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Tag: FAE

Drunk for Life: Fetal Alcohol Syndrome

Gail Harris, who has worked with Arizona children with FAS and FAE since the 1970s as a special education teacher, worries about children with FAE. “Fetal alcohol effect is a hidden handicap,” Harris said. “The kid looks normal, but his behavior or his ability to learn is severely impaired. We feel like they should be able to control themselves more than they can. So we end up blaming the child.”

Theresa Kellerman, a Tucson parent advocate, said children with FAE often come across as brighter than they are. “The expectations are so high because they can come across as really intelligent.” Ruth Solomon teaches at-risk kids at Kellond Elementary School and believes many of them have FAE. “These are the gray-area kids, and there are no special classes for them,” she said. “This sounds horrible, but they are too dumb to be smart, too smart to be dumb. Some of the kids with FAE fall into this range.”

Solomon believes the number of FAE kids is growing. “So many of these kids are being born to women who think, ‘What do a couple of drinks do?’ But it can do so much damage.” “Kids with FAE appear to be normal otherwise, and that’s a big problem. FAE can be a bigger problem than FAS because it is so widespread and because people tend to discount its importance.”

To read this article in its entirety click here. It is a very, very long article from Southern Arizona Online a publication of The Tucson Citizen, but is probably the best one I’ve read in a long time. It explains Fetal Alcohol Syndrome by telling the stories of those affected by it. It’s definitely worth the read.  I was able to identify with the stories because we have raised children with these issues for over 20 years. More than half of my children have the characteristics indicative of FAE/FAS.

An Email From an Old Friend

Years ago, Mark and I formed an adoption support group called KIN Adoption Advocates (Kids In Need). Mostly we met together as families and shared experiences, but occasionally we were able to match up families with adoptable children who were special needs. By the end of our time in KIN, we had successfully helped place 16 children who had been waiting for a home. Below is a letter from one of the adoptive moms whom we helped find a child. Her son has been diagnosed with FAS (Fetal Alcohol syndrome). She found me last week on Facebook. We hadn’t spoken in years and it’s been nice catching up. Here is one of her emails to me:

“We left a church a year ago this past November because of some of these things [People not understanding the special needs of FAS kids].  Sadly, it was people who should definitely be a better example, the Pastor and his wife & kids.  Their son is a real bully, and one day they are going to have to acknowledge it because he’ll do something they can’t gloss over.  The mother is also a bully, sad to say, and singled out particular kids for shaming and bullying.  They didn’t really believe anything about John’s disability.  We’ve been in a church for about a year now where they are far more accepting of special needs.  It’s a small, independent Baptist church.

 I actually have 3 friends who “get it”.  One is a local home-school mom with 13 kids, 11 adopted, six from Africa, and 5 from foster care system.  One is my best “local” girl friend, she is also a homeschool mom with 2 boys, one in high school, one in college.  My very dearest friend is a homeschool mom who lived here.[until recently].   She has 3 kids, age 10, 8 & 7. 

Frequently, the boys and I pack up and go visit them for 3 or 4 days at a time. We go their for her kids birthdays and they come here for our kids birthdays. They were here last month for John’s birthday, and will be here next week for Joe’s. She gets it like you wouldn’t believe.  She’s known us since shortly after we moved here; we went to the same church.  That’s when John was 4.  She’s seen the changes in him and frequently encourages me as a mom.  She wrote such a glowing reference letter for us for this homestudy update!  And she has agreed to take our kids and raise them if something were to happen to both of us. She has somewhat “challenging” children, so she totally gets it, because over the years she’s received the same kind of nasty comments about her kids and her parenting.  People just don’t get that you can’t always just “discipline them more” or “spank them more”.  There are kids that you could spank until they are dragging you off to jail and it would not change a behavior, that sometimes you just have to find other ways.  We had a woman at a former church say she wished John didn’t even know he had FAS, that it’s just an excuse, and that if we just were tougher on him he’d be more pleasant to be around (he actually is pleasant most of the time, and better behaved than at least one of her kids ever thought of being).  We’ve been told to lighten up and give him more freedom to run like the other kids, but when we do, something happens and he gets the blame.  You know the drill. L 

I think removing John from school all those years ago was the best thing we ever could have done for him.  He still has that innocence, and we haven’t lost him to peers.  We’ve talked with him a lot over the years about FAS and what it means for him, and he understands that he will be with us for as long as he needs to be.  He understands that other kids his “age on paper” will get to do things he won’t be doing.  A girl told him a couple years ago that her mom said it was ok if she “likes him for a boyfriend”, and John told her “no, my mom and dad will tell me if I am ever ready to have a girlfriend”.  I was very proud of him for that!”

Mary

Job’s Friends – Part 1

In times of trouble, most people tend to reach out to others for comfort or assistance. Over the years we learned not to even try, for there was none to be had. I can’t count the number of times we’ve gone to evangelists, special speakers, Bible teachers, pastors, etc.  for advice on how to raise our difficult children and been met with the same ol’ answer, “I don’t know what to tell you.” It never failed. So we just quit trying. Now this is not to say that the people weren’t kind hearted or knowledgeable about Scripture. On the contrary, they were usually very learned, compassionate people. That’s why we went to them to begin with because we sensed in them a good heart. But what we were asking was out of the ordinary.

I remember one time in particular when we were at Northland Family Camp, there was a speaker there that outlined the four steps in discipline: a look, a word, discipline, separation. First we’re to give them “the look” to let them know they were out of bounds in their behavior. Many children stop here and change their behavior. Some require the next step: verbal correction. If the child continues on, then we are to administer correction, whether that be spanking, time outs or whatever is deemed necessary and appropriate. He went on to say that if nothing works and the child seems to be unable to take any type of correction, then the parent must consider other means – whether that be kicking the older child out of the home, or finding a children’s home for the younger child. There is Biblical basis for his message, but we wanted to know what to do with children who were like ours, the mentally or emotionally damaged child who don’t seem to have the ability to learn through conventional “disciplinary measures.” It’s not unusual for a Fetal Alcohol Affected child to either not understand or remember a disciplinary measure. These children live in the moment and struggle with reasoning and personal application of instruction.

To them, “the look” was a challenge to be more crafty or sneaky. It’s affirmation that they are slipping up and need to be more careful about how they plan their next gig. The spoken word is just fluff in their eyes – it’s another warning that they were caught and need to be more careful next time. It’s a warning that they’re about ready to be punished and have pushed the limits, to back off and try again later when no one is looking. The third step, the discipline, is something to be endured and tuck away in their memory that no adult can be trusted and they must just endure so they can get on with their life. It doesn’t change or teach them, it’s just another bump in the road. They look at it as an expression of just how dumb adults really are and affirmation that they are to be hated. It didn’t matter that we weren’t the adults who failed them prior to coming into our home through adoption – all adults were alike in their eyes.

We were in a whole different ball game than most parents and were seeking advice on how to throw the next pitch. But no one knew, so we stopped asking. We grabbed our Bible and tried to glean as much information and wisdom as we could find. It withstood the test of time, obviously, for it is the beginning of all things and the hope in all situations. But it wasn’t necessarily an easy path to take. There were no true stories or parables that fit. We couldn’t find any verses that dealt with raiding the food pantry at night to steal food or what to do when a child drew pictures on the bathroom wall with their own waste. It didn’t tell me what to do when a child’s head turned around in circles…OK, that never happened, but I was expecting it to!  It didn’t tell me how to deal with the every day things that are so absent from normal households. Yet it gave me principles to go by and the assurance that our loving Father was there to guide us. We had to learn to walk in the Spirit and hear that still small voice in the din of everyday life with 15 little ones all vying for my attention – good or bad, it was all the same to them!  Of the 15 children, 13 are adopted and 12 were special needs. That means we only had three who had a proper view of life, untainted from the world, and the rest, well, you get the picture.  Needless to say, if the preachers and teachers didn’t have the answers, who would?   To be continued…

 

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