Tuesday, September 09, 2008

9th month, 9th day - FAS Awareness Day . . .

Some of the most common characteristics of alcohol related brain-damage include: poor impulse control and poor problem solving skills, inability to predict what may happen next, difficulty linking actions to consequences, poor social communication (inability to read environments and adapt behavior accordingly), limited abstract reasoning and lack of trial and error learning. In addition, people with FAS/FAE have great difficulty internalizing values, feelings and laws. Therefore, they do not feel empathy for others or have a sense of justice. They can be entirely unattached, feeling nothing, even for the people who raise them. Because of these deficits, they have no internalized sense of right and wrong. A person with no morals, empathy, values or feelings can be a danger to themselves and to society.

Fetal Alcohol Spectrum Disorders are a spectrum of disorders that are a permanent part of that child FOREVER because the mother made a choice to drink while pregnant. It is a 100% preventable birth defect. Pre-natal alcohol exposure was a choice. My son's mother chose to put that bottle to her lips and drink, injuring his future and forever altering the physical make-up of his brain. Intentional? No. But permanent nonetheless.

Education is the best medicine for Fetal Alcohol Spectrum Disorders. We MUST educate women who are pregnant. We must educate women of child bearing age, whether trying to conceive or not, that you do not drink if there is a possibility of pregnancy. Let's face it. Most women don't know that they are pregnant for at very least 3 weeks after conception . During that time you could have already altered your child's brain, is it worth it? We must also educate doctors that there is no safe amount of alcohol to be consumed during pregnancy. Doctors who tell a patient to put their feet up and have a simple glass of wine are negligent. They need education.

My child's life was stolen from him. Just as a drunk driver hits a child crossing the street and permanently disables her, my son was blind-sided by a drunk mother. The vehicle just happened to be an ambilical cord full of liquor. My son was robbed of a life he could've had.

If that sounds like anger it is. I am irritated at the selfishness. I am angry at the lack of education. I am frustrated in dealing with this disorder every day. I love my boy and wish only the best for him. But, while mother's of other 13 year olds are dropping their child of for a day at the mall, I am looking at my son watching pre-school TV. While those mothers are leaving their sons at a friend's house for the night, I am drugging my son with very dangerous psychotropic meds to help him fend off the hallucinations and get a restful night sleep. I don't grieve for myself, I mourn the loss of my son's life.

Is he happy? Sure. Is he loved? Absolutely. His brain is broken. There are missing pieces. A few examples:

1. I am sitting on the couch watching televisions. He is in the chair not more than 3 feet from me. He has just been told to leave the cat alone because he has tried to keep him on his lap when the cat wanted down. About 3 minutes later the cat saunters past him. He says, "Ozzy, come here kitty." in a normal voice. I look at him. He says, "What? I didn't do anything." "Dustin I heard you call the cat." "You did? How?"

If I wasn't looking at him he has no idea how I heard him. He cannot fathom that I caught him. He denies it. With every fiber of his being he denies calling the cat. He begins to whine and cry and hit is legs in anger. I let it go. I have said nothing more. He continues to holler that he did not call the cat. I say, "Okay. Just leave the cat alone please." Not 3 minutes later I see him out of the corner of my eye looking at me. Waving his arms. I say "Dustin, I see you." He wait about 2 minutes and slaps his knees to call the cat, and says, "Here Ozzy." In a normal voice. I look at him over he top of my glasses and he raises his hands in the air and says, "What?". Argh!

2. Dustin is CONSTANTLY hungry. If I let the child eat every time he said he was hungry we would be in the poor house and he would be sick. I buy him chips for the next day after school. Despite my efforts at trying to keep them a secret he finds them. He asks if he can have them. I tell him no, it is almost bedtime. I tell him that he can earn them for a snack after school. About 3 minutes later he haaaaaaaaaaas to go to the bathroom. I send him upstairs to avoid the kitchen because I know he is trying to get he chips. Two minutes later he asks to let the dog in, once again having to go through the kitchen. No thank you Dustin. He asks to play on the computer. Sure. About 5 minutes later I notice he is missing. The chips are open and he is munching and crunching in the kitchen. RATS. Foiled again. I have him put them away and return to the living room. He is watching TV at the kids television in the room right next to me, in full view. About 10 minutes later, I notice he is sitting on the floor. Unusual. I notice he is sticking his hand under the couch. EATING CHIPS. "Dustin put the chips back in the kitchen." I put him on the chair next to me. 20 minutes pass, the asking is over. I think we are in the clear. I ask him to go shower, he has to go through the kitchen. He showers and then runs upstairs to get underwear. I realize is taking a remarkably long time to get on underwear. He comes downstairs with a mouthful of barbecue chips. "Dustin, put the chips away and get your pills for bed." He complies. Morning comes, I decide to have a small baggie of chips to take to work. I open the cabinet, no chips. I find the empty bag under his bed. Argh!

This is my life.
Object permanence is missing.
Impulsivity rules.

My child cannot ride a bicycle. He automatic memory is broken.

My son cannot read at more than a pre-school level.

My son cannot be left unsupervised very often.

My son cannot walk around the block alone.

My son cannot remember his address or phone number.

My son cannot understand risky behaviors and avoid them.

My son constantly needs an "external brain" to guide his behaviors and impulses.

My son cannot be medication free without hallucinating and living in another world.

My son cannot sleep without medication.

My son cannot be left alone.

My son cannot see consequences of his actions, or even see they are related.

My son cannot ever have the life he should've had, but my son CAN live a wonderful life that we have created for him and CAN say he is cared for and LOVED unconditionally.

Fetal Alcohol Spectrum Disorders CAN be eliminated. Not one more child needs to suffer their effects. Not one more child needs to grow up with the uncertainty, the impulsivity and the frustration of having their brain permanently altered due to their mother's choices. It can happen. Get out there. Educate.

And while your at it, if you go to the store can you buy me a bag of chips?


FAScinated said...

Thanks for everything you do to raise awareness about FASD. There are so many things in this world that it seems we can't do anything about, but this is something we can stop immediately without stem cell research or experiemental vaccines! We just need people to know what this did to our kids and to STOP drinking during pregnancy!

Happy FASDay. I'll join you in that bag of chips. ~Kari

Jo said...

Breaks my heart. He and Little Man almost sound like twins. Except Little Man is never hungry, that part of him is broken. For us, we will never know how much of what is wrong is due to the alcohol, although at least some of it is.

PreSchoolMama said...

Have you ever thought about doing a training at work. Having some of the kids in class with this, I don't think we know what they have and what it means. Like when you said Dustin has no empathy for people that are hurt or if he dosen't see you catch him in the act he thinks he's got away with. As I read this I realize espicaaly my class last year I could of done things a lot better realizing some of the things I've learned from you and by your sharing.

Anonymous said...

Thank you for sharing this post Sheri. Lots of good information here. I do hope that in time the anger subsides for you. I understand this anger because I have struggled with it as well in regards to M's birth parents/ genetics, etc. Somtimes it fuels me to advocating but it can weigh me down as well.

Dustin is such a great kid. Challenging as well, I am sure. M so wants to see him soon. Maybe a new movie will come out soon that I can take the two of them to.

Carol said...

Hi Sheri,

I just got to this post. Thanks for sharing the reality of FASD. I'm glad that you and Robert are there for Dustin.