She did it again! For the 5th time, DD cut her own hair! And of course she lied about it... first she said it wasn't cut (uhhh.. I saw it the other day and there was no short hunk in front). Then she said she was cutting paper (uhhh... unless you were using the scissors 3 inches from your eyeballs, I don't think so). I looked her in the eye, told her to think and speak honestly, so she defiantly announced, "Yes, I did it!" Grrrr...
And I have to admit, I was not in the "oh, I understand this is FASD and your brain does't think these things through" mood. I was (and still am, to be honest), in the "I'm furious because you did this again!!!" mood. Her rage and refusals afterwards didn't help my mood.
I really don't understand the thought process that goes into this... Every time it gets her in trouble. Every time it is a mess I have to clean up. Every time I know she's lying about it. She was growing her hair out in order to donate it - we've been putting up with extra long hair for months now, waiting for that last inch. Yes, other kids cut their hair, but at 3, not at 13.
Sigh.. and this was on top of her refusals last night... The day went wonderfully (even if the 15 min. homework assignment took her 1.5 hrs.), but then she was mad at bedtime because she didn't get done with shower/dressing in time for snack (despite extra time and several warnings), and was mad when I came up to make sure the teeth got brushed, so she clenched her teeth on the toothbrush and pulled the handle till the thick handle snapped. And then raged and complained her teeth hurt (well... your choice to use them as a lever to break the brush.) Have fun brushing with the short part for a few days.
I know I should be more patient and understanding. I know I should accept that it is her prenatal brain damage that causes her to make these poor choices. I know that she is doing amazingly well. I'll be back there in a little while. But right now, I'm just frustrated and tired.
Sunday, March 14, 2010
Tuesday, March 9, 2010
FASD in Hollywood
The other night I was watching a late night CSI: NY episode while folding laundry. It was the usual murder-mystery plot - this one involving a magician who was committing several well-planned murders against people he felt had betrayed him.
When the detectives started to suspect the magician, they did some research into his past. They claimed he had been adopted after his mother died in childbirth. His adoptive mother surrendered him when he was diagnosed with Fetal Alcohol Syndrome, "which is characterized by irrational behavior and violent rages" , because she feared for her own birth child's safety. Later, they said that people with FAS "have poor cause and effect thinking and an inability to distinguish fantasy from reality." Because this man felt rejected by his family, he lashed out and killed two friends and his adoptive mother.
I have so many objections to this portrayal of FASD, not the least of which is the negative portrayal of those who live with this disability. Don't our children face enough challenges integrating into society without the added stigma of being associated with violent, sociopathic murderers? (To be honest, the character I saw portrayed seemed much more consistent with RAD than FASD.)
Yes, some of these symptoms are seen in children and adults with FASD, but this in no way tells the whole story. Do they rage? Sometimes, but it is generally more a symptom of frustration and sensory overload, than a focused, murderous attack. Do they behave irrationally? There are days when it would seem so, but just because thought processes may not follow the "normal" path doesn't make them irrational. Are they unable to distinguish fantasy from reality? I haven't seen it, though sometimes my daughter misreads social or visual cues and becomes convinced of something we know isn't actually true. The only one that really hits the nail on the head is "poor cause and effect thinking," which I see in my daughter every day.
The crimes in the show were very carefully planned, very detailed and cruel. My daughter wouldn't hurt a fly, and is such a sweet, caring, and forgiving soul (when she doesn't hate me). And I have to tell you there is no way my daughter would be able to pull together something that complicated. Frankly, she'd get about 5 minutes into plotting and would be distracted by a butterfly.
Now, I know that FASD has a multitude of variations and manifestations. What I see in my child may be very different from what you see in yours. But this kind of portrayal paints an overly simplified picture of a complex disability. I suppose it is good that Hollywood is at least aware that FASD exists, but I'd much rather see an opportunity for a complex, honest portrayal of FASD which educates, than this sensationalized version.
When the detectives started to suspect the magician, they did some research into his past. They claimed he had been adopted after his mother died in childbirth. His adoptive mother surrendered him when he was diagnosed with Fetal Alcohol Syndrome, "which is characterized by irrational behavior and violent rages" , because she feared for her own birth child's safety. Later, they said that people with FAS "have poor cause and effect thinking and an inability to distinguish fantasy from reality." Because this man felt rejected by his family, he lashed out and killed two friends and his adoptive mother.
I have so many objections to this portrayal of FASD, not the least of which is the negative portrayal of those who live with this disability. Don't our children face enough challenges integrating into society without the added stigma of being associated with violent, sociopathic murderers? (To be honest, the character I saw portrayed seemed much more consistent with RAD than FASD.)
Yes, some of these symptoms are seen in children and adults with FASD, but this in no way tells the whole story. Do they rage? Sometimes, but it is generally more a symptom of frustration and sensory overload, than a focused, murderous attack. Do they behave irrationally? There are days when it would seem so, but just because thought processes may not follow the "normal" path doesn't make them irrational. Are they unable to distinguish fantasy from reality? I haven't seen it, though sometimes my daughter misreads social or visual cues and becomes convinced of something we know isn't actually true. The only one that really hits the nail on the head is "poor cause and effect thinking," which I see in my daughter every day.
The crimes in the show were very carefully planned, very detailed and cruel. My daughter wouldn't hurt a fly, and is such a sweet, caring, and forgiving soul (when she doesn't hate me). And I have to tell you there is no way my daughter would be able to pull together something that complicated. Frankly, she'd get about 5 minutes into plotting and would be distracted by a butterfly.
Now, I know that FASD has a multitude of variations and manifestations. What I see in my child may be very different from what you see in yours. But this kind of portrayal paints an overly simplified picture of a complex disability. I suppose it is good that Hollywood is at least aware that FASD exists, but I'd much rather see an opportunity for a complex, honest portrayal of FASD which educates, than this sensationalized version.
Saturday, March 6, 2010
Eleven Wonderful Years
Eleven years ago today, I was blessed to say, "I Will" to the most wonderful man. Isn't he cute! It's been an amazing 11 years, and I look forward to many, many more. I love you honey!
I like that instead of phrasing the vows with "I Do," our church's vows are phrased with "I Will." The former implies that yes, at this moment I agree. The latter suggests that not only do I agree now, but promise to continue to do so, through all the ups and downs over the years. I would happily say it again in a heartbeat.
OK, mushy stuff over. We had a great day - Kari's family and Linda's family came over for lunch and some relaxation. The kids all played great together, the parents enjoyed some chatting and laughter, and Andrew fell in love with our carpet cleaner. Oh, and he's planning on marrying our daughter. If he can remember her name. ;-)
Wednesday, March 3, 2010
It's Awful and Wonderful
Recently I read Ice Bound, the autobiography of a female doctor who spent the winter at the South Pole about 10 years ago, and discovered she had breast cancer while she was there. You might remember the story - they couldn't get her out because it was too cold for planes to land, so they did an airdrop of supplies, and she had to administer chemo to herself until she could safely be rescued. I really enjoyed this book, and by the time I was finished with it, I was ready to spend a winter at the south pole myself. It sounds like an amazing challenge.
But this isn't meant to be a book review. What I found particularly fascinating is the state of mind of the folks over-wintering at the pole (a.k.a. Polies). Conditions there are indescribably extreme. Captain Scott (an Antarctic explorer) summed it up with, "Great God, this is an awful place." Temperatures midwinter (June/July/August) can get down to 100 below zero. Connection to the outside world is limited to sporadic satellite connection once a day around the time of the equinox. A small group of people share close quarters, dwindling supplies, and decreasing daytime light. And yet they thrive, they learn to depend on each other, and year after year many of them return. It's an odd state of mind, and only those who have experienced it can truly understand. Most people would not be interested in duplicating their experience.
To me, this sounded somewhat familiar. The challenges we face as adoptive parents are hard to describe to those who have not experienced them. We live through extreme situations - most people find it hard to believe we're not exaggerating. We feel cut off from the "normal" world, and sometimes that can feel very restricting. Yet we thrive, make connections with others who understand, and come back for more, no matter how crazy that may seem to others.
The doctor sent a note home to her family a couple of months after her arrival. After being overwhelmed for several weeks by the challenges of living in such an extreme situation, she found she was finally starting to acclimate. This quote resonated with me:
I think we go through similar phases in our adoptive journeys. At first, everything is new and great (the "honeymoon period"). At times we may feel overwhelmed, wonder what insanity prompted us to take this journey, and wish there was a way out. But eventually we discover the rewards of parenting these kids and helping them find success. We build a new community which supports us through the rough spots. It is not paradise, and there are times it's completely awful, but would many of us change our choices, or our children, if we had the chance?
It is not paradise... nothing good is... I want to stay.
But this isn't meant to be a book review. What I found particularly fascinating is the state of mind of the folks over-wintering at the pole (a.k.a. Polies). Conditions there are indescribably extreme. Captain Scott (an Antarctic explorer) summed it up with, "Great God, this is an awful place." Temperatures midwinter (June/July/August) can get down to 100 below zero. Connection to the outside world is limited to sporadic satellite connection once a day around the time of the equinox. A small group of people share close quarters, dwindling supplies, and decreasing daytime light. And yet they thrive, they learn to depend on each other, and year after year many of them return. It's an odd state of mind, and only those who have experienced it can truly understand. Most people would not be interested in duplicating their experience.
To me, this sounded somewhat familiar. The challenges we face as adoptive parents are hard to describe to those who have not experienced them. We live through extreme situations - most people find it hard to believe we're not exaggerating. We feel cut off from the "normal" world, and sometimes that can feel very restricting. Yet we thrive, make connections with others who understand, and come back for more, no matter how crazy that may seem to others.
The doctor sent a note home to her family a couple of months after her arrival. After being overwhelmed for several weeks by the challenges of living in such an extreme situation, she found she was finally starting to acclimate. This quote resonated with me:
"It is awful and wonderful. It will kill you..., or make you whatever is happening to me. It is not paradise. Nothing good is. I want to stay."
I think we go through similar phases in our adoptive journeys. At first, everything is new and great (the "honeymoon period"). At times we may feel overwhelmed, wonder what insanity prompted us to take this journey, and wish there was a way out. But eventually we discover the rewards of parenting these kids and helping them find success. We build a new community which supports us through the rough spots. It is not paradise, and there are times it's completely awful, but would many of us change our choices, or our children, if we had the chance?
It is not paradise... nothing good is... I want to stay.
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