It’s Not Her Fault (Part 3)

Some people may say that I should protect my daughters’ stories. I get that. By no means do I share any of DOP’s “dirty laundry” in order to humiliate or make fun of her. Instead, my heart is to put my life raising a child with FASD into the best words that I can so that others can learn. Often times, I made observations about DOP, but didn’t know how to put them into words enough to seek help. Since I couldn’t put my finger on what was going on, I felt very alone, inadequate and questioned my sanity. That did nothing but cause more and more strain between my Daughter of Purpose and I. It also caused strain between she and her siblings. It wasn’t until I began to shift my thinking that they followed suit. 

What I desire from this sharing, is to empower others to see that with knowledge, they can do this. There are people everywhere raising children with FASD and they need help and support. They need the ability to identify what they are parenting so they can be more successful with their child. They need a supportive community of people to come alongside them and validate what they experience every day. They need people to not question them when they have to parent their FASD child differently. And they need people to give them respite. The unrelenting need to be the “external brain” for someone is exhausting.

I have often questioned my ability to parent my little girls because their needs are so complex, but as keep I pressing forward, I see Him giving me what I need to advocate for their best. It often doesn’t come without tears of frustration or as quickly as I’d like it too, but over time He has led and continues to lead me to some of the most amazing resources and intervention services available.

For the sake of educating others about FASD, here is a list of the things that resonated with me as I dove deeper into understanding FASD. Keep in mind that every person with FASD is different and I am no professional, but this is her story and how it plays out for her:

  • All of the issues discussed in “It’s Not Her Fault (Part 1)
  • Impulsiveness. She doesn’t think before doing anything. She simply does. Touch, talk, do…it all happens with no forethought.
  • Teasing or bullying of others. Provoking is always her go-to when she doesn’t know what to do with herself. Thus, a very structured/scheduled world helps her be more successful. To put it plainly, she doesn’t know how to think on her own and needs an “external brain” (me) to think for her. Everything must be black and white (like rules) so she knows exactly what to expect. When there is a break down of schedule or expected rules, she simply can’t function so she resorts to provoking others.
  • Organizational difficulties/poor organizational skills. This leads to what I just mentioned above. Not only does her day need to be structured, but she needs to know where everything goes so that she can be successful at putting it away. This also applies to her school work. I must break it down into very small chunks and sit right on her to keep her focused on finishing her work little by little.
  • Poor self-image/depression. Because DOP doesn’t know how to filter what comes out of her mouth or how to hide her emotions, they are worn on her sleeve. For whatever reason, on certain days, she is continually under a black cloud and cannot shake it…and we all know it. I imagine this may become a larger issue as her hormones change with puberty.
  • Attention deficit. Yes. Some of this is a lack of ability to focus. Sometimes I think the result of memory issues. ie: the night she built her nachos, placed them in the microwave to melt the cheese, got distracted, walked into the other room to do something, came back in to the kitchen and began looking all around. My man could see she was looking for something she’d lost. When asked about it, she said she’d lost her nachos and couldn’t find them.
  • Developmental delays. Again, yes. Some of this is characteristic of living in an institution, but combined with neurological problems thus creating other problems, it’s no wonder she functions about two years or more behind her peers. When playing with other children of varying ages, she will always gravitate toward the younger ones.
  • Problems with memory. This hits almost every area of her life. She can’t remember conversations, correct words, how to act in a specific situation and more. She still can’t recall her orphanage days. Yet the oddball thing is that she can remember weird things like the fact that she ate a bison burger on her vacation with my parents last summer. Umm…okay? I often think, “You can remember the bison burger and every word to this movie, but not what we did this morning? Hmmm…okay.” Again, this is one of those points where I started to realize that maybe there was something to repeated experiences and moving things from her short-term to long-term. I began to see it academically too. Every day of school work was/is a new day, but if I keep introducing it long enough, it eventually sticks after it settles into long-term. Not all things, but most things. If only I could put my finger on what things.
  • Difficulty with abstract concepts. This is age-appropriate if I put her at a developmentally younger age than she physically is, but I have a hunch, based on people I know that have walked this road before me and have teens and young adults that have FASD, that this will stick with her. I have a friend with a young adult daughter with FASD who still cannot decipher the difference between the story she reads in a book and her life. DOP struggles with this also when she watches movies or plays video games so we severely have to limit what she can view or play. She simply can’t separate real from fake. ie: The day we were driving along and she genuinely wanted to know if it’s possible to live in a glass jar for 1000 years. Or when we began to realize that all of the “boy type” play/movies/games she played with her brothers was not being interpreted correctly in her thought process. She began to struggle at separating them from who she is and that it was all pretend. It was so much a part of her mis-interpreted version of what she was thinking, feeling, seeing that she began to have nightmares of being pursed and killed. It took over what she talked about. She often talked about violence against others. When we realized what was going on, we had to pull the reigns waaaaay back and make very black and white rules between what was acceptable play for a little girl and what was appropriate for her older brothers. It was a hard call to make because we didn’t want her to feel different, but the reality is that she is and we have to parent her differently no matter how much others around us may not understand our “harsh” rules for her. The good news is that over time, as we stuck with it, the content of her conversations has changed and she doesn’t have nightmares anymore.
  • Difficulty learning from past experiences. This could be illustrated by the “Hide and Go Seek” example given in Part 1. I could also tell you of the time her sibling (who got in trouble for this and shall remain nameless) convinced her to lick the bottom of his foot for a nickel. Again, she cannot think about whether this is a good decision or not or that it’s only for a nickel. After she licked his foot, he amped up the next challenge. I didn’t step in (winner mom that I am) and stop it but attempted to reason with her. I tried to help her see the the poor decision it was. Apparently, my help was not helpful because she went ahead and sucked his big toe for another nickel. Sigh…
  • Difficulty understanding cause and effect. As if the examples in the previous point are not enough to illustrate this, a simple example would be the leaving out of her items around the house or for example’s sake, simply a coloring book and crayons. Yesterday, when she left her in-progress coloring pages on the table, her younger sister came along and colored on them with the crayons also left on the table. It stands to reason that if you do not want her to color on your pages, you should not leave them out, right? That thought process does not work for DOP, she will leave her coloring on the table day after day and never think to change something next time to obtain a different result.
  • Speech delays. Again, I covered this is in Part 1. She has an overall ability to communicate but there are areas of language with huge holes in them, thus creating the phrase “swiss cheese language.” There is a big difference between her expressive vs receptive language. Sometimes I can see her reaching for the right word in the right context, but she just can’t recall it. There are even times she completely uses the wrong words or phrase, but has no idea resulting in a very nonsense-like conversation. ie: The day I came into the kitchen and asked about the location of the bread. Without skipping a beat, she responded, “The luggage is in the bin.” In my decoding skills that I’ve developed with her, I believe she was trying to tell me that “the loaf was in the cupboard.”
  • Over dramatization of injuries or situations. This goes back to the lack of ability to pick up on social cues. With practice, she is learning what is the appropriate response with what type of injury or situation.
  • Generous/forgiving to a fault. Always willing to help others or to give up her portion of something (even if they haven’t treated her well) because she doesn’t understand boundaries, how to read other’s faces or social responses to her and is often so desperate for any amount of love and attention (although she gets plenty) that she’d gladly give whatever she could to satisfy that need. Take this and think what this will look like for her as a teen… #gullible
  • Social cues. Just like those with autism, she doesn’t know what appropriate social responses are. Her mind can’t process things like playing board games without eating up the time by arguing over what color game piece she will be. By the time she’s fought to the death over being the blue one, the allotted amount of time to play is either over or her opponents are so frustrated with her that they don’t want to play with her anymore. She has no ability to read their faces and figure out where the problem lies. Or if we get to actually playing the game, she will begin yelling, laughing too loud or telling nonsensical jokes at inappropriate moments that make no sense to anyone but her. She doesn’t notice that everyone is annoyed with her. This same kind of behavior can occur anywhere–at the dinner table, in the car, in Sunday School. What I sense is that she sees these behaviors in others, but doesn’t know how or when to apply them correctly. Over time, I believe that will change as we take her to social skills classes and simply practice, practice, practice what is appropriate. She may never be able to sense on her own how to respond appropriately, but with practice, she may begin to emulate the right thing and then over time, the hope is that she would begin to be able to carry her knowledge in familiar situations over to non-familiar situations. 
  • No perception of time. My DOP has no idea if it’s been a week since we went swimming or an hour ago. I think in her mind she knows one was awhile ago and the other is not, but somehow she can’t locate the right word for the right amount of time. If I say that her birthday is in 2 months, in her mind that means two days. If I say she can have the privilege to do something when she’s 10-years-old, that’s next week to her, although in reality it’s 2 years away. I can say we’re going to the park in an hour. It might as well be forever to her. Again, her brain just doesn’t wrap around time well.
  • Copy cat behavior. We often feel like we are playing “Monkey See, Monkey Do” in our house. It used to drive my other children and I batty that DOP would literally copy what they did, the choices they made, the things they would eat, the questions they would ask, etc. You would often hear me say, “Think for yourself. Don’t copy them. What do you want?” With me personally, she’d come into the kitchen and ask me what’s for dinner when she could clearly look around and see what I was making. It wasn’t until an older, wiser mom ahead of me on this FASD journey pointed out that her daughter also does this. It goes back to the need for an external brain. She does not know how to make her own choices so she copies what is around her. She doesn’t know how to take the pieces that are available around her as clues and put them together to figure it out on her how. She needs me to keep my sarcastic tongue to myself and simply answer the question. Yes, I can work with her on how to think for herself, but it’s a long road ahead and I can’t say for sure if the road will ever end. She may always need that outside person to help her manage herself and I need to be mindful to surround her with people worthy of being copied. It’s not a matter of IF she will copy her peers…she simply will. With normal developing children there’s an “if” component. With DOP, I don’t have that wiggle room so I must choose wisely.


Socially, they tend to be very outgoing and socially engaging, yet they are frequently seen by others as intrusive, overly talkative, and generally unaware of social cues and conventions. Poor social judgment and poor socialization skills are common: many patients are hungry for attention, even negative. Due to their social immaturity, they have difficulty establishing friendships, especially with children of the same age. The potential for both social isolation and exploitation of individuals with FAS, ARND and ARBD (other terms used interchangably or to give further explanation of FASD) is very evident. Hyperactivity is frequently cited as a problem for young children who characteristically have short attention spans. Many also have memory problems, thus creating further setbacks to adaptive functioning and academic achievement later on.” 

~ Quoted from “A Closer Look at FAS” article cited below because I couldn’t write it any better than this.

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If you think that you may be parenting a child with FAS(D) or want to know what it could look like, here are a few articles and books that have been the most helpful to me. Many parts of these articles and books I wanted to stand up and shout “Amen!” because I felt like someone had finally put into words what I was living every day with DOP.

  • Invisible Disability
  • A Closer Look at FAS
  • “Damaged Angels: An Adoptive Mother’s Struggle to Understand the Tragic Toll of Alcohol in Pregnancy” by Bonnie Buxton
  • “Fetal Alcohol Syndrome: A Guide for Families and Communities” by Ann Streissguth, PhD
  • “Forfeiting All Sanity: A Mother’s Story of Raising a Child with Fetal Alcohol Syndrome” by Jennifer Poss Taylor

As you can probably figure out from reading through all three parts to DOP’s story, the key components that make life easier for her is structure (she always needs to know what’s next on the schedule), routine, black and white rules, practice, someone who is willing to be her exterior brain without condoning her need for one and lots of patience. The reality is that none of this is her fault. I have heard her voice her own frustration with her brain that she knows is not processing correctly when at the same time she knows she should know the info. I’d bet my life on the fact that if she could change things, she would. She doesn’t want her brain to be this way any more than I do. It’s simply not her fault and I would be a fool to treat her as if it is.

I won’t lie to you. Raising a child with FASD is not easy and sometimes I am that fool, but if I can add to my understanding of why she is the way she is, continue to remember that it’s not her fault and provide for her the environment she needs for success, I get to watch redemption right before my eyes. He is the one who can take what the world says is impossible and make it possible. It truly is Him who has led me to this place and I don’t have to fear what the future holds because He is already there providing what I need to raise His Daughter of Purpose.

 

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