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.


Kirk said...


I figured this was the best way to contact you since I couldn't find an e-mail address on your blog.

You and your blog readers could help thousands of public school kids by participating in the DonorsChoose.org Blogger Challenge, which starts on October 1. TechCrunch, BoingBoing, Engadget, BlogHer, Curbed, and many smaller bloggers are each creating challenge pages which list specific classroom requests in public schools--and then encouraging their readers to donate to those classroom requests. We hope you will consider participating, too.

During the last DonorsChoose.org Blogger Challenge, blog readers donated $420,000 toward classroom projects benefiting 75,000 students in low-income communities. This October, we're hoping to have an even bigger impact, and we keenly hope you will participate. Technorati is sponsoring the "generosity rankings" and Fortune magazine will be covering the bloggers whose readers help the most public school students.

All you would need to do is:

1. Pick a few classroom requests posted on DonorsChoose.org and add them to a challenge page which takes 1-2 minutes to set up. A quick glance at our search page...
...will show you the volume and variety of classroom needs from which to choose.

If you're pressed for time, just tell me the kinds of classroom requests (technology, arts, literature) that would speak most to your readers, and we'll set up a challenge page for you.

2. Do a post on October 1 encouraging your readers to donate to any of the classroom requests on your challenge page. Your readers can give as little as $5.

3. (Optional) Publish a widget which pulls in the classroom requests you have selected and shouts out to your blog readers who have donated to those requests. (Widgets will be available for download on Monday, and I can pass along some cool mockups if you’d like to see what they look like).

DonorsChoose.org grew out of a high school in the Bronx where teachers saw their students going without the materials needed to learn. Our website provides an easy way for everyday people to address this problem. Public school teachers post project requests that range from a $100 classroom library, to a $600 digital projector, to a $1,000 trip to the zoo. People like you can choose which projects to fund and then get photos and thank-you letters from the classroom.

BACKGROUND ON THE 2008 DONORSCHOOSE.ORG BLOGGER CHALLENGE In October of 2007, bloggers competed to see who could rally the most support for public schools via DonorsChoose.org. Blog readers gave $420,000 to classroom projects benefiting 75,000 students in low-income communities. While A-list bloggers like Engadget and TechCrunch inspired great generosity, smaller blogs with really engaged readers generated even more!

The next DonorsChoose.org Blogger Challenge, running through the month of October, promises to have an even bigger impact. Technorati is sponsoring the rankings, and Fortune magazine is already committed to covering the event.

If you were to participate, we could help thousands more kids in public schools. I'd love to tell you more if you are interested.

Thank you for your consideration,
kirk at donorschoose dot org

Kristina P. said...

Wow, I've been a social worker for years, but I didn't realize the FAS statistics were so high. I belong to a message board where sometimes the issue of pregnant women drinking is brought up.

Inevitably, women will talk about how their doctor told them they can drink a little bit, or a glass of wine a day, or their mom drank and they were fine, etc. It always makes me SO angry. Why even take the risk at all!?!?

Jo said...

Good post. Like you, I find it hard to believe that people haven't heard of it.

Torina said...

My daughter is a product of "a drink or two a day". My son is a product of binge drinking. My daughter: severely affected. My son: slightly affected. You just never know. So why take the risk???

My daughter will never drive, live independently, count money, subtract, and so on. She does not have a conscience, possess logic, or understand cause and effect. The brain damage is permanent. Forever. She is a great kid that didn't deserve what she got.

Anonymous said...

When we first signed up for where M is going to school now a professional said in response to me saying she had a chromosome disorder, "What does that mean?!"

I stared at her, "Are you serious?" I take it for granted that professionals are not always keeping up with their education and seeing that a lot more can contribute to Autism than Autism itself. I understand they would not know what her exact chromosome disorder meant for M but I would expect she would know something about chromosome disorders. Oh, well. I provided a big packet on what a chromosome disorder is. Hopefully it helped!

It is so frustrating to run into situations like you describe here. I think though that unless people are touched with a special needs person in their life they tend to stay closed off on the topics.

I had never heard of FAS until we adopted M and it was considered as a possible diagnosis. I will get something on my blog in regards to FAS soon.

I am so sorry Dustin is struggling again. It is always a constant struggle here in one way or another but you describe an escalation in behavior. That is never easy to deal with. Figuring out if it is something at school, home or medication related, horomones....it is so hard to figure out.

We still would like to do something with Dustin soon. M really wants to get together with him. Hopefully he will be feeling up to it soon. Sending prayers and hugs. If you guys ever need anything please call me.!

FAScinated said...

Well said. And, as always, your family is in my prayers. ~Kari