Tuesday, July 21, 2015

Perseveration and ARND

Alcohol Related Neurodevelopmental Disorder (ARND) is a form of Fetal Alcohol Spectrum Disorder (FASD) that has the cognitive and behavioural impairments without the facial characteristics. 90% of children born with FASD have no physical signs. Let me repeat that. 90% of children with some form of FASD have no physical signs. (Source: http://come-over.to/FAS/brochures/characteristics.pdf) 100% of these kids have permanent brain damage because of exposure to alcohol in utero. And yet, many people assume that if the child does not have the facial characteristics, they do not have FASD. Instead, they assume that it's bad parenting, or the kids are spoiled, lazy or willful.

We live with ARND in our house. Through trial and error, mainly error, I've learned a few things. I've connected with some great supports and I've learned some other things. And now I'm going to share because information leads to empathy and understanding.

Swiss Cheese Brain 
ARND, like other forms of FASD, is often likened to swiss cheese. Some parts of the brain developed completely, some developed partially, and some didn't develop at all. What this means is there are holes that cause gaps. The gaps can vary from child to child, and has a real effect on their little lives. For example, our daughter isn't good with action-consequence. Every instance is a new occurrence. Our house rule is electronics need to be in the living room at bedtime or the electronics go away. She just got her tablet back last night after a hiatus. Tablet didn't go to the living room, and she's lost it again. She didn't remember from the last time, because she doesn't have the cognitive ability to process that. Every time is a first time, which is exhausting for me and frustrating for her. It's especially tough in a classroom setting where the teacher has 20+ other students to deal with and hates having to remind my kid to sit properly every single day.

Remember when you played vinyl records so often they would get scratches and then skip and get stuck in a groove and play the same phrase over and over until you moved the needle? That's what perseveration is. Our kids' brains get stuck in a continuous loop. We have an added bonus of OCD, which means she can fixate on certain things and it has to run its course before the next big thing happens. While she's perseverating, if you interrupt, it resets the loop and starts all over from the beginning.

For example, right now she's on a tattoos and piercing fixation. I have no tattoos, my husband has no tattoos, I had one set of holes in my ears until June of this year, when I got a second set done to try to be cool with my kid and share the experience when she got her second set done. Dumb, I know, but desperate times...I blame YouTube. Anyway, she has a tally of all the tattoos she is going to get (when she's 18 and paying for it herself because it so isn't going to happen before that) and a list of piercings she wants. She's checked the 2nd set of lobe holes off, now she's focused on ear cartilage piercing and nose. As soon as she wakes up she starts to ask when I'm going to allow her to get her ear cartilage pierced because EVERYONE IN THE WORLD but her has their ear cartilage pierced and I'm the mean mom. If you start her on the tally, you have to wait for her to go through the whole list of 22 tattoos and I forget how many piercings, and if you interrupt, she starts over. She tried to refuse to go to bed last night until I promised she could have her ear cartilage pierced the next day. She fell asleep...and started again this morning. Perseveration is exhausting.

In practical terms, perseveration also means that she gets stuck. If she is working on a project and can't understand a step she needs to do, she can't move forward. Her brain just keeps spinning on the step she doesn't understand. She had to do a project that involved dividing a circle into six sections, and then providing six different types of information about a famous person. It landed home a few weeks after it was assigned for us to complete at home. She had drawn the circle, and had part of the title page. She had pages of information. I took a look at it after the teacher sent home the sample and figured out pretty quickly she didn't know how to divide the circle into six equal parts. She was stuck and her poor wee brain had been spinning on overdrive for weeks trying to figure out what to her was an unsolveable problem.  I didn't really know how to divide a circle into six either, math not being my strong suit, (although my father-in-law immediately said, "oh, it's 60 degrees with a protractor) so I traced the teacher's example. I then helped her see that there were six topics and six sections. Her face lit up, she organized her information and finished the project in a couple of hours because she was no longer stuck. She didn't know she was stuck, so she couldn't ask for help.

Perseveration plus OCD means she can form immediate. fierce attachments to random things. We were in a pet store once, and she spotted a rainbow beta fish. Now it was a very pretty fish, but we already HAVE a beta fish at home, and a cat. I didn't want another beta fish because it would mean another separate tank etc. She took one look at the fish and formed an instant attachment. When we refused to bring the fish home, she went into full-blown meltdown because the fish loved her and would miss her and she would never have the fish again...and all of this went on in the middle of the aisle of the store. It was that fast. She was crying hysterically, flat out on the floor. It was not a tantrum, it was an overload brought on by perseveration. I finally got her standing, wrapped her in a bear hug and slowly eased her out of the store by a side aisle, being judged for poor parenting all the while. One guy with a Stepford bleach blonde wife and cookie cutter children even commented that the situation called for a "good smack". My hands were busy holding my child, or I would have obliged him with one upside the head, but an assault charge wouldn't have helped the situation.

I spent all of one summer listening to Hannah Montana lyrics on continuous loop from the back seat. Last summer was the summer of the bugs and creepy crawlies, and I just about lost my mind over THAT one because of my aversion to creepy crawlies and having pill bugs shoved in my face to admire. This is the summer of the tattoos and who knows what will be next.

Perseveration has a plus side. Doing things over and over means she gets really good at things. She was making 3-D rainbow loom creations by watching YouTube, and was designing her own creations because she would spend hours working on them. She swims like a fish because she can focus to the exclusion of anything else. She got a high mark in recorder class because she played the pieces over and over and over and over and over...until I confiscated the recorder for the duration of Christmas break, because...recorder. Being able to channel her attention to detail can be a good thing.

When I am getting frustrated with the tattoo litany, I remind myself that it's a "can't, not a won't". It's how her brain is wired and if we find creative ways to maximize her incredible attention to detail, she will soar. I can't discipline it out of her any more than I could discipline her height, her blue eyes or her long legs out of her. It's part of who she is and she needs me to understand all of her. And I can take the tattoo litany over the jars of pillbugs.


I started the Sandwich Chronicles as a way to cope with what turned out to be the last year of my mom's life. But now it's time for a reboot.

Welcome to the new Sandwich Chronicles. I'm going to focus on education and enlightenment about life as a parent of a child with Fetal Alcohol Spectrum Disorder, caused by her birth mother's use of alcohol (and also crack cocaine) during her pregnancy. My daughter has Alcohol Related Neurodevelopmental Developmental Disorder, ARND, which has the developmental and behavioural challenges without the facial cues.

There are a lot of misconceptions about FASD. I'm no expert, there are some really great ones out there, and I'll point you in the direction as I go.

I'll keep the tone of the Sandwich Chronicles, but it's time to move forward.