Wednesday, December 26, 2012

'Twas the Night Before Christmas

It's my favorite night of the year.  Mass followed by family gathering.  Arrive home and set out cookies for Santa.  Tuck children into bed and wait for Santa's visit.  After it is all done, sit and soak in the glow of the tree and enjoy the peace and tranquility.  Merry Christmas!

Sunday, December 23, 2012

Christmas Eve Eve

I love that Christmas Eve and Christmas fall on a Monday and Tuesday this year because it gives us the entire weekend to relax a bit and spend time together as a family.  The girls have been feeling under the weather so we've been pretty low key lately and have mostly been watching the Christmas shows in the glow of the tree lights.  Today we were ready for more action so we baked some cookies in the morning and this was the first year Chris and Emma joined me and Julia in the kitchen.  Both really added a bit of excitement to our standard cookie baking activities.  Let's just say Emma kept inching the cookie sheet away from Julia until she finally had it in front of her and then....well, let's just say she was so excited that she decided to see if the cookie sheet could land facing up if she pushed it onto the floor.  As for Chris, he was a bit overzealous in making a sugar cookie snowman and it turned out looking more like the State Puff Marshmallow Man.  We named that batch of cookies (yes, it was the same one Emma tossed on the ground!) the batch of misfit cookies.

After the kitchen adventure we hit the road to take on the city Christmas attractions.  We visited the Comcast center for the show, walked through Christmas Village and enjoyed Dickens Village in Macy's.  We were shocked that Santa was at the end of Dickens Village and that gave the girls a last chance to adjust their Christmas wish lists when they sat on his lap.  I want to give a special shout out to the amazing Macy's employee who saw us gape at the at least two hour long line to get into Dickens Village knowing full well Emma would never make the wait.  This amazing man took us aside, brought us through the employee entrance and dumped us right inside the start of Dickens Village!  It all happened so quickly we didn't get a chance to thank him, but he really did put the magic in our day today!  Thanks so much!!!!!!!

Here are a few photos I took to capture our day in the city.  Enjoy!

Saturday, December 22, 2012

Neighborhood Santa Visit

There was a lot of excitement around here this morning as Santa paid our little street a visit.  The children were all giggly and excited waiting for his truck and I just love the sound of that - it's like heaven on Earth!  Thanks for the visit Santa!  The children are more excited than ever for Christmas, now.

(Note:  Emma was whisked out of bed, dressed quickly and outside waiting for Santa before she barely woke up!  My little night owl who loves sleeping in just cracks me up ;-) so I had to have a bit of fun with her in the photos.)

Monday, December 17, 2012

Snapshots of life

Mommy take my photo so everyone can see how I look like a Bunny without my teeth!

No, no.  I'm quite sure these boots were not made for walking.

Saturday, December 15, 2012

Look Ma, no hands!

Emma's doing really well with driving her power wheelchair now that she is able to control it with head switches.  The head switches have been on loan for a couple of months and I *think* we need to give them back this month, but I'm hoping her team will see the video below and let us keep them a bit longer because Emma loves to drive her chair!  (Note:  Yes, I know she is missing a show in the video. I also know her feet are not strapped down.  There is a good reason for both, I'm just choosing not to tell it here....)

A few key things you can see in this video show just how skilled Emma is getting at driving her chair.

  • She wants to touch our car so badly that she moves her chair so she can touch the car, adjusting her driving a bit to get closer to touch it, without driving into or bumping into our car.  So cool!  
  • When she hits the lawn chair and Chris tells her to stop she pulls her head forward, which stops her motion.  
  • She doesn't have a reverse option yet and has learned to turn herself around in a circle so she can then drive forwards to areas that were previously behind her.  
  • With the boxes, too, you can see that she stops before she hits them (for the most part;  we had been playing a game of knock the boxes over before I took the video) except for when we tell her to plow the boxes over.  
  • She is getting really good at knowing when to stop and fine tuning her driving and this has all been since we've had the head switches so she's acquired these skills in about 8 weeks with only practicing on fair weather days when we can do it outside.  

The power chair Emma is using (on loan for as long as necessary from a very generous friend!) has battery and drive motor issues that causes it to pull to one side and are, apparently, expensive to fix.  That plus the need to purchase head switches resulted in the wheelchair clinic recommending we buy a whole new system for Emma because it will have a similar cost but include all the warranties.  Sold!  The challenge is she received a manual chair in March 2012 so they are trying to space out the request for the power chair to have the best chance of insurance approving it.  I plan to set up an appointment at the clinic to order one in January.  Fingers crossed insurance approves it without much fight.  Can't you just see Emma running around the neighborhood, school, and the mall in her own chair?  I can!  I really can!  And I find that idea so exciting!

And while Emma is starting to make some real gains in her communication and is demonstrating great joy and skill at using her head-controlled power chair, my heart is feeling a bit confused these days.  The change we are seeing from her is incredibly significant and makes my heart swell with hope and joy.  Each and every one of these gains has taken years to get them and are a cause for real celebration.

Yet, we have some friends that aren't so lucky.  Friends that are struggling with their children this holiday season.  Friends whose children may never gain the skill set Emma is starting to achieve.  Friends whose children once had the skill sets whose children are in a decline with very precarious health.  We say prayers for them every night.

So, it feels a bit bittersweet sometimes to share all Emma's accomplishments here knowing that some reading this blog are on a different road.  This season we are praying that those families receive a Christmas miracle of their own to celebrate.


Thursday, December 13, 2012

Tears of joy

It's amazing how far Emma has come with her speech therapy.  It has always been her most hated therapy; not because of her therapists (nearly all who were very sweet and encouraging) but because it is so gosh darn H A R D for her.  So more often than not she refused to participate, instead finding fascination in the most minuscule of items.  All her therapists put her in the most bland room where there was nothing to look at in the hope that Emma would participate and not be distracted but she was always able to find fascination in a light switch that never moved or a light that stayed on.  I cried a lot in the early days after her speech and hearing sessions because I just wanted Emma to make some progress so so badly.

When we moved and Emma started at her new school a spark ignited and she started to participate better.  Her SLP is amazing to work with and Emma just clicked with her and let me tell you when a child clicks with her therapist amazing things happen!  Emma started letting her SLP in on all that she knows, first by switches and then through various higher technology talkers as we tried to find the right device to buy.  When Emma picked the Eco2 (her Evie) as her talker of choice we were happy to move forward with customizing Evie with her interests instead of the generic boards of the borrowed devices.

Emma was doing well with the initial word set we created so this week we added in a lot more new words and Emma rose to the challenge.  Many of the words (like please, in, feel, hug) were brand new to Evie and somehow Emma knew just how to use them.  I mentioned on Tuesday that Emma said a few things over the course of an hour that day and I was so thrilled with that because it was the most she used it in an outside the home setting.  Today I found out she has been holding back on us.

I had a meeting already scheduled for today with her SLP and before we got to the reason for our meeting she had to share what happened in her school speech session yesterday.  She had it all written down and was grinning ear to ear about it.  I was in shock at how much Emma said in her session and just have to share.

Below is what her SLP wrote down during the session.  So glad she was able to share all of it with me!  Note: All words selected by Emma via her eyegaze are in italics.  Each word in italics requires Emma to select it so if she says play doll, she needs to select play and then select doll, thus stringing the two words together.

  • SLP asked Emma what she wanted to play with.  Emma said doll.
  • Then Emma said want Erica and looked over at Erica, her aide, and gave her a big smile.
  • SLP didn't have a doll in the room so she was hoping Emma might change her mind.  She selected the toys option and asked Emma to pick again and Emma selected play doll so the SLP went and got a doll :-)
  • SLP asked Emma how the doll feels.  Emma said bad
  • SLP was confused and so she said the doll feels bad?
  • Emma said need
  • SLP said need?
  • Emma said need hug 
  • Her doll needed a hug - oh my gosh how cute is that!!!  So the SLP gave Emma the doll to hug and she hugged her for a long time.
  • Then Emma said in stander
  • SLP and Erica didn't know if this meant Emma wanted the doll to stand or if Emma was used to being in the stander at that time of day.  So for now we don't know what she meant.
  • SLP asked what Emma wanted to play with the doll
  • Emma said ball, so they rolled the ball between Emma and the doll and Emma laughed the entire time.  
  • Erica left to go to the bathroom
  • Emma said want Erica
  • Emma again said want Erica
  • When Erica came back into the room, Emma said hi and then smiled at Erica
  • Then Emma said toy drink smoothie
  • They pretended the doll drank a smoothie and her SLP told her it was time for her to go back to the classroom.  The 30 minutes were up.  Seriously, all this happened in just under 30 minutes.  My mind is quite blown away by this.  
  • Emma then said play please
  • SLP and Erica could not refuse her that request - they were tearing up with all Emma had said and then she said please.  Oh, my!  How could they resist?  So they agreed to play a bit more with her and then said it was now time to go.  
  • Emma said want friends meaning she was ready to go back to the classroom where her friends were.
  • Then she said (and this is a button that has a phrase in it so it said it all at once rather than Emma having to string it all together) well, I must be going now
I just had to write this down here so I don't forget it.  Did I mention that I'm blown away by all that happened in that 30ish minutes?

Look out, Emma, the bar is set high for you to achieve.  I have no doubt about your abilities and your team doesn't, either.  2013 is going to be your year.  I can't wait to hear all you have to say!

And now I'm off to add Love to the feel words because I can't wait for you to say Mommy I Love You.

Wednesday, December 12, 2012

Hopeful Parents

My monthly post for Hopeful Parents is up.  This month it's about something near and dear to my heart.  Click on this link to go read what I wrote in Life Changing Devices.

Tuesday, December 11, 2012

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.

Friday, December 7, 2012

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!

Thursday, December 6, 2012

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 StewartMon - Thurs 11p / 10c
Please Tell Me This is Rock Bottom
Daily Show Full EpisodesPolitical Humor & Satire BlogThe Daily Show on Facebook

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.

Monday, December 3, 2012

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!

Saturday, December 1, 2012

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!