Monday, April 30, 2012

Irish Dance Competition

Julia has been in Irish dance classes since the fall and just had her first Irish dance competition - known as a feis - this past weekend.  She is a young beginner so she was in the first group to compete at 8:30am.  Lucky for us the feis was held about 1.5 miles from our house so our morning routine was similar to a school morning.

Julia loves a stage!  She loves to perform and since we arrived early she decided to practice on the "stage" - a roped off portion of the stadium hall - where she was dancing first.  The more she practiced the more she seemed to only want to dance her jig.  We kept trying to have her leave the stage and relax a bit before the competition started but she didn't want to leave the stage area.  It was actually quite funny to see her so into it all.

The reel was her first competition.  I reminded her a few times that she was doing a reel and only focus on the reel before she went on stage.  When her time came to dance she made up a couple of steps.  It seemed like she was mostly doing a jig but was mostly making the steps up as she went along.  She kept perfect time to the music and her footwork was really nice but I have no idea what dance she did!  When I asked her what happened she told me she was nervous out there and forgot what she was supposed to do. Even still she placed 4th in the dance and received a medal for it.  She is thrilled with her win!

Waiting for her group to go on stage.  She seems a bit bored but she told me afterwards that she was nervous.
Waiting for her turn to dance and smiling nicely.  Some children were crying and didn't want to dance but most of the little ones didn't mind it at all.

Emma LOVED watching all the dancers and cheering for Julia!
Once she finished her reel she had about 20 minutes before her jig, plenty of time for her nervous jitters to work their way out of her system.  Her jig went perfectly and she seemed much more at ease!

Overall, Julia's first feis was a huge success, she is very proud of her 4th place medal, and we were so happy to be there to cheer her on!

Thursday, April 26, 2012

Driving Lessons - 4 year old style!

Navigating the world of power mobility for Emma is a bit of a puzzle to me.  I'm not sure why it feels so complicated for us since it seems like it comes together for other people much easier, but we are plowing forward with our complicated journey of power mobility.

Our main challenges:
  • Emma's school PT is not skilled in power mobility so we are working on it during sessions at a satellite campus for the local children's hospital.
  • Emma is lucky to have a powerchair to use thanks to a generous friend who passed it on to us.  It fits her great but we are looking to explore alternative driving options outside of the joystick.  Since Emma didn't purchase the chair there isn't any medical company really supporting this effort.
  • Her private PT asked the main campus hospital and the durable medical equipment (DME) company to ask about switches for the powerchair.  The local hospital can help us purchase some but don't have any to loan out.  We would like to test out options to see what we should purchase.  The DME company is not getting back to her on it.  I asked the DME and it seems they likely don't have loaner items for us to test out before we order.  So Emma is still using the joystick while we figure out a better way for her to learn to drive.
  • We don't have an easy way to transport the powerchair, so for now we are leaving it at the satellite campus in a special closet and Emma uses it during her 2 sessions/week.  That is working ok for now but we eventually plan to move it home once we get some switches to help her drive.
When Emma first stared learning to drive the powerchair she didn't hold onto the joystick for long periods and when she did hold on she went around in circles because her arm tone kicked in and pulled her arm toward her body (see this post for an early video of Emma in her powerchair).  Emma loved going around in circles!  But that will not give her independent mobility so we removed the joystick from the chair arm, adjusted one driving program to exclude reverse, and mounted it with velcro to a tray and placed it in the center of Emma's lap.  

This has worked out well.  She is now able to hold onto the joystick for extended periods while going relatively straight.  At first she would only go for about 10 feet but now she can drive it for about 200 feet.  Quite an accomplishment!  Here are some videos of her driving her chair down a very long hallway last week.  

Things we'd like to try to help Emma drive and steer the chair better:
  1. A head switch behind her head that will allow her to move forward when pushed and will stop when she brings her head forward.  Her head control has really improved with her new manual wheelchair and we both think that she has enough control to use her head in this fashion.  AWESOME!
  2. A switch for left and a switch for right that she can activate with her hand.  That way we will start with forward, left, and right to teach her how to drive.  As she gets better we could explore more freedom of motion - perhaps with a joystick that includes a guide or a different handle for Emma to get a better fit for her motor skills.
So how are we going to make this happen?  One thing I'm going to explore is making an appointment at the wheelchair clinic Emma uses to try out the different options.  The wheelchair person there knows Emma, has some switches on powerchairs available, and I totally trust her recommendations.  Ideally, we'll get Emma in the clinic for a few hours to test out the options and then move forward on either borrowing or buying the best fit! 

The other thing that is happening is I plan to take Emma to the Abilities Expo next week and talk with various switch/power mobility vendors to see what we can do.  Having so many vendors under one roof will be the ideal opportunity to help us move forward on getting Emma what she needs to continue on her journey to power mobility.  

If anyone has any suggestions that might help us, please comment below!  Thanks!

Saturday, April 21, 2012

Detailed Communication Update

Emma has had more than her fair share of evaluations over the last four years.  She has had overall evaluations and individual evaluations for speech, PT, OT, hearing, and feeding.  These lead to areas for improvement, goals, progress to goals, etc.  It's quite tiring as a parent and my strategy for dealing with these is to not really focus on them and instead keep my focus on Emma our precious beautiful child.

We have a very typical family life but lately I've realized that each year I tended to focus on a key area of development for Emma.  Last year it was on her movement because Emma so desperately wanted to move.    She was quite successful and learned to use her crawler to crawl, her gait trainer to walk, and started working on driving a power wheelchair.  This year we continue to build on those skills while we focus on her communication.  Because I so desperately want to hear her "voice" - whether it's communication cards, iPad apps, an eye gaze communication device or her sounds - and Emma is showing more of an interest in getting her voice.

Her team at school is amazing to work with and I am so excited to have them help us navigate the world of communication!  Earlier this school year they used a card communication system, a Dynavox with a head switch, a Dynavox with two switches, and a test of the Tobii Eye Gaze system.  They also started testing the ECO2 from PRC company but it was a short trial because it fell to the ground and broke on the second day.  Let me say that the mount used for the trial will not be the one we will purchase should we choose that device!  It was sent out for repair and our hope is that it will be at the school next week for the test period.  Once we have given Emma a chance to learn and use the ECO2 we will then choose which device to order and then go through the appropriate (and likely long) process of getting insurance to purchase the device.  

We are not only focusing on high-tech options, though.  The main reason is that it is much easier to have a blend of high tech/low tech options while Emma is trialing out devices since she isn't overly familiar with the screens and how to navigate them, custom screens are not all programmed for her activities, and we don't want her to get fatigued too quickly and make communicating harder for her.  So we have implemented a lot of low tech communications that are used throughout her day in addition to the high tech that is used.

We still have the hand signal Yes/No that we use all the time and her team is asking her many times throughout the day to indicate a Yes/No response.  For example, if Emma is on the swings they will push her a bit and then stop and ask her if she wants them to push her some more and Emma will need to indicate Yes/No.  There is also a communication book that Emma has at school with laminated pictures (PECS).  This is used everyday - for example, there is a page with arts and crafts items and during arts and crafts activitites Emma will need to select the tool she wants to use to make the craft such as crayon, scissors, glue, etc.  This helps Emma make a choice, indicate her preference in participation, and helps us reinforce vocabulary.  To facilitate communication with all the children at snack time her SLP added photos of her classmates and is using them to discuss what her classmates are eating and it seems Emma is happy to "chat" at snack.  Colors are also a big focus of her class right now and she has color PECS cards that are used very frequently in circle time, craft time, and individual therapy sessions.  

The huge take-away from all of this is that Emma is taking a more active role in participating in classroom activities.  While many communication opportunities have been available to her all year, in the beginning of the year I would see reports that Emma chose in 1 out of 10 opportunities in the classroom activities.  It would be slightly better in one-on-one sessions in a pull out room.  However, recent conversations have been so exciting because Emma is choosing more than 80% of the time and most times she makes a choice 100% of the time!  This is BIG!  This is REALLY BIG!  

Emma's entire team believes that she is one smart cookie and now we are on a path to really get to know more about her.  Her making choices will allow us to get a better picture of what words she knows, and where she needs a bit more help.  It gives her more control over her activities, her environment, her life.  It is so wonderful to see this change in Emma.  I hope her desire to gain expressive language communication continues to blossom and grow.  

I firmly believe that communication opens a lot of doors for people regardless of their physical abilities and so want this for my little girl.  Thank you to everyone for all the prayers - they are working.  I also want to ask if you would be so kind as to continue to pray for Emma's communication.  We are truly blessed!

Wednesday, April 18, 2012

Wordless Wednesday

Friday, April 13, 2012


My photography class just wrapped up.  I learned a lot from this class.  I highly recommend it if anyone is looking to learn how to use their DSLR camera better.  I'm not really a read the manual and you'll figure it out type of person.  I like asking questions on what I read and the forum in the class allowed for ample opportunity to ask questions without feeling like the questions were too naive.

I now have a short list of items I'd like to add to my camera equipment...which means I'll have to save up my money because none of it is cheap.  The good thing is I only really want one lens and then I'll feel like I have pretty much everything I need to take the photos I want.  I'll have to get on that yard sale I keep talking about to raise the money for the lens.  Maybe this will be just what I need to find the time to pull the yard sale together!

I also learned that I would not be great at taking a degree program online.  It's really quite hard to learn that way - keeping track of the conversations on the forum, holding myself accountable for finishing the reading and assignments on time.  I liked it for a hobby class, but for a degree class it is not my preferred mode of learning.  Good to know but not a big deal since I do not plan on going back to school!

Here are two photos I took of Chris while working on an assignment.  He was a really good sport to pose for me since he is not too fond of the camera.  Lucky for me it didn't take too long to get some nice photos.

Thank you, Chris, for all your support in pursuing my photography passion.  This is one of the many, many reasons I'm so happy you chose me.

Thursday, April 12, 2012

Hopeful Parents

My monthly post is up over at Hopeful Parents.  Click here to view it.

Tuesday, April 10, 2012

Playground Fun

Our family believes in taking full advantage of our local park system.  Although we are still finding our way around the parks in our new area we have a few that are our go to places for a guaranteed good time.

Smith Playground is a family favorite and an amazing playground for children of all abilities.  It is a playground that both girls can have a lot of fun at together.  And it provides lots of people watching opportunities for the busy-body in our family (ahem....Emma!).

There is a really great swing that is a saucer and the girls can lay down or sit on it together while I push it.  I really love this swing and it seems that all the children in the park do, too, since there is often a line up of children waiting a turn.  I don't know of any other local parks in our area with a saucer swing so we are heavy users of it when we do visit Smith Playground.

There is also a new age see saw where the girls can sit next to each other while I help to bounce it up and down along with spinning teacups and lots of imagination/play structures in the Tot Lot.  One thing you can have fun in while still in the wheelchair is a swaying structure.  I usually pretend that I'm surfing and Emma thinks it's funny.  It also helps that there is a great view of the spinning round thing from her location.

Julia on the spinning round thing
There is a path all around the playground to make it easy to push a wheelchair.  There are some large hills, though, so you better be holding on to the handle when going down them unless your child is a thrill seeker like Emma and loves a bit of freefall wheeling....just kidding, Chris!

My Grandmom loved to sit on her porch and look out the window and see what everyone on her street was up to and Emma is so much like her!  I usually take advantage of that characteristic and put her on regular swings on her belly to work on strengthening her neck muscles.  There is NO WAY she is about to keep her face looking down at the ground and gets some amazing neck workout by lifting it up to see all the playground action.

The playground also has an enclosed wooden slide.  It's the kind that you use a burlap bag to slide down and produces lots and lots of giggles.  It's quite a hit with the kids and I have to admit I enjoy going down it as well.  There is a really nice ramp that leads to almost the top of the slide, but it's cumbersome since you don't slide down with the wheelchair and it's a long way back to the top if you are carrying your child.  I mentioned this on the playground's Facebook page and found out that there is a separate entrance for wheelchair users!  How amazing is that!  I can't wait to try it out at our next visit!  

Monday, April 9, 2012

Keeping it Real

I was watching an episode of Everybody Loves Raymond the other day and found myself wondering whatever happened to that brand of family on tv.  You know - the kind with the house where sentimental keepsakes and little kid artwork are found in just about every room?  It seems lately all I see on tv are extra large houses, decorated very trendy and no clutter anywhere. 

Before we moved we sold or gave away A SERIOUS amount of stuff.  We have been in this house for about 8 months now and I've managed to accumulate a large pile of more things to sell or give away.  I'm keeping them all in a pile on our basement floor and I plan on getting them tagged or on Craigslist in dribs and drabs.  We also have some unopened boxes from the move.  I think they are due to be added to the pile.  

It feels great to declutter and repurpose items rather than just allowing the stuff to stack up for "someday when I get time to look through it...."  Maybe there really is something to the idea of spring cleaning after all.  Just don't expect me to part with my sentimental keepsakes or children's artwork all over the house.  To me that's what makes a house a home :-)

Sunday, April 8, 2012

Happy Easter!

Easter is one of my favorite holidays.  And it's not because of the candy - although everyone in our house does enjoy the treats the Easter Bunny leaves us each year.

We've been celebrating Easter the traditional way - Church, dyeing eggs, having egg hunts, eating candy.  Wishing everyone a wonderful Easter Season!