AAC Update: Emma's progress with the Eco2

This summer we are focusing on Emma's communication.  This is important to me since she will be starting Kindergarten in the Fall at a new school with all new teachers and therapists.  The one thing that is making me rest easier about this transition is that her fantastic one-on-one aide will stay with her! I can't imagine how anxious both me and Emma would be if the school decided to use a different aide...

Anyway, in keeping with a communication focus we added in some Speech therapy sessions with the AAC specialist at Emma's hospital.  We've had 4 sessions so far and I've had quite a few A-Ha moments.  These sessions are as important to train me on the device as they are for getting Emma to become a more proficient user of her "voice".  The SLP picked up on Emma's social focus right away and decided that we should encourage her to use the device for social situations.  We decided to show (instead of hide) the "talk" core word.  And in the activity row I programed in things that Emma might want to talk with others about.  To start we are programming in 2 different topics with 3 buttons each.  The idea is to eventually program in some "Pages" so she has a lot of choices about conversations with others.  This, however, is the first step towards that goal.

For example:  Emma lost 3 different teeth recently.  That is something most children want to talk about so I programmed in the following activity row buttons.

• I lost my tooth.
• I put it under my pillow.
• The tooth fairy took my tooth and gave me some money.

The idea is to change these frequently so she can start conversations with people.  Another example was something I programmed in after our vacation.  She was able to tell her friends and team at school what she did on vacation without me writing it in her communication notebook.  The following was programmed in three different buttons in the activity row of "talk".  They were programmed after skipping a space between her tooth fairy talk and the vacation talk.

• I went to the beach for vacation.
• I swam in the ocean and the water was warm.
• I went on the boardwalk and rode in a lot of rides.  I like the rides the best.

I love how adding in the "talk" section has opened her world to initiating and participating in conversation rather than focusing on her wants/needs with her core vocabulary.  It took a while for her to get this change in the way she can use her talker but I think it's starting to click.  She selects that talk button frequently and has used all 3 phrases for her topics often.  At first she only used one but now she is up to selecting all three.

I want to incorporate other fun ways for Emma to use her talker so I brought her favorite book of the moment - We're going on a bear hunt - to a Speech session for ideas on how to incorporate it into her talker so she can read along with me.  Since there are so many repeated sentences in this book we decided to program in along the top row with a space in between each phrase the phrases as follows:

• We're going on a bear hunt.  We're going to catch a big one.
• What a beautiful day.  We're not scared.
• We can't go over it.
• We can't go under it.

We added in the core area the fun words:  Swishy Swashy, Stumble Trip, etc.  and we used Julia's voice recorded saying those fun words.  Emma really likes reading the book with us and amazed me with how she intuitively knew how to use this Bear Hunt page.  I teared up because she was so into reading the book and knew exactly what to say and when to say it.  We did turn taking and where I would say the lines that weren't programmed into the device such as Oh no a River, We've got to go through it, etc.  I wish I had a video of her doing that but she gets so distracted when I take a video she won't do anything on camera.

Another recent change is Emma prefers to use her hands to access the talker rather than her eye gaze.  This is both harder and easier for her.  Easier in that it is quicker to make word selections, harder in that her hands don't work so well and she needs some help.  She has demonstrated that she is very accurate with her hand use to both me and her SLP at the hospital.  He determined this by having Emma use his hand to stabilize her arm rather than my hand.  When he gave her a bit too much "assistance" with her arm she yelled at him in her manner and then took over.  It's funny - she doesn't want anyone putting words in her mouth!  He is very seasoned in AAC (actually, he has worked exclusively on AAC for many years) so his progress notes will be particularly helpful in her upcoming IEP meeting when we set new goals for her.  When setting the goals higher than expected based on her recent performance it generally goes over better coming from a professional than me saying it as her Mom.

School is also reporting that Emma is looking to use her hands over her eyes for the talker.  They are reporting that she is selecting appropriate words when using her hands for the activity they are doing.

I took a couple of videos this morning before school.  Here is Emma using her talker inside when she tells me how she feels, talks about what we did last night and then tells me she wants to go outside.



I'm excited that she told me so many things using her hands (which is quite new for her) while clearly not in a great sitting position  - it was a spurt of the moment conversation that she started that prompted me to get my camera out to take a video and continue our conversation.  I had planned on putting her in her wheelchair with the talker on her mount to chat but she had other ideas so I went with it.

Emma's Birthday Video!

Emma just celebrated her birthday.  She did it in style with a pajama party with a few of her friends.  She smiled the entire party and enjoyed every minute of it.  Julia proclaimed that it was so much fun she wants a party just like Emma's.  Now, that's a party!

I try and do a birthday video each year for the girls made up of photos from the year.  They love looking at them all year and I do, too.  It's a great way to capture what happened that year and I hope will be a treasured keepsake for them as they grow older.  This year I was late getting Emma's video completed.  I've been busy ;-)  Between all Emma's days off from school and trying to fit in a bit of work I didn't have extra time to create her video until this weekend.

I always love when the videos come together.  Each year I'm amazed at how much the girls grow and all the wonderful experiences they enjoy.  Having the videos really make me feel good and not just because the girls LOVE to watch them over and over and over again.  They make me feel like our girls are living a wonderful life.  Like their lives are full of love, joy and real life experiences - which is exactly the way I want them to experience childhood.

I'm especially proud that for Emma's videos I don't see disability.  I see ability.  I see life.  I see vitality.  I see joy.  It is not designed like this for her annual video - I am not editing out the *disability* experiences.  You'll see the many pieces of equipment Emma uses to participate more fully in life.  I take photos all year long and when I look at them I don't see Emma as disabled.  I see a typical little girl that just happens to need a bit of help to get around.  I see a child who gets out and about more than a lot of other children.  I see a little girl who draws people to her.  I see a little girl who lives life with wild abandon.  And it makes me want to be more like Emma.  To enjoy each day more fully.

Emma, you inspire me everyday.  Thank you for giving me the honor of being your Mommy.  Happy Birthday!

First Grade

Dear Julia,

As you start first grade your Daddy and I wanted to take a moment to talk with you and let you know how special you are to us.  We are so blessed to have you as part of our family!  I often refer to you as my sweet, sweet Julia because you are as nice and caring as it gets.  But you are so much more than a sweet little girl.

You are strong.  You do not like mean people and your feelings are easily hurt when people are mean.  You do not hesitate to stick up or yourself or for others that you feel are being mistreated.  This makes me so proud.

You are a leader.  People look to you on how to handle situations yet you have a quiet peace about you and do not need to be the center of attention.  But you don't mind if you are the center of attention either.  This makes you a great leader.

You contribute a lot to our family.   You help make the house run a bit better by cleaning your room, making your bed, and cleaning up your toys all without ever being asked.  I'm not sure how or why you started to do these things but I sure am glad that you do them!  Sometimes you like to surprise Mommy and go out of your way to make Emma's and Mommy's beds when all your work is done.  It is always a wonderful surprise and always makes me smile.

You are funny.  There are so many little things you do throughout the day that makes me laugh.  All these little things and silly faces really make my day brighter.  Thank you for sharing your silly side with us.

You are serious.  Sometimes so very serious.  This will serve you well as you navigate through life and I'm so glad you have such a funny, silly side that balances this out.

You are a natural born traveller.  You make yourself at home in planes, trains, buses, hotels, foreign cities and towns and roll with all the "things" that come with travel much better than most adults I know.  You have a bit of wanderlust that I think you got from your Mommy and we know that one day you will want to venture off on your own.  We will support you when that happens.

We continue to be amazed at how each year you develop and mature way beyond our expectations.  We have no doubt that this year will be any different.  We know you will learn new things, make new friends, and have fun-filled adventures.  And we look forward to supporting you every step of the way.

Love, 

Mommy

Here is what you had to say on your 1st day of 1st grade.  You wanted me to take a video and it was such a great idea I think we'll have to do this every year!  Maybe we'll add this to our back to school traditions along with our traditional Mommy/Daughter date night before school starts.

Best Sister Ever

Julia decided to take some videos with my phone today.  We were at Emma's horseback riding program and Emma was sitting up amazingly well on the horse - actually it was the best I have ever seen her sit up!  So we took some video.

Afterwards Julia took my phone and made this video.  I wasn't aware of what she was doing since I was working on buckling in Emma's legs - which could be considered an Olympic sport - and only caught bits and pieces of it so when I watched the video it touched me deeply.  I'm so glad my girls have each other.  What wonderful sisters they are, indeed!




(Note:  Once the video stopped I fixed Emma's shirt.  We are not encouraging showing off her belly!)

Emma walking and playing ball

Emma has been working on walking at school in a Rifton Pacer gait trainer.  Her PT really thinks that Emma will take off on walking once she gets the hang of it - if she is motivated.  The common theme with Emma is that she does what she wants when she wants to - my Emma, she's not really a people pleaser like Julia!  She is motivated by silliness, roughhousing, flying through the air, slides and playing ball.  I know her PT has figured her out by now because she mentioned at her recent IEP meeting that Emma isn't the delicate flower she originally thought when she met her.  No one that knows Emma well would call her a delicate flower!

To help with her walking goal at school I've been giving Emma more time in her KidWalk gait trainer at home.  When used "as is" she tends to get herself "stuck" in it with her legs forward and then she doesn't know how or isn't able to pull her legs back to propel herself forward again.  To combat this, I've started tying a scarf around her thigh to the back of the KidWalk to prevent her legs from going all the way forward.  This is working really well and letting Emma walk around more without me helping move the walker from the back.  It's also making it easier to give her more time in the gait trainer for exploration because she can do things like walk around the kitchen and check out things while I'm cooking and I can help her when she gets stuck in a corner of bumps into a cabinet but I don't have to stop everything I'm doing to help her walk.

Today we were playing ball in the kitchen.  I had an empty box for her to toss a small ball into and she LOVED this game.  We did it different ways - her holding the ball and walking, walking to the ball, kicking the ball to the box, etc.  Here is a short video I took of her walking in the KidWalk and having fun.  You'll notice that she is able to walk without me holding the back of the walker to assist and that she has the scarf tied around her left leg.  Emma really is making a lot of progress in so many areas and I sometimes forget to toot her horn.

So here is me tooting the Emma horn - toot toot!  Enjoy!

Happy Birthday, Julia!

Dear Julia,

Today you are six!  Mommy and Daddy can't believe how quickly the time is passing.  It is such a blessing to have you in our life and we thank God everyday that He brought you to us!

This year has been filled with lots of fun and adventure!  Much of it is captured in this slideshow video.  The songs are so YOU (and you requested I use the song Oh Happy Day for this video!) and shows even more what a special soul you have.  We look forward to helping make your 6th year just as special!

Happy Birthday, Julia!

Love,
Mommy and Daddy

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 ;-)

Birthday Fun!

Sweet, sweet Emma, it's so hard to believe that you could be 4!  It's true - today is your birthday and we are going to celebrate it in true Emma style with lots of fun and laughter. You bring so much joy to our lives but it is your ever present smile, your wild and adventurous side, and ready laugh that really brightens our life.

This year was filled with firsts.  It included crawling on a crawler, commando crawling on the floor, eating small amounts of table food including your favorite PB&J on crackers, walking in your gait trainer, trips to DisneyWorld and Ireland, a private tour of downtown Philadelphia on the DirectTV blimp, meeting one of the Phillies pitchers, and riding your very own bike.  You certainly are leading an extraordinary life and we are so glad you are bringing the rest of the family along for the ride.

We love you so much!  Happy Birthday my sweet Emma!

Crawling Videos

I've been talking a bit about how Emma is crawling all over the place.  It's more of a commando crawl and it just thrills us that she is able to get herself where she wants to go.  She started out able to only move a foot, then a couple of feet, and now she is all over the house.  I'm so proud of our Emma!  She is so determined and motivated and all her hard work on trying to crawl is finally paying off for her.  She even has the bruised legs to prove it!

I'm tickled pink to report that she has mastered the art of turning around and throws a fit when when she crawls to the stairs and we turn her around so she doesn't fall down them.  Since she can now turn she cries a bit then just runs herself around.  We are keeping a really close eye on her because we aren't going to order another custom-gate for the stairs  - by the time we get it we'll be moved and have no use for it!

Are you just as excited as I am by this news?  Well then you'll want to see her in action so I'm including some videos - Enjoy :-)

Notice how she is getting so much stronger and able to hold herself up on her forearms with her head in the air.  This is a new skill that Emma is getting better and better at the more she moves around.

Here is one of her taken from the front:


Here is one of her showing how she turns.  Keep a look out for the first few turns at the 30 second mark and the 40 second mark:




Because you are probably wondering - yes, we are planning on moving before the beginning of the school year.  No we didn't sell our house.  Yes, I am a bit jealous of all the people who put their house on the market and sell it quickly.  We have found a house we want to rent in the approximate area (no houses for rent in the school district we wanted would let us bring our dog!) we want to settle in and think it will be a good fit for us for a year.  In the county we want to move into we had 2 houses to look at that would allow dogs.  Two!  Yikes.  Good thing one had a very open first floor that was all hard wood and would allow Emma to navigate the house quite easily.  We are going through the application process, etc. now so our fingers remain crossed it will all come together seamlessly.  Chris is almost giddy that his daily roundtrip commute to and from work would be cut to 1 hour from 3 hours. - and I'm so happy for this, too.

First taste of independence

Emma has been trying to get moving for a long time but hasn't been that successful.  She tries to crawl but her arms have a hard time reaching back over her head once she scoots forward once and she gets sort of "stuck" in the commando crawl position.  But, she always keeps on trying since she is extremely motivated to find some way to gain independent movement.  

I had thought that a crawler would be great for Emma, but the version that I was aware of was ~$500 and our insurance wasn't about to buy one (and I was saving the fight in me for the gait trainer battle).  A friend told us about a crawler that her daughter was using at school and we found a similar one on the web for about $60.  That really got our attention!  

Emma received the crawler as a birthday present and when it arrived I found that the crawler is actually too big for Emma.  She would need one that adjusts to a lower height than the 13" lower limit but I hadn't seen any of those until I did some more looking around.  The smaller crawlers are more expensive but I did find one here that seems to be a more affordable smaller crawler in case anyone is in the market to buy one.  


We decided to make some adjustments so our crawler could work for Emma.  We worked with her occupational therapist to find a way to customize it and Emma took off on it - literally!  Emma LOVES scooting around the house in the crawler.  It's really her first time to have some independent mobility and she is really starting to explore the house in a whole new way.

The crawler that she received is the Adjustable Crawl Trainer purchased at Flaghouse.com shown here:

We found that we are able to use the adjustable sling to have Emma work in high kneeling, but it doesn't work at all for crawling.  So, we took a piece of wood and cut it to fit between the crawler bars.  The wood was cut so there are a few inches of no wood at all at the bottom of the crawler so that Emma can move easily.  I covered it with some semi-thick foam - purchased at JoAnn Fabrics - to make it comfy for her belly.  I also made a little cover (from a suede-like material with a princess crown embossed in it!) for the foam covered board to make it soft and look pretty.  Then I took foam, covered it with the same fabric and tucked it around the bars so that Emma would have protection from the crawler bars.  The crawler is still a tad bit too big even with the modifications that doesn't stop Emma from moving all around the house in it!  

To keep her from falling off we're using the same "seatbelt" that we use on the potty - a waist trimmer that has velcro on it that we purchased for $5 at Five Below in the exercise section.  We typically use this inside out where the neoprene material faces out and the nylon fabric faces in so that it doesn't get Emma sweaty.  Also, we make sure there are shoes on Emma's feet when she is using the crawler because when we first tried it out without any shoes or socks Emma got a nasty floor burn on her toe from using it to push off so much.  Using shoes eliminates the risk of getting another sore on her toe and gives her more traction to push off and get moving quicker. 


I don't have any new videos to post, but here is one of Emma on the crawler the first day we used it right after her bath - so her hair is a bit wild, she is not wearing socks or a seatbelt and we are making sure she has both now! - and having a lot of fun.  There is a lot of video here, so just jump to about 1:50 for when she started getting the hang of moving.  

Stepping up

Emma has a huge desire to get moving.  She also loves to stand.  So, getting her in a gait trainer has been in the forefront of my mind for over a year now.  It was last November that Emma first tried out a gait trainer during her PT session.  I did a post on it here.  

Since that time I've been working to get a gait trainer for Emma in our house.  There is a lot of talk about gait trainers in the CPMoms group that I am on and the KidWalk by Prime Engineering came highly recommended.  So, in addition to the Rifton Pacer that we tested during PT I wanted to have Emma test the KidWalk.  It took months to get a demo KidWalk to test and while we were waiting we kept putting Emma in the Rifton Pacer and she kept not walking in it.  When we finally were able to test out the KidWalk for Emma she took some steps!  I was soooo excited for her.  The rep. even lent us the KidWalk to take home for Mother's Day weekend this year and you can see a picture of that here.  By the time we returned the demo we knew that was the right equipment for Emma.  We've been working on getting Emma her own KidWalk ever since and I'm extremely *hopeful* that we will have one before Christmas.  Pretty please, Santa Insurance Man.  

In the meantime, we were gifted a Pony walker from a local family whose daughter outgrew the Pony a while ago.  We've put Emma in in quite a few times (you can see a couple of photos here), mostly when we are outdoors, and she stands well in it but hasn't really tried walking in it.  Then, in mid-September one of Emma's friends received a new gait trainer and lent us her Rifton Pacer to use while we are waiting for the KidWalk to get approved and arrive.  We have been putting Emma in the Pacer a bit since the wheels are a bit easier to get moving than on the Pony walker we have and she amazed us last week by taking her first few steps.  Below is a short video of the first two steps, but in total that afternoon she walked about 2 feet!  All on her own!  The next day she walked from the hallway all the way into the bathroom until she ran into her potty seat that was leaning against the bathtub - a total of around 3 or 4 feet!  

Notice how Emma "listens" to me to move her foot forward and then her other foot forward.  Following directions on motor skills requires a lot of things to come together for Emma and she can't always make her body do what we ask her to do.  So, I love the video for both the steps and the following directions.  My girl continues to amaze and inspire me!

In addition to taking these steps, Emma has been sleeping differently the last month or two.  She has always been a belly sleeper with her arms at her sides and very little movement through the night - unless you count when she wakes up crying and gets moved into our bed (ha!).  Lately she has been all.over.the.place in her crib.  She rolls from side to side, scoots to the top, turns her body 180 degrees, gets caught between the slats, moves her covers all over and generally causes quite a commotion in there.  It's WONDERFUL!  But at the same time it's been horrible in the sleeping situation as it's causing her to bump her head or get her foot caught or get cold - all of which usually ends up with her (and us!) waking up several times during the night.  I know we need to find a different sleeping situation for her rather than her crib but we don't have anything figured out on that just yet.  We'd love to go to a full mattress to give her more room but the girls share a room right now and there just isn't enough room.  Maybe when we move.....whenever that happens!  If anyone has any ideas on good bed options please leave me a comment.  I really would love some input.

It seems like quite a bit is starting to come together for Emma's independent movement right now.  I'm so excited for her accomplishments and hope they continue.  I have seen Emma accomplish something amazing only to make me wait months to see it happen again - I hope that is not the case this time!  

Oh, and FYI - In my next post I'll give an update on Emma's crawling.  I know some people might find the information on the crawler Emma is using, so check back soon for all the info. on it.

Some inspiration

Today I put a video up at the Kidz blog.  It's very inspirational and worth a look if you have a moment.  

"When I let go of who I wanted her to be, and just let her "be," she completely flourished, and I reveled in knowing she's perfect just the way she is!"

The message in this video is so inspiring to me.  I love to come back and look at it when I need a gentle reminder in the incredible possibilities that are achievable when we embrace our differences.  


If you liked that video, you should also take a moment to read this post on Hopeful Parents.  Because, after all, we could all use a reminder of how incredibly perfect our children are every now and then.

Uplifting Song

I've had a bit of an internal feud going on with God lately, and, well, a very strong mother of another child with congenital CMV posted this song to Facebook and I fell in love with it immediately. I guess we all need a reminder sometimes that we are not alone.

Your Hands by JJ Heller

I have unanswered prayers

I have trouble I wish wasn't there

And I have asked a thousand ways

That You would take my pain away

That You would take my pain away

I am trying to understand

How to walk this weary land

Make straight the paths that crookedly lie

Oh Lord, before these feet of mine

Oh Lord, before these feet of mine

When my world is shaking

Heaven stands

When my heart is breaking

I never leave Your hands

When You walked upon the Earth

You healed the broken, lost, and hurt

I know You hate to see me cry

One day You will set all things right

Yea, one day You will set all things right

When my world is shaking

Heaven stands

When my heart is breaking

I never leave Your hands

Your hands

Your hands that shape the world

Are holding me, they hold me still

Your hands that shape the world

Are holding me, they hold me still

When my world is shaking

Heaven stands

When my heart is breaking

I never leave You when...

When my world is shaking

Heaven stands

When my heart is breaking

I never leave...

I never leave Your hands

Emma isn't smiling

Emma is usually a really happy little girl (outside of bedtime!). With her teeth coming in, though, she has been having a rough go of it unless we are outside. I shot a video of her this morning and wanted to share because it shows:

1. A side of Emma most people don't see - a sad side :-( Luckily, she perked up a bit after I took this video.
2. That even with all the crying she manages to hear me tell her to lift her head up.
3. That she follows the direction I gave her to lift her head up! Yeah, Emma!!!! This is a lot of work for her!
4. When I mention Daddy, she perks up. She is a total Daddy's girl.
5. When I mention Daddy again, she looks towards the door - I'm thinking this is on purpose as she might have thought me talking about him meant he was going to come through the door any minute.
6. When I mention Mommy, she goes back to crying. Hah! Some days are just like that.