Wednesday, January 27, 2010

What do you do....

when your child finally realizes she is "different?"  Really, what do you do?  Our oldest is now 17 years old.  Irina has FAS and she knows this.  However, for the most part, all these years we've kept her with regular peers except for her self-contained setting in the classroom.  Otherwise, all other events are w/ regular peers.  In retrospect, I'm thinking this was a bad, bad idea.  Maybe it was the hopes as parents that we were banking on.  Not the reality of our daughter's capabilities.  We've always pushed our kids to reach their fullest potential.  We were told years ago by educators that Irina would never pass a second grade level.  We fought for her.  She is roughly on a 6th grade level I would say.  Way further than their grim predictions for her.  Irina is highly compassionate and has incredible face recognition skills.  Phenominal with people, and athletic.  However, her mind does not work like yours or mine. 

I'm sitting here not really knowing what to say.  Irina is unhappy right now.  She has known for awhile she has FAS and some other issues.  However, it isn't until recently that she has started to realize she is different than her peers.  Very different.  Remember, socially, FASers are about half their age.  Irina is having a very tough go in high school right now.  Warren and I are discussing pulling her out permanently.  She is not on a regular diploma track anyhow.  She hates school and they are teaching her nothing.  Really a tragedy how they treat special needs students here.  The schools think once they reach high school, just train them for a job.  URGHH.  Irina does have a brain.  Yes, she has brain damage but that does not mean she can't learn!  Irina is inquisitive.  Right now, besides the adoption, house rennovation, basketball, & a few other things, we have decided we will most likely pull her within the next month forever from high school.  She has begged us to homeschool her again.  And though I want her to experience high school with nomral peers, it is quite evident she does not fit in and is not being treated fairly.  I will homeschool her again and look for a type of apprenticeship she can do.  She is great with children and animals.  Who knows. 

As an adoptive parent, you never know your child's potential.  Some have given our children very grim prognosis.  We push and push though until we see they've reached their fullest potential.  It is very realistic to say Irina will never go to college.  I know this is a horrible comparison but if any of you've seen the movie Forest Gump, you'll know what I mean.  Forest had a much higher IQ than our daughter.  It's reality, we have to accept it.  Irina is slowly learning to accept this and it breaks my heart at times.  She asked me the other day if she has children, will they end up stupid like her.  Just the fact that she thinks she is stupid is heartwreching.  She also asked if her kids would have FAS.  Irina said if they do, she doesn't want that for them.  For someone with limited mental capacity, she has SO much intelligence for some things.  Amazes me. 

What kills me is Irina is the most motivated out of all our children to learn.  She tries SO hard and never really sees results for her efforts.  I asked her yesterday on our walk if she wanted to be around others like her.  She said yes.  I said do you want to be around people who think like you?  She said yes.  It is hard for me to say it but it was a big parenting mistake I made with my first child here.  I should have exposed her to more kids with similar minds.  I guess we learn as we go.  Trouble is, you see autistic groups, Downs' Syndrome groups, etc, but no FAS groups here.  None.  What is not helping is Irina 's best friend moved to TX.  We live in NC.  The two girls were close & helped each other out.  I'm hoping she can find someone as nice.  I know there are other kids out there.  This has been hard for Warren and I this week.  We have never hidden anything from our kids.  They all know they're adopted.  They all know they have issues.  We tell them when they are older just what issues they have and how it makes them special and different.  But, we never focus on that in the house.  As they get older though, I realize it should be more of a focus as it is part of their daily life and who they are.  Irina and I have been talking more and more about FAS.  She has accepted it reluctantly.  And that is okay.  Just as a parent of chidlren with disaiblities, I'm learning from my first child steps that maybe I could have taken early on to help them more.  Exposure.  I guess I always just saw my kids as "normal" and not thought of the brain damage from the alcohol at birth.  FAS is essentially brain damage to the frontal lobe.  It's more than that but my FAS post is for another day.  Right now, I want other parents of special needs children to embrace the diagnosis of the child and expose them to it more.  Yes, my kids have been to some special needs events but apparently not enough if my daughter feels like she is the only one out there.  She now has a pen pal with FAS as well.  It has been awesome for her!  She now knows she is not alone.  Irina is turning into a young adult but this process will take years for her.  We will be with her every step of the way.  I've never thought of Irina as mentally challenged.  To us, she's just Irina.  No label.  Though the label does NOT define her I have to accept it is a part of who she is.  We can't change that or how society thinks of mentally challenged people.  As parents though, we can give her the tools she needs to live a productive life in this society.  We have to start by letting her see there are other people like her and it is perfectly okay.  Hope that all made sense. 

My point for writing this was not to be down.  To let others know it is okay to fail.  Do I feel like I failed her?  A bit.  I feel I should have exposed her to more people like her.  Warren and I tried that one year.  A special needs cheerleading squad for Irina.  This was years ago.  Warren and I felt she didn't fit it.  Felt the older kids were much more mentally challenged.  I look at it now and see she fits in perfectly with that squad.  As an adoptive parent of special needs children, you face situations you've never faced before.  This is one of those.  We are still learning as parents and probably always will be.  I know today, we are looking at different things for Irina to do.  New people to meet.   Though we've never seen her mental challenges as a disability, we need to start working with the disability instead of assuming it's not there.  I think by doing this, she will succeed more in life.  Irina has always had so much drive.  A kind soul.  She makes us proud left and right.  She has helped us realize over the years, different is okay.  Our focus for her has shifted a bit.  I too know she is ready to make some changes in her life and meet some new people.  Irina has always, always been our social butterfly.  She can't do that in the environment she's in as peers don't look to her as a regular person.  She has not been able to make any friends in high school.  Having the social ability of about half your age is tough to make new firends.  She wants to have fun in high school and I want her too as well.  So, we have now been looking into other activities for her and like-minded peers.  There are groups in Raleigh we're going to let her hang out with and see if she likes it.  Many times, FAS children are caught in the middle as they don't belong with regular peers but don't quite belong with the more special needs category.  It's a fine line.  We will let Irina direct us where she wants to go.  She has expressed over the last two weeks to be with other people like her.  We can do that. 

Our daughter has realized she is different.  We have finally realized it too.  Though it is hard for all to accept, once you do, you feel more free and feel like there is a whole other world out there.  We are going to explore that world more as a family with Irina.  Alyona is in that same world.  So are some of the other chidlren.  Irina is taking the lead, we are following.  I can't wait to see what the new world has to offer her.  Irina is such a special person and deserves good people in her life.  Thanks for listening.  I just had to talk about it as it has been a wake up of sorts this week.  It has been good too though. 

This is Irina helping Alyona make sugar cookies.  Fudge is in the background.  Irina loves to bake and is awesome at it!  Trust me, I was shocked.  But in a good way.  She learned her fractions last year at homeschool by cooking.   So many things that she CAN do and I guess that is why maybe I lost sight a bit of her "invisible disability."  I know now that special needs children need exposure to both regular peers(to know that they are alike in some ways) and disabled peers (to know they are not alone).  I think with the right balance, special needs children can really excel in adulthood.  Again, just my opinion based on my experiences with my kids.  This may not be the case in your household.  I always said I would be honest on this blog no matter what.  And if you're wondering, no my kids do not see it, do not know it exists so therefore, can not hear or see what is on here and neither can their freiends.  Most followers on here are other adoptive families or families learning about adoption.  AFter a decade of experience, I'm sharing what've I've learned and what I should have leanred.  Maybe someone can apply what I did to help their children .  Don't know.  Just thought I'd share.  Have a wonderful week. 


  1. Stephanie - I truly believe that your family is so special. You are one of the most amazing mothers I have ever had the pleasure of knowing and the misfortune of not meeting yet. I learn something new every day from your blog. I have to visit it at least once a day. You have so much insite and experience with SN children. Please do not beat yourself up. You have done a great job with your kids - I can tell. They are beautiful and special and unique. Thank you for sharing your life with us.

  2. Hi Stephanie!... You´re awesome!!!... As in other post you made; you touched my soul and I have my eyes full of tears!... You´re the most consirated mom I ever heard!... You have menage to find your angels all around the globe and really take care of them!... I would like to have your courage!... I have to confess you something: Yesterday I was down!... My wife asks me what had happened to me and I really had no idea!... Later I realize it could have been a hiccup in the process!... We have spoken with the lawer a cupple of weeks ago but we´re in middle of the summer here!... everybody it´s out on holidays, so it gonna take time!...
    Remember you are our leader and adviser!... I´ve told you before that I ask God to have a wonderful family as yours!... I hope that we´ll be wonderful parents as you are!...
    Huge hug at the distance (I have also had the misfortune of not meeting you yet... God knows if we ever would!...) Thanks for your posts!... they really make my day!!! - I check your blog every time I turn on the PC, to see if there is something new!-
    Kind regards!.

  3. Ah yes, the guniea pig...I mean first child. We do our best, often realizing that it could have gone better. We just have to remember to pray each step of the way, trusting God that we are doing our best at that time with the information we have. Remember, there's only one person who knows the future, and it isn't us!

    Irina sounds like a wonderful daughter! I have no doubt she blesses you every day. Two of our children have Down Syndrome and I was "certain" I was going to homeschool them like I was their older brother with ADHD, ODD, pos. mild autism. In any case, after being home a year, we've decided Anah's best interests are met better at a private school for children with special needs. It's a one of a kind place and just being there to visit blesses your socks off!

    All this to say, give yourselves some grace, you're doing a bang up job! We take many different paths on this road we call parenting. Thankfully we have God as our GPS system ;o)