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Post by fosterlove on Jul 28, 2017 9:40:41 GMT -6
Tell me what you know. Do you know any kids/adults that have been diagnosed? Are there ongoing issues that they have to deal with?
We had a trauma assessment about a month ago and the preliminary report indicates both of the twins we exposed. We have not gotten details, but from speaking to two different professionals, they both believe that if there is enough exposure to cause facial structure changes, there will likely be additional issues as well.
I have read all the things, and assume the worst. So I would love to hear some real life anecdotes.
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Post by Deleted on Jul 28, 2017 9:45:16 GMT -6
My cousin (adult now) hasn't been properly diagnosed but we all know he has FAS. His mother hid her pregnancy for 8 months and drank the entire time.
He has ADD, trouble regulating his emotions, poor impulse control, but is otherwise a thriving adult.
I'm sorry you guys are dealing with this.
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Post by lucilleaustero on Jul 28, 2017 9:47:44 GMT -6
Personally, no. Professionally, yes. I have seen people that were diagnosed that had minimal long term affects to catastrophic long term affects. I can answer specifics if you them.
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Post by Deleted on Jul 28, 2017 9:48:05 GMT -6
I don't have any advice. Being in the adoption world, I know some exposed children but they aren't grown enough for me to have anecdotes.
I'd say be careful with the google (as per usual) and remember there is exposure and then there is environment post birth. A lot of the data out there relates to children exposed in utero and then continuing to live in an environment where there is continued exposure and perhaps alcohol/drug abuse by caretakers. Outcomes can be very different for children removed from the environment where the initial exposure occurred due to early medical intervention, support for any symptoms/issues developed. I know you KNOW that but sometimes it's tough to remember that about your own family life.
Bottom line if there are issues, you will get your boys the care they need and they will have their highest potential to be less/un affected by their exposure.
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Post by fosterlove on Jul 28, 2017 9:48:16 GMT -6
My cousin (adult now) hasn't been properly diagnosed but we all know he has FAS. His mother hid her pregnancy for 8 months and drank the entire time. He has ADD, trouble regulating his emotions, poor impulse control, but is otherwise a thriving adult. I'm sorry you guys are dealing with this. These are the ones that stood out to me in everything that I read.
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origami
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Post by origami on Jul 28, 2017 9:49:37 GMT -6
I'm sorry you're dealing with this, but being proactive is probably the best thing in the world you can do, and here you are.
I've had students who present with facial structure changes, but if you didn't know what you were looking for, you wouldn't know. Also, emotions, impulse control, etc can be issues but those can be addressed with proactive parents and therapy.
I have also seen kids who have had exposure and had no negative effects so don't worry too hard until you get more answers from the docs or see more presentation.
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Post by Deleted on Jul 28, 2017 9:50:57 GMT -6
My cousin (adult now) hasn't been properly diagnosed but we all know he has FAS. His mother hid her pregnancy for 8 months and drank the entire time. He has ADD, trouble regulating his emotions, poor impulse control, but is otherwise a thriving adult. I'm sorry you guys are dealing with this. These are the ones that stood out to me in everything that I read. But....aren't they 2 or 3? Cuz that's kind of true for most terrible twos. Unless you have extreme examples, I would keep in mind their age and not jump to too many conclusions.
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Post by Deleted on Jul 28, 2017 9:52:31 GMT -6
These are the ones that stood out to me in everything that I read. But....aren't they 2 or 3? Cuz that's kind of true for most terrible twos. Unless you have extreme examples, I would keep in mind their age and not jump to too many conclusions. I agree with this. Nothing seemed amiss with my cousin until he was school aged, at least.
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Post by unicornsparkles on Jul 28, 2017 9:59:53 GMT -6
My parents fostered my nephew for 7 years and he was dx with FAS, they got him at age 5. He had the textbook facial features, ADHD, trouble expressing & regulating emotions, speech delay and he wasn't socially developed. That being said, I don't think that all of these things were just because of the FAS. We suspect that my stepsister used drugs throughout her pregnancy and was absolutely an unfit mother. He made a lot of progress when he was with us with the help of speech therapy, regular therapy, medication. I believe there are some longstanding effects though that he may not be able to overcome.
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Post by fosterlove on Jul 28, 2017 10:02:06 GMT -6
These are the ones that stood out to me in everything that I read. But....aren't they 2 or 3? Cuz that's kind of true for most terrible twos. Unless you have extreme examples, I would keep in mind their age and not jump to too many conclusions. Yes. They are 3 and I thought it was just them being them. I didn't start thinking otherwise until we got that damn report.
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Post by Deleted on Jul 28, 2017 10:03:42 GMT -6
But....aren't they 2 or 3? Cuz that's kind of true for most terrible twos. Unless you have extreme examples, I would keep in mind their age and not jump to too many conclusions. Yes. They are 3 and I thought it was just them being them. I didn't start thinking otherwise until we got that damn report. I totally get that. It puts the worry in your head. Do you have a next step to follow up with anyone or is it a wait and see?
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Post by fosterlove on Jul 28, 2017 10:03:47 GMT -6
We have worked with early on and early head start and there are no concerns about development at this point. I know I need to slow my roll. I just can't.
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Post by fosterlove on Jul 28, 2017 10:05:28 GMT -6
Yes. They are 3 and I thought it was just them being them. I didn't start thinking otherwise until we got that damn report. I totally get that. It puts the worry in your head. Do you have a next step to follow up with anyone or is it a wait and see? We are expecting the actual full report within a few weeks. Then we will move forward to see their complete findings. 3/5 kids are expected to have exposure.
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Post by Deleted on Jul 28, 2017 10:07:42 GMT -6
I totally get that. It puts the worry in your head. Do you have a next step to follow up with anyone or is it a wait and see? We are expecting the actual full report within a few weeks. Then we will move forward to see their complete findings. 3/5 kids are expected to have exposure. I'll be thinking of you guys. That's hard news to wait on. But your boys are right where they need to be. ❤️
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Post by redandblue on Jul 28, 2017 11:09:22 GMT -6
I don't have any advice. Being in the adoption world, I know some exposed children but they aren't grown enough for me to have anecdotes. I'd say be careful with the google (as per usual) and remember there is exposure and then there is environment post birth. A lot of the data out there relates to children exposed in utero and then continuing to live in an environment where there is continued exposure and perhaps alcohol/drug abuse by caretakers. Outcomes can be very different for children removed from the environment where the initial exposure occurred due to early medical intervention, support for any symptoms/issues developed. I know you KNOW that but sometimes it's tough to remember that about your own family life. Bottom line if there are issues, you will get your boys the care they need and they will have their highest potential to be less/un affected by their exposure. +1 to all of this. One of the biggest things that happen with the environmental changes and supports is reducing secondary concerns, so early identification and early intervention = more successful outcomes (for everyone, IMO for what it's worth). The importance of having early identification for FAS is gaining understanding that it is a brain injury. There can be supports to help overcome a lot, but it is important to understand that implication in the way people recommend approaches to learning. End of the day, your boys are your boys, love them for who they are (I know you do), and focus on what the next steps are that you are working on helping them grow (that we all do with all of our children). Hugs to you.
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Yogurt
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Post by Yogurt on Jul 28, 2017 11:40:30 GMT -6
As a SpEd teacher I have had a few students with FAS. Being a spectrum type disorder, obviously there is a whole range of ways to be effected. The more severe students I had had many issues with sensory overload, classroom settings and the hustle and bustle associated with that kind of freaking them out/overwhelming them. The one student wasn't potty trained as a kinder, but I can't say the cause of that. Also, I agree with difficulty with emotional regulation and an ability to make it through situations that were non-preferred without "melting down".
Good luck with everything. I'm sorry that happened to these little ones. I hope the impact is mild.
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Post by Deleted on Jul 28, 2017 13:27:54 GMT -6
I don't have experience but wanted to echo that I am sorry you have to deal with this and your twins are right where they need to be. Thinking of you guys.
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Post by nevertoomanyshoes on Jul 28, 2017 21:50:27 GMT -6
Like what Yogurt said, I've seen a few children who have it and the issues and severity are varied. Sometimes though, there have been other conditions at play too, so hard to tease out what is the contributing disorder (or if it was other factors). In teen/adulthood impulsivity and some learning difficulties but also hard to know how much of that was genetics as there was family history and how much if any was the FAS. You guys are doing everything to give them the best of support and love and positive parenting, you are proactive and will get/access interventions and supports if needed (whether FAS related or otherwise). I know it's hard not to worry/google but all you can do is what you're already doing and will do, you know?
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talon
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Post by talon on Jul 29, 2017 12:41:21 GMT -6
It really depends on the severity. Working in EI we get some kiddos who have it and seem to do pretty well. I worked with some teenagers who had severe exposure in my previous job and they had major behavioral, cognitive, and impulse control issues. But they were also in the system due to experiencing abuse for many years so that obviously impacted them as well.
Bottom line is it's really hard to know how it Will impact them later in life. But I think generally you would seem some issues from birth in the more severe cases. And since you know now and they're in a stable loving home you can be proactive. Thinking of you as you sort through this.
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edubs
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Post by edubs on Jul 30, 2017 1:43:41 GMT -6
I have done workshops with our provincial outreach program. Haven't spent too much time poking around their site, but I know they have lots of resources. www.fasdoutreach.ca/elearning
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ironegg
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Post by ironegg on Jul 30, 2017 10:03:55 GMT -6
I've taught many students with FAS. There is a broad spectrum on which they may fall. Some ADD/ADHD, some cognitive delays, behaviors that mimic autism at times, learning disabilities, impulse control, fine or gross motor delay, language delay or impairment, mobility impairment.
It's really hard to know what limits or impairments may show later. It's also hard to know if it directly related to FAS or a Comorbid impairment. There was no "one size fits all" checklist, as far as the dozens of children I have had.
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Post by fuzzylogic on Jul 30, 2017 10:48:10 GMT -6
I was just going to ditto what ironegg said. We've had a few students over the years with FAS and they mostly had some learning delays or differences of some sort. Nothing that was so out there that we'd never seen it before, but they did have some struggles. That said, I teach at a college preparatory school and those kids made it through. They had a lot of help and personal dedication, but they got through.
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girlbye
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Post by girlbye on Jul 30, 2017 11:58:16 GMT -6
My friends daughter was adopted at the age of 2 from an orphanage. They have little information on the birth parents, but do suspect possible FAS, though she hasn't been diagnosed. Her pedi has noticed in her facial structure that indicates it as well as some behaviors. She is on the autism spectrum and has ADHD. She is 10, mainstreamed for some classes and special ed for some classes. She is in various therapies and recently went on medication. She has some self harming behaviors and difficulty regulating her emotions and reactions, but it has improved. She has friends and participates in a team sport. She is thriving and does well.
Sending love to you and your boys.
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Post by captainserious on Jul 31, 2017 9:43:19 GMT -6
My son, M, has Fetal Alcohol Spectrum Disorder (FASD). The reason I don't say he has FAS is because FAS is only one version of how prenatal alcohol exposure can affect a person, and for it to be considered FAS, the facial features must be present. In my son's case, he does not have the facial features, but has many other effects. I bring this up because it's important. Many people incorrectly assume that if a person doesn't have the facial features, that the effects are not as bad. But the truth is, that the facial features just mean that alcohol consumed during the baby's development in utero affected facial development. It can also affect many other areas, including (most commonly) the heart, brain, and nervous system. In my son's case, his heart and brain were most clearly affected. My son's official diagnosis is "static encephalopathy (alcohol exposed)," which translates to "permanent or unchanging brain damage resulting from alcohol exposure." Although our medical records are spotty (no familial records at all), we were able to get this diagnosis based on his symptoms and the knowledge we have that his biological mother was a middle-aged alcoholic. Static encephalopathy is a common diagnosis for people with FASD, because it removes the cause from the equation, and focuses on what FASD is--a form of permanent brain damage, that won't get any better or worse over time. What that means in reality is that there's no way to repair the damage (at this time), but it's also not going to get worse over time. It's true that the amount and ways a person is affected will differ from individual to individual, because it all depends on which parts of the brain are affected. Some people with FASD are impulsive and can't effectively regulate their emotions. We initially thought this was the case with our son, but over the years, we realized he's made great strides in this area. (A little back story: We adopted him 7 years ago, when he was 7 years old. He had major heart surgery within his first month living in the US with us. He had a very rough start in life, and was mourning the loss of his biological mother, and our transition (the first 18 months) was rough as a result.) What we didn't expect, was that as he became more secure in our life here and trusted us more, and his stress levels subsided, his ability to regulate became much better. In fact, I'd now say that he's about like most typical teenagers at this point. I brought all this up because what you might at first attribute to alcohol exposure might actually be caused by something else entirely that you aren't expecting or even aware of. So, in our case, M's "delays" represent in the form of learning disabilities. I put delays in quotes, because I don't believe that he will ever catch up in these areas (a reflection of the permanent nature of the damage to his brain (his IQ is in the borderline range)). He is dyslexic, and it took him until about sixth grade to be able to read and understand at a second grade level. He's currently at about a third grade level in reading. He has no concept of numbers, their meaning, or numeracy in general. So math is a big mystery to him. To the point that he couldn't tell you if he had enough money to buy a $7 item if he has $20. He also has no concept of time, at all. In the sense that he can't ballpark how long something would take or tell you when something happened (yesterday, last week, or last year). Abstract thinking is difficult for him. He has a hard time generalizing things he learns to other situations. On the other side, M excels at visual learning. If he sees something, he can recall the broad strokes of the story or lesson. He is good at figuring out how things work and loves taking things apart and using the pieces to make other things. He wants to learn how to configure mother boards and sound boards, but it's hard for him to understand that he has to first spend time learning the smaller pieces of electronics and build up. He is highly in tune with his emotional surroundings. He can read people really well, and is an excellent judge of character. He is strong, sensitive, courageous, fiercely loyal, and as a result has many friends from different circles. One story I think of often was told by the father of an adult with FASD. He said that his son was very excited, because he had been saving for months to be able to get his first apartment. It was payday, and he would finally have enough for his security and first month's rent, with some remaining as a cushion. This was a huge accomplishment for him, because he was prone to impulse spending. On his way home from work after being paid, the young man saw a jet ski for sale, was thrilled to realize he had enough money, and bought it on the spot, never realizing or remembering that it meant he wouldn't be able to have his apartment. The story struck a chord with me, because this is exactly what I'm always facing with M. In the moment, he forgets his long-term plans and goals. It's not really impulsivity; it's legitimately not understanding or realizing that this choice may affect others...especially when it has to do with money or time (since he has no concept of those things). I once heard a boy with FASD say that it was like living with "swiss cheese brain," because there are times when you simply can't remember things you know. My son has good days and bad days. On the good days, it seems all his neurons are firing, and he can remember things you didn't even know he learned and connect them to other situations in a logical way. He thinks outside the box and comes up with brilliant ideas and plans that work. On his bad days, he can't remember things he knows. It's not that he's tired and can't recall; it's honestly as though he's never heard of the concept before. This is not only frustrating for him, but extremely frustrating for us and his teachers, because you never know when it will happen or for how long the information will be lost. He'll have a setback that can last a day or months, and it might just "reappear" or he'll have to learn it all over again. Finally, one of my biggest concerns is that M will get in trouble with the law. As I said, he's very loyal to his friends, and as he becomes older, I worry about him being in the wrong place at the wrong time or taking the rap for his friends if something were to ever happen (because he is so loyal). To date he is really good at staying out of trouble and walking away if he senses inappropriate things are happening, so I just pray that he keeps that up. We also live in a very white community and M is from South America and brown-skinned. I worry about him not understanding directions from a police officer and shutting down (as he's prone to do when overwhelmed and nervous). We talk about how to behave with police and other authority figures, about not talking back, and about how the most important thing is to stay safe and we can work out all the details later. I heard of some people with severe FASD symptoms carrying cards they can show to police that identify them as having FASD and instruct the police to call next of kin. I haven't ruled out doing something like this with M in the future. With all this in mind, we are starting to think about long-term planning for him. I do not believe he will be able to live fully independently, as he can't manage his finances or schedule (and as a result his health (keeping up with his cardiology appointments, for example)). But I do believe he will be able to hold down a job and even live in an apartment alone or with a roommate. We know there are many different forms in which support could come, and we are trying to navigate what might be best for him as he nears the time when those choices will need to be made. Because he can't conceptualize numbers (and percentages) he still has unrealistic ideas of what he might want to do for a living (for example, he doesn't understand how poor the odds are that he will be a professional soccer player, since everyone tells him he's good at soccer), but it is our job to help him find a realistic situation that is fulfilling to him. I hope this gives you an idea of what it might be like on a more personal level. M is just one example, but I thought laying it all out like this might give you a better idea of how a person might be affected outside of school and tests. I also wanted to point out that the severity of the way it impacts a person is not related to whether or not they have the facial characteristics, and there are many people with FASD that don't have those characteristics. Also, there's a stigma attached to FASD that leads to under-diagnosis and can make it difficult to find reliable information. Some people never make the connection that their brain damage is related to alcohol, and others are aware but do not share that information due to the stigma. What's important is recognizing what can and can't be helped. The brain cannot be repaired, but FASD is a spectrum, and with the right interventions, supports, and lots of repetition, children with FASD can learn, make strides, and lead full lives. The following are websites that have reliable information. I found them very helpful when M was first diagnosed and as we were learning how to address it: www.faslink.org/www.come-over.to/FAS/www.deborahhage.com/articles/fas2.htmlwww.samhsa.gov/fetal-alcohol-spectrum-disorders-fasd-centerwww.americanbar.org/content/dam/aba/administrative/crsj/committee/aug-12-fetal-alcohol-spectrum-disorder.authcheckdam.pdfPlease let me know if you have any specific questions I may be able to answer.
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Post by Deleted on Jul 31, 2017 10:08:25 GMT -6
captainserious, I know I'm not the OP, but I just wanted to thank you for sharing your story. I learned so much. Good luck as you try to navigate next steps for M. I hope he is able to achieve the right level of independence that makes him happy and keeps him safe.
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Post by fosterlove on Jul 31, 2017 13:15:13 GMT -6
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Post by captainserious on Jul 31, 2017 13:52:06 GMT -6
Your welcome. Seriously, if you have any questions, feel free to ask. I know my post is kind of rambling, but I wanted to give you an idea of how it can present outside if the clinical descriptions you might be reading.
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Post by saltypearl on Jul 31, 2017 14:44:28 GMT -6
I don't have personal experience, however I have a girlfriend that worked in a youth home for kids on this spectrum. I am unsure of their facial presentations but she did say that the particular kids she worked with basically had the bodies and impulses of teens but the cognitive ability and reasoning of elementary school kids. There is such a wide variation of how intense the damage is I would advise to wait for your full report and build up your supports once you have that information. There is a lot of help to be had.
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