Back!

Where have I been?

 Well first, there have been a few things that have steered me away from taking the time to write in the blog.  First, there was the tragic death of a young girl that went to my church.   It really was a tough time trying to move through those days and I was given the honor to speak at her Celebration of Life Services.  Truly, everything else seemed very trivial.

Secondly, Grad School is killing me!  I have been drowning under studying, reading, researching and attending class 3 hours a week.  Also during that time, I have to work a full time job, spend time with my family, help my daughter move along the continuum of her therapies and continue to make sure our relationship stays strong.

I'm also being clever in combing a few things.  My research paper for my Operations Management class was

"Hospitalization and the Child with Autism"

....hey, killing 2 birds I guess. Don't judge.  I'm trying to combine research for better experiences for my kid as well as get some homework done!!

Alright, so where does that leave us and what's been going on around here?

Therapy is non-stop.  Nea does her 2 hours of therapy without me present at all.  This is great prep for school!  She happily goes off with "A" and Diana and makes no fuss about it.    It feels like we are doing therapy even when we're not in a therapy session.   Jon and I take all the therapy ideas and translate them to real life and how we function around home.  It has helped on several occasions with several situations.

Imitating Mama with the iced tea and work badge.

It seems that we fight the sensory issues the most.  Knowing that this gets in her way often, is what becomes like the Beast I want to DESTROY on a daily basis.  She's been having issues even with walking becoming difficult.  She has always done really well holding my hand and walking (like into a building or crossing the street or whatever.)  But lately when she walks, she turns her head to the side, leans forward and walks almost backwards.  Or, she'll stop completely and start spinning and spinning with a few jumps in between.  It's damn near impossible to move from point A to point B.  I talked to her OT about the situation.  She explained  that Nea is trying to control sensory input (and there's a lot hitting her at once when you're out in the big world) so she's trying to manipulate the movement and self-stimming along the way.    She also gave me a few tips to try and get a better handle on it.
1)  Keep a hat on her
2)  Keep a backpack on her.
3) Try sunglasses.
4)Tell her, "First we will walk 8 steps, then we will spin 3 times, then we will jump 2 times, then we will walk 8 steps...."

Clearly, I'm going to have to leave my house far earlier if I'm going to do this intricate dance every where we go.

So I headed her advice which helped a little.  And then noticed when she walked with other people (her Poppa, Diana the Speech therapist, etc.) that odd way of walking isn't there.   She doesn't lean forward or turn to the side when walking with them.  She walks in a perfectly straight line.

So today in more discussion with the OT....... In short, it's ME...not her.

Dammit.

My knees and poor walk are giving her bad feedback so its hard for her to figure out how to work with it.  "A" explains that I need to give her different feedback when I am walking with her so that she can position herself correctly.  So I practiced a bit today when we were walking around the mall.  I held on to her wrist, rather than her hanging on to my fingers.  I also changed my pace a bit and tried to walk more "gruff" (If that makes sense it all)

Not one spin or lean from her as we walked.  Once again it is proven that the girl knows what she needs and makes accommodations....the rest of us are just silly for not understanding.

Her sessions in OT are going well and this week she graduated to doing at least 10 minutes in the hammock. The hammock is a big deal because it's the first device she's ever been in that doesn't have a "boundary" and she was "free-floating."  When Nea got out of the hammock, she looked like she'd been napping for hours.  She looked so relaxed.

Relaxed after OT, Speech, seeing Santa and a train ride!

Speech has been good too. Diana is so happy with all her progress and putting phrases together.  The Developmental therapist has noticed as well and makes many comments on her notes that she leaves for me.

Some of Nea's favorite phrases.....(which she is using correctly, not just echolalia)
"What are you doing?"
"_____ where are you?"
"It's okay!"
"Bye, bye Poppa!  See you later!" (whenever we pull out of the driveway)
"What's this?" or "Who's that?"

Oh they seem so simple, but these are huge advances for her.  This was a child who had a 5 word vocabulary and now she's phrasing together appropriately.   It's nothing short of amazing, if you ask me.

We've noticed over the last 10 days that she is starving for information.  She wants words for things and wants to use phrasing more than ever.  It reminds me of that scene in The Miracle Worker where the switch suddenly is turned on in Helen Keller's head at the water pump.   Nea wants names of objects now and she will hold them up for  Jon and I to label for her.  Then she will repeat the word.  The key now in this language development piece is for her to initiate the words on her own.  We'll have to push her even more, to move her from "repeating" to something more of conversation about things.

I watched her get very frustrated with Diana today in speech as she pushed her along this continuum.  Diana had a bin full of Pooh figurines and Nea really wanted them.  She lunged for them, grabbed for them and slammed her hand down when Diana pulled them away.  Diana signed with her....

"I    want    Pooh"
Nea slammed the table again.
"Nea, use your words.  Let's try again.    I  want    Pooh."
Nea responded, "POOH!" and threw her hands in the air.
Diana smiled, "Yes, Pooh!  Now....what do you want?"
Nea's response, "Want, Pooh"

Okay...we'll take it!  Does this make sense?  It's more than learning words.  It's about communicating.  This is where it gets more and more difficult.  No wonder abstract things like feelings are so hard to understand.  How do you teach THaT?!