Friday, August 6, 2010

FAS-- it's time we talk about it

Okay, I know I've said many times before I'd discuss FAS.  It is indeed a part of our family and will be for life.  Many people have misconceptions of FAS/ FAE and I'd like to dispell some of those misconceptions on here.  I'd also like to discuss what life is like w/ an FAS child.  I'm going to be honest so if you think I'm being mean, I'm not.  It is honesty.  It really is.  And unless you live the life w/ a child w/ FAS 24/7, you still will NOT get it.  We tell folks all the time and again, unless it is a part of you everyday, everyday, you will only be able to understand a smidgen of this complicated disorder.  The only birth defect that is 100% preventable.  The only one.  There are so many things I'd like to discuss but know it is just information overload for some. 

The myths.  Oh, my are there SO many myths out there regarding FAS.  I think some folks actually panic when they here the diagnosis.  Like it is an end all be all kind of thing.  It's not as long as you take things piece by piece.  I think I was very fortunate to have no idea what it was exactly that I was dealing w/ for a few years before I got a diagnosis.  Maybe it would have scared me off like so many other people.  I don't know.  I digress.  Back to FAS and the myths. 

Myth #1--FAE is much less a problem than FAS.  Umm, no.  Only difference really seems to be that they don't have the facial features of FAS.  It does NOT mean it is any less difficult or that you won't have as many problems.  I know this for a reason.  Yana is one of the most difficult children we have and she has FAE, not FAS.  FAE is just as devastating for families and it does not make it any less significant than a child being dx'd w/ FAS.


Myth #2--Children w/ FAS are not very intelligent.  Umm, wrong again.  85% of children w/ FAS will have normal to above normal intelligence.  This seems to be the statistics w/ our 6 as well w/ FAS/FAE.  There are not nearly as many children with FAS that are mentally challenged as well.  I have 2 that are mentally challenged.  The rest are of normal intelligence.

Myth #3-- FAS children will always be medicated.  I have heard people say this over and over for many years.  This is just not true.  Yes, many are indeed medicated and so are some of mine.  Out of my 6 though, 3 are medicated.  Sometimes it is also a personal choice parents of children w/ FAS make.  We were given the choice to give Yana mood stabilizers years ago.  We opted against it b/c we truly thought we could help her heal.  Was it an easy call?  NO!  There were times I wanted to cave and go for those mood stabilizers but did not.  Now, my three that are on medications I do feel could not survive w/out them.

Myth #4-- FAS children will land in jail, get in trouble w/ the law, go to an RTC, end up pregnant, etc. by the time they're 14, 15, 16, etc.  I heard this for many years and can tell you it scared the crap out of me!  I was terrified I'd always be one of those mothers who ended up at the jailhouse w/ their child.  This is a myth.  Yes, these children are more likely to get in trouble given their lack of judgement and lack of cause & effect thinking, but frankly, it is NOT a definite.  For us, we now have a 14yo(almost 15), 15yo and 17.5 yo.  None have been in trouble w/ the law, none have gotten in trouble in school(other than the minor note passing or gum chewing kind of stuff), none have gone to an RTC, none are pregnant, etc.  Could it happen?  Yes.  But it could happen to normal families too.  I had a relative once who got in serious trouble in high school.  NOT an adoptive family, but a "normal" family.  It happens.  Just b/c you have FAS though, doesn't mean it will happen to you.  And, I do believe there are things you can do to help prevent it from happening.  I'll discuss that at a later time.  Not saying it's a guarantee it won't happen but can't hurt.

Myth #5-- I had an IA doctor check out my referral and it's fine.  Oh my.  If I had a dime for every time I heard about a family who was told their child is low risk, I'd be rich.  I have heard from quite a few families that had their referrals reviewed by IA specialists and said they had nothing to worry about.  Though I do think nowadays they are being way more cautious than they used to be at saying that.  

Myth #6--Almost all children coming from EE orphanages are alcohol effected.  Just not true.  Though, the number is incredibly high, not all are effected by alcohol.  Of my 7, 6 are alcohol effected and all those are from Russia.  I think the current statistic is 57% of kids adopted from EE are alcohol effected. 

Myth #7-- If I have a child with FAS, I will not be able to take them out anywhere.  This is not true.  Yes, you will have to modify things and maybe do a quick behavior lecture before you go into a store but it really isn't too bad.  I shop with not only my kids but some of their friends as well.

Myth #8-- My FAS kids will not be able to have friends.  Though it is true they have a tougher time making friends, it is not impossible for them to have friends.  And no, their friends do not even have to know they have this disorder.  My kids do have friends.  Alyona has 2 close friends.  Irina has 2 close friends.  Same with Yana.  None of them have issues w/ getting invited to go places or to parties.  However, mine know what are expected of them and I have no issues w/ telling my kids they can't go back somewhere if they were to misbehave.  Just ask Alex who missed out on a sleepover one day.  They remember that stuff. 


Myth #9-- FAS kids won't be able to learn much in school due to their disorder.  Umm, big fat NO.  Don't ever let anyone tell you your kid can't learn.  Not true.  They told me Irina would never pass a second grade level.  She's going into 10th grade.  She can do about an 8th grade level in most things.  Way past the doom & gloom predictions.  However, I push my kids quite a bit.  We don't accept "I don't know" as an excuse in this household.  Just this morning, I did not allow Alyona to leave the table until she answered a question.  And yes, it may sound harsh and mean but did I get an answer?  Yes.  Is she any more traumatized from the Q & A session than before we started?  No.  Though Alyona is much more mentally challenged than the rest, I do know that she is capable of doing certain things.  I want my kids to reach their fullest potential and sometimes have to push to get it.  Alex is repeating third grade this year.  He'll tell you flat out he was lazy last year.  It was true.  Warned him all year but he didn't listen.  Sometimes, it is just life lessons these kids have to learn.  Nothing more, nothing less.  But I truly believe every FAS child is indeed capable of learning much more than professionals give them credit for.

Myth #10- My child "looks" normal so they must not have FAS or FAE.  I think many folks have this misconception of how a child with FAS should look.  What many don't know is many grow out of that stereotypical look as they grow older.  The facial features become less and less prevalent the older the child gets.  I personally think this is why many adopting older children don't consider that their children may have it.  Out of all our kids, Alyona is the one who still seems to have the facial features we all associate with this disorder.  We recently went through the kids old pictures.  It is abundantly clear now to us the features they all had when younger but isn't very noticeable now.  What gets me about this look is how it is just so differenet from child to child.  Nik's birth mother we are told drank almost everyday.  Heavy drinker yet he is the one with the least characteristics of FAS/ FAE.  A big myth though is going strictly by looks to dx the child.  There is a very, very small window of opportunity for the facial features to develop in utero.  If the mother did not drink during that window of time, they will not have those predominant features.  I can't remember if it was around day 21 of pregnancy or not.  Have to get my fact sheet out one of these days.  

Now, my little disclaimer...  I am NOT a professional nor do I claim to be.  These are simply myths that I myself have noticed over the last ten years.  Things I've heard on boards or at seminars or from other families.   These are really just my observations,nothing more.  

I will talk tomorrow about FACTS of FAS and symptoms of the disorder.  After that, I'll have another post about things we do in this house to help minimize the effects this disorder has on our children.  Have a wonderful weekend everyone.  We have a tax-free weekend here and plan on taking the kids school shopping.  Yikes!  Wish us luck.  LOL.  I think we'll divide and conquer.  I just have my kids here today and it is remarkably quiet.  I think everyone is tired a bit from VBS.  We all had a great time and can't wait to go on Sunday to church.  Max is actually reading some scripture.  He's going to memorize it!  We asked if he was sure and he said yes.  This is huge for him for 2 reasons:  1)  Max hates speaking in front of people & especially, crowds.  2)  Max has FAS w/ short-term memory issues & trouble memorizing stuff.  I can not wait to see him speak.  It will be quite the accomplishment for him for sure.  Very proud for him to take the initiative to do it.  Keep you posted.   

1 comment:

  1. #5!!!
    BTDT...and paid a whole lot of money to that IA doc too... much better to hire a private investigator in Russia!
    Amy

    ReplyDelete