Monday, December 20, 2010

Feelings of an FAS adult to be


Right now Irina is at a point where many FAS older teens go through.  Or at least what I hear from other parents.  They really don't have friends at this age.  Remember, Irina doesn't really fit into the special needs category.  So, any function that caters towards special needs she really doesn't fit into at all.  Downs children have events they go to here and they all fit in.  Autism has groups that meet as well.  FAS is just not as well heard of.  Yes, we have a small little support group but nothing we could "put on" to make the kids all feel like they belong.  So, anyhow, Irina does not fit in w/ the special ed crowd and does not fit in with the "normal" crowd either.  She doesn't have any friends at school.  She does a youth group which she likes but she told me she thinks they only talk to her b/c they feel like they have to.  I am hoping that's just her perception b/c she does enjoy going.  Other than that though, the same thing is happening w/ the only friend she has left.  They've been friends for years but she is starting to "outgrow" Irina.  This happens with all her friends.  Once they reach a certain maturity level, they kind of let her go.  We totally understand that, but Irina does not.  She doesn't want a birthday party b/c honestly, she doesn't have any close friends.  It is really hard living in between in an FAS world.  I'm going w/ her to apply for jobs this weekend but doubtful she'll get one.  Jobs are tight here for sure.  Trying to find things for her to do. She is our oldest with FAS.  We are learning new things as parents as she ages.  Trying to do what is best for Irina.  Many FAS/ FAE children really struggle fitting into society as adults.  There was a recent discussion on one of the FAS boards lately about adult FAE children holding down jobs and such.  It is very hard to watch at times and hard to comfort her.  She told me the other day "mom, I wish I didn't have a disability."  As a parent, it's hard to hear.  And yes, we try to do what they all say.... point out the positives, explain the why, etc., etc.  Blah, blah, blah.  That does not make a difference to IRina my friends.  She is the one living with FAS and the one that is going to try to make it in life.  Hoping we can think of something soon.  For now, trying to keep her busy.  May take her with me today to do some Christmas shopping.  They don't call FAS the invisible disability for nothing.  Part of the reason for this blog is for people to get  a real taste of what it is like living with FAS on a daily basis.  The struggles, the accomplishments, etc.  This is a bump that we have to deal with and get through together with Irina.  Her birthday is coming up soon.  She really needs birthday wishes from people.  I'm going to try to get some friends and family to remember her birthday and call her and such.  Make her feel as loved as I love her.  Irina doesn't want a birthday.  She knows she doesn't really have many friends and it is just hard for her. She also can see the differences more clearly now.  She's terrified to be an adult even though we told her many,many live at home for a very long time nowadays.  Whether you have a disability or not.  I know Irina knows what others are doing at 18 and that some of that she may not be able to do.  Like, go to college, drive a car, etc.  It's a lot for a little girl to swallow.  And yes, I say little girl as she is still mentally around 12 years old. What 18 yo's do you know that color their parents pictures out of a coloring book?  Very, very few.  She's proud of her work & we're proud of her and hang it up.  However, some times it is also hard to watch b/c I know her choices in life are indeed going to be limited by FAS.  That' s a fact that you can't change.

As parents we have to make many, many decisions in life for our children.   We decided to parent our FAS kids quite a bit different than what I hear most others do.  Just gathering by the boards I'm on and the support group I attend.  We do not go to therapists.  We do not do a special diet.  We do not do behavior modifications.  We treat them as regular kids.  Yes, we know they have a disability.  And yes, some times we do things a little differently such as choose a not so crowded time to go to a restaurant.  But, for the most part, they are punished for the things they do as regular kids would be.  My RADishes that punch holes in the wall are made to repair them.  They are not off the hook b/c they flew into a rage.  Sorry, not here.  I will say this last month all of us have slacked on chores including me.  I can't remember when I last made my bed.  Grand scheme of things, not that important.  But, told the kids over Christmas break them & I are getting back on track w/ chores.  In our house we say what we mean & follow through.  I think that is key in any family & parenting...follow through.  If it comes out your mouth, you best be willing to follow through.  Shoot, one of my daughter's missed a field trip.  Point is, I try not to treat my FAS kids differently b/c I know as adults society will not cut them a break.  Society won't understand b/c they "look normal."  Ooh, I get that all the time. Drives me nuts b/c it's NOT normal to have permanent brain damage.  It's not.   So, I'm trying to find a balance. How much do we share with others at this point?  When she is applying for a job do we share that she is mentally challenged?  I think we'd almost have to as she can't perform any tasks related to money.  She would not be able to work a cash register.  Yet, I don't want them to treat her differently either.  That's what others at her high school do.  Since inclusion(HATE IT!!!-- but it is different in every state), Irina has gained a lot of weight (about 40 lbs since September) and very low self-esteem.  They single them out.  She told me they announce all the OCS students come with me and that all the other kids then know she's retarded(Irina's words,not mine).  I hate that she feels this way.  It has come to light for her that she does have a disability and she is trying hard to deal with it as am I.  I don't want her to feel pity for who she is.  Not at all.  We clearly explain it is not her fault. FAS is though something she'll have to learn to live with.  We are trying to give her the tools to do that as best we can. 

So, when it is her birthday next Monday, those local maybe wish her a Happy Birthday.  I know it would mean a lot to her to know she's thought about.  Coming from Mom & Dad just does not quite mean as much.  You all know how that goes.  Hoping we can figure this all out together with her.  FAS as an adult and what it means.  We're both nervous about it, I can tell.  She's 18 almost and yet doesn't want to turn 18.  Irina told me she'll have to make more decisions when she's 18 and she's not ready for that.  I told her it's not like you're leaving home. Nothing is changing but your age.  That's it.  Any other suggestions to put an FAS child's mind at ease about becomign an adult, do share.   I know this was an all over the place post.  Didn't mean for it to be but thought it's important to share.  See, many read who are new to adoption or new to FAS.  We've been at this for awhile & still exploring new territory with our FAS children.  It's a learning experience at every milestone & age they reach.  Also, most blogs speak of the young kids when adopted.  I want people to see that it is ongoing...parenting that is.  Especially, if your child has a disability such as FAS.  It will be lifelong.  So, bare with me as I share bits of pieces as my oldest enters adulthood as a person with FAS and what all that means.  Maybe we can all learn something together & Irina can be our teacher.  Time will tell

2 comments:

  1. Shoot me an email...sonanddot7@yahoo.com
    Tammy

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  2. You really generalize a lot! My sister has four adopted children (bio siblings) all of whom have FAS. When they were adopted the kids were 7, 8, 11, 12. The older two has lived in a car with their mom for the first 6 years of their life, the younger two were removed at birth They were bounced from relative to foster home to relative and back again. All four received extensive special education services. They ALL have friends, and they always have. The now range in age from 19-24, and they still have friends. They have very busy social lives and are very active young adults. Their functioning levels vary greatly among them. One should probably never live independently and can't hold a job, while one of his older sisters has three different jobs. One can't stay out of jail, and is scary violent, but he still has friends. The effects vary SO greatly, depending upon WHEN during the pregnancy exposure happened, and what part of the brain was forming at that time, along with the level of exposure. To say "Kids with FAS don't do X" or "Can't do X" is just impossible, because there is NO WAY to predict the outcome for each child. The ONLY thing that can be said in general about kids who have FAS is that there is no way to predict ANYTHING about them.

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