Saturday, December 31, 2011

Top Ten of 2011

Our Top Ten of 2011 (with a couple of details blocked out for privacy):

Friday, December 30, 2011

Christmas 2011

This year was another wonderful holiday season for our family.  I count it as a blessing that everyone in our families are healthy this year and we were able to celebrate the season together.  This is something I used to take for granted but as I get older I consider it a blessing indeed.  

The girls are at the age where they are familiar with the Christmas season and look forward to it all - the goodies to eat, the parties with family and friends, singing Christmas carols, picking out gifts for others, thinking of gifts they would like to receive, sitting on Santa's lap, celebrating Jesus' birthday, looking at the Christmas lights at all the houses, etc.  There really is so much that makes this season special and they are really tuned into it this year!

Julia had a day project at school to draw and write about their favorite holiday tradition.  She wrote her favorite thing is going to MomMom and PopPop's house for Christmas Eve and seeing all her cousins and family and eating dinner there and seeing Santa visit the house.  It warms my heart that she is more focused on spending time with family than the presents of Christmas morning.

Each year the Cochlear Implant group at Emma's hospital has a Christmas party with a visit from Santa.  Emma fell quick and hard in LOVE with Santa!  She was squealing and screaming and kicking her legs to get over to him.  We had no idea she would react this way because last year she wasn't so happy with Santa.  Each encounter with Santa during the season got the same reaction - lots of love!  I could swear that I sometimes see sunbeams shooting out of Emma's head and eyes.  She is so expressive and full of happiness and sunshine and it is so hard to feel sadness when you are in her company.  It's an amazing gift that she has and she is more than willing to share it with everyone she meets!  I can assure you that Emma's reaction to Santa over the season had more than a few people smiling wider than usual.

This year we continued some old traditions and made a few new ones.

  • The girls and I made another gingerbread house.  We use a pre-made kit because I don't really like to bake all that much.  This year we finished the kit in record time - our attention span for it was a bit less than last year.  Emma's school Christmas party had graham cracker houses for us to decorate and the girls really seemed to enjoy that!  They each had a house to decorate and the teacher had a sheet of paper made up with the symbols for each of the candy on it so Emma could choose what she wanted to use to decorate.  I loved that idea!  I think I'll do that for our family gingerbread house next year if Emma doesn't have another communication system in place by then.  This meant that our gingerbread house count for this year was a whopping 3.
  • We did a lot of family movie nights where we watched the Christmas movies on TV.  We turned out the lights, left on the Christmas tree lights and spread some blankets and pillows on the floor, added a bit of snacks and enjoyed the night together.  These nights are some of our best times together.
  • The girls and I attended the sing at the senior center again this year.  My Mom's group from when Julia was born still gets together frequently and one of the girls coordinates visits to the senior center that her mother-in-law attends.  The seniors love seeing the kids, the kids LOVE to perform for the audience, and there is a bunny there that gets lots of extra attention from all the kids.  This is such a great activity for the children and it really is a great way to put the spirit of the season into action.
  • Julia helped me bake Christmas cookies again this year.  She gets better and better every year and is quite creative in her colors and shapes.  She is also a master taste-tester of the cookies which could be why we didn't have too many extra to share with friends this year.  Did I mention that I don't love to bake?  Well, I do like it but only in moderation and when you pair this with a house of taste-testers doesn't give me lots of extra cookies for sharing outside of our get-togehters.   The cookies were very good again this year and next year I'm thinking of picking a signature cookie and making extra of that kind only and sending them out to friends.  Here's to hoping!

  • On Christmas Eve we laid out cookies and a note for Santa, sprinkled reindeer food on the lawn and then went to the same mass with my parents and headed back to there house for a light dinner.  We sang some Christmas carols and a few of the girls played some carols on the piano.  On Christmas day we did karaoke with the new machine that Mary got from Santa.  It was great fun even if it wasn't so great on the ears.  Also, each of the children performed after dinner.  There was some piano playing, flute playing, irish dancing, and standing.  It really is nice to see everyone showcase their talents!  

  • Chris' parents came over for Christmas breakfast and it was so nice!  The girls loved showing off their presents and playing with MomMom and PopPop.  It made for a very nice morning and we hope to have them over again.  

PopPop loved his gift so much he actually hugged the box!  Horray!
Happy Birthday, Jesus!  I hope we manage to keep the spirit of the season alive throughout the year.

Tuesday, December 20, 2011

Overheard in our house

If you were a mouse in our house, you might have overheard some of the following:

  • Julia:  "Mom, I made you this Menorah.  I made it as a surprise for you and it's very special.  I made it for you because I knew you always wanted a Menorah."  Me:  "Thanks - it's the best Menorah I've ever seen!"  What I didn't say was that we are Catholic so I never even thought about getting a Menorah, but if she made one special for me because she knew I always wanted one then it's my most favorite Menorah of all time!  And she was so observant to realize that is the one decoration that doesn't show up in our house at Christmas time.  
  • Julia:  "When Santa brings my coach..."  Me:  "How do you know Santa is going to bring the Coach?"  Julia:  "Because I already put my order in with him.  Remember my note?  It had the 3 things I wanted on it."  Oh, to be so sure of yourself!
  • Julia:  "Emma, that is NOT nice" sob, sob, loud sob.  Me:  "That's right Emma, Santa is watching you and you don't want to get on his naughty list."  Emma:  hysterical laughter, more hysterical laughter, falling over from laughing and laughing some more.  Heard right after Emma grabbed Julia's hair and pulled it during a game of Crazy Eights.  I don't think Emma did it on purpose, but she sure does love to watch others cry and thinks it's the funniest thing ever!  It does not endear her to the person crying, however ;-)
  • Julia, Chris and Emma munching on Christmas cookies.  Emma crying where hers is gone and demanding another.  Chris yelling at Finnegan to stop licking Emma to get all her crumbs.  Julia and Chris just sneak into the kitchen and take more and I wonder why it's taking me so long to build up a stash of Christmas cookies this year.

Lots of fun happening around our house this time of year.  Both girls are now done school until next year so we have lots of plans to sleep late, hang out with friends, and take some trips to the local museums.

Christmas from years past.  How is time going by so quickly?  My babies are growing into lovely little girls.

Thursday, December 15, 2011

Time and some random nonsense

The older I get the quicker the time seems to be going by.  I see the girls growing up right before my eyes and want the time to go a bit slower so we can make the most of these years.  I truly feel like these past few years with the girls have been the best of my life and I think there is something magical about seeing the girls grow up and come into their own a bit {really, they are still only 5 and 4 so plenty of time to come into their own}.  Each day I feel a bit of magic.

And I also feel some of the not so magic.  You see, there are the pesky loads of laundry, never ending housework, grocery store runs, cooking, etc.  That stuff is not so magical but still necessary.  I get it done but my house is never in perfect order.  If you stop over - even announced - it's likely that many things will be out of place and there will be dog hair all around.  It's just the way we roll around here and I won't apologize for it at all.  I vacuum every night but our beloved dog still seems to have more hair to spread around the next day and the next day and the next day and we just don't really notice it around this house anymore.  Each night I pick up all our clutter and the next day it is back again.  This is sooooo not a Martha Stewart picture-perfect house.  I've learned to let go of a lot of things now that I'm a mother.  My old house was usually 99% tidy before husband and kids, but it never felt magical.  Our life these days feels magical and that magic includes a well lived in house!

The other day I was listening to a tv show - while completing some non-magical tasks such as unloading the dishwasher or peeling potatoes - and they were saying how it's awful that some people don't even sign their own Christmas cards letting the company that makes them sign them instead.  There is a lot of that type of messaging out there these days.  Trying to make people live up to an ideal.  And I just think this type of messaging is utter nonsense!  Not to mention that it was stated by people who do not have any little kids at home.

Many days I fall into bed utterly exhausted with a back that feels like it worked more than it was meant to work (for all the silly people who ask my how my back doesn't hurt after moving Emma around all day, it does!) but there is always a smile on my face.  Because no matter the season, no matter how busy the day was, I took time to share some special moments with my family.  To do that I sometimes take the "easy way out" -  including sending out cards with carefully selected photos (taken by me) that was pre-signed by a computer and the envelopes pre-addressed.  I didn't include our typical yearly update letter and instead added a sticker to the envelope telling people about this blog so they can get their update here.  I'm totally fine with this short-cut and have no problem with it at all!

Let's stop listening to the wild media messages and reclaim the magic of the season.   Spend time with our family, let our houses be a bit messy, make crafts, read Christmas books, take a drive around town to look at all the lights, go to church to listen to the carolers, visit with others.  This is how I want to spend my time and I want others to do the same.  So, this year if you send us a Christmas card and it is not hand signed with a message to us, I'll be happy to read your card and know you thought of us at Christmas amongst all the other things you had to do including experiencing some holiday magic with your family.

*****And I should now write a disclaimer that Chris thinks I shouldn't watch some shows because they just make me mad.  I think I'll be taking his advice and staying away from such shows for a while.

Wednesday, December 14, 2011

Wordless Wednesday

We've been busy around here.  Enjoy!

Tuesday, December 6, 2011

I Love You {Finnegan}

Emma has been very quiet lately.  She used to make more vocalizations in the past than she does now.  I am not particularly excited about the quiet time.  I prefer chatter.  Lots and lots of chatter.  And the pitter patter of little feet.  I don't get much of either from Emma, but I'm still keeping the Faith that both will come.  I've pretty much wrapped my head around the fact that Emma will likely use an alternative to oral speech to communicate and that she might not walk.  Walking to me isn't all that important, but the communication means everything to me.

Emma seems to be the most vocal with her dog.  She love Finnegan and Finney is so tolerant of Emma.  After all, Emma usually tries to show her love by giving her a big love bite ;-)  Today Emma crawled over to Finney and took a rest on her belly.  I caught it on camera and asked her if she loves Finney and then told her to say I love you.  She smiled and then made an approximation of I Love You.  I love it!  She's never made the approximation of I love you for me, but she has done it several times for Finney.  I'll take it.

Here she is in all her cuteness.  Enjoy!  And listen close at around the 16 second mark ;-)

Sunday, December 4, 2011

Catching Up

Nothing fancy tonight, just a bit of what has been happening here in bullet list since I'm in kind of a relaxed, lazy mood tonight ;-)

  • Julia and I were driving to a birthday party she had yesterday and we were talking about how her favorite subjects at school are the monkey bars and P.E. (gym).  I decided to ignore the fact that monkey bars are not a subject and I asked her what they did in PE this week.  She said they played soccer both days so I asked her if she liked soccer and she said it's not her favorite.  I asked her what her favorite sport is and she thought about it for a while and then said very definitively "Bocce Ball!"  I couldn't help but let out a few good for your soul laughs.  She joined me in laughing and kept telling me that Bocce ball is definitely her favorite.  I didn't know she like bocce ball so much, we have a set we used a lot at the old house and we'll have to find a spot around here that has enough of a lawn to play it.  Yes, she isn't going to be a great athlete.  Dancing is more her gig.
  • After I wrote the post on Emma's Tobii eye gaze trial mentioning that we might want to test the Eco2 next, I received a note the very next day from her SLP saying they wanted to talk to me about the Eco2 and that they think we should trial that system, too, and see which works best for Emma.  I SOOOO love how in sync I am with Emma's speech therapist at this school!
  • The weather here has been unseasonably warm.  We went and purchased our tree today and it was in the 60s.  We were even debating if we needed a jacket or not!  Last year we had the girls in 2 layers, hats, gloves, and boots to get our tree.  The wind was whipping and we were so cold and a highlight of the day was the hot cocoa with lots of marshmallows afterwards.  Today we found a truly mom and pop tree farm, had our pick the 3 trees they had that were around 6' tall (seriously!  that is not an exaggeration! this farm seemed to really love the 3' tree...), and came home and had some water with ice in it.  Of the two, I prefer the warmer weather but I wouldn't mind something in between.
  • Julia and I decorated Emma's wheelchair for Christmas.  It has tinsel and battery operated Christmas lights.  Emma was over the moon happy with the chair and couldn't stop laughing and squealing when she saw it.  It made my Momma heart feel good to see her reaction!  Julia then got a little sad.  We eventually got it out of her that she was sad because didn't have any lights.  I told her I would get her some and that made her happy.  The next day I bought her a strand of the battery operated lights. We decorated her doll's stroller and then we all went to the mall that night.  Both strollers sporting lights and Emma's with the additional garland.  We had so many people smile and comment on how they loved the lights!  It was so refreshing to walk around the mall and only get positive attention from people.  Not one person said God Bless You to me!  Believe it or not I usually get lots of well meaning??? people coming up randomly to me and Emma and saying that.  For the record, I HATE it when they do that!!!  So, I consider that a great trip to the mall.  Plus, I loved watching the girls enjoying the lights on the strollers.  
Lots of photos to share and I'll post some this week.  Now, off to work on my Christmas to do list!

Wednesday, November 30, 2011

Eye Gaze device trial: Tobii C15 with CEye

We've been working on a method of communication with Emma for a loooooong time now!  We have a variety of approaches - picture cards, hand gestures, iPad, looking at things, etc.  Most are initiated by someone other than Emma.  I've been looking for a way that Emma can initiate conversations, tell us all the good things going on in her head, and let us in on all her jokes because this girl is usually smiling and laughing!

This year at school we have a huge focus on her expressive communication.  Emma started using some scanning programs on a Dynavox and took to it pretty quickly.  I talked about it in this post.  Some drawback to this method are that it takes a long time to do the scanning and there are some challenges because of Emma's double whammy of hearing loss and poor motor control.  I have always thought that an eye gaze system would be a good option for Emma.  Last year we had a trial with the Dynavox with Eyemax eye gaze communication device and it was a disaster.  Make that a DISASTER.  I had high hopes going into the trial and came out feeling pretty defeated.  While there are many people out that that use and love the Dynavox eye system, it was not a good fit for Emma and so we kept plugging along with our various communication approaches.

I belong to a yahoo group of Moms with children with CP and a few of the children are doing quite well with the eye gaze systems so I didn't give up on the idea of eye gaze for Emma.  There were good parent reviews on the Tobii CEye and the PRC Echo2 devices so I talked with her SLP at school about wanting to try the eye gaze devices again.  Yesterday, the sales rep for the Tobii came to school for Emma to trial the Tobii CEye device.

I was reserved about the trial.  I remembered how excited I was for the Dynavox trial and I didn't want to be disappointed again like I was before.  I decided to go in with an open mind and see what Emma wanted to do.  No pressure on her or me.  Right off the bat the sales rep. impressed me.  He spoke right to Emma, gave her his business card first and then handed them out to the rest of us, asked her most of the questions.  Emma took to him immediately.  I'm sorry to say that it's all too often that people don't include her in the discussions just because she can't speak.  This man respected her as a person and knew that she was the most important person in that room for the trial.  It was very refreshing!

Emma tested the Tobii C15 and the C12 device.  The Tobii C-Series family of devices are "portable communication aids for text and symbol based communication, computer access and environmental control.  They are easy to set up and use, have batteries that can be replaced without having to shut down, feature side caps that can be changed and much more." (all items in quotes on this post are from the Tobii product literature)  The C15 device has a 15" screen, the C12 device has a 12" screen.  That is the main difference between the two.  Both were outfitted with the Tobii CEye, an "optional eye control module for the Tobii C12 and C15.  Accurate and precise tracking, works with most users, largest trackbox on the market."

What is an eye gaze device?  "Eye control is an alternative and complementary input method to using a mouse and a keyboard.  By looking at a screen you control the mouse and you click by blinking, dwelling (staring at the screen for a certain length of time) or using a switch."  The computer has a touch screen so you could also access it with your hands and we also tested where Emma would use her eyes to pick a box and then we would click the switch to select that box.

I have to say that it was super easy to calibrate the device for Emma's eyes.  It took about a minute!  I was very impressed with the Tobii for that reason alone.  After testing out several options, it seemed that Emma did the best with her eye gaze and a dwell time of 1.2 seconds.  We navigated through several screens.  There was a screen where she could pick a book she wanted to read and then it opened up and she could select the pages to have them read out loud.  She did great with that!  Here is a small video of her and the books that I took the second time she chose to look at books.  We had been working on the books for a while so she was getting a bit tired when I finally realized I should take some video.  The volume is low because she previously was playing music with the machine and her eye gaze and the volume was super high for that program so we had to turn it down.

We also had a screen where it looked like a storybook page and a child in a wheelchair was sitting at a table with his friends.  There were bubbles on the table and presents around and Emma could use her eyes to select items.  When she selected the bubbles with her eyes, a grouping of options filled the outside perimeter of the screen.  She then "played" with her eye and selected a few of the options.  One was "blow lots of bubbles", so her SLP blew bubbles for real.  Then she chose "let me blow bubbles" so we let her try and blow them.  She did a few other things, such as comment "this is fun", on this page and it really seemed to capture her interest.  It was a nice way to interact and I could see this as a great tool for actual activities in the classroom where we take photos of the kids and put them in the scene and Emma could call out her friends names, tell them to blow bubbles, etc.

Another thing she did during the trial was look at some flash cards.  We would ask her where is the *animal* and she would look at the screen and use her eyes to select it and then the device would speak the name.  We only had one card up at a time, but you could put several up there and ask her to select matching items, odd one out, etc.  I think she would have a lot of fun with this!  Here is a little video of her with the flash cards, again she was a bit tired when I pulled out the video camera but she was still participating!  The blue dot is what her eyes are looking at, in case you are wondering how to tell where she is looking.

We also tested out a fun little dice rolling page.  It is a random dice rolling generator we could use for things like playing a board game as a family.  Emma could use her eyes to roll the dice and then the dice outcome would pop up on her screen and we could then move her piece.  We could likely even put a command on that page that says "Can you move my piece?" or "Your turn" or "My turn".  I can see some really good options for this page!  The nice thing about this, too, is that we could use our fingers to select the dice roller and just use the device to play without needing actual dice.  It would let us interact with Emma a bit more and wouldn't put her as the odd one out.

Emma was really on a roll for this trial and so we put up a music page.  Emma could pick between different music and turn it on to play.  The rep then danced (see, I told you he related well to Emma!) until the music halted and she had to select more music to play for him to dance again.  He suggested this was a good page to play freeze dance with her classmates.  Emma seemed to really like this page, and it was a bit similar to Simon Says that I programmed onto her iPad that we would play sometimes.  It just seemed so much easier for Emma to access the screen with her eyes than accessing it with her hands.

The trial lasted for about 1.5 hours.  Emma was distracted for part of that time, but not as much as I would have expected.  I was happy to see that she was interested in the activities we were doing on the screen with her and she attended to them for a long period of time!  After all, 1.5 hours is a long time for a 4 year old to pay attention to something.  It's also a long time for adults, but we were all so into the trial I didn't notice the time going by.  Emma did so well that it was wonderful watching it all unfold.

So, where do we go from here?  The rep. suggested we rent the device for a month through insurance instead of asking them to pay for the device right away.  It is hard to get these devices paid for through insurance and he said there is usually better acceptance if insurance does a month's rental first.  The monthly rental is very high, and the device price is even higher.  I looked online and found our state's AT lending library has the older version of the device Emma tested available for an 8 week loan period.  I think we might want to start with that while we get the ball rolling with insurance.  I also think we might want to test the ECO2 device to make sure we are ordering the best one for Emma.  Insurance won't pay for another one for a long, long time so we need to make sure we order the best device for Emma.

Once again I'm excited about the possibilities for Emma's expressive communication.  I always thought her CIs would mean that she would talk, but maybe her way of talking will be different than I expected.  Maybe she will talk with a computer.  I am at a place right now where having her talk, in any way possible, is exciting to me.  I am excited for her, excited for her future.  I still remain positive that Emma will use her voice one day for communication, but until that happens we are pursuing other options and so far the eye gaze device we trialed yesterday seemed like the best option.  The future seems very bright, indeed!

Monday, November 28, 2011

Craigslist Find

We have a loaner power wheelchair for Emma that is not working.  It hasn't worked since we moved and I have not been able to successfully troubleshoot the issue.  I'm not sure if it stopped working right before or right after we moved, but the fact is that it isn't working.  So Emma is not getting any use out of the chair and isn't learning to drive it.  This is soooooo frustrating to me.  I spoke with the fabulous Denise at our wheelchair clinic and she told me she would take a look at it if I can drop it off.  The main hurdle in dropping it off is we don't have a wheelchair van to transport it.  And we didn't have a long ramp to use in lieu of the wheelchair van.

About a month ago I put a Wanted ad on Craigslist for a wheelchair ramp that was at least 7' long.  I sort of forgot about the ad (and kept trying to figure out a way to get the chair serviced!) until I heard from someone who was willing to sell me an almost-new-exactly-the-same-ramp-I-was-eyeing-up-on-the-internet ramp for $100.  This is a great deal since an 8" ramp with an 800lb. capacity cost around $500 new.  The ramp was in two pieces - you can take them apart if you need a narrower ramp - so I had to put it together for our use.  It cost me $0.66 for the screws at Home Depot to put them together.  The only hiccup to the ramp is that the ramp wouldn't go together without the handles in the up position.  I suppose this makes the handles a bit quirky but it doesn't pose a problem for our use.  We now have a ramp that I can use to put the power chair in the van for service and that we can use as a ramp for the back door to our house.  I'm thrilled and hope to drop the chair off at the wheelchair clinic this week.

Here is a photo of the ramp in use at our back door.

I love it when we are able to make something happen for Emma that doesn't break our bank!  I'm looking forward to putting this ramp to good use.

Sunday, November 27, 2011

Dear Santa

Julia is very excited about Christmas this year.  She has seen some commercials on tv that really caught her attention - this is new because she has not watched tv with commercials until very recently.  She heard about Moxie Girlz on tv and hasn't stopped talking about them.  It helps that they have a bajillion commercials during her favorite show, Horseland, to market directly to the little ones.  I thought I'd share her letter to Santa this year as I just love it!

I love how she remembered that Santa eats the cookies and milk we leave out for him.  We haven't talked about that at all this year so she remembers it from the last few years.  Also, when she was writing this she asked me is that all? after she talked about the cookies.  She didn't want to have any more small talk with Santa and wanted to get right down to the details of what she wants.  After she wrote Love Julia she decided she needed to tell him that she has been a good girl so she wrote it in above her name.  At this age she isn't concerned about having all her words go in a line so she finished out her sentence by putting Good Girl on top of the I've been a.  She added a heart, flower, and some special santa symbols for him.  Love this letter!  I love how she wrote it herself and only had to ask me for some of the spelling.  My girl is growing up.  She even used a period after the word cookies.  She is very excited to put this in the mail to him and I just had to capture it for me before it's sent off to Santa!

Julia wanted Emma to write her letter to Santa tonight, but we are leaving that for another night.  Looking forward to Emma's letter.  I have to figure out how to go about writing one for her.

Tis the season!  Let the fun begin!

Week of Thanks Day 6

Today I am thankful for:

  • Getting together with young "old" friends
  • Easy hot lunches
  • Scooter riding children
  • Wii games
  • Holiday decorations
  • Conversations with neighbors
  • Selling unused stuff on Craigslist
  • Finding things we need at a good price on Craigslist
Until tomorrow...

Saturday, November 26, 2011

Week of Thanks Day 5

Today I am thankful for:

  • Warm weather days in late Fall
  • Twinkling Christmas lights making the evenings merry
  • Photos so we can go back and remember special, ordinary and everything in between moments
  • The towel service at my gym.  It's such a nice feature of the club!
  • Waking up without an alarm clock
  • Homemade Christmas crafts - pulling them out each year and remembering the years all over again
Until tomorrow...

At Longwood Gardens yesterday Emma couldn't contain her laughter and Julia saw no humor in the situation.  

Friday, November 25, 2011

Week of Thanks: Thanksgiving

I didn't get a chance to write my post yesterday.  We hosted Thanksgiving dinner this year and I roasted my first turkey.  Everyone seemed to enjoy it and for that I am thankful ;-)

I am thankful for:
  • Our house filled with family on Thanksgiving.  It's a great holiday made wonderful when everyone can come together as a family and have fun.  
  • Everyone was in good health this year.  We had no hospital visits even for routine things like therapy or CI mapping sessions.  I love having a normal, dr/specialist/therapy free week!
  • The food we had on our table.  This year we participated in several food drives for those who are struggling to put food on their table.  We will continue to participated in regular food donations outside the holiday season because so many people are struggling and getting good food and nutrition shouldn't be so hard.
  • At the beginning of our meal we went around the table and talked about what we are most thankful for.  I loved listening to everyone's responses and it makes wonder if the people in the store lines on Thanksgiving are missing out on the true spirit of the holiday season.  

A little bit about my day (because in the future when I go back through my posts I'll wonder what the heck we did for this Thanksgiving day).  The morning was a gorgeous 57 degree day and Chris took the girls and Brianna to the parade in the morning.  They went for hot cocoa afterwards.  Then they came home after the parade - but I was still watching it on tv!  They were at the beginning of the parade line and the dancing/tv cameras were at the end of the line and so there was about an hour difference in the time they were done and the tv cameras were over.   Their favorite part of the parade was watching the cheerleaders who were dressed up as reindeer do their cheers.  I think the hot cocoa was a top second favorite!

While I had the house to myself, I put the turkey in the oven and set the tables.  We had an adult table and a child table and both were set with my china.  The children's table was set with the dishes from my grandmother because I didn't have enough of my own china.  I loved that we used both sets of plates!  It was very easy to prepare dinner because everyone brought a dish or more and my oven was dedicated to the turkey and stuffing.  When most people were here there was a pick-up game of football outside.  The adults and kids played, Emma cheered them on while in her KidWalk and I think it ended up with a tie score when it was time to come in for dinner.  After dinner Chris showed the video from our Ireland vacation and it was fun to watch together.

Then it was time for a talent show.  Julia did her Irish dancing - she's had about 5 lessons so far and is doing great!  Brianna showed off some of her Karate.  Emma really wanted to get in on the action and Julia reminded me that Emma can pull to stand when she holds my hands now - a recent skill - so we had Emma do her standing a couple of times because she just lit up with all the cheering for her.  My heart melted at how Julia remembered that so we could include her sister - she is an amazing big sis.  How lovely to see the kids show off the talents they are working so hard to achieve!  The evening wound down with some games on the Wii that really woke everyone up.  I think my neighbors might even have heard all the ruckus from the games and we wouldn't have it any other way.  My niece Rebecca decided to stay over and after everyone was gone and the girls were in bed we headed over to the movies to see Breaking Dawn.  I was surprised to see the shopping area near the theatre so filled with people before we remembered that the stores were opening at night on Thanksgiving.  Ugh!  We made it to the movie and it wasn't too crowded.  When we came out around midnight there were huge lines outside the stores and we were happy to be headed home to be.

What a great way to spend Thanksgiving!  Best wishes for a wonderful Thankgiving to you.

Until tomorrow...

Wednesday, November 23, 2011

Week of Thanks Day 3

So, no video post today.  I completely forgot to bring it up today since we were busy flitting about and now the girls and their cousin Brianna are all cozy watching a video and don't want to be disturbed.

Today I am thankful for:

  • Sleepovers.  Last night Julia "sleptover" in my room while Chris slept in her room.  It was great bonding time and I got to have some wonderful conversations with her.  We also love when any of the cousins sleep over.  The girls have so much fun with them!  And it does my heart good to see Emma hanging with them as just one of the girls.  They completely accept her for who she is and usually argue over who gets to move Emma to and fro - so cute!  
  • Family dinners.  My pumpkin pie is baking in the oven and making the house smell delicious.  I am excited to host our dinner tomorrow and make my first turkey ever.  Fingers crossed it comes out good - but I have lots of gravy in reserve just in case!  Family dinners also mean everyone brings a dish making it less work for the host and lots of fun for everyone.  
  • My helpful husband.  I'm beyond thankful that we found each other.  Who would have thought I would meet the love of my life on a dating site so many years ago!  We are still so in love with each other and everything we've been through the last 7 years has only brought us closer together.  I'm also especially thankful for his help today in getting ready for tomorrow along with him taking the initiative to clean the toilets - he's a keeper and he's all mine!  
  • Home videos.  Chris has been working on our summer vacation video and it's so nice to look at the video and remember our amazing family vacation to Ireland.  It was incredible to have the entire family together in Ireland.  I'm not sure if it will happen like that again, but I sure am thankful we have the memories and videos to remind me of that magical vacation.
  • Giggling girls.  Right now I am listening to three girls giggle in the other room.  It's the best sound in the world.  
I'm off to see what all the giggle are about and hopefully join in the fun.

Until tomorrow.....

Tuesday, November 22, 2011

A week of Thanks day 2

At dinner tonight we talked about what we are thankful for:  

  • Chris is thankful for our health
  • I am thankful that today was the last day of school/work for Julia and Chris and now we are all off and plan to spend a lot of time together
  • Julia wanted to know why she is going last but said she is thankful that we are getting to spend Thanksgiving dinner with her "whole" family.  I mean whole family.  Like, everyone is coming here.
  • Emma was in an ornery mood and decided to whine through the conversation.  I know she is thankful for a lot, but I think she would have been more thankful if we called dinner over and put her down to bed.  
I suggested we take a movie of us all talking about what we are thankful for so I could post it on her tonight.  I had no takers.  Emma even cried at the suggestion.  Maybe I'll suggest it again tomorrow only time it much earlier in the day.  

I am also thankful for cars that work, hide and go seek giggles to end the night, and girl nights.  

Tonight me and Julia are having a girls night.  I'm about to bring our tea up into my room so we can snuggle in and watch the Dancing with the Stars finale before we settled into bed.  Chris agreed to spend the night in Julia's room so we can have a full on girls night.  This is a better set-up than our last girls night when I slept in her twin bed with her.  I am thankful for a great husband who is swapping beds with Julia for our girls night so my back won't hurt for another week after our girls' night.  

Until tomorrow....

Monday, November 21, 2011

Giving Thanks

In honor of Thanksgiving, this week I'm going {to try} to post each day on things for which I am thankful.

Today I am Thankful for:

  • A healthy finish for Chris' marathon yesterday.  Two people died in the Philadelphia marathon and I can't stop thinking and praying about that.  I'm so thankful that Chris met his goal of completing his second marathon this year and I'm also thankful that he is taking a bit of a break before planning another one ;-)  Which leads me to.....
  • I'm thankful for lazy Saturday mornings with my family.  Sleeping in, hot breakfasts, pumpkin coffee, playing in PJs = weekend bliss!
  • Our family.  The love and support they give us is amazing.  We are so blessed!
  • Being a stay at home Mom.  Every day is a challenge.  Every day is different.  I can't remember the last day I "stayed at home."  I am so thankful that I'm getting this time to love, nurture, and spend quality time with my children.  We are all better for having this time together.  
  • Our new home that fits our life right now.  The schools the girls attend.  The progress we are seeing with Emma's communication and the self-confidence we are see in Julia.  
More tomorrow.....

Monday, November 14, 2011

Holiday Prep

This year I'm trying to get a jump-start on the holidays.  I've been making lists for crafts to do with the girls,  lists for Santa and family gifts, parties we want to attend, get-togethers we want to host.  Yesterday we dressed up and I took some photos to start working on our Christmas card.  I'm also starting to wonder what we are going to do for Julia's birthday party in early January that she asks about every day.  She is definitely more excited about her birthday and party than Christmas, but don't let that fool you because her list for Santa this year is getting pretty long!  With all this planning I'm hoping I'm not as behind as I usually am for the holidays - fingers crossed.   

We are hosting Thanksgiving dinner this year and it will be the first time I'm making a turkey.  Since the turkey is generally the start of the show on Thanksgiving I'm hoping it will be a whopping success.  If not I'll just add extra gravy to save the day!  I'm still working on the menu but I'm planning on keeping it pretty traditional - turkey, stuffing, cranberries, potatoes, veggies and rolls with pie for dessert.  Emma has off the week of Thanksgiving and Chris and Julia have off on Wed, Thurs, and Friday so I'm looking forward to the extra time with them.  I think it will be nice to have some help on Wed, too, to get the house and food prepped so we don't have to do it on Thursday.  

When I was younger my Dad always took me and my sister to the Thanksgiving parade in town and I have so many memories of those days.  I vividly remember how there wasn't a store open, not even a convenience store!, that day and no bathrooms to relieve our tiny bladders.  As the years went on McDonalds started opening and we were able to get some hot chocolate to warm us up after the cold morning at the parade.  These days things are different with so much open on Thanksgiving and I have mixed feelings about that - it's nice to have the convenience, but not so great that so many people aren't home with their families.  This year (weather permitting) Chris is planning to take the girls to the parade!  I'm so happy for them and hope they love it as much as I did, especially the finale when Santa and his elves make an appearance.  Having them at the parade will give me a bit of time to cook a turkey and other fun stuff at home.

I found a few crafts that I'm going to make with the girls.  In the past we had projects we tried to finish all in the same sitting.  They usually ended up with me finishing most of the projects after the girls were d.o.n.e.  Lately I've taken to presenting the project we are going to make and spreading the steps to complete it over a few different craft sessions and Julia was amenable to this change.  This change has make crafting with the girls much more enjoyable for me.  I'll post photos of the projects as we complete them.  

Friday, November 11, 2011

Veteran's Day

Today is Veteran's Day and I'd like to say how truly thankful I am to all the men and women who served or are currently serving our country.  The sacrifices you make are so truly humbling.  Thank you for your service.  God bless you and God bless America!

I'm also reminded today of the effect Veterans have had on the disability rights movement.  I'm not sure if many people are aware of this, but it was the WWII vets that really started the disability rights movement.  Some came home disabled and wanted the same rights they had before they left.  Others came home and had children, some of those children were disabled.  Their generation said they fought for their country and they were not about to put their disabled or mentally challenged children in institutions.  It was their strong spirit, their willingness to fight for their children's rights, that started us on the path we are on today where people - old and young - with disabilities now have protections within the law.  And for this reason veterans have a very special place in my heart.

Thank you for all you have done and continue to do!

Wednesday, November 9, 2011


I've been thinking of my theme for this year - Faith.  Faith that all things are possible.  Faith that I am exactly where I am supposed to be on my life journey.  With a little over 7 weeks (yikes!) left in the year and with Thanksgiving coming up, my mind is spending some time reflecting on this year and I find myself often coming back to my theme of Faith.

I have to confess that there were parts of this year when I didn't always kept the faith.  I wasn't sure that Emma would make as much progress as she has.  I wasn't sure she would ever give a consistent Yes/No response.  I wasn't sure she would participate in her new school program, that she wold make gains in her communication skills, or that she would figure out a way to walk in her KidWalk again after her growth spurt.  I tried to keep the faith that she would make all these goals, I really tried, but sometimes my mind would just not stay on board.  And I would worry.  Of course I wouldn't let anyone know that I had anything but 100% confidence in Emma, but silently I sometimes felt a little bit of doubt and then I'd feel some guilt at my doubt.  And then I'd notice a few new gray hairs and knew any worrying just wasn't a good idea ;-) and that I had to come up with a plan of action, because nothing comforts me better than a well composed plan of action!

It sometimes took the additional gray hair to remind myself that the theme I chose for this year is Faith and my plan of action was usually to practice it more, flex my Faith muscle so to speak.  Over this year there were times when my faith was at a high and others when it was at a low.  I think this is normal for me and actually think it's probably normal for most people.

I know that I've come a long way on my Faith journey this year.  I rarely need to "borrow" faith from others these days.  I spend most of my time believing that all things are possible and that I am spiritually and mindfully exactly where I am supposed to be on any given day.  At this time of Thanksgiving, I have so very much for which I'm thankful.  And I have Faith in what the future holds.

Monday, November 7, 2011

Sesame Place

There is a wonderful amusement park in our area called Sesame Place.  As the name implies, the theme of the park is the tv show Sesame Street.  Characters such as Elmo, Zoe, Abby Cadabby, Bert, Ernie, the Count, put on shows, make character appearances and star in the closing parade.

But this is not an ordinary park;  this is a park with heart.  Every year they team up with Variety - The Children's Charity and close the park to the general public in the spring and the fall and invite families that have children with disabilities to come and have fun.  And they do this for free.  The only cost is for parking and all that money is donated to the local Variety chapter so they can continue their work dedicated to promoting and protecting the health and well-being of children around the world.  Amazing generosity!

We have attended several Sesame Place days with the girls with the most recent even this weekend.  It was a beautiful sunny, cool Fall day and the park was the most crowded I've ever seen.  Chris' Aunt Mary Lou works there and she told us they sent out 15,000 tickets and I think the turnout must have been close to 100%.  Emma's favorite tv show is Sesame Street and I think this year she appreciated meeting the characters more than years past.  She kept trying to jump out of her chair to go up and greet them - it was the cutest thing!  Julia brought her baby doll this year so she could introduce her to Sesame Place and both girls were treated to some special gifts by Aunt Mary Lou (thanks so much!!!)!

Julia has become unusually attached to her Snufalufagus doll and is using him as a stand-in for Puppy on our outings.  Puppy is her most favorite stuffed animal and we don't let her take him places for fear of leaving him behind (a good rule implemented only after numerous late night searches that included car rides to locate Puppy).  Emma loves her Zoe doll and wants to hold her in the car.  She looks around for her when she is put in her car seat and when we ask her does she want Zoe Yes/No she always answers yes and makes happy sounds and movements when Zoe appears!  She picked an Abby Cadabby doll as her vacation memento last year and it seems like Zoe is becoming more of a favorite than Abby.

Sesame Place has a few rides but a lot of climbing and gross motor areas.  The park is very accessible and wheelchair friendly, but if you can't walk it's hard to participate in many of the rides.  The nice thing is that there are a lot of shows/mini plays that happen throughout the park and a large parade at closing time.  We arrived around noon this year and stayed through the parade.  We didn't see any shows because we did do a couple of rides, the bounce mat area and met some characters and since the park was so crowded these each took a bit of time.  Aunt Mary Lou suggested an area for us to camp out close to parade time and the seats were perfect!  The girls really enjoyed watching the parade and having the characters do their musical dances right in front of them.

Thanks so much to Sesame Place, Variety, and all the volunteers that made this weekend possible!  We truly are so lucky to have the opportunity to enjoy a great day out with our family.

Thursday, November 3, 2011

School News

Today Chris and I are feeling really good about the school decisions we made for both Julia and Emma.  As a parent it is hard to know if we are making the right choices and it's wonderful to have a day when you can sit back, take a deep breath, and know that for now we are exactly where we are meant to be.

The future is so bright, she has to wear shades!
Chris and I had our first parent teacher conferences for Julia, making it our first parent teacher conference ever (because there is no way that I'm counting the endless hours in IEP meetings for Emma as a parent teacher conference)!  I'm happy to say that they seem to love her almost as much as we do!   They see the same sweet, genuine, caring, brightness that we see in Julia and are thrilled to have her in their class.  Julia has been in kindergarten 37 days to date.  Her teachers showed us her journal with her writing from day 1 to now and it is striking how mature it is getting after only 37 days.  There is punctuation, capitalization, spaces between words now where it didn't exist on day one.  She is on track for many of her pre-literacy and math skills, participates readily in all the class activities, and has many friends.  They described how Julia plays with others, the activities she enjoys (dramatic play tops the list), and the unique qualities she brings to her class.  It was wonderful to hear more about her school life from people who have been brought into Julia's world only recently.  As I said to her teachers, Julia was born with a great heart and compassion and we can't take the credit for that but we are truly honored to get to raise her as our daughter.

Since it was parent teacher conferences, Julia had the day off from school and joined me to drop Emma off at school.  It was her first time seeing Emma's school and she was so happy about it!  Miss Anna (Emma's teacher), Miss Marie (Emma's aide), and many of Emma's therapists put out a warm welcome to Julia.  Emma was smiling from ear to ear, too, while Julia toured her classroom, saw the equipment she uses, met her teachers and therapists and friends, and walked the school halls.  Julia often wonders about Emma's time away from her and always has a lot of questions about Emma's school.  It was so nice to be able to show her what Emma's day is like so she could put faces and places to my descriptions of Emma's daily routine.

As is typical, Emma rode the school bus home and Julia liked seeing Emma's bus and meeting her bus driver and driver's aide.  My parents were here, too, since I was at Julia's school for the conference.  Emma was delighted to see everyone waiting for her arrival!  This child loves people and having her grandparents and sister greet her at the bus likely put the biggest smile on her face.

When I got home I looked in her communication book so I could ask her about her day and saw this note from her speech language therapist:

  • "Emma did a great job using the DynaVox (AAC device) in the classroom to make song choices.  I have hand puppets for some of the songs that she likes to sing.  We sang 5 Green & Speckled Frogs on Tuesday with hand puppets (which she loved!).  She went right to that choice and used her hand switch to select it.  I looked in my bag and realized I forgot the frog hand puppets (oops!).  Then I told Emma "I don't have the frogs today, but I do have Twinkle, Twinkle and Old McDonald."  Before I could look up to help her make the choice, Emma used the DynaVox to say Twinkle, Twinkle!!! She is doing so well :-)"
Our big girl is going places (with her communication!).

Wow!  I have tears in my eyes writing this now.  This is only the 2nd time Emma has used the DynaVox ever and the first time in the classroom with all the kids in the room.  And Emma wanted to communicate!  She wanted to play the games.  She wanted to use the DynaVox to tell her SLP what song to sing.  And, the 5 Green & Speckled Frogs is the 6th choice out of 6.  Emma had to use the head switch 6 times to get to that choice and then use her hand to select it.  The DynaVox she uses is with switches, not eye gaze yet.  The fact that she has figured out how to use this system after only ever seeing it for 2 times give me so much hope for her expressive communication options.  Chris and I are 100% sure we made the right choice in moving - it's amazing how a different approach to communication can open our child's world.  

Tonight we will rest a bit easier knowing we are exactly where we are meant to be and that is not something we take for granted.

Tuesday, November 1, 2011

Halloween Adventures

What a fun halloween we had!  Julia dressed up as a bunny and Emma was Cinderella and then we headed out for some trick or treating fun.  This year there was snow on the ground - our first white halloween! - but much of it had melted and the weather was in the high 40s so it turned out to be a nice night for the children.

Our neighborhood is filled with children and all the kids on our block huddled up for a photo before heading out to trick or treat in our large group.  They were so excited running door to door for candy and mostly remembered their manners.  A handful of houses had haunted porches and the kids just loved it!  I thought Julia would be scared but she held her own in the group and had a ball.  Emma was thrilled to see all the children running around and not as interested in the candy gathering as last year.  I forgot to bring her iPad programmed with Trick or Treat (like we did last year) and I considered going back to get it but decided against it - with so much action, lights, and kids there was no way that Emma would even look at her iPad let alone use it to say Trick or Treat.

Our candy bags overflowed with all kids of goodies.  I think it must weigh 5 pounds.  Tonight we'll go through it and select some to keep and then donate the rest.

Happy Halloween!

Sunday, October 30, 2011

Seven Years

Seven years ago today was simply wonderful!  It was a Saturday morning and the air was crisp - exactly what you expect during Fall.  There was a slight drizzle in the air that morning but it was all clear by the afternoon.  The trees were full of color and there were lots of colorful leaves on the ground.  It was the perfect wedding day.

Me and Dad stop for a last minute comment before he walks me down the aisle.  
I woke up excited that I wasn't as sick at the previous night.  I was able to get up and walk around and I was so happy!  I called Chris that morning to see how he was doing and let him know that I was feeling a bit better.  I knew he was worried about me because I was very sick the night before.  Luckily the doctor had given me some great medicine to get me back on my feet and it did the trick.

We were saying that we couldn't believe we were actually married and laughed about it!
I remember our wedding day like it was yesterday and I'm stunned that seven years could pass so quickly.  My Dad made sure all the leaves that had fallen were swept off the Church steps for all our guests.  My Mom made sure our house was ready for guests to spend some time between our wedding and the reception.  I went with my family and friends and had my hair done and was surprised that there was so much extra time between my hair and make up and the time I had to leave for the church.  I didn't really know what to do with myself - I was anxious to see Chris and 2pm couldn't come fast enough for me.

The bubbles really made the day feel super festive!
That day we didn't know where our life together would take us.  What we did know is that it felt so right to be together.  That we were committed to meeting life head on together, for better or worse, for the rest of our lives.

And for the last seven years that is pretty much what we have done.  I couldn't have asked for a better partner in life.  Both of us truly believe that it was God that brought us together (and keeps us together!) and we feel blessed.

Thank you, Chris, for loving me so very much the last seven years.  I'm not sure what the future holds for us but I am excited to meet it head on together.

Thursday, October 27, 2011

Preschool - One month recap

The past month has gone by so quickly that it's hard for me to believe that Emma is wrapping up her first month in her preschool.  Emma attends school from 8:30am - 11:15am Monday through Friday and this is new for both of us.  We are not accustomed to being apart and I'm happy to say that we are both mostly adjusted to the change in our routine.  It requires an early rise time and neither of us are morning gals so I'm happy that Chris is around in the morning to make sure that we are up and about at the proper time.  Our routine is pretty streamlined at this point with:  time spent on the potty, drinking a breakfast smoothie, getting dressed and AFOs on, double checking to make sure her backpack is all set, and packing a snack and drink.  School is at the other end of our county so I drive Emma in and have the bus drop her home.

Emma settled into preschool the first week without any issues and that could be because I stayed with her most days.  She started to cry at drop-off during the second and part of the third week.  It was the screaming sobbing cry that makes me want to run back and take her home with me.  She knows when to pull out that cry and that it rips my heart to shreds.  And, no, she wasn't laughing and smiling a few minutes later.  I even had a couple of calls from her therapists letting me know how unhappy she was and hoping it wasn't them.  Sigh.  I - umm, I mean we - toughed out the 6 days of sobbing at drop off and they were replaced by smiles on day 7.  Oh Happy Day!!!!

Emma has a communication notebook that we send back and forth to school.  Each day the teacher adds a sheet of paper with the following sections:  play time, circle time, small groups, snack time, therapy, other, notes/comments.  In each section there is a set of PECS symbols and she circles the items they worked with in each section.  This is really nice because I can look at the symbols and go over Emma's day with her.  There is also a sheet that has the equipment along with an entry for the time spent in the equipment.  One day I requested information on what equipment she used and how long she was in it so I know how to plan the equipment we use the rest of the day.  The very next day this sheet was added to the communication notebook.  Fantastic!  I also asked about the potty and her snack and they added another sheet that updates me on them daily.  Additionally, on the days that Emma has therapy the therapist includes an update in the notebook so I know what they did in therapy that day.  I feel very well informed of what is happening at school and this makes it easier to part with my girl every day.

Emma has a lot of goals on her IEP.  They are not easy goals and I'm happy that the team set the bar pretty high.  I'm even happier to report that after only a month of school Emma is rising to the challenge.  My focus for Emma is communication.  Yes, we have goals for PT and OT, but I'm not as focused on them at this moment as I am on getting a reliable, usable mode of communication for Emma.  The team is spending a lot of time reinforcing communication in every interaction with Emma and this is working great.  Central to her communication is having her CIs fully operational so first thing each morning the hearing teacher checks her implants.  Emma is starting to say some sounds during the hearing check - this is a huge accomplishment because Emma usually reserves this for special occasions only.  There is no doubt in any of our minds that Emma is hearing well and using her hearing quite effectively and that her real challenge is expressive (not receptive) communication.

The speech language therapist (SLP) is working with Emma individually, in the classroom setting, and then with the team to instruct them on how to carry-over communication.  Historically, Emma is non-participatory in many of her speech sessions.  It's just very hard for her to communicate vocally or physically and there has to be a big payoff for her to participate.  This SLP gets it and is having success with Emma participating.  She wants to move towards a scanning communication system initially and then test out some eye gaze systems.

Many scanning systems only have a 2 second delay before they move to the next item.  We think this might not be long enough for Emma to hear it, process the information through her implants, and then get her motor plan together enough to hit the switch.  Two seconds really isn't that long when you take Emma's hearing and physical challenges into account.  So, her SLP tested out a head switch with Emma and she was able to use it quickly without much training.  Her idea is that Emma could use two switches for a scanning communication method - the head switch to go from item to item and a hand switch to select the item.  This would give Emma as much or little time as she needs to say what she wants.  I was skeptical at first because it is already hard to keep Emma's CIs on her head without adding a head switch but it seems to be working well and isn't knocking off her CIs.

This week the SLP entered the following information in her communication notebook:

  • Tuesday (her pull out for speech day):  Emma had a good day today!  We started working with 2 switches (on the computer) and she did great :-)  Each switch has a different function - example:  one switch adds one more block to the tower and the second switch knocks down the tower.  
  • Thursday (SLP pushes into the classroom day):  We used 2 switches again today in the classroom - much more distracted than when in my therapy room, but she still did well :-)  Lots of choice making with 2 pictures also.  
This Mommy is over the moon that Emma is not only participating in speech, but doing so in both a one-on-one and classroom setting!  The gains she has made in the last month are more than her entire first year of preschool at the old school.

I'm filled with hope for Emma and for us!  Our decision to move was good for so many reasons and I'm so happy that Emma is in a program that is not only meeting her needs but also providing academic challenges that Emma is meeting head on.  I'm looking forward to see what happens as the year unfolds.

Friday, October 21, 2011

Swim Lessons

The girls love swimming so when I found out about a gym near our new house that has a therapy pool we had to check it out.  Emma has a hard time regulating her body temperature which makes swimming during the non-summer months a challenge.  Even in a heated pool she turns purple pretty quickly - usually within 15 minutes and has to get out.

The gym is attached to a hospital and they use the therapy pool for some PT sessions and it's usually around 88 or 89 degrees, perfect swimming water for Emma.  It's also fairly shallow and ranges in depth from around 3 feet to 5 feet making it the perfect pool for Julia.  After our trial period, me and the girls joined.  We've gone several times and decided that Julia would benefit from private swim lessons since she is very close to swimming.  The aquatic team has an instructor that is trained and certified to teach swimming to children with disabilities and once we found out Julia was matched with that instructor for lessons we signed Emma up for one.

Julia is doing really well in the pool.  She can swim a long distance underwater, kick her legs appropriately and swim with a noodle in deeper water.  She is very lean, though, so her body wants to sink instead of float and Miss Tia is doing a great job of teaching her technique and floating.  Plus, she is very funny and Julia has a ball during her swim lessons.  According to Miss Tia, Julia is well on her way to being a swimmer.  Here is the best photo I have of Julia because she did a lot of underwater swimming the day I brought my camera.

Emma was signed up for one lesson, but we liked how it went so signed her up for the full 7 week session like Julia.  Miss Tia was completely comfortable with Emma in the water and quickly figured out her amazing ability to pay attention to everything going on around her and not so much to what is happening right in front of her.  Then she figured out a way to keep Emma's attention on her and follow a few instructions - no easy task considering Emma can't wear her CIs in the water and she has an even worse attention span when she can't hear!

The main focus of the early lessons will be on breath control.  Making sure that Emma knows to hold her breath if her head goes under the water and to try and get her to breath out.  Emma doesn't blow bubbles or blow outside of the pool, so I'm not sure about this goal but Miss Tia said Emma is trying and we'll see if she is successful.

She is also working with Emma pushing off her hands so she can learn that her body will move in one direction or the other based on her movements.  She even was able to get her arms all stretched out and then Emma would pull them to her body and she would move which I find amazing since I can't get that to happen!  Our focus is mostly for back swimming.  And Emma is either held the whole time or uses a floatation device - we have the Danmar swimming collar and use this for the last 5 or 10 minutes of the lesson.

This is not aquatic therapy, but rather swim lessons.  It's pretty fun, actually, to have Emma in her own swim lesson that isn't therapy but sort of is therapy at the same time if you know what I mean.  Miss Tia can't promise that she'll be able to get Emma swimming independently and I think that is more of a long term goal.  Right now keeping her head out of the water (neck control, Emma!) and knowing to hold her breath if her head goes under, along with working on trying to stop her from arching her back so much would make me really happy.  Emma has so much fun in the pool and really has shown an interest in wanting to move/swim but I need guidance on how to help her make this happen.  Miss Tia is doing a great job of showing me new things to try with Emma in the water and it's made swimming even more fun.

I'm so happy we were able to find a truly inclusive swim program that works for us and an instructor that seems to be a great match for both girls.  I'm looking forward to seeing how they are doing in the water at the end of the 7 week session.

Wednesday, October 19, 2011

Ask me a question

We've been working on communication with Emma for a very long time.  And to me, it seems even longer ;-)

Emma had been doing great with a Yes/No response on the iPad, but the iPad just isn't always available for a question.  And then we moved and we have lots of kids in the neighborhood that include Emma and they ask her questions and it's awkward for her to have me get in the way with an iPad for her to respond.  It totally ruins the moment and then Emma ignores the iPad and me because there are kids around.  So I decided to try a method that works well for another family that I know.  It's low tech, super easy, and everyone including the kids can use it without any help.

Let me tell you what we are doing.  Basically, whoever wants to talk to Emma can ask her a question and then you hold out your right hand with your palm open facing her and your left hand fisted facing her and ask her yes (shaking right hand) or no (shaking left hand).  Emma thinks about her response and then reaches out for the appropriate hand.  It didn't take much time to get her to be very accurate with this method.  And since we've been using this a few weeks now she knows which is Yes and No so we don't have to shake it anymore.  I'm hoping that eventually you won't even have to say Yes and No when giving her the hand signal but that could come in time.  For now I'm super excited that we have a method that Emma seems to want to use and that anyone can use with Emma.  It's amazing how many people talk to Emma and now I don't have to answer for her all the time - good for her and for me!

The key to this method is consistency.  Keeping the Yes and No always on the proper side.  Emma's speech therapist at school talked with me about maybe replacing the Yes No with a card on her tray because apparently some people working with Emma have a hard time remembering which hand is which.  I nixed her tray idea pretty quickly because Emma is very rarely in equipment with a tray at home, we want to use the same method regardless of where she is (school vs. home), and it's not easily implemented with kids.  The reality is that Emma should be interacting with everyone and it's especially important that her peers know a way to involve her in a discussion.  I also said that her aid should know Emma's Yes and No and be able to remind anyone that needs a reminder.  Her SLP agreed with me.

But our discussion had me thinking and so I offered to create a card to hang on her wheelchair and other equipment so everyone would easily know her Yes and No.  The card I made is at the top of this blog post.  It's a 5" x 4" laminated card, so large enough to see easily but not in your face large.  It complements the other card hanging on her wheelchair that introduces Emma to people.  It's amazing how many people read her introduction card and then come up to her and talk to her.  Thanks to Tara over at Endless Jubilee for the introduction card idea!

Emma's introduction card.  Might be time to update this with a more recent photo - my girl is growing up!

Tuesday, October 18, 2011

Potty Talk

Right around Emma's third birthday we started using the potty with her.  She seemed to get the hang of it pretty quickly and was really proud of herself when she went.  We tried to carry over the potty training at school but they weren't really good at putting her on the potty.  They didn't seem to want to do it and only after I asked them every....single....day about the potty did they put her on a couple of times.  Emma never did go on the potty at the school for them and I think it was mostly because the infrequency of it and the lack of a supportive potty and ample amount of time allotted to potty.  Needless to say, that made it pretty hard to potty train our little one.  Plus, it was really hard on my back and so we put the potty training on the back seat for a while.

This summer we took a long trip to Ireland and moved, putting potty training to the very bottom of my list of priorities.  Truthfully, it's much easier to just change Emma's diaper than figuring out all the intricacies of  potty training a non-verbal, non-mobile little girl.  Once we settled down in the house we figured it was time to start potty training again and started up again with our little wooden potty.  We also talked with her OT about ordering an adaptive one for our house.  Potty training was ON!

Emma at fountain in Love park.  Fountain is purple in support of ending domestic abuse.  She looks so grown up!
We set a schedule to sit Emma on the potty and decided to stick to it for a few weeks so Emma could get the rhythm of going on the potty and could start to anticipate the times she would get on the potty.  My idea is that if she knows there are certain times she will get to go, then she will start to hold it in anticipation of her next opportunity.  Right now she doesn't tell us when she has to go, but she does make sounds when she is all done and ready to come off the potty so that's at least a start.

Key to all of this potty training is carryover at school.  Emma really is becoming a big girl and she really wants to do big girl things and going on the potty really makes Emma proud.  I didn't want our second attempt to fail like the first and I was so happy that her school was completely on board.  The day Emma started school they set her up in a potty that gives her amazing support.  It was fitted and cleaned and available for her exclusive use on her second day at school.  The first time she used it, she went on the potty!  Horray for going at school!

We've been working on potty training for a couple of weeks now.  It's going ok.  Some days are better than others, but the last two days have been amazing with lots of dry diapers!  The biggest challenge I have is what to do when we are out in public?  Public restrooms are so not set up for us.  And from what I can tell there aren't any portable potties for kids like Emma.  I've asked around and no one has any great solutions.  Maybe there just isn't any good solution, but if anyone reading this has any ideas please let me know.  In the meantime I'll dig out our traveling fold-up potty seat we used for Julia and hold Emma on the potty.  I can already feel my back hurting thinking about it ;-) but Emma is so worth it.

Here is our current schedule of when we place Emma on the potty:

  • After waking up
  • When she arrives at school she has her hearing/CIs checked first thing, then off to the potty.  That is about 8:45am.  On days when she doesn't have school, we do ~30 minutes after her morning drink
  • Snack is at 10:30am so her next potty time is 11am.  
  • School ends at 11:15 and she arrives home around noon and I put her on the potty again once she gets home.  
  • After lunch but before nap - she doesn't usually go at this time so I might end up taking it out.  
  • After nap - she has been waking up dry and so this is a key time to put her on the potty!
  • Before dinner
  • Before Bath
  • Before Bed
Emma is using the Rifton Blue Wave Small at school and we are ordering the same one for our house.  She looks great in it, has show that she has no problem using it successfully, and it's nice to be consistent.  Plus, it has a couple of features that are nice like going directly over the toilet or using a pan, a tray to set her arms to keep herself upright (might not need to use all the straps), and wheels to move it around easily.  I have no idea how long it will take before we get it approved so we are using our wooden potty seat in the meantime.
My big girl getting on the school bus!
Her school also set-up a checklist that they include in her communication book everyday.  It has four columns on top:  Sat on Potty, Urinated on Potty, Urinated in Pull-up, Notes.  It has two columns on the side:  8:45am, 11am.  Her aid puts a check in the appropriate spots.  This morning she had a check at 8:45am sat on potty, 8:45am urinated on potty, and 11am sat on potty.  I love that I know what is happening with potty training at school.  I love that they are so responsive to my requests - I only asked once if they could let me know if she is "successful" on the potty and the very next day they started to include this checklist.  They also made a checklist for her equipment and time in each so I know what equipment is used during the day and can make decisions for what to use at home.

All smiles when she arrives home from school!
I'm hopeful that this time Emma will be fully potty trained.  I'm even hopeful that she'll have to add princess underwear to her Christmas list.  I know pull-ups will continue in our future - especially when an accessible bathroom isn't viable and for bedtime - but I am so very proud of how Emma is doing and will follow her lead to when the timing is right to take the leap forward to underwear!