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Seeking resources, advice, hugs for FAS/FAE

post #1 of 3
Thread Starter 

Hi all -- I am mama to 2 DS ages 6 & 9, and a very soon to be DSS age 12.  DSS2b was adopted at birth and has significant struggles with ADHD, ODD, LDs, extreme executive functioning issues, explosive temper tantrums, impulsivity, inability to tell truth from fantasy...it is quite the load for a little girl.  (she is also a creative, warm, and compassionate girl with a huge heart!).

 

along with her dad (my fiancee --we've been together 2+ years) i have been working hard and putting in lots of my time and resources to help her -- i sit in on family therapist sessions, helped with recent battle to get her retested for an IEP (the old one did not even begin to address her current needs) and am dedicated to helping this wonderful child get the support she needs.

 

so i was flabbergasted when her dad recently mentioned, quite off-handedly, that he and his ex have known for 5 YEARS that she has FAS -- they had a diagnosis from a geneticist/pediatric dysmorphologist, plus admission from the BM that she drank throughout pregnancy.  and yet have done nothing with this knowledge!  i have only just started researching FAS since he told me, and the more i read, the more i see how her issues are part of the package that comes with FAS.  both her parents really do not want to face this, but since this directly affects DSS as well as me and my DSs, i want to learn as much as i can.

 

all that aside, i am looking to connect with other parents of FAS/FAE/ARNC kids.  are there any groups or forums dedicated to this?  good books?  bad books to avoid?  resources?  i am just getting my feet under me on this and would love to hear from others in similar situations.

 

thanks!

post #2 of 3
Thread Starter 

nobody?
 

post #3 of 3

I've worked with quite a few kids with FAS--some mild, some severe.  Your description sounds more like severe end of the spectrum.

 

Thinking of kids I've taught over the years:

The majority have had ADHD like symptoms (but it presents a little differently with FAS than just regular ole ADHD).  Often the student is highly distractible.  The executive functioning piece is often the biggest issue, IMO.

Some were definitely ODD.  Often had serious boundary issues.  Lots of avoidant behavior.  Emotional regulation is often difficult.  Generally had the kind of behaviors that you had serious concerns about them ever being able to obtain employment.

There's usually some sort of LD as well.  Academic skills tend to be pretty low overall.  (A high school student functioning below the 6th grade level in both math/reading is pretty typical in my experience).

Strong tendency towards drug use as teens.

 

(Bear in mind that the vast majority of kids with FAS that I see in a school setting are often still in whatever dysfunctional family context that originally produced the problem, so it's hard to say how much of the issues are FAS issues, or living in abusive or at least highly questionable home environments.  The "luckier" ones are often in foster care (and even with that improvement, there's still a variety of traumas associated with foster care).  The "luckiest" are adopted by more functional adults, often family members.  They usually have a lot of the same issues, but with the added stability in their lives, at least have a much better chance at being successful.)

 

Having said that, these are often some of the most memorable students I get, even with all of the above difficulties.  Still though, it makes me incredibly sad/angry that FAS even exists because it's so debilitating and so very preventable.  Sigh.

 

Good luck, it's not going to be easy.  But I'm glad that you are such an advocate for this girl who will need you very much!
 

 
 
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