Sunday, September 23, 2012

FASD Awareness Day-- How I feel

Once again, I'm going to be open and honest and this may not come off quite right to some.  Some may say I'm doing a disservice to the issue.  I don't think I am.  But I do think some things need to be said.  There are many little posts on Facebook going around w/ babies and kids and saying not to drink while pregnant.  I know, I've passed a few around myself.  And here comes in where I may just sound hypocritical.  Oh well.  See, I've always known not to drink while pregnant though I've never been pregnant.  Just one of those things I'd always heard.  Knew.  It's not good for the baby.  I truly think the majority of the population already knows this and the focus of FASD also needs to be placed elsewhere.  Like on the children that are already living w/ this disorder.  Many of the folks who drink while pregnant, were going to do it anyway.  Just the way I feel according to my kids' birth records as somewhat of a guide.  That & on some of the FAS boards where they have proof birth parent still drinks.  It's like trying to stop an earthquake.  It's not going to happen.

Again, just to reiterate as I'm sure I've ruffled a few feathers by now, I don't think we should concentrate on the not drinking while pregnant.  I think there needs to be an awareness all around.  I know for a fact some are trying to do this.  However, it's hard.  It's hard I feel b/c such 'taboo' is placed on this disorder.  It is 100% preventable.  Why give so much attention to something that IS preventable??  Main answer is because we have to.  We have to let people know it's bad.  Deep down, I think they do.  I just think some of them in the world don't know any better.

Now, as for the awareness to the other part, it needs to be bold, big.  However, how do you do that w/out insulting the kids that it happens to?  It's a very hard subject for them.  They hate standing out as it is and bringing attention to it sometimes isn't helping them.  It's a fine line to walk for sure.  Most teens know they have FASD and they just want to be "normal."  If you bring attention to this disorder on the many ways they are not "normal," how do you think that will make them feel?  I want to bring awareness to the professional community and educational community for sure.  They are SO out of touch!  It's pathetic.  Truly is.  I want to bring awareness everywhere.  BUT, I also want to bring awareness w/out making the children feel ashamed or stand out. I truly think it may be a bit impossible.  As you know, I don't write a whole lot about FASD on my blog.  I let my kids be the example of how things can be. 

In short, I think awareness for this disorder is awesome.  However, I think we need to tread lightly as to not hurt the kids themselves that this effects.  Many times, it's hard enough for them to deal with the fact that their birth mothers drank.  They don't really want that plastered all over posters and such as a constant reminder. I think professionals and educators are the main ones we need to target.  We need constant support.  Respite.  We need people to understand this disorder and understand what it means to live with someone who has it.  It's hard and understanding needs to take forefront.  Parents do not need to be constantly criticized.  I have heard it for years.  Relatives do this too unintentionally as well.  "more discipline."  More rules. Etc.  They have no clue and when you say permanent brain damage, they just can't wrap their minds around it.  Awareness is key.  Many to this day still have no clue what FASD is.  I will keep spreading the word but it is still a subject that I have to be careful with.  Many spoke at their churches. I did not.  Not because I didn't want to but b/c my kids attend.  They would not care to have their personal pasts plastered for everyone to judge.  I know it's important to get the word out but I also want to be careful as to not do it the wrong way where it would jeopardize the kids in any way.  I hope that made sense.  I am all for awareness but I think it may need a different approach.  Again, these are just MY OPINIONS.  Period.  That's all they are....opinions.  Awareness day was September 9th.  It was not on the media outlets too much.  One day, maybe that will change.   One day, we may be able to do what is best for the kids with FASD.  One day at a time is how we approach this disorder.  Because as you all know, what works one day with these kids, may not work the next.   Awareness to professionals, doctors, police officers, caretakers, and educators is where I personally think the focus needs to lay.  Alcohol is a drug.  People  know that drugs are bad for the baby.  Yet, there are drug addicted babies born still to this day.  How do you help the people this has already happened to?  You have to get to that point in awareness w/ FASD like we did w/ Don't Do Drugs years ago campaign.  Maybe little by little, we'll get there as a group.  I do hope so. 

1 comment:

  1. I totally agree, as a mom to twin daughters who both have FASD and were also adopted from eastern europe at age 7, they have more than just FASD to deal with. They are beautiful 18 year old girls now, who from the outside do not appear to have any disabilities. Life is so hard for them, not anywhere near "normal", yet that is what they desire so badly. They know they are different, but are not to the point where they can accept their disabilities. They may never, that's how this works.... as you know. I too get that we need to educate about the preventive side, however we live on the other side. We need to figure out how to help not just the kids with FASD, but also the adults with FASD as this is permanent and they don't outgrow it. While most of our community (small rural area) know my girls have some kind of "issues", the knowledge has been spread from neighbor to neighbor - nothing official. While my daughters are still in high school, we simply cannot go out and broadcast their disabilty. They are already embarassed and humiliated on a daily basis at school, can't imagine how they would feel as poster kids for this disorder. I too wish I had better solutions, but as we have done all a long, we do what we need to do on a daily basis to give our girls as much respect and dignity as they deserve. Perhaps someday when they are more comfortable, who knows, as you said in your post - each day is a new day.