Tuesday, June 26, 2012

Fetal Alcohol Syndrome

I got into a discussion over on another blog about FAS and the fact that there is no known safe amount of alcohol consumption for pregnancy.   I highly doubt that it will drive any traffic over here (because they assume they know everything already!) but I thought I would pull out the fav FAS awareness post. . .

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?

Wednesday, June 20, 2012

To ask or not to ask . . .

I am a fairly open person.  I have no issues with chatting with someone in the grocery or educating someone one my child's issues.  As long as I think the person is being respectful and kind, I have problem with someone asking what the heck is different about my family or my kid. 

The other day, I read a post by Michelle about this very same thing.  Her darling Tori, is battling Neurofibromatosis and is currently undergoing chemo to shrink the size of the tumors in her brain.  Tori is an amazingly resilient child who loves her bald head and thinks she is a beautiful child regardless of her differences right now.  Part of that is likely because she has an amazing mama who will constantly fight for her and her differences, and partly because of her own personality. 

Michelle says, "I don't blame people for being curious. After all, she looks like a very happy little girl when she is skipping through the aisles of the store in her little dress. But she is very tiny, she has a huge red scar on the back of her little head and she is bald. Sometimes she looks very sick. Sometimes she is wearing a mask. I understand why they are curious."  Please go visit Tori's blog and give her some positive encouragement, some love and some prayers!  She is quite the amazing child.  I promise you will laugh at her  "Stop showing your boobs" campaign for Dancing With The Stars contestants.

Yesterday, I read a post by NieNie where she was asked in Jamba Juice what happened to her. She was distraught over this question.  In my personal view, I think the man was being respectful and wanted to teach his daughter that although people look different, we are all the same.  I am by no means suggesting that how she feels is wrong, she is entitled to her own feelings, and I respect that.  It just showed me that what some people think is ok, other people may not.

I am always willing to share Dustin's story with others.  I have grown so much from having a child like Dustin in my family.  I used to be quite judgmental of children that could not act appropriately in public and mostly blamed the parents for their children's behaviors.  Now, I am well aware that children's behaviors may not in fact be the parent's inability to parent even if the children seem completely typical.  I am much more patient and much more understanding.  I can remember a particular instance where my family was dining in a hotel restaurant when my kids were quite young.   Dustin was acting a fool and a family that was seated right next to us kept looking over.  At one point, Robert took Dustin out of the restaurant.  The mom came over and said, "I don't want you to think I am condemning you, I am a foster parent and I can see your child has impulse control issues.  Please don't think it bothers us."  I was so grateful for her actions. 

I think that most people mean well.  Or at least, it helps me to think that they do!  I try my best to think the best of people until I am proven wrong.  I think advocacy and educating people are always the best policy for my family.  But, I also understand that others are not so open about their issues and I respect that also.

Monday, June 18, 2012

Our new normal? . . .

We are a full week into summer vacation and we are all still alive.  For the most part things are even keel around here.  Dustin is doing fairly well and we have fallen into a basic routine.   Dustin and Robert are home all day while the kids and I go to daycare.  One on one Dustin is fairly decent so things go much better. 

Much better in my world is a fair cry from normal in most people's idea. 

We are still on constant supervision and likely will be anytime he is within reach of another person or animal.  He is very impulsive and does not have the ability to make good choices so that will likely not change.  We have some safeguards in place to help us, but in line supervision is our best bet at all times.  

His medications are fairly stable, but we rely on them heavily.  There are no options when it comes to taking medication.  The medications he is on have been the same for at least 3 years.  Any small change in dosage sends us reeling and we quickly head back to what works best. 

Therapy is fairly elusive in our world.  We could use the assistance of someone who can simply "witness" behaviors we see on a daily basis.  The problem is, with his IQ, they cannot justify "talk therapy".  They say that since he is unable to internalize what they are trying to help with, they cannot make progress.  So basically, he will not change so they cannot do therapy.  Nice eh?  We are still trying to find someone who is willing to provide some basic services.

The new diet we have embarked on has made some small impact on his behaviors.  It is not that his behaviors have changed, but they are definitely less intense.  Yesterday he ate some donut holes and last night's behavior was HORRIFIC.  It was obvious that sugar and/or processed food make him much more agitated and whiny.  I think the diet has helped us calm down a bit around here.  As an extra bonus, we no longer have snack food in the house so there is less food to hoard and obsess over. Win-win.

We are still having major issues dealing with the hormones of a 17 year old stuffed into the mind of a 6 year old.  That will always be a problem, and the impulsiveness just makes it all much, much worse.  Once again, in line supervision is really the only good way to keep everyone safe. 

The constant supervision is absolutely tiring.  It is hard, very hard to be vigilant every moment of every day.  But there are glimpses, brief moments where I can enjoy his company.  That is something that was lacking over the last few years.  I am pleased with that small bit of progress. 

I pray that as he grows we will have more small steps toward normal.  I want it for us, but I want it more for him!

Sunday, June 03, 2012

Introducing Dorothy . . .

A friend mentioned on facebook that she needed someone to come get a piano before she moved.She did not want to junk it and had no way to move it to the new city she as moving to.  I jumped on the chance.  The hubs has been wanting one for a long time.  I told him if he wanted it, he had to figure it all out.  After renting a UHaul and a furniture dolly,  Dorothy came home. She was a really ugly minty green and needed a good paint job.  I wanted something funky and decided to "henna" her.  I painted her an antique white and free handed some designs.  I think she is gorgeous!