We're being asked to consider a case with what I consider moderate-to-significant alcohol exposure. We're pretty wide open when it comes to drugs, but we had indicated that we were only open to light alcohol exposure on our paperwork. The baby is already born and does not show the physical signs of FAS in terms of facial structure.
I feel like it's such a gamble since I know other signs may not be apparent until the child is older, and I'm not sure we're up for that challenge (though if this is our baby, we'll find a way to deal with anything that comes our way).
I know every case is different, but do any of you have experience with alcohol exposure that has not resulted in delays? Or, for those who have children who do have complications from alcohol exposure, how life altering has it been?
We have a tough decision ahead of us, and I'm trying to gather as much information as I can. There were definite reasons why we ruled out heavy alcohol exposure, but knowing that this baby is waiting for parents is causing me to reconsider. Thanks!
Trying to grow our family with both fertility treatments and adoption since March 2009
IUIs#1-4 = BFN, IVF#1 = c/p, IVF#2 = OHSS, FET#1=BFP
Re: alcohol exposure
M was diagnosed with FASD (fetal alcohol spectrum disorder) in December. From his facial structure, he is not recognizable as a person with FAS, although I haven't seen the final report yet, and am interested in how the team rated some of his features (on a scale of 1-4). I use the term FASD even though they just reclassified the actual diagnosis terms because I do not have the final diagnosis yet, and FASD is generally considered the all-encompassing term.
Let me start by saying that M is legally 10 years old, biologically most likely 12.5. He is currently in 3rd grade with an IEP. The schools don't know how to classify him, but generally, he falls under having a language-based learning disability or a communication delay. He has dyslexia, virtually no working memory, doesn't understand the most basic concepts of math or time, and is still reading at a low 1st grade level. So, education was our first tip-off that something wasn't right.
Socially, M is also challenged. He does best with younger kids, and is actually really great with them most of the time, because he worries over them and wants to protect them (a bit too much, but it comes across great when playing). He has difficulty maintaining friendships, though. We initially thought this was because he never had to make or keep friends, so he never learned, but we now know his issues are typical of people with FASD. We work hard on how to remember that other people have feelings and that our actions/words impact them and make them want or not want to be our friends. He's also part of a social skills group that meets during his lunch break at school.
All this is compounded by the fact that he's grown a ton in the last couple years, since having his heart surgery, and is going through puberty in the 3rd grade. He is always by far the biggest kid, and is getting comments at school from the older children who are trying to figure out why he's only in the 3rd grade (We initially started him in 1st when he arrived to the US, based on his legal age of 7 and the fact that he was learning a new language.). So now, he wants to be in the 4th grade, and our therapist and developmental pediatrician are suggesting we do a trial with him in 4th grade at the end of this year to see if it's a good fit. Since he has an IEP, he can't be expected to keep up with the grade's work, so if it's a better fit socially and will help with his poor self-esteem, than why not?
Which brings me to his poor self-esteem. He knows he struggles in school, and doesn't really understand when we tell him it's because his brain works differently than other kids'. He thinks he's stupid, and there's not much we can do to convince him otherwise. We praise him all the time, and it's gotten better now that we have a much better IEP and resource situation worked out for him, but it's still a very big issue.
Behaviorally, we are very lucky. M is a really good kid who tries very hard to be well behaved. he struggles with impulse control, but has been really good about controlling them in the last year and a half (after his initial transition). He does still hit himself sometimes when he's frustrated, but the frequency is way down. I can live with all the broken pencil tips, if that's the only way he continues to show frustration moving forward.
Still, I worry about his behavior as he ages. They say that in the 4th and 5th grade is when kids start to think more abstractly, and that's when M's differences will become really evident to his peers. I'm afraid that when he realizes this, his self-esteem will plummet and he will act out. He is always asking about when he will earn this privilege or that (like a cell phone or access to certain movies/games/etc.) as he ages, but I'm not sure he ever be able to handle the responsibility that comes with some of them, and those things may become battles, too.
I'm also very afraid he will start drinking. He is always interested in what we are drinking, and while he is afraid of drunkenness (he lived with his biological mother on and off), he seems intrigued to find out what the draw of alcohol is. Since he doesn't have the best judgement and his biological mother is an alcoholic, I am both afraid he will get into trouble while drunk and that he will become an alcoholic himself.
Similarly, I am afraid he will do impulsive/dangerous/illegal things to gain or impress friends.
The studies say that only 10% of people with FASD can live and work independently as adults. My husband and I are coming up with plans to provide the appropriate supports for M. I am quitting my job in May, so I can be around when he needs guidance, help, or support during the day. In a few years, my husband will retire from his career, and we will move to a rural area, where he hopes to set-up a small business that M can work at when he gets older. We will have to see how things go as he ages to determine what level of support M may need, and to come up with a more definitive plan for his future. We are currently in the process of reevaluating our choice of guardian for the boys, because while my BIL and SIL were good choices for typical children, they will not be able to provide the kind of support M will need.
All of this is not meant to deter you. I am still new to this, and it's all a bit overwhelming. I have days where I'm really good with it and others where I struggle with the knowledge that M won't likely have the life we imagined for him and we might never have the adult relationship I've imagined. It's hard, but also amazing. Someone who hasn't experienced it will never understand my joy the first time he used the phrase "the day after tomorrow" or was able to count some change. Everyday victories bring a whole new kind of bliss, and my heart swells when I think of the amazing, loving, caring, sweet, wonderful boy I get to call my son.
Take this with a grain of salt, because her actual alcohol exposure is unknown. And we were fine with some alcohol exposure, more limited to drug exposure (go figure, each of us is different).
DD's birthmom was what one would probably classify as a social drinker. She also didn't know she was pregnant. So we're figuring that she probably hit the bars with her girlfriends most weekends (and still does, she's a single girl in her 20s, I remember that age). Heck, she did a weekend in Vegas when she was about 7 months pg.
As far as DD, she's shown no signs of any adverse effects of whatever alcohol exposure she had. No facial features, no behavioral issues beyond what you'd see in a typical toddler. From what we've seen so far, she's one of those situation where you hear about Mom or Grandma drinking and smoking back in the day when they were pg because no one knew any better, and their kids turned out fine.
Hand in hand with what CS said, this is not to minimize the potential impact of alcohol exposure. There are some who would say that we just got lucky. Or maybe her birthmom didn't go out drinking as much as we thought. And some would say "ha, this is why the Europeans are OK with drinking during pregnancy." You're also dealing with self-reporting, so you can't know for sure how much alcohol consumption was really going on.
I wish you all the best in your decision.
Not to contradict Dr. L., but by possible way of explanation: in my research, I have discovered that there is no way to know why one child has FASD and another doesn't. There are even cases of twins where one has FASD and the other shows absolutely no signs of negative affects despite having the same exposure.
That being said, in cases were the damage is visible on MRIs, you can actually pinpoint when the expectant mother drank based on where and how the brain development was affected.
Also, I forgot to mention that M's heart condition was also likely an affect of the prenatal exposure. Heart conditions, kidney issues, and ADHD are all common in individuals with FASD.
I don't have the first hand experience that others have, but last night I went to a seminar on prenatal drug and alcohol exposure and the main takeaway messages about alcohol were that 1. Most child-bearing age women drink socially unless they are planning pregnancy and so some exposure is to be expected 2. alcohol is the worst drug to be exposed to prenatally 3. binge drinking (6-8) in early pregnancy is the strongest risk factor for FAS (as few as 2 episodes of binge drinking in the first trimester has led to FAS) and 4. Having the physical symptoms at birth means that the child will have FAS, but not having the physical symptoms does not mean that the child won't have FAS. 5. Light drinking after 20 weeks gestation is cautioned against, but not absolutely prohibited, in many countries, unlike in the U.S. and doesn't usually lead to problems.
Good luck with your decision.
I know you are just reporting what you learned at your seminar last night, but I wanted to toss this out there:
This is a little off-topic, because it won't help you make your decision, Orange, but while this is becoming a more generally accepted view in light of the fact that other countries don't advocate a strict prohibition against drinking during pregnancy, many FASD researchers would adamantly disagree, and vehemently argue that drinking at any point in pregnancy could poise a real danger.
They do concede that the danger is radically increased if the drinking is in the form of binges (defined as anytime the drinker drinks to become drunk or ingests more than 2 or 3 drinks), and believe that this may explain why Europeans "can drink" during pregnancy without damaging their babies (typically, Europeans have wine with meals but don't get drunk). And, incidentally, FAS was first recognized in France, where drinking during pregnancy is common and not frowned upon, as a result of a increased prevalence of children exhibiting difficult behaviors with no other recognizable cause.
ETA: I have done a ton of research on FASD, but if anyone is interested, I learned the most from this webinar: https://www.adoptionlearningpartners.org/catalog/webinars/fasd-risk-development-and-intervention.cfm. It's definitely worth every penny if this is something you are seriously considering taking on. In fact, I just noticed you can download the presentation for free. If it's not just the slides (which I found to be of limited use by themselves without explanation), I urge anyone interested to do it!
Thanks for the additional information. We will definitely check out the webinar you recommended.
My anec-data contribution (I will probably delete soon as I am very private about the details I share about him): my son's birth mom found out she was pregnant at 7 months. She reposted moderate social drinking, regular marijuana use, and occasional mushrooms. She reported that she stopped drinking once she found out though I am not sure if she continued with occasional pot.
To be frank, the risk factors of her profile were at the top edge of what we were comfortable with, but there were so many crazy good things about the match that we went forward. Our son was born without any signs of FASD and has been very healthy. I also know that a lot of the more "silent" affects of fetal alcohol exposure typically don't start to present until a few years from now, so I am prepared to watch for that.
On the other side, just before we had to turn in our "sheet" marking what we were comfortable with in terms of prenatal exposures, I met an AMAZING woman who lives with FAS. She has lived independently most of her life but does receive disability and isn't currently working. Her case is fairly mild esp in light of that statstic above that only 10% of those with FAS can live independently. She struggles, certainly, but she's also an amazingly strong, resourceful and resilient woman who has learned to work with the strenghts that she has, some of which she actually directly attributes to her struggles with FAS. She was so awe inspiring to me, and I took it as a sign that, should we end up with a child who shows FAE, that it would be OK. Of course that skips over the whole struggle of growing up, and I know it presents challenges. Just ended up being a super neat experience for me.
Pinkie, everything I have read/heard says the same thing: alcohol exposure is the worst type of exposure a fetus can experience.
Fred, the seminar I posted was actually featuring Ira Chasnoff, presented by adoption learning partners.
I don't like to post that many details in a public formum, but will go into more detail if you PM.
We adopted from Russia. We are almost 100% sure that he suffers from som sort of FAE/FAS, it doesn't matter what it's labelled. Life has been extremely challenging and signficantly alterning. We have significant issues, mainly behavior.