Life With FASD-FAE

      My name is Pamela. Five years ago my mother took two boys in to her home. They are twin boys who came to her home with the diagnosis of Fetal Alcohol Effect (FAE), a Fetal Alcohol Spectrum Disorder (FASD).  Basically, that means that their mother admitted to drinking alcohol while pregnant with them and their brain was damaged by it. They came to her home as foster children looking for a new story. Their first ten years of life were not easy. They had gone from grandmother to mother to Child Welfare and back to grandmother, only to end up back at Child Welfare (Washington State).  Over the next three or four years Andrew was placed in seven different foster homes before he ended up at my mother’s; and Alex was in two different foster homes before ending up at my mother’s. My mom has a big heart and loves children. When she took in these two boys, she felt that maybe she could help change their story. And so, with great support from their case worker, she adopted them – they were nearly 11 years old at the time.

            Life has not been easy with these boys but it has carried its rewards.  When you look at Alex and Andrew, you can’t see their disability.  The damage their mother did to them is inside their brain. They don’t think the way we “normal” people do. They can’t make the normal connections that we do because their brain is physically different and it is wired differently. We didn’t know that when my mom adopted them. We weren’t fully aware of what a FAE diagnosis meant. It was frustrating to discipline them because they never seemed to learn from it.  No matter what we did, the behavior didn’t change – the biggest being their compulsive stealing. It made no sense, they seemed smart enough, and if you asked them, they would tell you that stealing is wrong.  They could never tell us why they did it.  We knew that they have a disability, but we thought if we just worked at it, they would eventually “get it”. But then they got in trouble with inappropriate sexual touching involving my eleven year old nephew. My mom turned them in, hoping that we would finally get the help they need. You see, we had told their councilor that Alex was making inappropriate sexual comments to people, “flashing” to the kids in his room, and “accidentally” touched his adult female youth leader.  We were concerned but the councilor passed it off as normal adolescent boy behavior (He must have forgotten that we had brought up concerns because when my mom reported them for this incident with my nephew, he said she never told him anything about concerns before).  Unfortunately, what we got was a nightmare. Alex and Andrew are now in serious legal trouble that may end with them going to prison (youth prison because they are 15 now).  They are currently sitting in Juvenile Detention and to get them out, my mom and I have to move to separate homes and take one each to live with us. (Financially, I don’t know how we’ll manage, but I trust God to see us through.)

            Now the boys are in Sex Offender therapy that requires regular polygraph testing.  I understand that it is a very good program with a lot of success. But after a lot of research (I decided to educate myself on FASD and FAE since this all began) I am not sure that the boys can succeed in the program. I am worried that they are being set up to fail. Not by the instructor, or any person really; but by the expectations of the course.  They are expected to learn and respond as any normal person would. That’s the problem, they are not normal.  Even though they look normal, and they have average (or a little below average) IQs, they are disabled.  I don’t make excuses because of their disability, but I do ask for accommodations.  You can see that a person in a wheelchair needs a ramp to go up steps into a building.  By building a ramp for him, we are not excusing him from going in – we are giving him the means to do so.  In the same fashion, by understanding the boys’ disability and working around it, we are not excusing their behavior but giving them the means to comply with our expectations of better behavior.  My dilemma is how to get everyone on board and on the same page as a team, instead of looking at my mom and me as enablers of the boys – which is very common and human to assume of the caregivers if you don’t live with the disabled person on a daily basis.  It is our job, as the ones experienced with the disability, to educate all those involved in the care of Alex and Andrew.  Unfortunately, having no formal education in psychology (other than my college classes), we are at a disadvantage when speaking to professionals who may not take us seriously because of it. It is a rough road ahead that will require much prayer and patience, but I mentioned rewards in the first sentence and I will not leave you thinking that life with Alex and Andrew is all work and no reward.

            I believe that Alex and Andrew are, at heart, good boys. They genuinely care about people and go out of their way to be helpful.  They’re goofy and fun to be around when they aren’t getting into trouble.  They come in real handy when you need a tall person to get something from a top shelf, or you need a strong person to help you lift heavy objects. They generally do what they are told when they are told with very little resistance – just don’t expect to give them advance instructions that they can follow, because they will forget. It’s almost comically how they don’t get humor but laugh anyway. They are always up for adventure. With FASD life is a rollercoaster, but as long if you prepare yourself for the ride, it can be fun.

 

Thank you for taking the time to read my story,

                                    Pamela