Wednesday, March 4, 2015

The F in FAS Does Not Stand For Fun

Recently I asked my readers what they wanted to hear about. A handful asked me to write about Fetal Alcohol Syndrome, what it is, and how it affects Sydney and our family.

One drink is too many.
When a woman is pregnant, any alcohol consumption has the potential to hurt her developing baby. Depending on the week, and even the day, of development and the amount of alcohol that the mother consumes, the baby may be harmed in numerous ways and to various degrees. There is a potential for brain damage, as well as physical deformities. I’ve been told the area of the brain most affected by alcohol is the frontal lobe. The frontal lobe controls impulsivity, judgment, language, the ability to plan ahead, and problem solving, among other things.

Fetal Alcohol Syndrome (FAS) is the only birth defect that is one hundred percent avoidable and completely controlled by a biological mother’s choices. FAS is not curable and the child does not outgrow the damage done. It is a lifelong disability. A child can be diagnosed by facial features and/or behaviors but many doctors will not give a diagnosis without a written statement from the birth mother saying she did consume alcohol during pregnancy. Some, however, will and because so many children with FAS are adopted and so many birthmothers are unavailable or unwilling to help, the doctors who will give a diagnosis without a birthmother’s statement are so appreciated by adoptive parents like myself.

Sydney has physical features that point to FAS. The doctors at Children’s Mercy Hospital (CMH) said Sydney’s eyes, ears, head size, and a few other abnormalities all pointed to FAS. Her extremely high pain threshold, hyperactivity, and other behaviors were indicators as well. Until we began medication for hyperactivity around age seven, Sydney was difficult to keep safe. The medication has been life changing. Sydney still has FAS but taking medication to help with the hyperactivity and her attention span has helped her to be able to learn. She is reading at grade level now! Math is the most difficult subject for Sydney at school. Math falls under problem solving, which is controlled by that frontal lobe.

Many people have asked me how Sydney’s FAS affects us the most. The hardest part for our family has been the impulse control issue. But that may be like saying the hardest part of being blind is not being able to see. Impulse control affects everything. Without impulse control a person does not think before they speak or act. As a matter of fact, if a thought comes into their head, even one that is obviously a very bad one, they may act on it. If someone says, “Don’t touch that stove” then the person with no impulse control is probably going to reach right out and touch that stove. The “don’t” in that instruction does not register but the “touch” and “stove” sure do. Without impulse control a child cannot sit still or focus on anything. Their mind is constantly wandering from one thing to the next. They cannot learn how to solve problems, and sequencing is a mystery to them. They cannot control their behaviors or learn cause and effect, and punishments will not help. It is beyond their control. They absolutely cannot help any of it.

Attention Deficit Hyperactivity Disorder (ADHD) and anxiety disorders like Obsessive Compulsive Disorder (OCD) are often comorbid with FAS. Some children with FAS also have Reactive Attachment Disorder (RAD). Because so many of these disorders have similar symptoms it is hard to know where one begins and the other ends. So many children with FAS are adopted and there are often adoption issues or past abuse or neglect too. Sydney has been diagnosed with FAS, ADHD, and an anxiety disorder.

We are actually very lucky in a lot of ways though. I have become acquainted with other parents in Facebook groups who have children with FAS and I am hearing about horrible behaviors and issues that we have not had to deal with. Things at our house could be so much worse. I hear about kids that hit, kick, spit, curse, lie, steal, threaten, and abuse. We’ve got almost none of that going on. People assume much of it is about environment and Sydney is doing so well because of parenting, but I do not think that is it. Really good parents are dealing with a lot of the kids who struggle so much more in life than Sydney does. FAS is a spectrum disorder and some kids are handicapped in ways others have not been, depending on the amount of alcohol consumed and the time of the consumption. Also, alcohol exposure in the womb affects some babies more than others. I read of a set of fraternal twins who were affected differently by their mother’s drinking. Although both were obviously exposed equally, one twin was much more handicapped in life than the other.

One of the first things I read after Sydney’s diagnosis was that children with FAS do much better in homes with reasonable expectations. I had to learn to parent Sydney much differently than I have parented my other children. In the beginning, before I understood Sydney had a disability, I made demands of her that were unrealistic. Once I understood that she was doing the best that she could do, our lives became so much better. Sydney’s doctor has told me that a good rule of thumb for kids with FAS is to divide their age in half and treat them correspondingly. Of course, they are not all the same and some of these children are functioning at a level that is equal to their peers in many aspects. On the medication for the ADHD symptoms Sydney almost appears as mature as her typically developing peers at times.

I have noticed a few of the parents I have met online seem to be setting expectations for their children that are unrealistic and punishing their children for the lack of impulse control. Holding a child with FAS to the same standard you hold his peer to is unfair and even cruel. No one would consider punishing a deaf person for the inability to hear and a child with FAS should not be punished for the brain damage they cannot help. A child without impulse control may steal and lie on a regular basis. They do not steal because they have a need and they do not lie because they even have a motive to do so. They do it because their frontal lobe is damaged and they are just acting on an impulse. They have no plan. They have no real agenda. They have no ability to think about the consequences of their actions.

Does that mean that we just give up and stop trying to teach our child with FAS? Of course not! We keep trying and sometimes after hundreds of repetitions, we see a new skill mastered or a new lesson learned. But unfortunately, sometimes, even the skills we think are mastered, disappear and we have to start over again because that is the nature of FAS. We take baby steps, set small goals, and celebrate minor victories. Also we do not set our child with FAS up for failure. If a child with FAS loves chocolate and you do not want her to eat more than one chocolate bar then do not leave a package of six chocolate bars on the kitchen counter! If a child with FAS has trouble staying in bed at night then put an alarm on her bedroom door. If a child with FAS hits her baby brother then do not leave them alone in a room together.

There was a time, for a long time, when I was resentful of Sydney’s birth mother. I blamed her and despised her for the life sentence she had given Sydney… and myself. Because truthfully, Sydney’s life long disability will be with me until the day I die as well. I do not really feel that resentment any longer. I only feel pity. I feel pity for a woman who was probably so addicted to alcohol that it controlled her. I feel pity for a woman who was probably in a horrible situation. She had two children already that she was unable to care for adequately and was about to give birth to another that she would be unable to keep. Perhaps she turned to alcohol to ease that pain. I think I probably let go of the anger and resentment toward Sydney’s birth mother about the same time I was finally able to let go of a lot of my unrealistic expectations for Sydney and truly bond with her as if I had given birth to her myself. If you have not already, now would be a good time to read the post I wrote recently called “Falling In Love With Sydney.”

Other posts you might like to read about our life with FAS: Sydney, Age Six and Teaching Sydney.

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  1. I appreciate what you are trying to do but please educate yourself prior to spreading ignorance or preface ALL you write with "In MY opinion".

    Not ALL birthmothers are addicts nor do ALL birthmothers know they are pregnant.

    Your statements are what helps to keep promoting blame, guilt and shame!

    (A birthmom)

    1. I reread my post and then reread it again. I'm totally sincere in saying I have no idea what could have offended you. If you could point to a specific part that is offensive to you maybe I could reword it?

    2. Julie, Addict or not, if you don't know your pregnant, you are not living a responsible life to begin with and your argument is invalid in my opinion.

  2. As I stated in my original comment that you are apparently unable to see I will reiterate.

    Not ALL birthmothers are addicts nor do ALL birthmother's know they are pregnant.

    In "MY" opinion, it is I who pities you,
    (By the way the word "Pity" usually suggests that the person feeling pity is better off, or in a superior position to the person who is the object of pity),
    There are still many "educated" professionals who state that consuming alcohol is ok when pregnant, there are "studies" that back that up, the "blame" needs to be based on what the pregnant mother was taught, if you want to assign blame anywhere it would best to assign it to the alcohol as it is a futile unhelpful attribute to blame the birthmother.
    If your intent is to educate than refraining from assigning judgements would be a much better position to do that from.

    There's a wonderful quote that states "Don't judge me based upon your ignorance"

    A Birthmother

    1. Are you a pot-stirrer?

      FAS is 100% preventable and I don't care what studies there are saying drinking while pregnant is safe, there is living undeniable proof that it isn't.

      Are you this nasty in person? Its a PERSONAL BLOG of course its her.opinion (except.of.course is FACT) and for you to make a demand like that is completely unreasonable. In fact, I'd really appreciate it (as would all befuddled readers) if you could not judge the author for failing to meet YOUR standards when you are not walking in her shoes.

      What judgment are you talking about? The only judgment I see in this page is YOU. Pity? Yeah, I have pity. For you who have to put their two cents in when it doesn't even apply. Literally NOTHING you said applies here. There's no judgment here. Theres frustration and anger with a preventable handicap. Theres immense sadness for an imagined future of complete safety and love for a child that is not sure because of something that COULD HAVE BEEN PREVENTED.

      FYI pity means to feel sad or compassionate for someone else's troubles. Just saying.

      Sick Of People Demanding Ridiculous Things From Other People On The Internet

    2. Ouch! If I understand correctly it is offensive to you that I said that I pity Sydney's birthmother and you assume I also pity all other birthmothers because I assume they are all the same. That is a lot of assumption because I said none of those things. It sounds like maybe you have a chip on your shoulder. Forgive yourself for what you did. It was unknowingly! I am certainly not blaming you and you should not care what strangers think! I can somewhat imagine how I would feel if I found that my biological son's autism was a direct result of something I had done while pregnant. I hope I would not strike out at others for their blog posts but maybe I would. ?? I actually have a post I was working on a while back about guilt. I will post that soon. Stay tuned.

    3. " if you want to assign blame anywhere it would best to assign it to the alcohol as it is a futile unhelpful attribute to blame the birthmother" What? Blame the alcohol itself? An inanimate object? But not the person voluntarily consuming it?
      So, can we extrapolate that across lines? So, I guess we should blame your keyboard for the unnecessarily condescending thi gs in your post, not you.

    4. " if you want to assign blame anywhere it would best to assign it to the alcohol as it is a futile unhelpful attribute to blame the birthmother" What? Blame the alcohol itself? An inanimate object? But not the person voluntarily consuming it?
      So, can we extrapolate that across lines? So, I guess we should blame your keyboard for the unnecessarily condescending thi gs in your post, not you.

  3. Lisa, I read this post (twice), and found it informative and honest. As an adoptive mother to a son who also exhibits some characteristics resulting from poor prenatal care, I certainly did not see this as spreading ignorance. What I particularly appreciate was your opinion that awesome A+ parenting doesn't solve these issues. They are ingrained in our kids. I imagine there are a lot of amazing parents who could use someone telling them this. Great post.

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  5. I love this post, Lisa. I see above it hit a nerve with someone...seems like misplaced anger. Reading your posts helps me better understand my kids, thank you.

    1. Thanks Qhloe Jill. I sure appreciate the comment. I so wish there was no such thing as FAS. - Lisa