Friday, November 07, 2014

Life Around Here

Remember All County Orchestra that Liz tried out for as a 6th Grader?  The only one in her school as a sixth grader?  She made third chair in the 7th Grade Orchestra for the whole county!  So excited for her!  And we finally found her a viola teacher so she can continue to progress. 

After all of those Trunk or Treat gatherings, when Halloween finally came, only these four went.  Gosh, it was cold outside!! Bella was snug in bed sound asleep while her siblings collected candy.  Brother had been very asthma –y, so he stayed home with me too.  The girls who went had fun and liked the candy!


Poor Sammi has been complaining again about blurry vision, so to the optometrist we went.  Yep, her prescription has changed again!  She found new frames (huge – she doesn’t like to change her frames ever!) Sight is such a blessing!  I’m always amazed when the doctors show me the backs of the kid’s eyes – their healthy optic nerves and maculas.  Sigh. 

Sammi’s new glasses – a bit of a story about picking those up!  (shared this on Facebook)

Oh you wicked time change!
I have to be at home to meet the bus for Joy and Bella. They have a window of time in which they normally drop off the girls - anywhere from 4:40 to 5:05.
Sammi and I went out to pick up her new glasses when she got home at 3. Afterwards we looked at the clock and it was 4:45! I needed to be home NOW!
We got home very quickly - me praying I would beat the bus the whole way, Sam praying that she would live to see another day (I might have been driving quickly!).
No bus waiting for us as we pull in at 4:55.
No messages on my phone.
I race to check for phone messages and glance at the time - 4:00. I started laughing hysterically. Poor Sammi, she was sure I had lost it completely. I guess this will teach me to set my clocks in my cars when the time changes! At least we made it in time for the bus!

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Here in Louisville the schools are crazy, have I mentioned that?  Middle and high schools are applied to.  Everyone has a “reside school” (read the school you have to go to if you can’t get into a good one), and there are magnet schools and magnet programs and optional programs and all kinds of craziness.  Lizzy had her mind set on getting into one of the BEST middle schools.  (We are so disappointed with their school right now).  So we went to their open house. You tour the house, the Principal tells you how awesome they are and about the application process.  The school was packed!  This school houses the AP (that’s Kentucky for Gifted and Talented) and one of the two Music Magnets. Liz was so excited! Then we listened to the 7th/8th Grade Orchestra.  We looked at each other and we left.  She told me in the car, “Mom, the 5th Graders at Mittlestadt sounded better than that.” Sigh.  It’s just not a musical town.  We won’t be applying to the Music Magnet.  So she’ll stay where she is for 7th Grade.  Why do a two hour bus ride for nothing special? At least where she attends, the Orchestra Director lets Liz advance as quickly as she can.  We love her and how she encourages Liz and Jes. 

Brother’s Halloween Trick or Treating at VIPS.  Isn't that sweet?  His teacher sewed his name on the bag and his “A” in Braille.

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Sweet boy sleeping                   A hot air balloon

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I was allowed to attend the girl’s Halloween Party.  So fun! Joy took my picture. Her teacher made these cute “Five Little Pumpkins” mittens.  Joy dancing with her teacher to “Monster Mash.”

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Throwing glowing bracelets onto pumpkins.  Playing pin the witch on the broom!  (They didn’t make Bella wear a blindfold – thank you!)

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Playing Halloween Hokey-Pokey   Decorating pumpkins – Joy was so proud!

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Then it snowed one morning – I was ready to pack up and go home!  So cold!  It didn’t stick – thankfully!!  But Jason, Jessi, and Lizzy were fascinated!

Voting – yes, I did vote in a Union Hall using paper ballots.  Seriously, I wonder what year it is sometimes here in Kentucky!  (Not very nice Shelly!!)

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And then this!  COLD!  Isn’t there a tool for this? I’m usually running out the door, now I have to deal with this?  And Lizzy learned it’s best to have mittens/gloves/huge coverings on when touching this insanity of frozen water!


Jessi found the base to my expensive blender!! So excited.  I thought it was gone forever!  I use it to grind my wheat and it was just gone!  So sad.  Jessi found it! It was in one of the boxes in her room.  They still have a few boxes of keepsakes that they haven’t unpacked.

And just because I love her curls :)

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Jessi has a new hobby on the bus (long ride).  She takes a picture on her phone and then tries to draw it.  She comes home with lots of landscapes. This one is Brother and then Brother asleep on the couch.

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These two! As compassionate service coordinator, I get to go into people’s homes and learn about their lives.  Sometimes I take a kid or two.  I took these two with me to one visit.  The Mama called and asked if they could become her Mother’s Helpers twice a week.  There are three little ones with some challenges and my babies just love doing it! I love that they love doing it!  They know so much with everything they live with every day.  Jessi told me how fun it was to read a story to a child and for the child to stay in her lap for the whole thing!  I love this for them!

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We had Sammi’s 504 meeting, so she is all set up here.  Her teachers tell me she is working hard and doing well. I’m hoping after this meeting that she’ll feel she’s doing well.

Because she’s adorable!  Joy, the doctor, and Joy, the something! :)

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And Brother.  Sweet Brother.  My Brother.  Oh, Brother!  There’s a reason I have been sarcastic, bitter, and a crying mess for the past two months.  One is the move.  It’s huge to move. To leave everything you know, where you know how things are done, where things are familiar and just leave.  I miss things.  I miss HEB.  I miss being in YW and my friends there.  I miss knowing what’s going on.  I miss having my family close enough I could see them.  I miss familiar faces at church.  But one thing I’m missing a TON right now is our therapists.  I need to talk about development with people that know I know what I’m talking about.  Talking with me, people figure out that I know some stuff, but right now I don’t have time to prove myself.  My boy needs help – STAT if not sooner. Brother has always been a puzzle, a wait and see kid.  Who knows what he’ll be or do kid.  A 27 weeker can have a normal life or can sit in a wheelchair all day.  It depends.  Throw Meningitis in the mix.  Add a bilateral Grade III brain bleed.  Insults to the brain.  Go ahead and kill the optic nerves while you are at it.  And what do you get?  I don’t know.  I’ve been trying to figure that out for a couple of years now. One thing is he is a sweet, loving boy.  Our family loves him so very, very much!  Love can hurt sometimes.  Love hurts when you see someone you love suffering.  Love hurts when you see your dreams for your loved one dying.  I have noticed behaviors in Brother that alarmed me, but blindness can cause developmental delays.  It can cause some strange behaviors.  And so I lived hiding behind those thoughts. “He’s just blind.”  Here in Louisville and because I have my education background, they let me sub at VIPS. I love it!  I love to see the children and work with them.  But I quickly saw that Brother’s behaviors weren’t like the other blind children.  No, there was more at work here than just being blind.  That voice at the back of my head that I’ve been ignoring, quietly said, “See, I told you so.”  So I took him into the doctor and now we are headed in for the formal diagnosis of Autism.  I don’t want that label on my boy. I don’t like what I read about autism.  I don’t like what I see that these children and their parents go through. But it doesn’t matter what I want or what I like.  So we add another label to the growing pile and I seek more desperately to get him into the right kinds of therapy so he can be the very best Alex he can be.  I have to decide, and decide quickly because his third birthday is coming up and that means school and school placement, is Alex an autistic child that is blind or is he a blind child that is autistic? (I know that isn’t people first language, but right now I don’t care.) If he’s a blind child that is autistic, he needs to be in a VI classroom and they need ABA training (VIPS).  If he’s an autistic child that is blind, he should be in an ABA classroom with a TVI (what we had planned in Houston).

(And as a side note about labels – I’ve been asked before “Does it change your love for your child?” “Is your child any different because of this label?” People don’t ask these stupid questions!  Yes, a label changes everything!  Up until the label, you can live in denial. You can have hope.  You can hope you are wrong and that tomorrow everything will be great.  A label tells you that this is real.  You weren’t pretending.  The hard thing is going to happen.  You have to deal.  So, yes, labels are hard and they hurt. End of lecture.)

My pediatrician asked me if we would move home now that he has this diagnosis. Oh my heart!  It was ripped from my chest with this diagnosis and I’m missing home so badly it’s a physical pain.  It was all I could do to answer that while yes, we moved here so Brother could go to VIPS, we prayed about this and there’s a reason we are here.  If it’s not VIPS, it’s something.

I breathe.  I inhale. I exhale.  I read about autism.  I cry.  I wonder.  But for you, Brother, I will figure it out.  I don’t know anything right now, but I know that we’ll figure this out! I promise!

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To end happy – a does of cuteness!


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