[crystalp]

I know that there are a lot of you that have adopted kids with FAS. I would really like to know what the prognosis is for them as they get older. Will they ever be able to be on their own? I can do research until the cows come home, but I would really like some day to day things about having a child with FAS and what you expect of them when they grow up. Any real world experiences would be greatly appreciated!

[Barksum]

We have 4 children who were prenatally exposed and probably land somewhere within the FASD spectrum.

We found the book, Trying Differently Rather Than Harder, by Diane Malbin, and available from FASCETS to be helpful with daily stuff.

Lack of focus, memory problems, a need for adherence to routines, learning difficulties...well, if you've researched you know all that. What that lives out like is a kid who may not be able to handle relatively simple transitions very well, don't follow directions of more than one or two steps at a time, get "lost" between between the time you tell them something and them turning around to do it. We live with lots of repitition....

I have had a couple of the kids have problems after every weekend when Dh goes back to work. They go over and over with me, EVERY Monday, "Dad is going back to work? Is this the day that Dad works now? Will he go to work tomorrow? And the next day? When will he stay home again? ..." and so on. They also have a harder time going to bed and doing their normal daily routines that first day that Dad goes back to work. Sure, it is routine for Dh to have weekends off, but that hiccup of Saturday-Sunday of Dad being home creates enough of a change that Monday brings issues. It is getting better, but the kids have been going over this for a few years now.

I get frustrated a lot because I have one who just kind of stares at me, and doesn't say anything when spoken to. He's forming the sentences in his brain, but doesn't say them until prompted sometimes. That blank stare isn't really blank, blank. He's just processing and can't respond quickly.

He also needs constant reminders to finish a chore. Here's a typical meal-time issue:
"Set the table."
"HEY! Remember what you are doing! Set the table."
"Yo, bud! Grab the forks and put them on the table now."
"Great. Now go get the napkins and...hey, hey! Listen! Get the napkins, ok?"
"Good. Now put the napkins on the table."
"YEAH! High fives! What will we need now...plates! Go grab the plates."
"Got the plates? Good. Run in and stick them on the table."

He's 10.5 years old. He's been setting the table for around 6 years now. Can't do it independently.

As to living alone as adults, I don't see this happening at age 18 for my kids. Often kids with FASD take longer to mature, so say late 20's or even early 30's might be more realistic. We've also got some plans in place should the kids need some help as adults. They may be able to be mostly independent, but need help remembering to get things done, like bills, etc.

Also, FASD is a spectrum disorder, so you can have a kid with all the facial features who is very intelligent and able to function very well with few real issues. Another kid might not have any physical characteristics that go with FAS, but have tons of brain impairment. Just depends and is highly individual.

[stevenstwin]

It's so hard to predict without knowing how far along the FASD spectrum he is. My son isn't diagnosed FASD, although I have my own suspicions. I've also worked a lot with FASD teens and adults, and I can tell you there is a real range there - from those who live pretty normal, productive lives, to one who has such poor understanding of consequences that he has been in jail several times. Sorry I can't be more help, but it really is spectrum disorder!

[crystalp]

Thanks for the responses so far!!

This child definitely has Fetal Alcohol Syndrome, diagnosed by facial features and presence of heart defect. From what I am seeing it can definitely be manageable, is that correct? Is there any behavior problems associated (like just being really aggressive and mean) or is it more the lack of understanding of consequences and need things broken down into steps?

[stevenstwin]

Originally Posted by crystalp

Thanks for the responses so far!!

This child definitely has Fetal Alcohol Syndrome, diagnosed by facial features and presence of heart defect. From what I am seeing it can definitely be manageable, is that correct? Is there any behavior problems associated (like just being really aggressive and mean) or is it more the lack of understanding of consequences and need things broken down into steps?

In my own limited experience, the behaviours can be both. The lack of cause and effect can cause the child to do things that are agressive or mean, but that isn't really the central issue. you are right about breaking everything down into little steps - most of the children I work with, if you say "Hang up your coat and then come wash up for dinner" will catch the very last part of that and that's what they'll do! But, again, it is a SPECTRUM disorder (here in Canada we no longer use the terms "FAS" and "FAE" - they are ALL "FASD") so you could have a child that is affected in completely different ways. One of my boys that I worked with for nearly 10 years had all the facial features but was quite bright and responsible - except that he couldn't read or write a word. He had to do all schooling orally. His mom also kept a really tight leash on him, so he wouldn't make dangerous choices - even as a 16 year old. His sister on the other hand, "looked" the same, but was severely mentally delayed. In a side note, I have great respect for that mom - she is their birth mom, a recovered alcoholic, and the first time I met her SHE said "My children are FAS. I will regret that and be sorry for my mistakes my whole life, but I can't undo what is done and it is my responsibility now to learn all I can and make the best life possible for them so they can have a future."

[AlexzandersMom]

Well I guess my niece would be coined as having either fetal alcohol effects or partial fetal alcohol syndrome, she does show some of the facial features. She goes in to see a geneticist next week, but was told by her doc that she definately falls on the spectrum.
She is bright but lacks social behaviors, she is extremely forgetful, is very active and inattentive, etc. I guess the most frustrating part of raising a child with fasd is that they can do something today but can't do it tomorrow, and they get frustrated because they know that they can do it.

[kizibits]

I just attended a GREAT conference on FASD that was an incredible source of information and resources. They had a number of wonderful keynote speakers and had tracks for parents and caregivers as well as for medical professionals. Some of the things I got out of it--keyboarding (music) is a great theraputic tool for FASD kids. It requires the child to use both sides of the brain at the same time--something which is extremely challenging for FASD kids. (One of the features of FASD is that the connections between the two sides of the brain are limited or missing. This kind of therapy helps to rebuild those connections.)

For dealing with behaviors, small group interventions are having some good results. So are FASD service dogs. You can find info on getting a service dog at 4 Paws for Ability: enriching people with disabilities by training and placing service dogs that provide companionship and promote independent living.. Other ideas that were suggested--using graph paper for teaching math (many FASD kids are very literal and visual learners), and getting a vertical number line instead of a horizontal one,

There is a really good paper that was presented there on five different research projects that you may find of interest. The article is called "Interventions for children with fetal alcohol spectrum disorders (FASDs): Overview of findings for five innovative research projects" by Jacquelyn Bertrand. The article was published in "Research in Developmental Disabilities" issue 30 (2009), pg. 986-1006. If you can't find it, let me know, and I'll see if I can send you a PDF version.

Another great resource was Dr. Claire Coles from the Emory University School of Medicine. Her research is showing that most FASD kids are NOT helped by stimulant medications or psychotic medications. There was also a lot of stress on the fact that interventions and therapies need to be tailored to the individual as all FASD kids have different problems depending on which parts of the brain are affected and to what degree.

You might also want to check out Publications, Fetal Alcohol Syndrome, NCBDDD, CDC to order free publications on FASD. Some of the ones they offer are geared towards teachers to help them plan appropriate curriculum for FASD kids. Some are geared towards medical professionals to help with diagnosis and treatments. Some are geared towards caregivers and some towards preventing FASD.

I'm still sorting through my notes and stuff from the conference, but I'm happy to share any information that I can. This is an annual event and I highly recommend it to any families dealing with FASD. I also met some wonderful parents and caregivers who are dealing with many of the same problems I am and it was great to be able to share experiences with other people who really understand.

Jeana

[tybeemarie]

Two of my kids have been diagnosed FAS. We got them at ages 6 and 7, now they are 10 and 11. They are in mainstream classes, are C students in the academic courses, but are A students in religion, art, music, and PE. My kids are great athletes, very devout, creative, fun. They also were diagnosed RAD, and academics can be tough for traumatized kids with rough starts in life. My youngest is very smart, very insightful, can master anything if she herself is interested and motivated. My middle child is a very, very sweet guy who will bust his behind working on athletic skills, but will not work on academic skills without someone riding him. I aspire to be a Love and Logic mom, so I am not willing to ride him like that, but I do make myself available if he needs help.

Neither of my kids does well with memorization tasks like spelling and math facts, although they can do that for things they are extremely interested in.

My kids will live independently, and my youngest may go to college. My middle child, maybe, although right now he shows no interest at all, which is fine by me. If he went to trade school, I think he'd do great. If you show him how to do something, he remembers that. Multiplication tables, no.

My middle child tested average IQ, and my youngest tested low average, but Lucyjoy and I both that that was a crock, she's smart as a whip. At the time she was tested, she was still highly traumatized and coming from an emotionally and intellectually and physically impovershing environment. Now, I am sure she would be at LEAST average IQ, probably higher.

I love my kids to pieces, I wouldn't trade them for the world. My oldest, who was drug and alcohol exposed, but not FAS, is a harder child to parent. I love her to pieces, too, and wouldn't trade her, but she makes me suffer. My younger two can just aggravate me--and that's really from RAD more than FAS.

These things really vary, though, as other posters have said. It's very hard to predict the future with kids you don't know. Good luck!

[Barksum]

Kizibits, thanks for the info. A vertical numberline may be just what we need! Ds is having a hard time with that right now.

Can you post the name of the conference that you attended? It sounds very helpful!

[crystalp]

Thanks for all of the wonderful information! You guys are great!

[kizibits]

The conference was wonderful and I'm looking forward to going back next year. It's called the National Conference on Fetal Alcohol Spectrum Disorders. The URL is Fetal Alcohol Spectrum Disorders National Conference.

One of the things they did was preview some videos on FASD. One, a 40 minute film called Students Like Me, looked really good and I just got it from Amazon. It talks about best practices with regard to school for kids with FASD and is presented from the point of view of actual students and real classroom teachers. It has some great ideas and really clarifies the issue of can't as opposed to won't. I plan to show it to all of my daughter's teachers as she goes through school.

Jeana

[Barksum]

Thanks! This looks interesting.

[TxMom65]

My daughter was exposed to alcohol and marijuana while in utero. She is a straight A student, but is impulsive, has short term memory problems, and is very active. She is doing much better about being told no, but that was a major problem for her a few years ago. She lost control of her emotions easily.

Also great to hear about the keyboarding. I notice that fine motor activities like sculpting or painting are difficult for her. I have tried to do things to help but will add keyboarding too.

[kizibits]

Another thing to try besides keyboarding--dance lessons. This is based on my layman's understanding of the lectures I have attended and research I have read) which has shown that in most alcohol affectd kids the corpus calosum (the part of the brain that runs down the middle and connects the right and left sides) is usually severely damaged or almost non-existent. That means the left side of the brain can't communicate with the right side, and vice-versa. One example of the implications of this is the lack of impulse control our kids have. They can tell you from sun up until sun down that they shouldn't do something, but everytime an opportunity presents to do that something, they do it. It's because the connection between the control center and the impulse center doesn't exist or is so damaged that it takes too long for the message to go from one to the other. I heard one kid put it this way--"By the time I figure out what I'm going to do, I've already done it."

Activities which involve physical learning and require both sides of the body (like keyboarding and dance lessons) force the brain to try to utilize those connections or to rebuild them if they are missing or damaged. This kind of therapy is recommended all the time for stroke victims for the same reason. (You might want to look at getting The Brain Fitness Program if you want more info on that.) I'm no expert on brain function, by any means, but the stuff I've read on this does seem to make sense.

Jeana

[Barksum]

Bal-A-Vis-Ex is also a program that helps with this, as is Brain Gym.

One lecture we went to covered the issue that FASD kids often use more of their brain to do any given task than a localized part of the brain (as is more common). The lecturer said to be aware that the brain uses more glucose than any other organ, so when kids do something that uses up brain energy (like dance, keyboard, Brain Gym) they may experience low blood sugar during or after. Low blood sugar often brings with it mood swings, nasty grumpiness, etc. A quick carb (juice or milk) to get the blood sugar up, and a protein (nuts, cheese, meat) to help the blood sugar level out over time.

I have one who is HORRID in the a.m. before breakfast. Exploring the low blood sugar avenue! LOL