Monday, September 6, 2010

Irina is struggling

With all that is going on, I needed to ask those out there who've had something similar happen, how they handled it.  Talking no longer works.  Reassurance, distractions, are not helping a bit.  A quick recap.  Irina will be 18 years old in December.  She is dx'd w/ FAS/ microcephaly, OCD, MMR, anxiety, and the list goes on.  Typically, I don't discuss all their issues & have left a few of hers out.  However, since I'm asking for help, thought the more info, the better.  Irina is simply put struggling with who she is.  Though she is almost 18, think more of a 12yo.  Usually, the best way to gage behavior for a child w/ FAS is to think of the FAS child as half of their chronological age. This is so true.  Irina is struggling greatly with high school and the high school is not helping matters.  Yes, we are planning on pulling her out to homeschool her.  No, I can not do it this instant.  So, I have to find a solution now for the issues at hand.  Anyhow, she is in the occupational track for high school.   This is where they train expose them to different careers.  BTW, so far I am NOT impressed by what I've heard b/c she can learn to wash tables at home.  But, not getting into this right now.  Irina has six other students she has no other choice but to ride w/ as they're in her OCS track too.  The same girl is the one that gave her so much trouble last year.  URGHH.  Told the school to separate her.  I am keeping records of things.  I have contacted the job coach & she is redoing seating tomorrow.  Irina is being called all kinds of names.  Degrading name for someone of color & Irina nor us can really understand why they are doing this when she is not even a different race.  Makes no sense.  She said "mom, I'm the only white person on the bus."  They all gang up on her as she's a different race & really the only one that I gather that actually cares about school.  Irina is actually concerned for her job coach getting tickets.  NONE of the others buckle up.  I said doesn't she make them.  Irina said yes mom but they take their seatbelts off as soon as she starts driving.  Getting called names & yet she's concerned about them.  I wish others could have her heart.  They might learn something! 

I have another son at home complaining he's Asian.  URGHH!!!  Another HUGE problem is many people at school calling her retarded.  BTW, these are other kids in the SAME situation.  Again, makes no sense as their academics is not the best either.  Her behavior has changed at home b/c of this.  So has Max's.  Remember, Max is Asian so he gets teased too sometimes.  And he's such an introvert, it doesn't help.  He won't have any snazzy comebacks.  now, if this were Bojan, he'd be right there w/ a joke comeback or something.  But Max is more angry nowadays at everything.  Frustrating.  And, I know it's the school mess.  The sooner I pull these kids from school, the better. 

So, suggestions on how to handle things from here.  I am hoping that after this Friday, I will have a clearer idea of time frames for many things.  There are a few things brewing in the works that I have not made public quite yet & probably won't for awhile.  Not bad things(actually, good things), just changes in general.  It's not really the adoptions that are the reason I don't want to pull the kids yet.  There are quite a few reasons that I can't go into right now.  Meantime, I'm trying to keep them afloat so to speak at school.  We are trying to do a few more family activities to help w/ things.  Get their minds off things a bit.  It does help b/c when they are here doing something w/ us, much happier.  shoot, today we just went to Walmart & Big Lots.  Had the "littles" w/ us as well today.  Max & Irina do very well w/ other kids & their younger siblings.  Keeps them occupied I think.  I want to help Irina find a job but around here, there is not much out there especially, for new teens w/ disabilities.  Plus, can't do a thing till we get her passport back & then straighten out her social security card. 

Irina is struggling w/ being different.  She knows she is but has a hard time understanding it all.  Many of you reading this on in process of adopting special needs children who struggle w/ delays.  It is a lifelong issue.  It comes up at various stages in their life.  Much easier to deal w/ when they are younger for sure.  No one can understand why your almost 18 yo isn't driving yet or doesn't have a job yet.  No one can understand why she may not behave quite like a woman that age would.  No one can see the internal struggles she deals with daily.  Irina does know she has brain damage from FAS.  She knows this and works through it w/ me.  Right now, she wants a guinea pig.  Don't want to but she does have money to spend.  And, I do think it would give her something to take care of and keep her mind busy with.  She has a plant & does fine.  But a moving, delicate creature may help too.  who knows.  We're carefully considering it. 

It's very hard to deal w/ an issue that comes up w/ a child w/ FAS.  They tend to not be very rational about things so you have to tip toe around things to get your point across.  Seriously.  Irina asked us today if she looked retarded.(Irina's word choice, NOT mine!)  She said "you know, you can look at Alyona and tell there is something wrong w/ her.  Is it the same for me?"  Now, until this point, I honest to goodness never saw any of my kids as slow.  I was shocked she said that about her sister as I've never looked at Alyona any other way than just my girlie girl.   Nothing more, nothing less.  Just a little girl.   Same way I look at Irina...just a big girl who is growing up.   They both have good & bad as does every other human being.  I see them as my kids.  I want Irina to see herself as a young woman with the world in front of her.  Instead, she is seeing society notice her differently.  If any of you know her personally and just want to write a quick note to her that would be wonderful.  She loves getting mail SO much.  She checks everyday even though she rarely gets anything.  she used to have another FAS penpal but that kind of fizzled out.  I know it is hard being a teen in general.  But a teen w/ a disability must be the pits. 

I'm contacting the school AGAIN tomorrow.  I contacted them last week as well as the job coach.  But, the racial slur stuff & everything else, we just found out about this past weekend from her.  Let you all know what they say.  Next post should be a little more upbeat.  We did have a very productive & relaxing weekend.  Will share later w/ pictures.  For now, more papers for me to sign.  Just felt I should share.  I wanted this blog to be honest and about some of the major issues we face w/ children w/ various disabilities & abilities.  It is real life.  This is not a scripted movie for sure.  Some days are tougher than others.  Today was one of those days.  Listening to your daughter struggle w/ who she is is very though.  Especially, when you don't see her any differently than anyone else.  Suggestions welcomed. 

1 comment:

  1. As an attorney, I represent a child who was bullied and even had his nose broken by other IEP kids. This must be a common problem. Write a letter indicating that the bullying is denying your child educational benefits and access in violation of the Disabilities Improvement of Education Act 2004 (IDEA). Indicate that if things do not improve you intend to contact legal counsel. You will probably get some pretty significant action in response. The boy here got an aide assigned who followed him in the areas where he was being bullied that were previously unsupervised (hallways, lunchroom, etc.). Get her moved to the front of the bus where the driver will hear the bullying comments. That might stop things temporarily. You might need to contact legal counsel, although schools are getting a bit more responsive on bullying after so many suits and news articles about it. You may also want to contact local news media if the school does nothing. Don't threaten to do so as that might be considered to be blackmail. Just DO it if the school won't help. Also go to the District's Board of Education with your complaints, again reminding them of their obligations under the IDEA. Good luck! Sherry