What did you say?

This past week Emma was cranky.  A bit off and quite whiny.  Since she can't talk it's not a fun state of affairs when this happens because listening to constant whining is not my idea of fun.  I'm anxious for the time when she is better at using her talker - it can't come soon enough.

Last week her SLP and I decided that Emma was making good progress with the words on her talker and it was time to add more.  We added more core words and fringe vocabulary.  Basically, what that means is that when Emma chooses one of the main core works on her screen, the row at the top offers her a variety of fringe words.  She can now say "in" as her core word and the her top row (aka the activity row) gives her the option of saying "wheelchair" "stander" "walker" "crawler" "swing" etc.  We also changed up the activity row for the "want" core words so now she can say "Erica" "iPad" "Mommy" "Daddy" "Julia" "friends" and a few more.  Erica is her personal care assistant at school and friends is just generic to encompass either her friends at school, her friends at home, etc.

Last night I also added in "feel" to the core words.  Her options under feel are "good" "bad" "happy" "excited" "mad" "hurt" etc.  I am hoping working with these words will help Emma tell us when she isn't feeling good and where she doesn't feel good.  She knows her body parts so if she tells me she "feel" "hurt" then we can go to to body parts page and she can tell me what hurts.  This is one of the most exciting things about Emma's talker - that she will be able to let us know what is wrong with her instead of us trying to constantly guess from her whines.  It will be life changing - at least for me even if she doesn't think it is for her ;-)

None of this matters, though, if she doesn't use Evie.  We are finding ways to increase her access to it while at home and are also mounting it on her wheelchair whenever she is in it.  We are modeling the device for her to teach her how to use it.  For example, when people say hi to her we show her where "hi" is on Evie and we push it.  Our goal is to have her look and say "hi" to others independently.  We also show her "go" "bathroom" or "need" "toilet" when it's time to go to the potty.  We do this over and over again throughout the day on our various activities, changing the buttons we push based on what we are doing.

Our efforts must be paying off.  Emma has independently commented in her classroom at school.  For example, during art she has for scissors, markers, glue, etc. without prompting.  She has also used a few other words in her classroom.  This is big stuff.  Especially for my little girl who would prefer to go through life as an avid observer rather than work at communication.

Today, though, I got really excited when she said "hi" to her PT when she came out to get her for her session.  I think this is the first time she independently and self-initiated a conversation!  Then when we went back to the room Ms. Cindy had out and Emma's favorite swing and she got really excited.  She said "in" "swing" and Ms. Cindy promptly put her into the swing.  When her session was over she said "eat" "drink" and I told her she would get her lunch once we drove to her school.  She smiled and then said "need" "toilet".  So we went to the bathroom with the little bitty toilet in it (it's Emma favorite toilet ever!) just before we left.

I think all our focus on Emma's communication is starting to pay off.  I pray these aren't isolated communications from her but rather are the start of lots of chatting with my girl!  I hope one day to catch some of this on video so I can share it but Emma's a tricky one when it comes to cameras.  She loves to get her photo taken and stops everything she is doing when she gets even the hint that a camera or video is around.  I'll have to try some covert video operations to capture her progression with Evie.

I'm so thankful that God is helping make things click for Emma and she is starting to use Evie more. Here's to getting us on a path where whining and us guessing what it could be about are a thing of the past.

Winter Concert

Julia's school had their 1st and 2nd grade Winter Concert today.  They have been practicing for months and the children were so excited!  The theme this year was Being human:  Human be-ing and the concert was "the creative outcome of learning and sharing what is truly unique and magical about being human."  Doesn't that sound lovely?

It was.  The music teacher does such a great job with the children and he seemed to be having as much fun as them.  It certainly made for a festive atmosphere!  The children have no inhibitions and gladly sang their hearts out, sounding like little angels.  The concert was about 50 minutes, 12 songs in all, and it went by so quickly.  I could have sat there listening to their little voices and watching their hand gestures and seeing them bursting with enthusiasm for much longer.

Emma was captivated by the show.  She sat at attention the entire time and when everyone was encouraged to clap along to the music she gladly brought her fists almost together over and over.  It was wonderful to see (I've never seen her do that before!) even if it would have looked like she was flailing her hands wildly about to the *untrained* eye ;-)

I love watching Julia on stage.  She has no fear of an audience and likes being in the spotlight.  Some of the children would sway about and make the grand motions that went along with the songs, but not Julia.  She is one of the more reserved children; a bit more serious than some of the others.  You could catch a bit of her wild side if you looked closely for her little smirks, sideways smile and bit of extra swing in her hips.  It's fun to see that side of her.  I like when she lets loose and we are always encouraging her to test her boundaries more.

After the concert, Emma and I worked at the book fair until it was time for lunch.  We joined Julia in her classroom to eat and were surprised to find Julia had set out a couple of place mats for us at her table.  Yellow for me and purple for Emma - she picked our favorite colors!  Once lunch was done we left and were happy to arrive at the car before our meter expired since I found out today the expired meter ticket price is a steep $36!  Then we were off to tour a school I think would be a good fit for summer school for Emma this year.  We'll see how that plays out.

What a great way to end the week!

Senate doesn't stand up for worldwide disability rights

This week - Tuesday, December 4th - the Senate had a chance to ratify the United Nations treaty on the rights of the disabled.  It is modeled after the Americans with Disabilities act, was drafter under President George W. Bush and is a great step forward for people with disabilities around the world.  It should have been a no-brainer for the Senate to ratify it.  But it wasn't.

Former Senate Majority Leader Bob Dole made a rare appearance on the Senate floor in his wheelchair to try and sway the Republicans to vote Yea on ratifying this treaty.  They did not.  In all, 38 Senators voted NAY and refused to stand up for disabilities rights around the world.  All 38 Senators were Republican with Senator Mike Lee (R-UT) leading the charge and supported by former senator Rick Santorum (who, sadly, hails from my state of PA).  And I can only think to myself that the Republican party is supposed to stand for Christian values yet decided to do nothing for the disabled.  I am happy that in all 8 Republicans - including Senator McCain - did vote Yea to the treaty but that just wasn't enough.

For more information, here is an article from the Washington Post and here is an article on politicususa.

Senator Toomey from PA voted Nay.  I called his office and told him I was not happy with his vote.  Senator Casey from PA vote Yea.  I called his office and thanked him for his support on this treaty.   I encourage others to do the same.  Their phone numbers are:

Senator Pat Toomey:  202-224-4254

Senator Robery Casey:  202-224-6324

Want to know how your Senators voted?  Click this link to see.

And for a bit of perspective, Jon Stewart did a great bit on this issue called Please Tell Me This is Rock Bottom.  As he puts it - "Republicans hate the United Nations more than they like helping people in wheelchairs."

The Daily Show with Jon Stewart	Mon - Thurs 11p / 10c
Please Tell Me This is Rock Bottom
www.thedailyshow.com
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That about sums it up.  I hope this isn't what we will see for the next 4 years because, after all, we live with a government for the people by the people.  Your representatives vote for YOU.  Make sure you call them and let them know how they are doing with that job.  It only takes a minute.

General musings

The weather today is gorgeous!  A rare Fall day that doesn't feel like winter and will go up to about 60 degrees.  Everything seems a bit easier when the sun is shining and the weather is fine. I guess when it comes right down to it my main beef with winter is the hassle from coats getting situated in wheelchairs and car seats.  Thankfully, we don't have to deal with any of that today!

Emma woke up bright and early for herself and was in a ridiculously happy mood - even for a little girl who typically oozes happiness.  We spent a bit of time doing some hand stretches and hand playing - where I would open my hand and stretch it out and have Emma copy me and then I'd put her hand in mine and we'd wiggle them around.  I'm noticing that Emma's hands are getting tighter and tighter and that makes me nervous so I've been trying to stretch them more and finding ways to make opening them fun.  If anyone reading this has any ideas on how to stop her hands from getting so tight, please share (Annette - if you're reading this maybe we can plan a visit so you can give us some tips???  plus, we miss you a whole lot!!!!!!)

I smiled when I noticed Emma and Finney seem
to be looking in the same general direction!

Last night after Emma had her hair blown dry Julia took one look at her and said she looks different.  She looks older.  I agree.  My girls are growing up so, so quickly.  So today I brought my camera on our walk and decided to take a photo from behind to capture what I usually see from my vantage point on our walk.  Emma is usually looking all over the place with Finnegan leading the way while I try and manage to keep them from getting tangled up!  Emma loves to toss her head about and look back to see what I'm doing.  She usually looks up and over the headrest but today since she didn't have her chest harness on she decided to lean forward and give me a backwards glance.  She always gives me a sly smile as if saying "Just checking that you are still there - that you still have my back."

I've taken photos like this before and think about how much has changed.  In the beginning it was in her Kids Up FAST chair and my view of Emma was always with her little hat on which was the only way we could keep her CIs on her head in the early days.  It always seemed like she had such a tiny little head and eyes and smile a million miles wide when she looked back at me.  Always taking everything in while we walked.  When she was about 3.5 we were finally able to keep her CIs on fairly regularly without her hat at I just loved the look of the back of her head with the little ponytail on top swaying side to side each time she snapped her head around.  And now my view is of a lovely little girl with her hair held back by a fancy clip and her CIs mostly hidden under her hair.  She is in a big girl chair and now more often than not she has her talker attached so she can "chat" if she wants.  Mostly she doesn't want, but I expect that will change over time.

One thing I hope doesn't change is Emma's love for school.  She is so excited each and every day when her school bus arrives.  Lucky for me she is equally excited each day as her bus drops her home.  Her drivers said they've never seen a child so happy to both go and come home from school.  They just love having her on the bus and especially enjoy when she treats them to her "singing" on some of her rides home.

Life is good, even if it does seem to go by at warp speed sometimes!

The joys and heartaches of play

Last month my post at Hopeful parents was titled The joys and heartaches of play.  I posted a link to it on my blog but thought I'd like to post the text here so I could have it should I actually get around to printing out this online blog one day!

The joys and heartaches of play

Sometimes I let my mind get the better of me.  Instead of experiencing things for what they are I imagine what they could have been.  I do this sometimes.....and yesterday was one of those times.

We were at a birthday party for some good friends.  Everyone knows us.  Everyone knows Emma.  These are really easy places to socialize because I don't get the pity look - the oh, poor thing in a wheelchair look.  None of us want pity because our life is not something to be pitied.   I also don't get the somewhat ridiculous question of "Will she ever walk?"  Truth be told, I'm not too concerned with Emma walking and would rather she start talking - now that would change her life!

The birthday party was the kind where there were bouncy castles and houses all over.  All of them in primary colors and you can't help but smile when you walk in.  It fills the children with energy and there is lots of laughter and squeals all around.  It's a happy place and we love happy places!

We've been to these kinds of places before and Emma loves the bouncy fun.  But this time the bounce houses weren't adult friendly.  The size and navigation of them were made strictly for children so I couldn't take Emma through them without likely hurting myself.  There was one large structure that was made for littler children, but since Emma isn't crawling she couldn't really navigate through and it wasn't so exciting to her.   We were able to make one of the large bounce houses work - I put Emma in through the opening and laid her on her back like we usually do and when the children bounced around she was bounced.  She smiled the whole time and really giggled when the children bounced over her while being careful not to fall on her.  For all the other structures, though, she had to look at all the fun from the side.

I think Emma really wanted to go on the large bounce slide.  She squealed with delight each time we went over to watch her sister slide down and I felt bad that I couldn't take her on it.  Actually, I'm not sure I could have navigated the slide on my own let alone while carrying a 5 year old!  I also felt bad that she was looking on lots of the fun from the outside and I started to wonder what it would be like if she could walk.  What it would be like watching her climb up the slide wall and squealing with delight as she slid down.

Then I wondered if it would have been better if I didn't bring her to the party and I realized it was my hurting heart that brought me to that question.  Me not wanting to feel how different my little girl is when in a roomful of children and cheery bouncy houses.

But I know that wouldn't be fair to Emma.  When looking at her in that room she was all smiles.  Enjoying watching the children run around, bounce, squeal, hula hoop, climb the rock wall.  She enjoyed every minute of it even if she couldn't physically participate in the fun.  She was able to participate by just being there.  By being happy in the moment.  By experiencing joy.

I say it again and again - I learn a lot from my children.  So I finally decided to take my cue from Emma and just enjoy the moment and not get caught up in the what ifs.  To live life to the fullest and full of joy no matter the obstacles.  Thank you, Emma, for the reminder!