Tuesday, September 30, 2008

So much work to do . . .

This weekend I was asked where my husband works. I told them that he was stay-at-home daddy and had been since we adopted my special needs son. They asked what his needs were and I told them that he had Fetal Alcohol Syndrome. They looked puzzled and asked what that was. I explained that his mother had drank alcohol during pregnancy and he had pre-natal brain damage, I told them that he missing most of his corpus collosum. They said, "Does it still affect him?"

Bwahahahahaha! I nearly spit out my soda. Uh, yah. I explained he is moderately mentally handicapped, takes some heavy psychotropic drugs, has major behavioral issues and is highly impulsive can not be left unsupervised. They replied, "I've never heard of this disability."

It took me a minute to catch my breath. I don't blame this person. They seem to be a fairly well educated and well-rounded person. They are articulate and pleasant. They had not heard that drinking during pregnancy could cause lasting damage.

That scares me.

While reading blogs every once in awhile I come across a post about something that person is fired up about. Maybe it's autism or infertility or a genetic disorder. They always comment about how people are sorely lacking the information that will make their issue come to the forefront of people's consciousness. This is that post for me. . .

How can we as a country allow this to continue? This is the only birth defect that is ONE HUNDRED PERCENT preventable. Fetal Alcohol Syndrome would not exist if women did not drink during pregnancy. FASD occurs in about 10 or every1,000 live births or 40,000 children per year. FASD is now more prevalent than Spina Bifida, Down Syndrome and Cerebral Palsy combined. That is a sad thing. Many of these children will go undetected and many more will end up in our justice system. They will be lifetime offenders due to the inability to control their impulses. Many will be institutionalized because they lack even the most essential skills for living on their own. They will be lost in a world of mental health care and pharmaceuticals. Some will go on to be productive members of society and will learn coping techniques, but all of these situations could have been completely avoided if that liquor never passed the mother's lips and altered their developing brain.

So what can you do? Link to this post from your blog. If you don't want to link here, link to NOFAS, the National Organization on fetal Alcohol Syndrome or MOFAS, Minnesota's Organization, I tend to like their website more. Next time you are at a party or a family gathering tell them one of my stories, or Claudia's, or Kari's, or Barb's, Torina's, or Linda's or better yet, Cindy's. Tell them about Fetal Alcohol Syndrome, tell them it is 100 % preventable. Until we get the word out, there will be those who have no idea and their will be children born with serious repercussions. Please do not let this disability affect your family or your friends. Make sure these kids have fighting chance to lead a "typical" life.

On a personal note Dustin is struggling. He is angry and moody. This is typically a very difficult time of the year for him, but his anger is really growing. I am hoping it is simply a product of hormones since he is 13, but I am frightened that we are turning a corner and he needs a med change. I am not going there just yet, as I am hoping it is seasonal or an "anniversary" of sorts. We are attempting to kill him with kindness and patience, but it is really hard. Yesterday he ran out the house (into the fenced backyard which is progress) and he stayed in the playhouse for an hour refusing to come inside. The only thing that got him in was a phone call from Maizie and a really large storm approaching. He is obsessed with asking, "What will happen if I die?" and "Will you be sad if someone takes me?" and "Will the kids miss me when I am gone?" So I tend to think we are dealing with anniversary of removal issues. We are giving him plenty of one on one time and I hope this helps. We seems to get really good days now and then, so there is always hope. Keep us in your thoughts as it is really difficult right now.

Sunday, September 28, 2008

I'm getting old . . .

YEsterday I helped my friend, ANgie, move her bookstore.  Trust me, you have no idea how many books, activities, crafts, furniture, shelves, etc can be packed into a 1.000 square foot bookstore!  It was a tiring day, but one full of good friends, good food, and much kindness being shown to this wonderful family.  I worked from 9:30 in the morning til 7:00 at night.  Last night I still had some energy but went to bed early for me.  This morning my body hurts like an old woman.  My arms are terribly sore, but it was well worth it to help a friend.  

She has much to do still, but at least everything is in one place instead of two.  If you are in the area, you must stop by The Learning Garden in a few weeks for her opening weekend.  I'll let you know later. . . 

Friday, September 26, 2008

Happy Birthday dear one . . .

Today my baby girl is 5 years old. I am not a party-person at all. She really wanted a party, and who am I to say no . . . So, I decided I would invite all of her classmates who are girls and pick them up at daycare and deliver them back to daycare in a few hours. So now I am sitting at home with 5 little girls and loads of Hannah Montana singing . . .

She is having a blast. . .

Monday, September 22, 2008

A crappy pregnancy . . .

I'm all sentimental because my baby girl's birthday is the Friday. I cannot believe it has been 5 years since she made her appearance into the world. . .

The pregnancy was crazy. We had Dustin, 2 very demanding foster kids, 2 dogs (one a new puppy- or horse- he was a Great Dane), and Harrison was still a toddler himself. Not only that but, I am a sweaty mess in the summer. I get horrifically hot even when there isn't a large child growing inside me, so the summer was miserable. I was so sick that I never gained weight, it just moved around.

Then there were a carp load of issues. . . initially I tested positive that McCartney had Down's Syndrome. They actually asked if I wanted to continue with the pregnancy. Continue? Are you nuts? Why wouldn't I? So I had to have additional testing to see if it was accurate so they could determine if there was anything that warranted specialists at the birth. The first amnio didn't work. Didn't work you say? The doctor not only said I had to be FULL of water, but forgot and arrived 2 hours late. I was pregnant and FULL of water. I thought I would die. Then he poked me no less than 10 times trying to withdraw fluid. Nothing worked. I was miserable. I couldn't handle waiting the 2 weeks until the appointment with the specialist to do another amnio, but what choice did I have? I fretted and fretted for 14 days and got FULL of water again. The next amnio took all of 2 minutes and one poke.

I waited a week to find out that the test was a false positive and nothing was wrong. I didn't really care, but it was a relief to find out no specialists were needed. But, they asked if I wanted to know the sex of the baby. Since they grew chromosomes they knew definintely. I cried and cried that I had my girl.

Then at about 32 weeks I had an appointment with the OB and he said something about my rhogam shot. I asked him to clarify because the nurse the last pregnancy told me that I was B+ bloodtype. He looked back at the paperwork and he said I was B- and I was mistaken. I told him to look at my paperwork from the previous pregancy. Sure enough the nurse had mistakenly written B+ on the front of my chart. He said, "Well, no harm no fowl. Your inital bloodwork showed no signs of anti-bodies so unless you've breeched the placenta we have no problems." My eyes got really big and I said in a little voice, "I had an amnio." He sent me for the shot anyway telling me it wasn't a problem. The hospital freaked out. I freaked out. They told me all these awful scenarios that my body could be fighting my baby girl as we spoke. That she would need a total blood transfusion at birth, that she may not live. They said that if I knew Harrison was a negative like me it would be okay. I called the pediatrician, he had no record of his type. The hospital said they would have it in their records.

This was on a Friday night. I had to wait til Monday. On Monday I found out that something happened and the hospital did not take his blood so no one knew his type. I began freaking out and low and behold my OB walks into the record room, to check Harrison's type himself. I began screaming at him that his mistake could cost my child's life. He freaked out, rightfully so. We did a bunch of testing that day and he got emergency results. McCartney was fine. No anti-bodies. He actually asked if I was going to sue him. . . it could've been a very big mistake. Even through all this issues I really liked my doctor. . . not sure why. . .

At 37 weeks my bloodpressure that was normally perfect or low, sky-rocketed. I was put on bed rest and even though I was good and did what I was supposed to (we even had the kids go to respite) I began to lose my vision sometimes. They decided to induce. I went into the hospital on a Friday evening and they were going to start inducing in the morning. My mom went home to stay with Harrison and Robert went to Best Buy to get a tape for the video camera. I could not be restful, I kept telling them I was having contractions. They kept saying, "No. Nothing's registering on the machine." I didn't care what was registering. The OB came to check on me and left. Robert finally got back in and I told him to get the nurse NOW. She sighed and resigned to check me and I was already 10 centimeters. I felt like sticking my tongue out and saying "Told you so!" She turned to Robert and said, "If you want her mom here, you better call her NOW." My mom got there about 15 minutes later and I had McCartney 7 minutes after that. My doctor didn't even make it.

McCarenty was a pain even then . . . the world revolved around that pregnancy just as she thinks it revolves around her now . . .

I love her with every fiber of my being.

Thursday, September 18, 2008

A musical journey . . .

I was the child of hippies.  My dad loved music.  My mom tolerated it.  Truthfully it kind of annoys her.  She always says it's "too much input".  My dad gave me a healthy appreciation for music.  He worked at a factory and worked 7 days on and 2 days off.  I can remember being blasted awake early in the morning on his days off with blaring music.  He made me love classic rock.  He liked the Beatles, the Rolling Stones and that genre, but he also loved Mott the Hoople, Black Sabbath, AC-DC, and Blue Oyster Cult.  Really the only thing that was not allowed in our house was Pink Floyd.  I can vividly remember one day bringing home the Wish You Were Here on vinyl from a trip to Wooden Nickel.  My dad said, "No Pink Floyd in the house.  And if you play it I better not hear it."  I was shocked.  My friend Angie thought it was probably a bad memory from a bad trip long ago! Tee-Hee.

Anyhoo, I had a foundation for loving music.  As I grew into a teenager and my tastes turned to punk and alternative music, (you know back when my hair was pink the first time, LOL).  MY dad was actually supportive.  He didn't like it, but he could appreciate me liking something out of the norm.  I loved the Ramones, Social Distortion, Dead Kennedys, Sinead O'Connor, Dead Milkmen, Janes Addiction, Red Hot Chili Peppers, and Sonic Youth etc.  As I grew my tastes migrated a little to The Replacements, Edie Brickell, Smithereens, the Smiths, The Pixies, Elvis Costello, Pearl Jam, Bush and all that groovy angst-ridden teens music mixed with some of what my friend Andy used to call "tingly-England shit".  You know before 38 year old moms had pink hair and back when tattoos made you scary to "normal" people.  Back when we were outcasts and enjoyed it. 

When I got married to a hippie I went full circle right back to classic rock.  He tolerated my music, but I knew he didn't like it so it was relegated to when I was alone in the car or cleaning the house, or the shower.   I didn't mind, I enjoyed getting back to classic rock and with the death of my father shortly before I met Robert it helped me feel close to him.

So that brings us to the present.  I still break out Elvis Costello or Lloyd Cole  or jam to Matchbox 20 (swoon) while I am alone, but I have discovered Country.  Crazy I know.  But it all started innocently enough with talk of meeting some blogger friends at a Kenny Chesney concert.  I had heard that Kenny Chesney fans know how to tailgate and a friend at work was a big fan so we went.  I spent the entire summer listening to Kenny albums and memorizing songs so I wouldn't look like a fool.    I enjoyed it.   And we had a spectacular day at the concert.   She wisely said to me one day, "Sheri, you do know that there is some really great country music out there, you should give it a try."  She suggested some artists that I would like and the rest is, as they say, history.  

So today as I am driving in the car listening to my mix CD (I totally just typed "mixed tape" LOL) I was thinking about my musical journey.  I was thinking about how my former self would choke me if she knew I was listening to Jessica Simpson's new country song (which by the way is AMAZING) or Darrius Rucker's journey into country music (who my friend Tim refers to as  Blow-Me and the Hootie Fish).  

Well, maybe she wouldn't be to upset with me.  She was always a little bit of a rebel. . . 

Saturday, September 13, 2008

New neighbors . . .

We have new neighbors.  My wonderful renters moved today to Pittsburgh for a new job.  I am happy for them, but they will be missed.  I was fretting all day about getting into the house because my new renters need to be in by tomorrow.  The current renters were super slow and I didn't get in until 8:00 tonight.  

The new renters called and asked if they could help clean and move some stuff in tonight.  I was so pleasantly surprised when I walked into the house.  Everything was frickin' immaculate.  They had patched holes, touched up the walls, scrubbed the fridge and mopped everything.  I had so very little to do.   I thought for sure I would be up all night cleaning and painting, but I was only over there about an hour and a half.  In that time I moved the kitchen pantry, laid carpet in the front 2 rooms, swept out the window sills and re-mopped all the floors just 'cause. 

I took the week off work because I thought I would have more time to do what needed to be done before the new renters moved in.  But when this family wanted it and they needed to be in by Sunday I jumped at the chance.  This week I want to replace the bathroom floor and put in a new sink and vanity.  I also need to repaint the foyer, I didn't want to do it tonight since they were moving stuff in.  They are cool with me coming in while they are at work so it works all the way around.

The best part about this family is they have GIRLS.  McCartney is beside herself because the 5 year old was in her PreK class this summer and they are good buddies.  Right now our old friends are probably half way across Ohio.  We will miss them, but wish them well.

Friday, September 12, 2008

Car Conversations . . .

Harrison: Mommy, I'm very smart so when I grow up I want to be a teacher.

McCartney: Well, I'm very cute, so when I grow up I want to be a cheerleader.

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?

Thursday, September 04, 2008

Harrison Rocks . . .

This adorable child is amazing. I went to back to school night last night and I was thrilled that only 3 parents showed from my son's class. I got to speak to the teacher for some time and she raved about my boy.

She was very complimentary about his reading skills. First grade is fast paced and he thrives in the learning environment. His teacher told me that he is the best first grade reader she has seen. When I mentioned his behavior and that I was pleased, she was shocked.

I told her it was amazing that my boy had remained on GREEN every day this year. They use a card pulling system and GREEN means that he had no warnings and no offenses. I told her that we had a difficult start to the year last year and had decided to start ADD medication last January. She said that she would've had NO IDEA that my son ever had behavioral issues! Yay!

Of course we are still on medication, but the bedtime routine has been cemented and he matured incredibly over the summer. I see much less anxiety in him over the last week or so and I couldn't be happier. There have even been times when he told me about other boys behaviors and I asked him if he acted like that too. He assured me that he would never act like that, he's far too grown up and behaved for that. Nice.

I'm certain that he will have his own issues. I'm certain he will still act like a boy at some point and make a rude noise or gesture, but by this time last year he had been in the office already and had maybe had one GREEN card. I am pleased.

On the way home he told me that they have cameras on the bus with which the police can hear what goes on. I asked why he said that. He said his bus driver told him that after his seat partner used a cuss word. I asked if he said one. He said "Yes, but the police weren't listening then because I didn't get in trouble." Mortified I asked what word. He said, "The U word." Confused, I asked, "What U Word." To which he responded, "Mom, the one that goes under your pants."


That's my boy.

Dear darling Dustin . . .

Dustin has been a terribly rotten handful this week.

I am hoping it is simply transitional, but I am stressed that we are dealing with medication issues. His Lithium was increased to 3 pills daily. We had been stretching them out over the day. He began to wet the bed every night sometimes 3 times a night. Ugh!

Last week he had an appointment with the psychiatrist and he changed the Lithium to 3 pills all at once in the morning. The bed wetting has definitely slowed. But he seems really irritable and very on edge. I am hoping that it is not the medication, but is simply a period of grumpiness.

Dustin seems to have an anniversary this time of year. It was the time of year he was removed from his home. It was this time of year that he had his final visit with his mother. And it was this time of year he was kicked out of school. And it was this time of year that he was hospitalized the first time which was in a horrid facility in Indianapolis. (I have great regret over that decision) Autumn has always been a very difficult time in our household, it seems as he goes back to school and the weather begins to change he acts up. I am hoping that we are dealing with stressors that even he cannot put his finger on and not medication issues.

All of this combined with a new school year, differing routines, a different head teacher and 2 different teachers in his program are throwing him for a loop. I truly hope it levels out soon, I want me lovey Dustin back.