Monday, December 9, 2013

Summer's IEP results

The other week (Thanksgiving week actually) we had a meeting for Summer's IEP that was being developed. See, I knew Summer would need services.  Done this enough to know what the kids need.  So, requested testing be done.  Sent the letter like the first week of school.  I know testing takes weeks and just wanted to get started.  Meantime, Summer started a mainstream kindergarten.  Kids at that age despite disabilities, tend to easily fit in and she did.  Fine for a temporary solution.

Meeting was held.  I went.  She qualifies for OT and speech.  Knew she would though I was leaning more towards no OT, it will help fine tune some items.  Summer has speech apraxia.  If it gets to be more than 4 words in a sentence, she can't do it.  Her brain jumbles it all up.  Speech was needed.  Now, I think Summer would do better in a self-contained room.  She's all over the place in a normal setting.  I watched her at the Halloween party and truly was NOT happy.  She wasn't getting in trouble for anything she was doing & I would deem her behavior as obnoxious that day.  Maybe it was b/c they knew I was there to take care of her, don't know.  Hard to say.  Just would have liked to have seen her behave like she was supposed to.  They see her as silly and cute.  That's fine and dandy but in my experience, that's not going to help you when you're in the older grades.

Anyhow, Summer has many things going on with her brain.  I know she "looks fine" but really, there is a lot going inside her head.  She has c-ACC.  Complete agenesis of the corpus callosum.  She has extremely low white matter in her brain.  She has colpocephaly.  Told she has microcephaly but I just don't see that.  Guess it's b/c I'm so used to seeing Irina and Alyona w/ microcephaly that I don't see Summer. Guess it all has to do with measurements though as endo and neuro say Summer has microcephaly as well.  So, there are multiple issues truly affecting her thought processes making learning beyond difficult for our little girl.  Really difficult.  Out of all 11 of our children, Summer has the most significant delays.  One of her dx's alone is said to cause being severe to profoundly mentally challenged.  In other words, it is going to be a very, very long road for our little Summer.  I do think the IEP team thought we'd be a little shocked by her scores for IQ but I knew going in it was going to be hard to see.  It's okay.  Really it is.  I wouldn't change Summer for the world.  It did not help matters that Summer was in Pleven the first three years of her life.  In c-ACC kids, this is a critical time b/c some therapy could have significantly made a difference in her life.  However, that was not meant to be.  We work with what we've got. 

Summer has done, many, many things that we were told she probably wouldn't be able to.  And though we still don't have colors or numbers down, we're getting there.  She now recognizes two letters.  It is undetermined if she'll ever be able to write.  Or read.  But, we will most definitely help Summer reach her fullest potential, whatever that may be.  She brightens a room with her smile and those who've met her, truly wouldn't know the extent of her disabilities.  I do know that as time goes on, it will become much more noticeable.  And that is okay too.  Summer can do, so, so very much already.  I think she will amaze her teachers over the years.  Meeting went okay in general.  I just don't think they realize exactly why I thought she needed self-contained setting.  But, she is getting services and that is a start.  I really am proud of her.  My goal is for her to one day put on shoes the right way.  Everything goes on backwards b/c that is how Summer sees everything. 

By the end of the year, I will attend Summer's kindergarten graduation.  It will be an accomplishment I look forward to.  If she can write her name by then and know her alphabet, I will be elated. I know kids now are reading but Summer being able to write her name would be delightful to me.  Look out world, Summer is going to change the game and possibly the world.  You just never know and one thing is for sure...we never ever give up.

1 comment:

  1. Thank you for having expectations of behavior. When I was a teacher, I had really high standards for behavior too for each and every student. Even the ones that they said would never be able to achieve them. Baloney. Every single one of my kids were able to meet them when they chose to and they were important skills that they needed for as they grew older.

    And regarding Summer's shoes - sounds like she's right on track to me. My kindergartener just stopped switching them in the last month or so. Now we just have to work on "remembering" that he needs to put socks on first.

    Have a very Merry Christmas season!