Anyone on here have a child with FAS or FASD?

[Anonymous]

If so, when did you start noticing the signs - physical and mental?

What were the signs that you noticed?

When did you get a diagnosis?

How are things going?

[Anonymous]

Have two children (older adoptees) who have ND-PAE (neurodevelopment disorder due to prenatal alcohol exposure---the DSM term that replaced "FASD", "ARND" and "FAE")
We knew that our children had been exposed, but they had not been formally diagnosed prior to our adopting them.
Page 9 of the attached is a good summary of symptoms indicative of FASD. The whole booklet is quite helpful, actually.

http://www.fldoe.org/core/fileparse.php/7690/urlt/0070099-fetalco.pdf

I have to say that once we started treating it as a medical disability, things improved. That means meds for the ADHD, and other meds for emotional regulation (they made a HUGE improvement in the previously out of control tantrums). We have IEPs.

There is a wonderful Canadian organization called "Living with FASD" run by an adoptive parent named David Gerry. I have downloaded the materials from his 2013 and 2014 FASD summits, which feature a wide variety of doctors, therapists, parents, and other advocates for FASD diagnosis, research and treatment, and learned a tremendous amount.

The biggest risks with FASD kids is the secondary effects as they enter the teenage years---that's when the dysmaturity and lack of reasoning ability can result in substance abuse, poor choice of peer group, inappropriate sexual activity, etc. Early diagnosis and interventions are useful in ameliorating these secondary effects.

[Anonymous]

Anonymous wrote:Have two children (older adoptees) who have ND-PAE (neurodevelopment disorder due to prenatal alcohol exposure---the DSM term that replaced "FASD", "ARND" and "FAE")
We knew that our children had been exposed, but they had not been formally diagnosed prior to our adopting them.
Page 9 of the attached is a good summary of symptoms indicative of FASD. The whole booklet is quite helpful, actually.

http://www.fldoe.org/core/fileparse.php/7690/urlt/0070099-fetalco.pdf

I have to say that once we started treating it as a medical disability, things improved. That means meds for the ADHD, and other meds for emotional regulation (they made a HUGE improvement in the previously out of control tantrums). We have IEPs.

There is a wonderful Canadian organization called "Living with FASD" run by an adoptive parent named David Gerry. I have downloaded the materials from his 2013 and 2014 FASD summits, which feature a wide variety of doctors, therapists, parents, and other advocates for FASD diagnosis, research and treatment, and learned a tremendous amount.

The biggest risks with FASD kids is the secondary effects as they enter the teenage years---that's when the dysmaturity and lack of reasoning ability can result in substance abuse, poor choice of peer group, inappropriate sexual activity, etc. Early diagnosis and interventions are useful in ameliorating these secondary effects.

Thank you very much

[Anonymous]

I have two FASD children whose situations are complicated by other diagnoses, initially a different language and a long period of institutionalization. But, FWIW, here is my experience.

If so, when did you start noticing the signs - physical and mental? For my first child, whom I met at age 2.5 years, in retrospect, the mental signs of FASD were apparent on day one, but until he was older, it wasn't clear that the issues were related to FASD. No doubt he had serious disabilities from the second I met him but I don't think I realized he was FASD until he was 8 or 9. However, there were no physical signs until about age 9, after he lost his baby teeth and got his adult teeth. Then, the characteristic facial signs were evident. I actually saw this with other kids as well - no physical signs until after the loss of baby teeth. For my second child, whom I met at age 6.45 years, I didn't see the mental signs until fifth grade. Then, it hit like a ton of bricks. Until that point, other than being behind in reading, which everyone attributed to the language changes, everything seemed fine. As far as facial features, I still don't see them in him.

What were the signs that you noticed? Eating issues, sensory issues, physical (cardiac) issues (which may be congenital and not FASD related), ADHD, cognitive gaps, what appears to be absence seizures, low percentile height and weight (less than 10th for one and less than first for the other kid), FTT, academic issues, impulsiveness that is beyond belief, anxiety. My kids are really textbook.

When did you get a diagnosis? Neuropsych and cardiologist. Thing is though, since we don't have the actual drinking history of the biological moms, these are not diagnoses that are recognized or get them services in school.

How are things going? Both of my boys are doing amazingly well. We don't have behavioral or attachment issues (anymore). That is huge. For my oldest, he has struggled in school his entire life and will likely graduate by the skin of his teeth and with lots of summer school to make up for failed classes. But, he will be capable of living on his own and holding a good job, probably in the automotive industry. My middle child is also doing great. Honor roll student (with a 504 plan - lost his IEP last year). He is definitely college material and should do fine, but he beats to his own drummer and struggles with doing things on other people's time frames so he's going to have to figure out a path where those traits work.

I want to add that things are going well because from day one, I knew that if my boys were going to grow up to be productive adults, I needed to teach them and help them grow to be independent right from the beginning - which does not mean that I am not nurturing. There is not a time that goes by where I am not working on the next skill that they need to become independent. I am realistic about their abilities, once their abilities and limits become apparent, and work with them to make decisions within what they can do, not what I wish they would be able to do. It's been a long road and we're not done, but I am proud of my boys and my family. No one would have ever predicted that they could be so successful.

[Anonymous]

Anonymous wrote:I have two FASD children whose situations are complicated by other diagnoses, initially a different language and a long period of institutionalization. But, FWIW, here is my experience.

If so, when did you start noticing the signs - physical and mental? For my first child, whom I met at age 2.5 years, in retrospect, the mental signs of FASD were apparent on day one, but until he was older, it wasn't clear that the issues were related to FASD. No doubt he had serious disabilities from the second I met him but I don't think I realized he was FASD until he was 8 or 9. However, there were no physical signs until about age 9, after he lost his baby teeth and got his adult teeth. Then, the characteristic facial signs were evident. I actually saw this with other kids as well - no physical signs until after the loss of baby teeth. For my second child, whom I met at age 6.45 years, I didn't see the mental signs until fifth grade. Then, it hit like a ton of bricks. Until that point, other than being behind in reading, which everyone attributed to the language changes, everything seemed fine. As far as facial features, I still don't see them in him.

What were the signs that you noticed? Eating issues, sensory issues, physical (cardiac) issues (which may be congenital and not FASD related), ADHD, cognitive gaps, what appears to be absence seizures, low percentile height and weight (less than 10th for one and less than first for the other kid), FTT, academic issues, impulsiveness that is beyond belief, anxiety. My kids are really textbook.

When did you get a diagnosis? Neuropsych and cardiologist. Thing is though, since we don't have the actual drinking history of the biological moms, these are not diagnoses that are recognized or get them services in school.

How are things going? Both of my boys are doing amazingly well. We don't have behavioral or attachment issues (anymore). That is huge. For my oldest, he has struggled in school his entire life and will likely graduate by the skin of his teeth and with lots of summer school to make up for failed classes. But, he will be capable of living on his own and holding a good job, probably in the automotive industry. My middle child is also doing great. Honor roll student (with a 504 plan - lost his IEP last year). He is definitely college material and should do fine, but he beats to his own drummer and struggles with doing things on other people's time frames so he's going to have to figure out a path where those traits work.

I want to add that things are going well because from day one, I knew that if my boys were going to grow up to be productive adults, I needed to teach them and help them grow to be independent right from the beginning - which does not mean that I am not nurturing. There is not a time that goes by where I am not working on the next skill that they need to become independent. I am realistic about their abilities, once their abilities and limits become apparent, and work with them to make decisions within what they can do, not what I wish they would be able to do. It's been a long road and we're not done, but I am proud of my boys and my family. No one would have ever predicted that they could be so successful.

If you don't know the drinking history of the birth mom, how do you know their issues are due to fasd? Is there a definitive test of some sort? Thank you so much for your input. What physical transformation to the facial features happened after the loss of the baby teeth?

[Anonymous]

No definitive test for FASD exists. The diagnosis came because there were so many factors and no other expected lanation. The facial changes were mostly the lip features. We went from beautiful rosebud lips to the flat line.

[Anonymous]

The majority of FASD kids do not present with the facial features. And a kid can have significant FASD cognitive impairment and not have the facial features. Some lesser known physical indicia: hypoplastic fingernails---i.e., the nail bed does not extend all the way to the tips of the finger. Our DS (who does not have the facial features) has hypo plastic nails---a psychologist clued me in that she had been taught by a pediatrician that nails that looked like our DS' were often a sign of FASD.

Another physical characteristic can also be androgyny, as prenatal alcohol exposure is also an endocrine disrupter.

One of the biggest cognitive impairments is an ability to process abstract language. This is not as apparent in younger children but becomes quite obvious as kids move in the middle school years. My son was flummoxed over his math homework tonight until his sister and I figured out that he was thinking that a "plane" was an actual airplane.

Our kids were internationally adopted. While all older adoptees experience some amount of testing/acting out while adjusting to a complete cultural displacement, it became apparent that our DS had a great deal more trouble adjusting. And natural consequences, loss of privileges, all the other "typical" parenting discipline techniques were absolutely meaningless. If he was "stuck" on an issue (perserveration being another FASD trait) then no amount of reasoning or threatened loss of privileges was effective. And even if he lost a privilege he dearly loved, such as screen time, that loss was meaningless in terms of regulating his behavior.

"Dysmaturity"---i.e., being developmentally behind---is another FASD trait. The developmental trajectory is elongated with FASD kids---with most FASD kids having the maturity of 8-10 year olds as teens. This dysmaturity becomes more obvious once kids are in the upper elementary years. Take their chronological age and divide it by 2 and add perhaps a year and you have a more likely sense of developmental age.

Psychiatrist Susan Rich in Potomac specializes in FASD kids.

[Anonymous]

What are the key differences between fasd and ASD?

[Anonymous]

"Dysmaturity"---i.e., being developmentally behind---is another FASD trait. The developmental trajectory is elongated with FASD kids---with most FASD kids having the maturity of 8-10 year olds as teens. This dysmaturity becomes more obvious once kids are in the upper elementary years. Take their chronological age and divide it by 2 and add perhaps a year and you have a more likely sense of developmental age.

PP, I found this very interesting. Just a few days ago, we were talking about how immature our boys are, particularly the middle one. Between this and impulsivity, I think my boys are going to have to live at home until they are like 25 for their own safety. (Only partially kidding).

[Anonymous]

Anonymous wrote:What are the key differences between fasd and ASD?

First off ASD is an umbrella term for what may be very different disorders. Both have a significant range, but from what I have been told a child can be ASD and gifted, but you do not see academic giftedness with FASD, There are kids performing find academically with FASD, but you just see a much wider range with ASD. I have seen children with FASD with strong motor planning abilities, but you don't see that often with ASD. Children with ASD are much more likely to have to strong memories than those with FASD (but as I said there is a range). There are facial features associated with FASD, but as some have noted it can be very subtle. It's debatable whether there are facial features specific to ASD. There was some research looking at things like size of eyes and gasp between eyes, etc.

As far as I know alcohol consumption cannot cause ASD, but it is the cause of FASD. I assume a child can have bother FASD and ASD, but I have never seen it.

[Anonymous]

Try treading Diana Malbin's "Trying Differently rather than Harder"---it deals with the dysmaturity issue in depth.
The Amereican model of expecting substantial independence in terms of executive functioning by age 18 is disastrous for FASD-impacted kids. See attached for example of how that expectation can result in otherwise good kids making some terrible choices. On the positive side, if you can keep your FASD kid somewhat sheltered, research indicates that there is a maturity "jump" between ages 25 and 30.

https://www.youtube.com/watch?v=b02BK13zQBY

[Anonymous]

Anonymous wrote:Try treading Diana Malbin's "Trying Differently rather than Harder"---it deals with the dysmaturity issue in depth.
The Amereican model of expecting substantial independence in terms of executive functioning by age 18 is disastrous for FASD-impacted kids. See attached for example of how that expectation can result in otherwise good kids making some terrible choices. On the positive side, if you can keep your FASD kid somewhat sheltered, research indicates that there is a maturity "jump" between ages 25 and 30.

https://www.youtube.com/watch?v=b02BK13zQBY

Does this mean they can likely be independent and hold down a job at that time?

[Anonymous]

Depends on the severity of the FASD. For kids with the most severe FASD impairments, the answer is probably no---they will always need some type of support structure to help with executive and adaptive functioning. Some FASD kids can learn to function independently as young adults with life coaches (can be a family friend, or other trusted adult) who can help them learn how to do things like budget properly. A common FASD problem is an inability to understand and handle money, so many FASD kids need help in learning how to put aside money for rent, utilities, etc.

There is a dearth of group homes designed to provide these supports. My personal observation as an adoptive parent is that the surge of Russian and other Eastern European adoptions in the US during the 1990s means that a large cohort of FASD-affected kids is now reaching young adulthood. These kids are different in that FASD-affected native born US kids are much more likely to be born into multi-generational poverty (FASD teen parents beget FASD kids, etc., etc.) whereas the FASD-affected European kids were removed from that milieu and placed with middle class families.

If there is to be an increase in the number of group homes and assisted living environments for young adults with FASD then it will likely be driven by those adoptive parents advocating for their kids (and hopefully teaming with ASD parents who will face similar challenges).