Thursday, August 30, 2012

FAS-- what's it really like?

Alright, I'm going to dive in and be honest.  I'll start by saying I am not an expert of any kind nor do I claim to be.  I am just a parent of 6 kids living with FASD.  I am giving my experience based on my opinions and my kids.  Every person will have a different experience.  Disclaimer done.

FASD.  Fetal Alcohol Spectrum Disorder.  Used to be FAS, FAE, etc.  Now, all one.  Frankly, it's b/c they all are affected no matter whether you have the facial features or not.  Just the way it goes.  I hate it when people used to think if you had an FAE dx that it was sometimes "less harsh."  HA!  Not true.  So, I just call it FAS.  Use the D if you want to. It's all the same to me.  Chaos.  Yes, it's chaotic having a kid w/ FAS.  It truly is.  Would you like not knowing what's going to happen from one minute to the next?  No. Would you like having to be an external brain 24/7?  No.  Would you like having to say the same thing over and over and over again.  Would you like having to say the same thing over and over and over again?  No.  See how annoying that is?   Would you like having to say your child's name 50 times a day?  No.  Would you like something broken everyday in your home?  No.  Yet, this is what it is like day after day after day of living w/ a child that has FAS.  Try having 6 of them w/ the disorder.  It's maddening at times.

I'm not going to sugar coat this post.  I think it needs to be honest.  Honest despite having to live amongst pathological liars day in and day out.  Now granted, over the years we've been better equipped to deal with all this stuff that comes with FAS.  However, it does not mean it's any easier.  Not one bit.  I will discuss two main things that I think most FAS parents will tell you drives them the craziest....the lying and the stealing.  It's sad but true.  Now, first you must remember that FAS is the ONLY 100% preventable birth defect.  The only one.  Just don't drink while pregnant.  So simple yet look how many kids are affected by this disorder.  I digress.

Lying and stealing are hard to cope with.  Whether you understand they have frontal lobe brain damage or not, it is still hard to deal with.  I understand they have brain damage.  However, I understand if they want to become productive and honorable citizens in society, they must, must get this concept that lying and stealing are wrong.  Brain damage or not, it's wrong.  I don't care who you are, you are indeed capable of learning right from wrong and I will not believe otherwise.  And, if you all think I'm just talking and have only kids w/ FAS, you are sorely wrong.  Very wrong.  All my kids w/ FAS have multiple mental health disorders.  I will not share which child has which and if you'll notice, this post will contain no names.  It's not important who has what. It's not. It's more important you deal with what you've been given.  We have FAS, RAD, ADHD, ODD, OCD, PTSD, Sensory integration, possible schizophrenia, autism, and way too many others to name.  Some of ours are on meds, some are not.

Back to the topic...lying and stealing.  You can indeed teach even the most difficult cases right from wrong.  It may take years, but it can be done.  We use lots of analogies in this house.  You also must lead by example.  We had a child beg to go to his brother's friend's house w/ him.  I let him go.  He ended up stealing little toys.  Now, in this house full of FASers, we can tell right off the bat who's lying and who's not.  It's easy and truly I should become a profiler in my next life.  Anyhow, kid came home w/out his brother so I knew something was up.  right then and there I patted him down.  Sure enough, evidence.  I don't accept excuses when they are caught red-handed.  He was grounded and became an 'inmate' of prison camp.  I make it abundantly clear from a very, very young age if this behavior continues you will end up in jail.  I leave nothing about it vague.  If they want to act like common criminals, they will be treated as such.  They will get fed but there are NO other goodies and nothing but water to drink.  During prison camp time is when we find ourselves purchasing extra goodies just to prove a point.  Prison camp is highly regimented.  It is saved for when you do something really, really bad.  And sorry, but stealing in our minds is really, really bad.  And don't give me the bologna of well they have no cause and effect thinking.  Umm, you're right....sort of.  If they have the ability to conceal what they stole, they know dog gone well it was wrong.  Plain and simple.  Hate it when other FAS parents make excuses for the kids...they didn't know any better.  Umm, hence why you are their external brain.  You must think for them.  Prison camp entails working all day.  Chores that you wouldn't normally do.  You make it the most unpleasant experience so that they want to avoid it as much as they can.  Since FAS kids are so visual, they must see what they did wrong.  Something tangible.  A physical chore.  If  you just say you're grounded, they really won't get it that often.

If you take an FASer with you that is prone to steal, you have a person assigned to them.  Yes, we do this.  It's our safety net.  It may sound horrible not to trust a child but when you are dealing w/ serious FAS and RAD,  you must take precautions yet let them think they have some freedom too.  They are allowed to look.  Yes.  Touching is too tempting though they do it.  With stealing, you just have to take it and deal with it as it comes.  Punish them if they steal.  We always say "you chose to do the wrong thing.  You will be punished for that."  Never back down and reinforce what you say.

Now, lying.  This one is SO hard.  It really is.  It's just that it is so dog gone frustrating b/c it is more of a compulsion.  I wish I had a better answer for this one.  First, you have to talk it out and it will drive you insane b/c they are convinced w/ all their being that they did NOT LIE.  At first,  you'll want to believe it.  Do not.  It will not do the child any good to cave into their lies.  They lie like it's second nature. Point out every single lie even if it is a little one.  Why?  Because they need to learn what is a lie and what is not.  They learn from the bottom up.  Usually, a lie here is to cover up something they've done that was wrong.  Some of our kids have finally learned that you will get less of a punishment or even possibly none (depending upon the degree of the lie) if you just fess up say you did it, why and why it was wrong.  Apologize to the person that you lied to.  We do not tolerate lying in this house.  My kids know I hate it with a passion.  hate it.  And once again, you have to know how to tell the truth to fit into society in young adulthood.  Drill it into them.  From day one.  No excuses.  Don't blame it on the FAS.  It is what it is.  A lie.

Did you know we get compliments on our kids' behavior almost every time we go out?  I'm not bragging.  I'm not.  I'm just saying it CAN be done with FAS kids.  My kids know if they don't behave we're going right back home.  Starts in the driveway.  On more than one occasion, we did not even make it out of the drive way.  They know we say what we mean.  Period.  In our house there is a saying.  " You're no different than anybody else."  I don't care if you have one leg, deaf or FAS or whatever else.  I don't care if you're missing a big piece of your brain.  I really don't care.  I care how you behave, how you act in life, what you can learn, etc.  Not what you have.  It's not about that.  I guess that's why I tell on this blog more of our life and not about all the dx's we have in this house.  Do my kids misbehave?  Absolutely!  Don't all kids misbehave at some point?  We have dealt w/ violence in this house, eating issues, deep rooted psychological issues, stealing, lying, manipulation, triangulation and just about anything else you can name.  Running away.  One made it to the driveway b/c it was too hot.(105 that day).  One made it to our woods by the house and hid in a log.  Point I'm trying to make is we've dealt w/ more emotions, trauma, mental heatlh issues, etc. then most folks will in a life time.  You have to teach your kids they are stronger than the disorder.  I had one kid find a piece of paper that was printed out on the table.  It had columns of mental health disorders and the characteristics of each one.  The child said which ones do I have?  I told them.  They checked them off, looked at me and said I can change some of these but not all.  They were being honest and ready to give it a shot.  Hung it on their bulletin board and looked at it for months and worked on it too!  It can be done. 

My kids know they have FAS.  Do we harp on it?  No.  Do we harp on them if they don't clean their rooms or don't do well in school?  You betch ya!  FAS is hard.  It is.  Most folks w/ even one FAS child has respite or at least can 'get away.'  I've been told by many in the special needs adoption community that it is vital to get away from it all every once in awhile.  As much as I long for a 2 or 3 day vacation, it's not possible here.  So, I make the best of the situation.  You know the song... "If you're going through Hell, keep on going, don't slow down.  If you're scared don't show it.  You might get out before the Devil even knows you're there."  That's how I feel in our FAS world some days.  I just know I have to muddle through with out a break.  And that's okay.  Hard, but okay.

I know no one would understand parenting an FAS child until it happens to them.  I have talked to countless folks over the years & most have called me up.  Not sure how my name got around that I know squat about FAS but apparently, it did.  I'm honest when I talk to people.  Tell them what to expect, it's not a cake walk, it can be lived with and you can make it the best possible life you can.  Many go to adopt a certain special need.  I've seen it time and time again.  They can handle that need however they were not expecting FAS to be a part of that.  It's a wake up call for sure.  Last year I was in Bulgaria.  I will never forget b/c there was a new adoptive mom there.  She said oh, so there only special need is that they're older?  Umm, no!  This is another reason why people can't understand FAS.  It is the invisible disability.  They treat my child w/ a missing leg like there is something "wrong" with him.  He is mentally JUST FINE!  He's only missing a leg folks!  My others have life long disabilities that will never ever go away.  They have permanent brain damage but b/c they can't "see" it, they assume nothing is wrong and then question why one of the kids will act half their age.  URGHHH!!!  I think that is another very frustrating point for FAS parents.  No one sees it, so no one understands it so you are always under fire for your parenting skills.  We have family that does this to us as well.  It's hard.  Why'd you blame that child versus this one?  Well, let's see, that one has lied every single day of his life, attacked his brother earlier so truly, that's where the blame goes. Don't judge unless you live w/ FAS for 24/7.  It is indeed different. 

FAS kids are very, very visual.   You have to show them everything or they seriously won't get it.  Money is a huge issue for them.  Huge.  We are ending the gift of money/ gift cards in January.  I know it will be difficult on the people that give them but they truly don't understand the turmoil we go through w/ these kids and money.  If they insist on gift cards, I think we'll go purchase a gift and put a tag on it from them.  We honestly can not take much more.  Money gets  lost, it gets stolen from sibs, they don't understand how much things are, etc.  This is not as simple as go to the store and pick something out.  No.  It's a big production.  And with multiple FASers, it's enough to send  you over the edge. 

Now, some kids despite your best parenting skills, they will not make it.  As you know, many FASers end up in jail.  At this point in time, we feel that one of our kids is at what we would deem high risk for that kind of trouble. I know many are saying how can you say that about your own kids?  How can you know?  Sometimes things happen despite your best attempts at parenting multiple children with mental health issues.  Trust me, I know a few parents who have gone through the wringer. It was NOT because they didn't try.  Trust me, they tried more than they should have.  Sometimes the child's brain is just too damage that decisions to make will be difficult at best.  Most kids w/ FAS have processing issues too so take that into account.  Raising a child with FAS to become a productive member of society is like planning a battle.  EVery move has to be strategic and executed just right.  Not to mention luck may come into play here.  I've heard of some parents go to the extreme and even thinking their child is possessed.  Umm, no.  They have a mental health issue.  It's a serious one.  Saying they have the devil inside them will not help matters.   The child needs help.  Needs an external brain and that is the parent.  The parent must must think for a child w/ FAS.  We feel we have one shot to get their life right.  We are doing everything in our power to do so.  The one child we feel that may be 'high risk' in our eyes we also see has hope to do the right thing. It is our job to mold him toward that direction.  That's what we're working on for sure. 

Our rules in this house are strict.  No dating till high school.  Though one daughter tried early. LOL.  No cell phones unless you pay for it yourself.  None of mine have a cell phone.  No computers till you're in your mid-teens.  And only if mom & dad think you can handle it.  MP-3 players are fine.  No ipods till mid-teens.  And with those, they pay for them themselves.  Everything is monitored.  There are too many stories w/ FAS teens that I have heard first hand.  It's frightening.  We only have the Wii in our home.  Not 3 different sorts of video games.  TV viewing is limited based on age.  Teens here have free range for the most part at what they can watch.  One though a teen, has not displayed the maturity yet to handle such movies or shows so she can not watch it.  Much depends also on the child.  One of ours wants a pocket knife.  His brothers have them.  However, we know that he will not be able to handle the responsibility of a knife.  So, he does not get one yet.  It's not going to seem fair to the FAS child.  however, their safety is your main concern.  You can't give up on them.  Ever.  This is their future.  Fight the good fight day after day. 

Now, over the years it has been hard.  Scary too sometimes.  Monitoring meds, IEP's, etc.  Much goes into parenting a child with FAS.  And all of it will be behind the scenes.  No one will know just how happy you are when your child tells you the truth for the first time.  no one will understand when they show empathy to someone else on the soccer field.  No one will know the joy when the day went well w/ no destruction.  No one but you.  And for that reason, it can be a very lonely place.  Support groups for FAS are very important.  Sharing with others your struggles helps.  It was just in the last year or so when we decided to be more adventurous and travel with them.  They've done fantastic!  See, before we could never go anywhere for longer than 3 days at a time or they'd fall apart.  Meltdowns are tough.  But we knew once again we had to press on if we ever wanted normal family vacations or for them to experience things in young adult hood.  See, most FAS kids can't self-regulate.  It's tough.  Many say structure, routine, yada, yada yada.  Yes, it's great.  However, in REAL life people, you can't always get structure.  Things happen and they have to learn to deal with that.  From now into adulthood.  It must be learned.  Throw them a curve ball once in awhile.  It can be as simple as stop by a store on the way home and get soda.  If you do something out of routine, make it pleasant the first few times.  On vacations, they want to know every single thing we're doing and where we're going.  I'll tell them some but not all.  They've learn to appreciate the surprises. 

So many other things to say about FAS but I'm sure you're bored.  If you made it this far, I am shocked.  I know it's not interesting stuff to read.  However, it's true.  Not all FAS kids are medicated.  Most will have a normal to above normal IQ.  We have a variety of degrees of FAS in this house.  Yet, I don't want you to think it is all bad.  Having an FAS child is not a death sentence.  You enjoy their accomplishments just like any other child.  You accept the differences.  You help them the best way you know how.  You set them up for success but let them experience failure along the way.  Life lessons are vital for these kids.  So is family.  Most these FAS kids will not have many friends.  What we've found is they don't fit in w/ the general ed crowd and they don't fit in w/ the special ed crowd.  They are in the middle and that is a very tough spot to be.  So, remember that as you are their life line.  For now and forever. 

I know this post is all over the map and doesn't nearly touch on everything.  I also know many won't agree with this and that's okay.  I can only speak from my experiences.  I know folks who've spent thousands on their FAS/ RAD kids or sent them to all sorts of therapies.  We haven't done therapy (only a bit for our first FASers home), haven't done any special diets, haven't done a regimented routine, no special supplements, etc.  Why?  Because there is no magic answer for FAS.  It is a life long disorder that you must learn to deal with and live with.  Don't focus on the FAS, focus on the child.  What do they like to do?  Have something called Proud Moments one day of the week.  When you have kids with severe behavioral dx's, you must find the good in them each and every day.  You must.  There IS good in there.  Tap into their interests.  All of ours have different interests.  There is so much more to the child than the disorder.  Find it.  For their sake and yours.  Trust me, you'll need it for sanity reasons.  The first few years with this disorder I thought I was losing my mind.  No clear direction in how I was suppose to deal with all that comes with FAS.  I was lost.  Now, I've been down this road long enough and know that Im' not letting this disorder rule our lives.  I'm in charge, not the disorder.  I want my kids to enjoy their childhood.  Tomorrow, we leave for the zoo.  Amongst many, many other things we're doing at the campgrounds.  Will I be worried?  To an extent yes.  But, I also know we took a big trip this summer and succeeded and had fun.  We've chosen to look at the good in FAS.  Not all parents can handle kids with FAS.  I do believe we can.  We're honest about it yet have this optimism that it will be okay.  Worried about the future but things will be okay.  Years ago I never thought we'd make it this far.  Would we adopt another child with FAS?  I would not hesitate.  I didn't hesitate before, why would I now.  And no, we're not adopting again at this point in time.  I just would like new adoptive parents with FAS kids to say I need help.  I can do this.  I will survive.  It's a hard life having kids with this disorder.  But it also has some beautiful moments in it.  We do laugh here.  We do go places.  We do have fun.  We have joy.  We have trials and tribulations but there are also many smiles and laughter.  Isn't that what a normal life is like anyhow?

5 comments:

  1. Stephanie, thank you so much for this post. It was very inspiration. I am a guidance counsellor at a school for troubled youth and I see the lying problem day in and day out. It's only the 3rd day of school and I am exhausted by it. Unfortunately the education system can only do so much, and good parental guidance goes a long way. Your children are really lucky to be a part of the Boyd gang! :)
    -CVO

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  2. I loved this post. As an adoptee I had some attachment issues that my parents had to deal with, but they never treated me like I couldn’t do something and always expected the best out of me. Lying, stealing and punching holes in the walls were unacceptable and they never made excuses for my behavior. I think if they had treated me any different I would have been in trouble and not become the adult that I've become today. Thanks for sharing, this post was very inspiring.

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  3. I needed this post today. Only a day a parent with a FAS child can have. I recently read a quote by Jeff Noble from Canada regarding parenting a child with FAS "Raising a child is like doing a sprint. Raising a child with special needs is like running a marathon. Raising a child with FASD is like running with the bulls!!" So true.
    Pat

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  4. Been reading your blog for a few months now and have to say I am so impressed with all you have taken on. I figured there was probably a lot going on behind the scenes and appreciate your honesty. You both are truly great parents and deserve nothing but praise.

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  5. Bless you Stephanie for this touching AND nerve touching post. I can so relate and I am so grateful for your knowledge, vision nd your comment to look past the FAS/RAD / OR Whatever diagnosis, to see the child. It IS challenging...it is a Blessing. But the days are often long and I feel alone and lonely.

    Too many are quick to give advice...they need structure...they need routine...I would do that differently...Monday morning quarterbacks. NONE of them have adopted a child with FAS or RAD or High functioning Autism, or ADD. But there they all with their advice and here I am ALWAYS under fire for my parenting skills. My kids behave in public, they do control themselves "out there" it's often when we close that front door that the stuff hits the fan! We are dealing with their lifelong disorders and of course so are they... but yes you are right do not make excuses.

    I just discovered your blog and I do so hope you elaborate on your "Proud Moments" each week. How you do it...do you do celebrate that proud moment as a group...or privately praise the individual child who had the moment. Do you find a moment for every child each week (even if they are in prison camp time? Please if you can do a blog post about that! Thank you!!!!!
    Blessings!

    T.L.

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