Have I Mentioned How Much I Hate to Repeat Myself?

I've always struggled with patience and, as a result, have always encountered challenges that tested me to and beyond my limits. I used to wonder why, but since adopting Alivia it has become obvious. I need every scrap of patience I can scrounge up and then some to deal with the day to day of living with someone with FASD. Nothing is ever heard the first time you say it. Nor the second. Usually not the third either. Actually, it's not that it's not heard, but that it's not processed. Once it is processed, it's often promptly forgotten, leading to yet another round of repetitions. I really, I mean REALLY, hate to repeat myself.

Then there's the other side of the coin where something is mentioned just once, totally as an aside to a conversation, and it gets locked into her little brain FOREVER! Or that overheard curse word that suddenly becomes her favorite word to say... Yes, I know I shouldn't curse in front of her, but that kind of leads me back to the previous paragraph. Did I mention how much I hate to repeat myself?

I know that part of the problem is her total lack of impulse control. She gets an idea to do something and she can't not do it (double negatives intended!) I've also learned not to tell her not to do something (example--don't touch the stove) unless it's something I really do want her to do. She can't resist doing that thing that she is told not to do--even if it had never occurred to her to do it before I mentioned it.

On another note... This weekend we (a friend and me) will be finishing building Alivia's new bed. It's a loft bed with a play area beneath that can become a bed if we have a guest. Alivia is really excited about it and keeps asking when it will be ready. I hope she'll use it... I'd really like to have my bed back all to myself again. Well, me and the two cats, anyway. I'll post pics once we get it done!

~ Jeana

From the Mouths of Babes

About a year ago, my then five year old daughter Alivia found a unique way to express her frustration and said to me, "Mama, you're crackin' me crazy!" It struck me immediately how appropriate this phrase was for her. Alivia has fetal alcohol syndrome and has actual necrotic spots on her brain from the alcohol her birth mother consumed while she was pregnant. I've seen them--on an MRI--and try to keep that image in my head when Alivia is doing something that drives me crazy... which is a lot of the time. It's something I think most parents of kids with FASD have to do--remind themselves that their child can't help it, that their behaviors, their learning difficulties and memory problems, all their related problems are the outward indicators of an irreparable physical injury resulting from alcohol consumption while they were still in the womb.

FASD is characterized by a collection of behaviors, physical features, and health/neurological issues which may or may not be present in a given person depending on when the mother drank. In other words, no two kids are affected exactly the same way. Some kids show no physical anomalies and others, like my daughter, exhibit the typical smooth philtrum, wide spaced eyes, thin upper lip, and flat midface. Some appear completely normal in size; others, like my daughter, are extremely small for their age. And even though Alivia has the physical characteristics, she appears normal enough that most people just think she is younger than she actually is. Her peers are generally a good 6 to 8 inches taller than she is and more than double her weight. Some kids have such severe damage to the brain that they have below normal IQ's. Alivia is very intelligent, but struggles with some learning disabilities--much like a child with ADHD and dyslexia. The parts of her brain that are damaged are the parts that control things like sensory processing, impulsivity, and self-regulation.

You would think that knowing all this, that having seen that MRI would make it easier for me to deal with it. More patient and understanding. Sometimes it does--especially when I see other people becoming frustrated with her. But I have to admit that there are times when I get lulled by the seeming normalcy of a good day and I set my expectations too high only to have them blown out of the water (along with my temper) when Alivia is unable to cope/calm down/listen/follow directions/or whatever it is that day. Sometimes she cracks me crazy, too.

~ Jeana