A few months ago Alivia had what her teachers thought was an absence seizure during speech therapy at school. Our pediatrician referred us to neurology and they ran an EEG which was indeterminate. that was followed by a 48 hour mobile EEG test which was quite conclusive... Alivia has very frequent multi focal seizures that typically do not have any outward manifestation. After much debate and several consultations with neurologists, pediatricians, and geneticists, we opted to go the medication route to protect her brain.
The diagnosis was unexpected, but even more unexpected was Alivia's interpretation of all of this. On our way to the clinic to have her wired up for the 48 hour test, Alivia startled me when she asked me if the procedure would "fix her think." I asked her what she meant and she told me that her "think" was broken and she wanted to know if this was going to fix it.
I have no idea where her concept of this originated, but it occurs to me that it is really is a great way of describing FASD. Even better, I must admit, it has given Alivia a way to communicate about her issues that, hopefully, can help me to better understand her needs on a day to day basis. Most of the time it seems to work. When we have that occasional "good"day, I can ask her how her think is doing and she will tell me that it's getting better. When I see her struggling with impulsivity, attending, and other problem behaviors, I can ask her about her think and she will tell me that it's not having a good day or its not working,
Most of the time it seems to work, (Yes, I know I already said that.)
Sometimes, it doesn't. And that's when I know her "think" is really having problems. Yesterday was a case in point. It started out as a pretty good day. We met a friend for breakfast and Alivia behaved very well, but was perhaps a little distracted. By early afternoon, though, the tide had turned, and Alivia became an emotional and intractable train wreck. EVERYTHING was cause for tears--and not just a little crying, but outright inconsolable sobbing. I tried everything I could think of--cajoling, reasoning, sympathizing, even threatening, but nothing could stop the tears. And the worst part of it was she couldn't explain why she was upset. Nothing hurt; nothing was wrong; but everything was wrong at same time. The answer to nearly every question was "I don't know."
I asked her what she wanted and she answered that she wanted to go outside and play. I told her that she could as soon as she calmed down and stopped crying, but that just set off a new torrent. She finally calmed down enough that I could let her go outside, but along the way she decided to pull down the basket of easter eggs in the garage and check each one for coins. When I told her she had to pick them all up and put them in the basket it set off another meltdown, but she started doing as I had asked. It was taking forever, between her sobbing and taking the time to meticulously put each of the plastic eggs back together before putting them back in the basket, so I told her not to fix them, but to just put them in the basket so she could finish faster... big mistake! That set off a new explosion of emotion because she felt she needed to put them all back together.
Sigh...
On the advice of her psychologist we have started a token economy tied to behavior. When she exhibits good behaviors she gets rewarded with "coins" (magnetic disks that we painted like coins) put in a "treasure chest" that I painted on a white board. When she exhibits bad behaviors, "coins" get placed in the "trash can" I painted next to treasure chest. At the end of the day we subtract the value of the trashed coins from the treasure coins and that is her earnings for the day. She can then use her earnings to purchase special treats--a trip to McDonalds, a new puzzle or game, etc. It's meant to encourage good behavior while allowing her control over the incentive to keep it fresh. Days like yesterday make it difficult, though. By the time we were through she owed me money (a lot of money!) instead of the other way around... and yet how much of it was something entirely out of her control? She was simply and completely unable to regulate herself by any means yesterday, but there was no noticeable trigger or reason.
There are days when I am amazed at her unexpected flashes of brilliance and then there are days like yesterday when I am at a complete loss as to what to do to help her and how to survive with some small piece of my sanity intact. I've come to realize that in some ways Scarlett had it right and I just have to sit back and remember that, after all, tomorrow is another day!
Jeana
