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Adoption
CaptainSerious
member
It's official
CaptainSerious
member
in Adoption
The evaluation went well today, and M was diagnosed with "presumed fetal alcohol exposure," which I believe translates into FAE or "fetal alcohol effects."
My husband and I are feeling strangely good about everything. We now know, and can stop searching for reasons or explanations to explain M's wide array of delays.
The bulk of the evaluation was set up as a "where do we go from here" session with the doctor, who was able to answer all our questions about M's prospects, likely outcomes, and best interventions. He repeatedly told us that we are doing everything right and only suggested a few additional things we could pursue, like social skills therapy and having another educational evaluation done after the school year's over to see if how far M's come with the interventions we've tried to date.
The doctor believes that M's learning disabilities will likely be his biggest challenge, and strongly recommended we have genetic testing done to see if there are any other contributing factors to his difficulties. He believes that we will likely have to guide M into a vocational track when he reaches high school, which is something that we were already thinking about.
Since M is pretty much in control of his behavior now and isn't suffering from uncontrollable impulses, he doesn't foresee any major behaviorally-related or criminal challenges ahead for us. We did talk about the possibility of behavior issues which might arise if he recognizes how delayed he is and loses confidence in himself, believes he is stupid, and/or gets depressed.
We will arrange for annual follow-ups with the doctor to see how M's progressing. At those meetings he will help us brainstorm about any necessary changes to how we are handling things. Most comfortingly, he will always be available to us if we need advice on new behaviors, issues, or patters we see emerging.
So, now we are figuring out how much of this we are sharing, and with whom. We've decided that we will not tell the school, and aside from my parents, who knew we were pursuing the evaluation, we aren't telling anyone that this is related to fetal alcohol. For our families and anyone who needs to know details, we will share that he has a congenital brain abnormality that is causing his learning disabilities, and that he's not likely to ever catch up to his peers. For friends and other close people, we will say that dealing with his delays will be a lifelong process, and that they are most likely due to a lack of prenatal care. And for people who work with him but don't really need to know details, like his football coaches, we're leaning towards just explaining that he isn't capable of understanding abstract concepts, but will likely understand if the information is presented in a much more simplified manner. Basically, we are avoiding sharing anything that can get back to M and might lead him to making the connection that his first mother did this to him through her drinking.
Other than that, we're feeling pretty good tonight. We have the comfort of knowing the parameters of what we are dealing with and that we can address it through a multi-faceted approach for maximum affect. He's still the same sweet, loving boy he was yesterday and a few months ago. Now we just have more information about how to best help him. Come January, we'll look into the genetic testing, and then we'll schedule another educational evaluation in the Spring/Summer. Other than that, we're back to our regularly scheduled program....
This discussion has been closed.
Re: It's official
I know I am probably entering this conversation very late but how old is M? What types of symptoms have you noticed?
congratulations on your progress with researching the issues.
Wow, great doctor, great plan. You guys are doing great and I hope M will only continue to blossom as part of your family.
I always appreciate you sharing the joys and the challenges as your children have joined your family.
I have an acquaintance that I met while we were going through the home study process, and she has FAS. She is a totally amazing woman who has learned how to navigate the world with her particular challenges. I had to work with her on some crazy complex technical stuff and she totally blew me away with how well she approached everything and how creative and resourceful she was. It actually took away a lot of the fear I had about FAS. She wasn't diagnosed until she was in her early 20s either. It sounds like your son truly landed in the right family and you are doing an amazing job!
Mother of two wonderful boys! Blessed through adoption.
Thanks, everyone!
[quote user="JodyA118"]
I know I am probably entering this conversation very late but how old is M? What types of symptoms have you noticed?
[/quote]
M is turning 10 in February legally, but his real age is likely more like 12. His biological mother was an alcoholic, and he has significant learning disabilities that vary all over the map (and therefore it has been difficult to find another cause for them), has difficulty with social interactions, and difficulty controlling his frustration. He also had a congenital heart defect and is just borderline for Microcephaly (actually has it if he really is 12). It became clear that something else was going on, and when we looked at all the symptoms of FASD we saw all the correlations.
ETA: I'm not sure why you are asking, but have a feeling you wanted to know if it's something you need to be worried about finding out after the fact. If so, the following should help ease your worries. M did not join our family through a domestic, infant adoption. He was legally 7 when we adopted him, and we knew at the time that he had a congenital heart condition, might actually be older, and that his biological mother was an alcoholic. In other words, while this all was completely unexpected by us, it wasn't something that we didn't know was a possibility. We did have a doctor review his files and check out his photos, but M does not have the typical facial characteristics of a person with FAS, and at the time, his learning disabilities had not yet been detected. Also, since orphanage life comes with instant "brothers and sisters," he never demonstrated his delayed social skills prior to that point, either, so we assumed that although he was at risk for FASD, he had escaped it.
Just out of curiosity, if you don't mind me asking, do you ever plan on telling M these things you now know?
[/quote]
This is something we aren't sure about yet. We typically believe in always sharing the difficult information, but if we don't think he'll be able to understand it and/or that he will come to the realization that it is something his first mother did to him and not be able to deal with that, we may hold off. We do believe we'll have to explain to him that his brain is different than others' and that it affects how he learns some things and how capable he is of doing certain things, but whether or not we explain that it is fetal alcohol related will likely depend on how necessary that information is and how well we think he'll be able to understand, process, and cope with that information.
Right now, we have time to decide, and we plan to just wait and see what unfolds in the coming months/year. By next year, we may be in a totally different frame of mind, after dealing with the new reality for a while, and might be totally willing to tell him. But we also have to recognize that if we tell him, he may tell others, and if we want to control access to that information, we will have to keep it from him until he's older and that information would be less detrimental (for example, the child study team wouldn't be as concerned about denying services if he's already in a vocational program).
5 Angels
I figured, Spooko. ;-) And that's a big reason why I share so freely.
If it helps, M has a lot of difficult things in his past, and we talk about them regularly. It has surprised me how easy it is for him to talk about them, to be honest, but doing so isn't traumatic for him usually. After all, he already lived it and this is helping him acknowledge and accept it, and move on from it. With things that he never knew or doesn't remember, we bring them up from time to time, so he can know his history and learn to incorporate it into his understanding of why he was adopted. With things that does remember, he will bring them up from time to time, and we deal with them as they come up. But the story of how he lived with and was loved by his first mother, but she was an alcoholic and couldn't take care of him is a frequent topic of conversation in our home, and we talk about his memories of first mother with our family and friends, too.
The reason I'm struggling with telling him about the FASD is because he truly loves his first mother, and I can't imagine how his heart might break if he found out she was the reason he is, as he sees it, "stupid."
ETA: And, for what it's worth, we have friends who adopted a little girl from Hungary 15 or so years ago. They never told her anything about her past, and she is dying for information and to go visit. She's yearning for any understanding, and they have always refused to share it, thinking they were protecting her from finding out the horrible conditions and how poorly people of her Gypsy background were treated. I believe they even burned her file so she could never access it. Now, as a teenager, she's struggling, acting out, had become violent against her mother, was sent to a private boarding school, was kicked out, was sent to a rehabilitation camp, and is at a new school for children with behavioral issues. Now, her mother is finding and reading books about attachment in adoption, and the problems that can occur if you don't bond appropriately and understand that adoption isn't only a joyful experience for the adoptee, but is rooted in pain. I feel for them, because this information wasn't available when they adopted, but I can't help but believe that most their problems could have been avoided if they knew what we know now.