Disney Vacation

It's been a while since my last post and that's partly because we went away on a family vacation (YEAH!) and partly because coming home to reality took quite a bit of adjustment and I figured I'd wait until the adjustment was complete before writing a bit.

We took a family trip to Orlando to enjoy some sun, swimming, Walt Disney World magic, and participate in the Cochlear Celebration 2011 (gather of people with the same implants Emma uses to hear).  I can sum up our vacation in one word:  Magical.  

Let me just say that visiting Disneyworld with little girls aged 5 and 3 really is AMAZING!  There is the magic that unfolds when they meet their favorite princesses and characters and the joy they radiate with all the rides, shows and junk food!  The highlight of the week was when ate lunch with the Princesses and the girls participated in a princess parade, had their photo taken with Belle, and had all the princesses autograph their book.  Of course, the girls wore their Cinderella Wedding Gown costumes for the lunch, so everyone kept asking them if Cinderella was their favorite but Julia told everyone she loved all the princesses!  We bought an autograph book just before the lunch and it was a huge hit.  Julia kept going through the autograph book each day and talked about meeting all the princesses and the characters.  Other highlights included our Safari ride and the Lion King show in the Animal Kingdom and the Dreams Come True show and fireworks show in Magic Kingdom.

We had been told about how accessible Disney is for guests with disabilities, but it still humbled me how accommodating they were.  For the first time ever I felt like accessibility was a priority instead of an afterthought and it really made me - as a parent of a child with a disability - feel the Disney magic.  It was just so amazing not to have to worry about accessibility, long waits, appropriate food options, etc.  And, the characters spent extra quality time with Emma and we were really able to see her come alive with the characters because of the extra time - Emma was able to get her muscles moving a bit more to reach out and touch them, open her mouth to try and talk with them, have enough time to really look them up and down and not startle when they reached out to her.  Emma had a particularly moving encounter with Marie from the Aristocats where Marie was scheduled to go on break but met with Julia and Emma before the break and spent about 10 minutes with Emma and how she responded to Marie really touched me and Chris and Marie's handler.  I wish I had a video of it, but I didn't think of taking one in the moment.  

The magic continued outside of Disney.  We stayed in a 2 bedroom condo about 5 minutes outside of the Disney resorts.  The property had 7 different pools, a kids activity center and a 30' inflatable water slide.  Couple all this with afternoon temperatures in the 80s, happy hour drink specials, and comfy pool chairs and you'll know why we didn't feel the need to head over to Disney each day.  The girls even loved bath time that included a whirlpool tub in the master bedroom!  

The reason for our trip was to attend the Cochlear Celebration and we did participate in several of the events.  There was the ice cream welcome social where we met a few people and enjoyed the sand and hammocks at the Coronado Springs hotel where the celebration was held.  I attended the Keynote session where there was a very inspiring speech given my Tom Sullivan (blind since birth, he graduated from Harvard, had reoccurring acting roles on TV, participates in triathlons, etc.).  We also attended the Expo where there were various centers/tables set up to learn more about the equipment and accessories.  We found the Expo helpful, but a bit overwhelming due to the large number of attendees and the lines at some of the tables.  The final event we attended was the Celebration Party at Hollywood Studios that included a buffet dinner, entertainment, face painting, fireworks show, after-hours access to a couple of rides and a street dance party.  We all had a blast at the party but ended up leaving a bit before it was over because Julia was beyond tired.  Emma, however, was buzzing with energy as she was in her element of lots of people and loads of dancing, but she took the early departure in stride.

It was a long time since we had a family vacation that lasted more than a couple of days and we really needed this time away to spend together as a family.  During our long drive home from Orlando, Chris and I started brainstorming vacation spots we want to visit in the future and we came up with some really great places.  Here's to hoping our future holds more magical vacation memories.  

Winter Snow

We are having a white winter this year.  Snow is definitely more welcome than ice, but we've had more than our typical share of both.  Chris talked about taking Julia skiing this year but finding the time has been a bit elusive.

Last year we took the girls sledding and it was a bit of a disaster.  The hill was too crowded, older people kept knocking the girls over, my camera broke from the cold, Julia was crying and wouldn't walk up the hill.  We didn't last too long.  This year we decided to give it another go - at a different hill.  And we all had a ball!

 

This year Julia seemed like a seasoned pro.  She walked up the hill each time without any complaints.  She slid down all by herself and didn't even flinch when she went airborne and wound up doing a forward somersault (I wish I caught this on tape!).  In fact, she laughed about it will all of us.....after we verified she wasn't hurt.  Emma loved sledding and had no problems at all when her sled kept going off the track and she would get snow in her face.  She managed to kick her snow boots off incessantly making us think we'll need to bring a roll of duct tape next time to keep them attached to her snow suit.  She giggled like crazy when it was her time to slide down the hill.  Chris was her companion for most of the rides but we decided to give her a few runs by herself towards the end of the afternoon sledding adventure.  She LOVED going down the hill by herself.  And just so you don't think we are totally crazy for letting her slide independently, I should inform you that one parent stayed at the top of the hill while the other was at the bottom ready and waiting for her.  All in all we had a wonderful afternoon and are looking forward to another sledding adventure.

Just Because

Our dog is loyal, loving and so sweet.  She is Emma's best buddy and our protector.  Julia thought it would be good to show Finnegan how much we love her by dressing her up in a Sleeping Beauty princess costume.  Finnegan let us dress her even though it was clearly not made for a dog!  She wore it for a bit, then she went into the kitchen and waited for a treat.  I LOVE our dog!  She looked pretty cute in the costume.  Like this:

Emma spent her first year and a half of life hating her car seat.  She screamed for as long as she was in the seat - 15 minutes or 4 hours.  Seriously - she never let up her screaming crying as long as she was in her seat (and it didn't matter what make or model of car seat we used!).  It got to the point that I wouldn't go on any long trips if I had to bring her in the car with me because I couldn't take the screaming for the extended time.  We went on a trip to Florida with my parents when Emma was 2 months old and they shared our rental car with us for a few days.  They were supposed to share it with us for the 2 week trip, but decided they needed to rent their own car because they couldn't take Emma's crying.  I think I would have done the same thing if I was them.  So, I'm so thankful that these days Emma is often smiling in her car seat.  Like this:

Julia is now five.  She is amazing.  I have loved every minute of the last five years with her and look forward to many, many more.  For her birthday she wanted to go bowling so that is what we did.  Of course she wore her party dress.  She was the prettiest little girl in the entire bowling alley.  And she gets such joy when she knocks down the pins.  Like this:

Life is good!

Adapted Computer Games

I am always looking for ways to incorporate technology options into Emma's entertainment and skill building (eye hand coordination, cause and effect, timing, etc.).  I have an older iBook that runs great with the internet and doesn't have any must-keep files on the hard drive so I've designated that as the girls' computer. 

Julia loves to play on the pbskids.org website and we have used the helpkidzlearn website with both Julia and Emma.  We also have a lot of files on powerpoint that move forward with a click of a switch but they don't seem to keep Emma's attention for too long.  Recently, Emma's teacher told me about the hiyah.net website and we are so happy that she did!  If you go to the website and select the Play Online tab at the top it brings you to a screen with a lot of different options.  We've only just started to explore all the options on this site so I can't speak for too many of the options, but I will say that we always wind up on Songs and Stories.  Clicking the Songs and Stories tab brings you to a screen of favorite songs - The Wheels on the Bus, Old McDonald and This is the Way.  Emma LOVES playing with these songs and you can open each of them in their own window so the song/game fills the screen.

We use the Don Johnson Switch Interface Pro to connect our switch to the laptop.  The school district had one available for Emma's use at home so we didn't have to buy one.  If you are interested in switch adapting your computer you might want to see if your school has one to lend out or if your state's assistive technology lending library has one available for you to "try it before you buy it."  We tried a couple fancier interfaces, but like this one the best.  

The really nice thing about the songs on this site is that there are so many photos to keep the child's attention.  For each line of the song there is a photo and to continue hearing the song the child needs to push the switch to get to the next line of the song along with a new photo.  This keeps Emma's interest up and she played the songs for about 40 minutes the other day with minimal assistance from me.  Ok, I'll come clean and admit that I hovered a bit while she was playing but she pretty much told me she wanted to do it herself.  She is really asserting her independence these days and is trying to do so many things herself.  Since there are so few things that Emma can actually do herself I was so happy to find a site that keeps her interest and has games that she can actually do all by herself!  That alone has me giving the hiyah.net site rave reviews.

For computer games I usually position Emma in her stander.  It is the perfect height for her to see the computer screen on the table and has a surface to position her switch.  It's also a way for me to sneak in some work on strengthening her neck without her realizing it.  

If you try out the website, let me know what you think.  And, if you have any other favorite websites that work with switches I'd love to hear about them - just leave me a comment or send me an email.  Thanks!

Emma loves a good hand washing

I took this video of Emma and thought it was too cute to keep to myself!

One of the things Emma misses out on at home is leaning into the sink and washing her hands by herself and making a mess with all the water.  I think all kids love to make a mess at the water in the sink.  It's almost like a rite of passage for little ones.  Emma has shown me time and again with her giggles and happy feet that she loves to play in the sink and wants to experience this right of passage through toddlerhood.

Since our house is not set up to easily have Emma wash her own hands (i.e., none of our sinks are roll unders!) I usually wind up wetting a washcloth and using it to wash her hands.  It's not that I couldn't put her hands under the sink to wash them more than I do, it's just that there are a million things like this I could do each day but my back can't accommodate them all.  

So, whenever we are out and about I always look for the handicapped sinks to let Emma wash her hands.  This occurs on our weekly visits to the hospital, trips to the bathroom at church, and many museums.  There is one particular museum that has the best set-up for Emma's hand washing and it is the local Children's Museum.  And while you will not find it on their brochure or website the family bathroom stalls with the roll-under sink is Emma's favorite exhibit.  It is there that I shot this video.

One thing I want to point out is how well Emma is listening and following directions over the noise of the water.  This video is soooo cool to me because it shows how good Emma's receptive language is getting with her cochlear implants!  She might not be saying much, but she is certainly taking in all the language we throw at her.  And she looks so grown up washing her own hands.  Thank you, Emma, for sharing your hand-washing joy with me and reminding me to celebrate the little things in life.