Fetal Alcohol Syndrome

Congratulations! What I wish someone had told me at FASD adoption 18 years ago? BECOME AN EXPERT. You will probably end up educating the professionals, teachers, family members, peers...........................and because FASD is organic brain damage, the behavior modification/reward/consequence stuff doesn't work. Best quote I ever heard: You have to manipulate the environment because you cannot change the child. There are GREAT resources out there. Great websites: FAS Community Resources, FASSTAR, FASCETS. Dr. Ann Streissguth's "Preventing Secondary Disabilities" is a groundbreaking book. Dr. Sterling Clarren has excellent online articles. You will have to observe your child to determine specific strengths and problems. The amount, frequency, and timing of alcohol ingestion uniquely affects the developing brain. In our case, our son looked normal, is very verbal, and has normal IQ. Problems weren't too pronounced in the grade school years because his maturity level wasn't too far off from peers. As Streissguth's book says, there is a "dejectory," not a "trajectory," in many people with FAS because their organic brain issues may mean they have no impulse control. (Have your child tested with the Vineland Adaptive Behavior Scale as she gets older----useful until age 18. Shows specific areas of daily functioning, social/emotional functioning, etc.) I have homeschooled, educated our church family about my son's disabilities, and as he's gotten older had a team of psychiatrist, counselor (mainly for us; counseling has limited effectiveness with H's lack of capacity to generalize or think consequentially), doctors, medications, and family support. WE have learned through trial and error what works. I know now that in his particular case, punishments for lying were useless. He requires constant line-of-sight supervision to keep him from impulsively doing things that could get him arrested or hurt himself or someone else. This is not the case for all FAS-ers. One BIG THING I wish I'd known was that people with FAS who have average IQ's and look "normal" are at much higher risk for serious trouble. It would have adjusted my expectations and been more fair to my son if I had realized that. This is a lifetime commitment. Most adult FAS-ers require others to do money management and help with daily affairs. Hygiene can be a problem. Another big thing: THE ESSENCE OF NEUROLOGICAL DISORDERS (BRAIN DAMAGE) IS THAT THE PERSON'S FUNCTIONING WILL VARY FROM DAY TO DAY, AND SOMETIMES HOUR BY HOUR. This means that you celebrate the days homework goes well without expecting the same performance the next day. Our son doesn't like the fact that we monitor his meds, teeth brushing, money, etc. but that's the only way it will get done. This is with a young man who can read the Wall Street Journal with comprehension............but that's a different brain function.

Our DD was also diagnosed FAS; came to us at age 5. A agree with pp - educate yourself as much as possible. There are short term and long term strategies. short term: Find out where she is today and deal with any immediate disabilities. long term: learn about possible problem areas (like impulse, logic, judgement) and begin preventative efforts. While building up reasoning skills, be on the lookout for problems they age. And try not to sweat too much. J came in just below average on math by the end of first grade. I freaked. it did no good. long term, we've spent the summer working on her missig skills. She's catching up. It might just be she's slow at learning how to make change... or she'll never be an accountant. or it might be the FAS. but freaking out was not productive hang in there

Thank you both for your advice!

I also wanted to say that usually the "issues" you see in a 5 or 6 year old seem fairly manageable but when those same issues are in a 13 or 14 year old you begin to see that the "gaps" get bigger not smaller between your child and same age peers. Be prepared for parenting LONG term. At 10 I would have swore on my life that my child would be capable of living independently on schedule with his same age peers, now as a mid teen I realize that simply won't be possible - for his own safety.Realizing that it is "BRAIN DAMAGE" and not just misbehavior (although you will also be dealing with attachment disorder behaviors with a 6 year old) will at least help you keep perspective. Make sure you have respite available and a good, safe place to vent. It's alot harder than you can ever fathom so make sure you are prepared.

Here are some books you might find helpful, in no particular order:Fantastic Antoine Succeeds Trying Differently Rather Than Harder, by Diane Malbin (this is one of my faves, I have a copy on my desk to use as a refresher as needed)There were a few I saw on Amazon when I searched "fetal alcohol spectrum disorder". Anything that says it's hopeless is NOT current; that's old theory. We know that brain damage is always there and remains, but we also know that the brain can heal and re-wire with proper therapies and support.If you are mixing in neglect or other issues that could lead to attachment disorders, do some research on that. The emotional trauma will usually exponentially aggravate any other issue you are working through.

I'd love to know any good sites/articles you can steer me to about brain re-wiring and any therapies that are going on. I try to read everything I can get my hands on, and it's such a blessing to me to have found this forum and benefit from others' wisdom! I'm posting rather than pm-ing because I'm sure I'm not the only one who would want to know. Thanks!!!!:

Ira Chasnoff is a dr. in the Chicago area who has published, but also sees patients.There are more people publishing information now. While perusing for books on FASD on Amazon I saw some written by parent/child teams; "this is what it's like to parent a child, this is what it's like to be the child" kind of books.Anything that you find for any kind of brain injury/damage. TBI (traumatic brain injury), CP, strokes, anoxia at birth (blue babies, low oxygen at birth), ADD/ADHD, autism spectrum disorder, drug exposure during pregnancy, ANYTHING that has to do with the brain will give you glimpses that you can start to piece together and find correlations. Any kind of brain damage is going to have some similarities, because it's all about the brain.I printed off an article written years ago by an adoptive mom who had adopted kids from Russia (I think?) and all the research she'd done. The difference for her was that she was a scientist and she did the research in a scientific way and published the info as a scientific paper. GREAT paper! I do have it...somewhere! I don't recall how I found it online, even. :( But she was the first one I'd ever heard who talked about gut issues for kids who have FASD. How some people with FASD also have celiac-like problems and don't properly digest casein (milk proteins) or gluten. She's also the one, I think, who introduced me to the idea of fish oil (omegas) and the need for the gut and the brain to BOTH need extra support. Anything that helps the gut is going to help the brain. Anything that helps circulation/vascular system is also going to benefit the gut and the brain. I think it was another paper/seminar that talked about the brain being the organ who consumed the most glucose in the body. This means that the more a person is using their brain, the more glucose they are using. This could lead to low blood sugar and the attending symptoms of that. Irritability, shakiness, sweating, slurred speech, etc. Add to this that a person with FASD uses more of their brain to do most tasks*, then you can see how the FASD person is going to consume more glucose, more quickly. *Part of the brain issues for FASD people is that their brain doesn't process information efficiently. They don't take in, store, or retrieve information predictably or efficiently. When PET scans have been done on neuro-typical people, they are given a task a few places (one? two) in their brain light up. When a person with FASD is given the same task, MANY places in their brain light up. This means that a neuro-typical person has a brain that uses a couple of spots to accomplish the task, while a FASD uses MUCH of their brain to do the same thing. Thus, a person with FASD may use up glucose at a faster rate. The practical implications are that a child may be having a tantrum after doing a puzzle, or reading a book, or playing a game. It may be a tantrum out of the blue! They may make no sense and be just nasty. If you know that they've had to use their brain in the last half hour, try a snack. Four ounces of juice usually does the trick, and maybe some protein to help sustain the blood sugar. (Walnuts? good for the omegas, too.)Further, it might be helpful to have a predictable meal (MEAL! I typo'd 'mean' before! :eek: ) and snack schedule, much like a diabetic. Limit refined foods, go for whole foods. (Refined foods and sugary refined foods, tend to raise the blood sugar quickly, but also drop off quickly. Whole foods will also raise the blood sugar, but tend to have more complex carbs and fiber and not have the same drop off as refined foods.) Let the school know that your child needs snacks between classes if you can see a pattern of irritability forming.So we try to have breakfast right away in the a.m. (one of mine needs breaky ASAP!) then a snack, lunch, snack, dinner, and another snack before bed. As the kids go through growth spurts and age, their snacks and meals may wax and wane in size, too. Sometimes my youngest and smallest child may eat more than anyone else! Currently, my 13 yo who is on the lower end of the growth charts, out-eats everyone. :DWe supplement with multi-vitamins, fish oil, and probiotics. My kids play outside daily. (Not organized sports, though, as this was problematic for some of my kids for various reasons.) They do lots of building forts, riding bikes, playing with sticks and rocks and mud.... We live on some acreage, so that has been helpful. We limit artificial dyes, flavors, processed foods. We have predictable schedules and routines.

Thank you so much for taking the time to share this wealth of information! : )

Thanks to all for the information in these email threads. I have 3 children--all with some varying level of FAS/FASD. Is anyone aware of how to prepare these children for life in the real world as adults? My two oldest children (18 and 16) were both capable of landing an entry level job, but unable to keep it longer than a month due to a lack of being able to follow specific directions (even if they were the same set of steps for the same task) to the satisfaction of their supervisor. Having three FAS/FASD kids is tough--and I do not have the physical strength to take care of them forever. What happens next for people in this situation?

Diet, I've read your post and don't have any super-great-specific ideas for you. Kids with FASD often take longer to mature to their full potential, sometimes up into their late 20's and early 30's. If you are thinking about a scale of maturity with those numbers, 16 and 18 is still pretty young. If your kids have difficulty in following multi-step directions, and also applying that info to even the same tasks every day, let alone a variety of tasks, then that would be where I'd start at home. Practice for work, and practice working. Maybe have cards that list the steps for jobs at home. Think like an employer, and then have the kids practice toward those goals. You might consult with the special ed in your school district to find out about programs that help train teens for jobs vs. college. NOT because I'm saying your kids will not attend college - who knows? - but because it will give you info and ideas, perhaps curricula suggestions, to help train your children. I might have some links that would help. I'll see what I can find, and if I come up with some I'll post here.

Hi newbie here, I would like to thank you for sharing and exploring this topic. As a first time mother, this has opened an interest on my part. I was really never aware of FASD, but thanks to you I can start exploring on this topic more and share it with my friends.

I'm at the same point as you are, Dietcokequeen! But thankfully my oldest is only 13 (14 next month, homeschooled and working at 4th grade (math), 3rd (language arts), and 5th-ish (science, history, art, etc.). Barksum brought up a good point about high school vocational programs. Ours has a "school-to-work" program that I need to check into. My only concern is that it's an alternative education program for expelled students or kids who just "can't do" school. :cop: And mine learns everything from peers and tries it herself, so that's a bit disconcerting. Another avenue we're looking into is the ARC to see what job-training programs they have. An able-minded peer program is another thought. (Kind of big bro/big sis.) Good luck!2

Sounds like I have the male counter-part to your daughter! :rolleyes: My son will also be 14 next mo., is working at the same grade level as your child in all subjects, and is also homeschooled. We are currently working with him on money--he has no concept of how much change he should get from a purchase and no concept of the value of something--if a pack of gum were to cost $10 and he had $10 in his pocket, he'd buy it. If he sees something priced at $3.99 + tax, all he sees is the $3 and does not account for the rest. He could be very easily taken advantage of, so we have to watch him very closely and limit how much money he's carrying around with him. It's been a long, long process with him (lots of learning delays) but we absolutely cannot give up. It's just not an option! This child has no behavioral issues whatsoever and he is loved by everyone because he is so sweet. But until he learns how to manage money on a fairly functional level and can demonstrate some age-appropriate reasoning skills, I'm not sure how well he could do on a job. We've still got a few more years to figure that out!

Also, keep in mind that not all of her issues will be FAS-related. She is still an older-adopted kid and has most likely been through a lot of pain before you've met her. The postnatal environment matters for these kids too!