Thursday, September 22, 2011


A huge challenge with most FASD kids is lying. Some people think of clever things to call it instead of lying, kind of like not calling stealing, but saying something like they have "ownership issues" or something like that. Akila has always had issues with lying and she can tell some doozies.

Often they are very grandiose things like I have cancer, we were in a major car accident yesterday, we are flying to China to adopt 3 children next week, my sister died (never had a sister), etc. Sometimes the lies are on smaller topics, like we went to the Mall of America yesterday, or my mom bought me something that I didn't buy her, or little things like that. I will never forget a few years ago when I was going to an IEP meeting and beforehand, she was telling me to tell "that dude" that she really has 12 siblings and that we live in a 10 bedroom mansion. I had no idea who "that dude" was. At the meeting, I met the dude- he was the new school psychologist. I had forgotten about what she wanted me to tell him though (not that I would have gone along with her lie!). Throughout the meeting, I could feel him staring at me from time to time, it was very odd. Towards the end of the meeting, I was informing her new team of her issues with lying and gave them examples. I asked them to email me any lies she might say as we try to document them. He then said, "so you don't have 13 children and live in a 10 bedroom house?". I laughed and said no. He had bought right into her "creative stories", and was trying to get a grasp on me throughout the entire meeting.

But sometimes, an even bigger problem than Akila's outright lying, is her messed up perceptions. Another consumer at the house, said he was going to hit her, but never did. The threat was enough. In her mind, she thinks he hit her, she is convinced of this. She told staff, she told me. The staff are basically 1:1, and are very good at keeping things like this from happening. Last week, when she was trying to convince me that this other kid had hit her, as I pushed for more info, she basically admitted that all he had done was pull her coat. That, along with the threat, was enough for Akila to think that he had actually hit her.

Two nights ago, we were on the phone. I heard a staff person tell one of the kids to get away from Akila and give her some space while she was on the phone. The boy did touch Akila's arm. Akila's perception was that he pinched her. There was no mark, and the staff person was right there. Last night, she tried to tell me how this kid pinched her.

We have the same problem at home, especially during the rages and restraints. If our hands end up anywhere close to her neck while trying to get her into a restraint while she is attack mode, she is convinced that we have choked her. I have tried to explain what choking is to her, as we have never gotten close to choking her, but she is positive that we were "trying" to choke her. And she really believes this.

FASD kids are often known to have poor skills are reading social cues, and things like body language and stuff like that. This is very true of Akila. This deficit, tied together with her lying and messed up perception skills, is a pretty dangerous mix. This is what has lead to a ton of families and staff that work with FASD kids being falsely accused of wrongdoing. I know of several families who have been put through the ringer while their FASD kid has falsely accused them of some wrongdoing.

One of the things that is so sad about this, is that it makes it really hard to deal with and work with a FASD kid if there was true abuse. How could we believe Akila if something ever did really happen, without some kind of obvious proof? It is the boy who cried wolf syndrome. This is what makes our children so vulnerable, and so hard to protect.

I can easily see us in a situation in the future where Akila has wrongly accused us or someone else of doing something. I can only pray that it doesn't happen, and if it does, that it would all work out. This is why I recommend to any families out who are loving and raising kids like this, to document. Document. Document. Yes, it feels weird to have a file in my email inbox of the "lies" that school staff have sent me. It feels kind of weird to be gathering that info up on my daughter. But I am doing it in her best interest, our best interest, and for the best interest of all people who work with here really. Hopefully, I will never have to use this file.

1 comment:

Mommy Merlot said...

My son has the same thing during rages! I'm the one with bites and bruise and the only one that was doing the hold but then 24 hours later when his ever so "helpful" aide questioned him about his rage he says that daddy threw him up against the wall! This happened months ago and I'm still stressed about how it all went down. His "aide" told her supervisor who then told our therapist and between the three of them they were sending email back in forth trying to figure out how to "protect" my child when 1. I'm the one that was hurt 2. Daddy never touched him he only walked into the room during the rage to put a pillow behind my back because I was the one being slammed against the wall by a very strong raging child. So that is where the Daddy + Wall thing all got turned around in his little head 24 hours after the main event! And as you know memory recall isn't a child with FASD's strongest ability! So yes document, document, document! This story turned out fine but it sure has tainted our ability to have other people in our lives that are easily lead into believing these "perceptions".