diagnosis? If it looks like a rose and smells like a rose, it is a rose?! Keep on doin’ what you are doin’! You are creating thought…thoughts are things. Things create movement. Leaders are born…not made. Movement will create change. You are doing great things….don’t get discouraged, I have a feeling we might not see it in our lifetime…but let’s pray our children see it!

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10) 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.”….. more than the lable, the above is my issue; no one accepts their limitations, especially if they have a normal IQ. they expect the impossible for them and punish or denegrate them for not acting “normally”; then we get depression, anger, frustration, low self esteeem, and they no longer believe in themselves. You may as well punish a paraplegic for not running the marathon. Sorry this really angers me; I have five children with FASD, and yes, TBI is a much better description because then people might accept their limitations and work with them and their parents and empower them to succeed.

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11) In all of my 30 years of working with FASD, with children and families affected by it, and with researchers and experts in the field, there is universal understanding and no denying that this is brain injury. In addition, there is a high degree of sensitivity about the stigma associated with the source of the brain injury being alcohol for both the affected child and, particularly, the birth mother. While unfortunately bearing the associated stigma, there exists some sense of relief in finally finding and understanding the root of the cause of the brain injury; that is, “I am not purposefully a bad kid;” “we are not bad parents.”

Yes, we do need a non-stigmatizing term, but we cannot ever lose site that this brain injury is 100% preventable, and that we have an obligation to educate everyone, particularly pregnant moms and dads, that there is no known safe amount or no safe time to drink alcohol during pregnancy…not a single drop.

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Ok, so in the mixture of feedback, I get some really clear points. We NEED something different like Traumatic Brain Injury because:

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1) So many cannot get the diagnosis of FASD, due to not knowing if maternal mom drank

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2) So many people do not understand FASD where they would TBI.

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3) Kids with high IQ’s, but low executive functions could be understood.

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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