Sunday, January 23, 2011

What do you do....

when you find out your child is much more mentally challenged than you thought?  And, maybe going blind or severely visually impaired?  Okay, really going to be honest in this post so hope you don't take things the wrong way.  I think people who go into adoption need to know that down the road may be a different direction than you originally planned.

So, yesterday we had Alyona's IEP meeting.  Little background first.  Alyona's last IQ test was 54.  Now, I usually do not share this info and NONE of my kids know their IQ's let alone their sibling's IQ's.  However, I know for a fact her IQ is much lower than what is on that piece of paper.  That will become clear next year when they do retest her.  I guess since I am being honest, I should discuss some dx's.  Almost all that visit this blog know we have many children affected by FAS or FAE.  Alyona is definitely one of them.  She is FAS.  Also, failure to thrive, microcephaly, devel. delays, MMR, optic nerve hypoplasia, sensory integration disorder, radial articulation, and most likely a few other dx's I forgot about.  Oh, possible form of dwarfism but haven't confirmed that one yet.  Many times, I don't have every single dx, dx'd.  I know she has ADHD.  It's quite clear to me and her teacher.  We see it.  We have two other children with it & we know she has it.  However, we haven't taken her to see anyone for it as we know it will not change a thing to have another diagnosis for her.  In fact, I don't even think the school has every dx on her.  Reason I do this for my kids is b/c I want the schools to first see their potentials, NOT their dx's.  Sometimes though, that backfires when you are trying to get services for your kids.  For years, we never told the school about Irina or Max's FAS.  Partly, b/c they have no earthly idea what it is and partly b/c I wanted them to see my kids for who they are.  Not the things scribbled on paper. I sometimes think people see a dx and automatically forego any abilities the child may have to offer.  So, we just say a limited amount.  Again, just what we do, not everyone else.  Everyone has the right to educate their child the way they see fit. 

Back to topic.  Alyona had the IEP meeting Friday.  I really like her teacher.  We're on the same page, feel the same way, etc.  And,the vp KNOWS special education as it used to be his field for a long time.  We all understand Alyona is delayed.  However, we've always tried to push her.  To an extent.  Alyona will be 12yo in June.  She can not read.  And, unless a miracle upon miracles occurs between now and then, she will not be able to read by then either.  This greatly, greatly limits what she can do in life.  Really limits her.  In addition, she can not comprehend anything.  This puts her in a difficult position for school as well.  Yes, she is in self-contained so that helps.  Alyona is a few grades behind so she's in 4th grade.  What probably disturbed me more than hearing she couldn't really read (kind of already knew that since we work w/ her at home), is that she can't really see either.  Now, we know she has ONH(optic nerve hypoplasia).  She is regularly seen by an opthalmologist though she is overdue for another appointment.  Making it tomorrow.  We think her vision may be deteriorating.  This is not good.  She also has strabismus.  Well, her one eye is essentially blind.  It is not used at all.  Not a bit. So, she has one "good" eye even though that is not a very good eye.  The opthalmologist explained it to us in a different way.  If it were to be analogy, the doc said it would be like us looking through grains of sand.  That's how she sees w/ her one "good" eye.  Over the years, she has compensated very well.  Teacher now gives her the sheets at her desk.  She can't see the board.  Alyona sits in the very, very front.  Teacher is going to try to give her much larger print & see how it goes.  We'll also get recommendations obviously from the opthalmologist.  IF she were considered legally blind, she would qualify for many more options at school.  Last time Alyona was tested for vision last year, she did not qualify for that status.  I think it is 20/70 WITH corrected vision.  Her corrected vision is a little better than that w/ the one eye.  Remember, she's blind in the other eye but for dx on paper, you must count both eyes to be considered to be legally blind.  I think.  I'm still learning this too.  My kids have had vision issues in the past but pretty mild.  We have a feeling this may become a big issue for Alyona and her schooling.  What happens if she can't see what she's doing, her cognitive abilities are severely delayed, & the school can't provide resources b/c the dx is not on that piece of paper?  They'll provide services, just told she'd have more options if she had the official dx.  Time will tell & I'm sure her opthalmologist will let us know.  Just hard not knowing right now if it's deteriorating or not.  But going from being able to see the board to not, concerns me for sure. 

So, that's where we stand.  She has made progress.  Alyona can name all her letters and can sound them out.  Her math is a mess but I expect that as math is very hard for FAS children.  All my other children struggle greatly w/ abstract concepts in math for sure.  Anyhow, I just want to know how to help Alyona reach her fullest potential.  It's something Warren and I are talking more and more about lately as we try to figure out what to do w/ our eldest daughter and her schooling.  These are very, very tough decisions that will effect their future.  Want to make sure I think it out very thoroughly for sure.  But first I must make sure medically, nothing is impeding their learning.  I will keep you all posted.  Just thought I'd share. 

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