Wednesday, March 29, 2017

IEP Meeting, Behavior, Vision

When I last left off, I talked about Ellie's regression and the need to move her into a different classroom setting.  I know that it needs to be down.  That it is best for Ellie at this time, but I am just not happy about it if that makes sense.

Last week we had Ellie's IEP meeting, which was completely anticlimactic seeing as I met with Ellie's Functional Academic Class [FAC] teacher twice and her new Functional Communication Class [FCC] teacher.  It was more of a formality - sign the paperwork.  I am really glad that I met with the FCC teacher in advance.  I felt so much better afterwards.  We discussed goals and she showed me in detail how she will teach Ellie and help her to accomplish her goals.  I think that this move will be good for her.

I was, however, not happy the decrease in inclusion time.  In FAC, she would spend 30 minutes with the 1st grade and then specials (art, music, and PE).  In FCC, she loses most of that. She does get reverse inclusions where they bring a typical kid in from the 1st grade to be with her for about 30 minutes. I don't really think that counts, in my opinion. The reason they are taking away inclusion time is because "with her behaviors, she requires too much redirection and is not getting much out of it".  My concern is, how can she learn appropriate social behaviors if she cannot be around and model herself after typical kids?  We did negotiate and decided that she can float into FAC for announcements, lunch, and recess.  With recess, she will remain with the 1st and 2nd grade class, which is good because there are 4 girls that love to play with Ellie.

Rather than wait until the next school to move Ellie to her new classroom, we decided to transfer immediately to the FCC room.  So on Monday she started FCC and I am told that she is doing well.  Minimal behavioral issues.  I think that I just jinxed her!

Two weeks ago we started weekly Applied Behavior Analysis [ABA] therapy in hopes of building up Ellie's social skills and working on her problem behaviors.  She has some 1:1 time with the behavioral therapist and some time to be with other kids.  I have been informed that she does really well at following directions.  Humph!  I wish she did that at home!

At the recommendation of the ABA therapist, we took Ellie for an autism evaluation yesterday at neurology.  We learned that Ellie has bad ADHD.  No kidding!  The doctor said that while she has some autistic-like behaviors, which is common in kids with Down syndrome and developmental delays, she does not have autism.

I recently ordered the book Supporting Positive Behaviors in Children and Teens with Down Syndrome.  I am hoping that maybe I can learns some tips to deal with Ellie's behavior and maybe gain some understanding.  I shall report back after I read the book.

We went for our annual ophthalmology appointment on Monday and learned that Ellie has great difficulty seeing out of her right eye.  It crosses a lot.  So we have the great pleasure of trying to convince Ellie to wear glasses.  I am wondering how much her poor vision has affected her school work?  Is she acting out more, trying to escape work, because she cannot see the learning materials?

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Tuesday, March 21, 2017

World Down Syndrome Day 2017: what to say

I struggle with this post, mainly because I have no idea what to write.  I feel like I have said everything in previous years' posts.  When Ellie was younger, Down syndrome was all I could think about.  All I could worry about.  Today, it isn't in the forefront of my mind.  It is just an after thought of "oh yeah, she has an extra chromosome.  She has Down syndrome".  Ds is sort of in the back of my mind when I think about her developmental delay (mainly lack of speech) and her future as an adult who will want to be as independent as possible, but that is it.  Her non-Ds related health issues and her naughty behaviors are what take up most of my worries.  Down syndrome isn't as scary as I thought it was years ago.  It isn't the end of the world.  It isn't all consuming.  It just is. Ellie is doing everything that a typical kid would do, but at a younger developmental age.  She is progressing (well aside from potty training and social behavior). She is just like any other other kid.  So to all your new parents, do not be afraid.  Your child is a unique being who will bring great job to your lives.  The Down syndrome is just a small, non-scary part of them.  Ds does not define who your child is.

Previous WDSD posts:

World Down Syndrome Day: a celebration 2015

World Down Syndrome Day: Ellie Video 2014

World Down Syndrome Day: an equal opportunity gene 2013

World Down Syndrome Day 3:21 2012

3.21 World Down Syndrome Day 2011

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A mask for kids with Down syndrome

Do you hear crickets?  Yes, we are here!  We are alive!  We are safe and healthy!  We haven't been inside a restaurant or store since m...