A communication journey - lengthy update on AAC progress to date!

Communication. 

Emma has many physical challenges and she doesn't let them dampen her positive, happy spirit and so we don't let them dampen ours. 

But.......as her Mommy, the one thing I have the hardest time with accepting is the limited communication Emma has because of her body. 

I know that her mind is sharp and she has so much she wants to say but her mouth muscles can't easily form words.  Her arms don't work well making it almost impossible for her to do even the most basic American Sign Language (ASL) signs.  She cannot get up and walk across a room and pick up what she wants and show you.  She cannot go over to the fridge and pull out food or drink to let you know she is hungry or thirsty.

Emma can use her smiles and cries to help you figure out what she is thinking.  She can use gross body movement to indicate her level of excitement or protest.  She can use her eyes to focus on something and try and use the Jedi mind trick to bring the item to her. 

I often imagine what it must be like to be trapped in a body with a fully functioning mind without a robust expressive means of communication.  It's scary just to even imagine it.  If you are the parent of a child that is living like that, it's the thing that will keep you up for countless hours at night scouring the internet for ways to give your child an expressive means of communicating.  It will have you seek out people that believe in your child the way you do and are willing to trial lots of options and equipment to see what will be the best communication fit for Emma. 

At the most basic level of communication you want to give your child a Yes and No option.  At the very least you desire to use it as a way to figure out why she is crying. 

• Are you hurt? Yes or No  Is it your leg?  No  Your arm?  No  Your foot? Yes
• Do you want to go outside?  
• Are you hungry?  Do you want a yogurt?  Do you want a pudding? 

It's really quite amazing how much active communication you can have with just a Yes and No option. 
But.......we want more.  A Yes and No option does not allow my child to initiate a conversation.  To tell me that she wants to go to the store, that she knows her ABCs, knows simple addition, subtraction, and all the 3D shapes.  That she loves to read books and her favorite colors at the moment are pink and purple.  It doesn't allow her to say Hi to her friends, to tell them she went to the movies over the weekend and saw Paddington Bear, that her sister got a cat for her birthday and she loves when the cat jumps up on her lap so she can pet her fur.  To tell us that she wants the first Valentine's Day card she makes to go to Connor and she wants to sign it XX, not XO.  Definitely NOT xo!  That she wants to go swimming with her friend Helena or wants her friend Sammy to come over. 

These are all things that Emma wanted to tell us, that she can tell us.  That we now know because she is getting more proficient at her Eco2 with Eyepoint (the Augmentative and Alternative Communication device she has been learning for the last 2 years). 

It's slow.  S...L...O...W going on getting her up and using her device.  There are days when I wonder if we are wasting our time.  If she will ever want to use it freely without a lot of urging from those around her to use it.  It is hard.  She uses her eyes to navigate and it takes a lot of stamina and determination.  I've tried it and it's HARD work to use your eyes to talk. 

At first Emma chooses to use her device at home and only to tell us she wants to "Go Outside". Always outside. Then she starts to tell us she wants to eat or drink. She brings her device to school every day and chooses not to use it. It's hard. She is young. Everyone keeps encouraging her to use it and she sometimes says the weather is Sunny when asked and her teacher points to the Sunny icon for Emma to look at.  Her speech therapist calls to tell me she needs to let the district know that Emma isn't participating in her sessions and is unlikely to meet her speech IEP goals for Q1 and Q2 reports. I worry about what this means. I remind myself that she is young and we are in this for the long haul. We have time to help her figure this out.

By January 2014, Emma is in the full swing of Kindergarten.  She chooses to use her device more (but not often enough for my peace of mind) during her one-on-one sessions with her speech therapist.  She rarely will use it with her friends.  She sees no need to take her eyes off her friends who are active and fun to look at so she can stare at her computer screen to talk. She doesn't want to say anything that badly that would make her want to take her eyes off her friends to talk to them. She participates in her lessons and coursework using mostly index cards or manipulatives. 

Emma is smart.  She is really smart!  Her entire team believes this and her reports often read that the results of her evaluations are likely understating Emma's abilities because she only participates in them when she chooses and often chooses not to answer.  It's hard to answer questions.  It's hard to aim your hands and arms that don't move so well to pick the right index card out of a field of three.  It's hard to keep your head up to answer questions with your eyegaze when it takes so much energy to hold your head up and you would rather save that energy for driving your powerchair around with your head or looking at the funny antics that your friends are doing.  Especially the boys - those boys are wild and funny and Emma can't get enough of watching them and laughing with them and the boys love her as an audience.  Emma is a very popular friend in Kindergarten and she sees no need to answer questions posed by adults. She is young.  Only six years old and she much prefers the company of her peers than adults.

A year goes by and by the time Emma is graduating from Kindergarten she is using her device a lot at home and sometimes at school.  She is making choices from low tech communication options - index cards, eye gaze board, dry erase board, etc.  and we know that she is learning a lot in Kindergarten.  She knows her letters, numbers, number sequence, can tell time, do basic addition and subtraction.  She will only do this for a few people, though.  She doesn't want everyone to know all that she can do.

Summer comes along and she attends summer camp at a special school where all her campmates use talker devices.  They talk A LOT.  I hope that Emma will learn by their example and learn to use her device better before she starts 1st grade.  They ask Emma questions and then ask the teachers why Emma won't answer their questions. Emma takes it all in but doesn't choose to use her device. Slowly...slowly, she starts to use her talker.  During lunch she tells them what she wants to eat - pudding, main meal, Nutella. She tells them she wants to drink. She doesn't often share her news from home but she does sometimes. She uses her device at home more effectively. She is navigating between menus quite a bit and finding the words she wants to say. Summer ends and Emma is slightly better at using her device but is not as good at it as I had hoped. 

We are thrilled at all that Emma can tell us and that she is no longer limited by a Yes and No and are hopeful that she will continue to make progress with her communication.  I remind myself:  She is young.  It will come.  We are in this for the long haul.

We go on vacation to Ireland and leave her device at home.  We have fun and Emma is not a bit bothered by the lack of her device.  We are all happy just to relax together without a time schedule, appointments or extra equipment to lug around. When we come home she giggles when we power up the Eco2 and she is ready and willing to use it.  The break did her good and renewed her enthusiasm for talking with her eyes. She starts to talk - a lot!  We now want to have it on at all times for her since she is pretty chatty with it.  She talks at home when it's just us and sometimes when we have people over. We have it up and on when we go to visit friends so Emma can talk to them but she doesn't often look at it. She would much rather look at all the activity and smile and answer questions with her Yes/No hand signals.

Emma is starting a new school for 1st grade.  New teachers, new aid, new therapists.  Her speech therapist will remain the same as Kindergarten, though, Praise God!  Emma does NOT do well with changing out people.  We visit the school again and Emma uses her talker to tell her teachers about her trip to Ireland.  It's the first time they've seen her use it as she has mostly ignored it during previous visits.  They are excited to work with Emma and we leave the device for a couple of hours so her speech therapist can train her team on how to use the device before Emma shows up at school for the first day of 1st grade.  I'm thrilled at how excited they are to work with Emma. 

There is a lot of positive energy in the room and Emma seems excited with her new school.  It's the local elementary school. She will be mainstreamed with her neighborhood kids and she will be in the pull out classroom for math and language arts. It will be the standard district curriculum but will go at a bit slower pace which will be good for Emma given that she needs some extra time to process what she is hearing (she hears with cochlear implants) and then get her motor plan together to respond. 

Emma is thrilled with her new school.  First grade is the BEST!  There are so many new friends and everyone at school knows Emma.  When we are out in our community many, many people say Hi, Emma! and I have no idea who they are.  Emma knows so many people and her community has embraced her fully.  This is what we wanted.  She is very social and is doing well with all the social parts of school.  She has convinced her teacher that she doesn't know what a number is and has no idea what these letter things are she keeps referring to.  Sight words??  She pretends she doesn't know them.  She refuses to look at her talker.  She smiles and is engaging and everyone really loves being around her.  She continues to do well with her talker with her speech therapist who knows how clever she is and knows how Emma can navigate her talker but decided to keep mum about her knowledge to everyone else. 

I read the reports of her day in communication notebook.  There were pages written but the gist is usually:  Emma was smiley today, enjoyed watching the boys, didn't want to answer any questions. Her teacher consulted Emma's previous teachers and sought out new reading programs. She celebrated every attempt that Emma made to participate and hoped it would encourage her to participate more. Emma had some really good days where she would pay attention but most days she just did what she wanted and chose not to participate.  One day Emma even refused to open her eyes to read the fun book her teacher was reading.  Everyone continued to think Emma was taking the information in but they had no concrete evidence from Emma about what she knew. 

At home, Emma uses her talker to tell us more than ever.  She was learning things at school - taking it all in - and telling us some of what she knew at home.  I told her teacher she was doing a good job and to keep at it - it's going in and I know that because she is telling me at home and she will eventually let them in on it at school.  She uses her talker a little bit when friends are over. She is getting chatty and we like that she can use her talker to express her wants/needs, communicate socially and participate in academics.  We see progress on all these fronts at home - Slow and Steady progress.  We wish it was faster but will take what we can get.  After all, our child who is deaf and cannot talk is now able to tell us quite a bit of what is going on in her mind.  She is REALLY, REALLY good at talking when she wants.  She doesn't particularly care to chat with me if I want to talk and she isn't into it.  I learn to be OK with that. 

Christmas break happens and we are busy. We put on Emma's talker at certain times of the day  meals, art activities. We aren't great at having it available at all times. One day Emma is unhappy and whining a lot. We pull out her talker and she tells us all kinds of things and is all smiles.  We need to be good about having her talker available at all times.  She is so much better at using it. We have to figure out ways to have it at just the right height and distance from Emma in all different areas of the house.  The main drawback of her device is it has to be positioned JUST SO in order for it to read her eyegaze correctly. We are still working on this but are getting better at it. It's a journey and we are all learning new things daily.

School starts back up after the break.  Emma takes off!  I get reports daily about all that Emma is doing in school. She is paying attention to the lessons. She is answering questions. She is telling the class her news from home. It is her turn to do the weather and she uses her talker to tell everyone that it is snowy. She spontaneously says Hi to some people. She says her classmates names and participates in reading comprehension questions. She does math and answers using her device even when she is given the option of answering with index cards. They work on sight words and Emma uses her talker to say them. Some words I don't know where they are on the talker but Emma does. Al the free time of exploration we have given her with her talker seems to be teaching her where words are.

She has her FIRST REAL CONVERSATION with a friend.  She say "Hi" and the child says Hi. Emma says "How are you?" and the child says Great, how are you.  Emma says "I am good".  I consider doing cartwheels around the house when I read that!!!!

Each day the note coming home is better and better.  The words WOW! regularly show up.  I am thrilled.  I am worried.  Will Emma stop doing this tomorrow? Will she go back to her old ways? I am cautiously optimistic.

Emma continues to use her talker at home. She strings several words together to form sentences. She uses it incessantly to say "Come" to Zoe our cat.  Zoe ignores her then walks out of the room. Emma uses her device to say "Turn" so we will turn her chair around so she can see Zoe. I add the word Zoe to her names section of her talker.  Emma says "Come" "Zoe". Zoe still ignores her.  Emma says Zoe Zoe Zoe Zoe....I laugh.

I picked Emma up from school on Wednesday to take her to her horseback riding lesson.  Everyone is all smiles.  Her team is bubbling over with excitement and want to tell me how well Emma is doing. Emma is using her talker so much. She had a conversation that day with her art teacher and was telling her all about visiting her MomMom and things she did on the weekend. At the end of art class Emma didn't want to leave - she wanted to keep chatting. They had an assembly that day.  There was a magician and everyone had to be quiet. Emma wanted to use her talker and they unthinkingly shushed Emma. Oh....my....gosh!  Just - I have no words.  They said after they did it they were like Oh My Gosh!  What??  Did we just think to shush Emma? The child we are desperate to talk to us for ages?

Her teacher stopped me to say that when she did the 3D shapes with Emma and Emma correctly identifed all 6 of them with her talker - I think they are cube, sphere, pyramid, etc. - she kept thinking Oh my gosh what else does this child know?  What else does she know?  So she did some spelling words with her.  She gave her one word and had her pick the letters from index cards from a field of 2.  Pretty easy for a field of 2 but it was a new task and she wanted to start small.  Emma spelled both words correctly.  By the time they were on the third word Emma was done and wouldn't participate anymore.  That's ok.  We know.  Now her team knows that what they are teaching Emma is soaking up like a sponge.  And it's energizing all of us.  Including Emma.

Emma has had a couple of off days recently.  I'm chalking it up to a cold and her not feeling so fantastic to participate.  It could be that Emma has gone off of participating but I don't think so. I know she'll have good days and bad days. 

We are all truly excited.

Excited that Emma is becoming a more active participant of her school community.

Excited that Emma is energized by the increasingly challenging academics.

And excited to see what the rest of her 1st grade year will bring.

Bring it on!


Notes:  Emma uses an Eco2 with Ecopoint device.  She also uses a Yes/No hand signal.  You can click on this link to read previous posts on our AAC adventures.  You can click on this link to read about our Yes/No hand signal. 

Fall Overview

Today is the first day of Fall.  It's my very favorite season.  I just love the chill in the air, the cozy feeling of a sweater in the morning, the availability of pumpkin spiced coffee, the changing leaves.  I don't enjoy the shorter days or the hectic schedule that comes with the back to school scene. 

This year both girls are in full-time school.  Julia started third grade and she is getting so very mature.  She is turning into a bookworm and devouring books at an astonishing rate.  It makes my heart sing to catch her cuddled up on the couch with a book in her hand or have her beg to stay up a few more minutes so she can read just a little bit more.  She still has a silly side and is allowing that to come out in public more often.  It's nice that she is letting the world see a bit more of her captivating personality instead of saving it for home.  This year she continues her Irish dancing and is adding in violin lessons at school.  Seeing her leave two mornings a week with her backpack and her violin makes me smile - it's a seriously cute site!

Emma is in first grade at our local elementary school.  She has a great team helping her succeed in a mainstream setting.  Some days are going great, some days she isn't interested in participating.  That is our Emma.  With the exception of her speech therapist her entire team is new.  Emma takes a LONG time to adjust to new people.  I'm praying that she starts to settle in soon and show them what she knows.

I continue to focus on getting myself in the best shape of my life and that means I've been running and taking classes at my gym more often than not.  With the girls back in school it leaves me some free time each day to get in a workout.  I'm even strongly considering doing a triathalon with Emma in May.  That gives me more than enough time to prepare.  Emma loves joining me in my workout sessions.  She is a great little motivator when it would be easier to cut a workout short.  I also have a neighbor who joins me for the evening and weekend workouts.  I love having a partner to workout with as it pushes us both to go a bit further or faster or workout on a day we would rather skip.  

We purchased a new bike trailer for Emma and she loves it!  I'll do a review on it soon, but for those who are wondering it is the Chariot Cougar I and a link for it is here:  http://www.rei.com/product/867690/thule-chariot-cougar-1-stroller-with-strolling-kit. The verdict is still out on how long it will be before she outgrows it, but it is working for now.  I'm planning on doing a 20 mile bike ride to fund raise for Cystic Fibrosis in a few weeks and was hoping to trail her behind me but the lawyers associated with the even aren't keen on that idea.  Luckily, the triathalon I'm training for is all ability friendly.  For more information on it, check the details out here:  http://gotthenerve.org/race-information/

With the girls back in school and *mostly* settled in, I've decided to look for a part-time job with flexible hours so I can still be available to drive Emma to appointments and therapy sessions and consult at school as necessary.  I found a few positions that really interested me but I might not have interested them enough.  I am confident that when the time is right a job will come along.  We are also still navigating the real estate market.  We put our house up for sale a few months ago when our tenants moved out but so far we haven't had any offers.  We will likely put it up for rent again if we don't get any offers soon. 

And I'll leave you with a photo I snapped last week after Emma's horse lesson.  This was at the end of the half hour session.  She did the best riding I have ever seen last week and after a full day of first grade at that!  My girl never ceases to amaze me.

Back to school and other musings

The end of summer flew by and we've been busy ever since.

These walls are so FUN to touch!!!!

I was happy to get in a few final field trips with the girls - it was our very last Field Trip Friday until next summer.  Our girls Field Trip Fridays started about 4 years ago and consisted of me and the girls exploring our community.  We visited places big and small - anything from visiting museums and parks to walking around our neighborhood looking for different types of leaves.  These days were the highlight of my week where I just had fun with the girls and let the housework and laundry pile up.  Emma had off on Fridays in pre-school so our tradition continued while Julia was in school, but this year Emma will be in school full-time Monday-Friday so our Field Trip Friday will take a hiatus for the school year.  

Look at me!!

A brief rest

Since it was our last Field Trip Friday we made it a super cool field trip and visited the Magic Gardens where everything is covered in mosaics.  It isn't fully wheelchair accessible but we were able to make it work for us since Emma is still so little.  She loved touching the walls and the mosaics and the artist even stopped over to say hello to her and thank her for visiting.  I had no idea he was the artist at the time, though, so I didn't get a photo but I'll try and get one next time if he is there.  Afterwards we visited Chris at work and Julia took a peek at her 2nd grade classroom and got really excited for the start of the school year.  It was a perfect Field Trip Friday!

Julia is such a good photographer

We finalized Emma's initial IEP and placement.  Our district has half-day Kindergarten and we decided to send her for a full day instead of only the 1/2 day that she would normally attend. She will be in a Multiple Disabilities classroom (MDS) - I want to go on record that I HATE THAT NAME!!!! - for the morning and will receive all her therapies during that time and will attend the mainstream afternoon Kindergarten class with her one-on-one aide.  She gets many therapies - PT, OT, Speech, Hearing, and Vision and fitting all them in during the regular 2.5 hour Kinder class would be too much interruption in my opinion.  Emma doesn't like to get pulled out or work with therapists when her friends are around!  So we decided to give this set-up a try for her first year at elementary school and see how it goes.  

HAPPY HAPPY HAPPY Kindergartner

The feedback so far is that she is doing really well and LOVES the mainstream Kindergarten class!  She appears to be keeping up with her classmates and is fitting in just fine.  The pace of the class seems to hold her attention better and she is less distracted than in the MDS classroom.  Wow!  That is a pleasant surprise!  I went in to talk to the class for 10 min. one day about all things Emma and to answer any questions they had and I was told "I think Emma is so cool!" and "Emma is my best friend!"  sprinkled among the many questions they had so I think she is fitting in just fine with the children!  And, the other day I picked her up from school (she typically takes the bus to/from school) and when her class walked by for dismissal I heard so many of them say "Hi, Mrs. White."  It really caught me off guard because I still forget that I'm Mrs. White {most of the girl's friends call me Ms. Kristina} and I'm not used to Emma's classmates actually talking.  It was such an eye-opening and wonderful experience for me.  So many things about Emma in the mainstream classroom have shown me the positive impact inclusion in our schools makes to our community.  The last few weeks have made it crystal clear to me that we made the right choice for Emma's kindergarten year and all the work we are putting into the mainstream setting is completely worth it!

You're new.  Let me check you out.  Ok, we're friends.  Did you know the bus ride is my favorite part of the day??!!

I'm ready to go.  Don't worry about me, Mommy.  I'm not a bit afraid and don't need to give you a second glance :-)

Julia started back to school and is now a 2nd grader.  How these girls are growing so quickly is beyond me!  I love to watch her grow and mature and I love hanging out with her.  She is just so amazing!  I love the way she is connecting her world together and the conversations we have at bedtime.  The time when the girls arrive home from school is my favorite part of the day with bedtime cuddles and chats with Julia a close second.

A friend I met through this blog - LOVE how this blog has introduced us to so many wonderful families! - told us about some local swim classes for children and siblings.  It's held in a heated pool at a semi-local facility/house for adults with cerebral palsy and it's something our children can do together and they really love it when they can take classes together.  This summer Emma made huge gains in swimming with a float ring (the $1 floats you can get at the drug store) around her body and she loves to swim "laps" in the pool.  So we figured it is a good time to start lessons again.  Julia is a strong swimmer and has been for a while but she loves swim lessons so we enrolled her to work on her technique a bit.  Both girls love the lessons but I think they enjoy the last 5 min. in the hot tub more :-)  Who wouldn't want to end a swim lesson with a soak in the hot tub?  I just might sign myself up for the next session...just kidding.

______________

Here is a photo I just have to include.  I took it on Back to School night.  Emma's artwork is circled in yellow here.  I just LOVED seeing her art alongside her classmate's work.  Such a proud moment for me!

Emma's artwork hanging outside her classroom.  She said "I hope that I learn to read" when asked what she wanted to learn in kindergarten.  

Preschool Graduate

Emma's preschool follows a 12 month schedule.  They have the same number of school days as other schools but they spread it out over an entire year.  I didn't think we would like this schedule at first but we LOVE it!  I sure wish other schools would adopt it.  There is still a long summer break and several week long breaks through the year.  I think it really keeps the children (and parents, teachers, therapists, etc.!) from burning out and doesn't require all the review in the beginning of the year.

Her school year is now coming to a close and today her class had an end of year ice cream party.  There were several students graduating to kindergarten and they wore caps and gowns and there was a little ceremony.  It was beyond cute!!!!  I teared up seeing Emma in her outfit walking up to get her "diploma."  She stood so tall, so proud.  She looks so ready to take on the challenge of kindergarten.

She has grown in so many ways during her two years at the preschool and has had an incredible team encouraging her in her daily endeavors.  She is loved by her classmates and her team of teachers and therapists.  It was at this school that Emma found her voice (ECO2 device) and met so many of her academic and developmental goals.  It prepared her to take on the world of kindergarten in a way that I couldn't have imagined when she started school.

Emma's friend at school wanted to dance with her to the music so he took her hands and helped her move to the music.  It was completely unscripted and heartwarming. 

Emma loves an audience and attention.  When her teacher put on the graduation music and it was her time to stroll down the aisle she strolled just long enough to get to see the crowd of people and then she stopped.  Typical Emma!  After a bit of encouragement she continued on to her teacher to get her diploma.  I caught it on video and can't stop watching it.  My girl walked down the "aisle" and received her preschool diploma.  What a milestone for her!



Her class performed a song for everyone.  It was about stars shining and growing.  Emma doesn't really sing so her speech therapist set up a touch lamp for her to turn on and off at certain times during the song.  It was a wonderful way for her to participate!

There was a video slideshow of their year and it was so wonderful to watch.  I never tire of the slideshows - it's such a nice glimpse into the magic that occurs during the school year that we as parents don't typically get to see.

So many people came up to us and told us how much they loved seeing Emma each day.  She always greeted everyone with a huge smile and brightened their day.  She will most definitely be missed, but it's time for her to share her zeal for life with a whole new group of people.  Although Emma has a lot to learn in her school adventures that have only just begun, it is evident to so many of us that Emma is so much more a teacher than a student.  She teaches people to laugh with great abandon on a very frequent basis, to smile in the face of adversity and to inspire greatness in others.

The world needs the brightness Emma gives it and we are all the better for having spent time in her own brand of sunshine.  Congratulations our sweet Emma Bean!!!!

Technology Update

It seems like there isn't a long stretch in the year when we are bored.  Right now we have lots of school activities, communion parties, softball games, etc.  We are also working on Emma's kindergarten placement and it seems like we have an agreed upon placement for her in the Fall.  I'll tell more about that later once we update her IEP because I'm afraid announcing it on this little ole blog might jinx us.  Better safe than sorry in my book!  Especially when it comes to IEPs....sigh.

Emma has been making a lot of progress using Evie at home.  She has a new SLP at school who hasn't been trained on her device yet but she is working with it as best she can and Emma is starting to show her what she can do with it a bit more.  We had an IEP meeting today to increase her Speech session from 2x 30 min sessions/week to 2x 45 min sessions/week based on input from her prior and current SLP.  Emma just gets warmed up and in her groove at the 30 min. mark when it's time to end and they want more time with her.  So that was agreed and added to the IEP.  Also, we'll add training time for her current SLP to the IEP and hopefully she'll get it ASAP.  Lastly, we added in some wording that lesson plan words will be programmed into Evie prior to the start of the unit.  Right now I do all the programming but once her SLP is trained she will take over that responsibility.

I spent a lot of time on the PRC website (the training tab at the top of the screen is where I went) and AAC Language Lab lately taking the self paced study courses and I've learn a ton!  The resources they have posted are wonderful and if you are using a PRC device I recommend checking them out.  They have lesson plans for how to teach core words and ideas to incorporate the core words into your everyday life.  I printed out many of the lessons for the Stage 2 communicators and plan to use them at home with Emma.  I'm thinking I'll plan to dedicate 2 sessions/week at home working on the lesson plans over the summer.  That seems about right for us.  We also plan to add in outside school Speech sessions with her device over the summer with the AAC expert at our hospital.  My hope is to build on the momentum Emma has with Evie lately and have her start Kindergarten with a more functional use of the device.

Emma continues to love playing with her iPad and it really gets her to open her hands nicely.  We decided to purchase the iPad attachment for the mount (Mount'n Mover) she uses with her talker.  The iPad attachment can be used with both her table top holder and the wheelchair holder.  The iPad attachement is the new one with a bungee cord to keep the iPad secure.  We can also use it to hold a mirror (my girl LOVES to look at herself) or other items instead of the iPad.  It was an investment in the attachment but so far it's been hugely successful.  Here is a brief video of Emma playing the Peeping Musicians app that is put out by the people at Helpkidzlearn.  In case you aren't familiar with them, it's a website with many fun switch activated computer games Emma enjoys playing.

Tears of joy

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

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

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

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

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

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

I just had to write this down here so I don't forget it.  Did I mention that I'm blown away by all that happened in that 30ish minutes?

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

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

Winter Concert

Julia's school had their 1st and 2nd grade Winter Concert today.  They have been practicing for months and the children were so excited!  The theme this year was Being human:  Human be-ing and the concert was "the creative outcome of learning and sharing what is truly unique and magical about being human."  Doesn't that sound lovely?

It was.  The music teacher does such a great job with the children and he seemed to be having as much fun as them.  It certainly made for a festive atmosphere!  The children have no inhibitions and gladly sang their hearts out, sounding like little angels.  The concert was about 50 minutes, 12 songs in all, and it went by so quickly.  I could have sat there listening to their little voices and watching their hand gestures and seeing them bursting with enthusiasm for much longer.

Emma was captivated by the show.  She sat at attention the entire time and when everyone was encouraged to clap along to the music she gladly brought her fists almost together over and over.  It was wonderful to see (I've never seen her do that before!) even if it would have looked like she was flailing her hands wildly about to the *untrained* eye ;-)

I love watching Julia on stage.  She has no fear of an audience and likes being in the spotlight.  Some of the children would sway about and make the grand motions that went along with the songs, but not Julia.  She is one of the more reserved children; a bit more serious than some of the others.  You could catch a bit of her wild side if you looked closely for her little smirks, sideways smile and bit of extra swing in her hips.  It's fun to see that side of her.  I like when she lets loose and we are always encouraging her to test her boundaries more.

After the concert, Emma and I worked at the book fair until it was time for lunch.  We joined Julia in her classroom to eat and were surprised to find Julia had set out a couple of place mats for us at her table.  Yellow for me and purple for Emma - she picked our favorite colors!  Once lunch was done we left and were happy to arrive at the car before our meter expired since I found out today the expired meter ticket price is a steep $36!  Then we were off to tour a school I think would be a good fit for summer school for Emma this year.  We'll see how that plays out.

What a great way to end the week!

General musings

The weather today is gorgeous!  A rare Fall day that doesn't feel like winter and will go up to about 60 degrees.  Everything seems a bit easier when the sun is shining and the weather is fine. I guess when it comes right down to it my main beef with winter is the hassle from coats getting situated in wheelchairs and car seats.  Thankfully, we don't have to deal with any of that today!

Emma woke up bright and early for herself and was in a ridiculously happy mood - even for a little girl who typically oozes happiness.  We spent a bit of time doing some hand stretches and hand playing - where I would open my hand and stretch it out and have Emma copy me and then I'd put her hand in mine and we'd wiggle them around.  I'm noticing that Emma's hands are getting tighter and tighter and that makes me nervous so I've been trying to stretch them more and finding ways to make opening them fun.  If anyone reading this has any ideas on how to stop her hands from getting so tight, please share (Annette - if you're reading this maybe we can plan a visit so you can give us some tips???  plus, we miss you a whole lot!!!!!!)

I smiled when I noticed Emma and Finney seem
to be looking in the same general direction!

Last night after Emma had her hair blown dry Julia took one look at her and said she looks different.  She looks older.  I agree.  My girls are growing up so, so quickly.  So today I brought my camera on our walk and decided to take a photo from behind to capture what I usually see from my vantage point on our walk.  Emma is usually looking all over the place with Finnegan leading the way while I try and manage to keep them from getting tangled up!  Emma loves to toss her head about and look back to see what I'm doing.  She usually looks up and over the headrest but today since she didn't have her chest harness on she decided to lean forward and give me a backwards glance.  She always gives me a sly smile as if saying "Just checking that you are still there - that you still have my back."

I've taken photos like this before and think about how much has changed.  In the beginning it was in her Kids Up FAST chair and my view of Emma was always with her little hat on which was the only way we could keep her CIs on her head in the early days.  It always seemed like she had such a tiny little head and eyes and smile a million miles wide when she looked back at me.  Always taking everything in while we walked.  When she was about 3.5 we were finally able to keep her CIs on fairly regularly without her hat at I just loved the look of the back of her head with the little ponytail on top swaying side to side each time she snapped her head around.  And now my view is of a lovely little girl with her hair held back by a fancy clip and her CIs mostly hidden under her hair.  She is in a big girl chair and now more often than not she has her talker attached so she can "chat" if she wants.  Mostly she doesn't want, but I expect that will change over time.

One thing I hope doesn't change is Emma's love for school.  She is so excited each and every day when her school bus arrives.  Lucky for me she is equally excited each day as her bus drops her home.  Her drivers said they've never seen a child so happy to both go and come home from school.  They just love having her on the bus and especially enjoy when she treats them to her "singing" on some of her rides home.

Life is good, even if it does seem to go by at warp speed sometimes!

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.

First Day Pre-K

Today Emma started Pre-K.  Her classroom is not technically calling it Pre-K but that is what we are calling it since it's the year before she starts Kindergarten.  Unless we keep her back an extra year (we are strongly leaning in that direction!) to get her more ready for Kinder.  Then I guess this is pre-Pre-K ;-)

Today Emma headed back to the same classroom as she was in last year with the same teachers, same aide, and probably many of the same students.  It's not as big a change as you might imagine by the paper announcement she is holding in her photo.  But to Julia the fact that Emma is going into Pre-K is a HUGE deal and she is so proud of her sister - as are we - so we needed to make the day a bit special and mark the occasion with a new lunch box, a sign announcing the day and by wearing her princess necklace to school.

With a lunch box this cute how could we resist?  Not to mention that Emma hugged it in her arms all around the store to show us just how much she wanted that owl lunch tote!  I'm over the moon when she shows such a strong preference for anything when we are shopping.

I wanted to get some great photos of her outside the house with her sign and her sister but just as we were getting ready to go out the door it decided to rain buckets!  In all honestly I was a bit sad about the rainy first day of Pre-k and my missed photos.  Although I should have expected the rain since most things with raising Emma rarely, if ever, turn out as I planned.  And when the sun came out later this morning and Julia and I were complaining how sunny and hot it was when we picked her up from school I realized that today really was a day very similar to our journey of raising our little girl.  A brief storm in the morning followed by many hours of warmth, sunshine and smiles.  I really feel honored that God decided to bless us with our own little Emma sunshine!

It doesn't really feel like school yet - it feels more like she just finished up her pre-school year.  Oh, wait!  She did just finish her first year in this new school only 2.5 weeks ago since she attended summer "camp" for 5 weeks this summer.  Emma's school operates on a rolling year round schedule.  That means she has the same amount of school days/year but they are stretched out over a 12 month period instead of 9 months.  I was skeptical of this schedule at first but now that we lived it for a year I think it's genius!

Here is my big girl once we arrived at school - fashionably late, of course!, due to the horrendous traffic from the storm.  I think I like having the photo at school better than in our driveway after all.  It's a shame I didn't bring my camera and only had my phone to take the picture.  Still, I just love this shot!

Since our life is never cut and dry we have her IEP scheduled for tomorrow morning and we may change her schedule from the morning to the afternoon class.  Or even to an entirely different school.  Our life is ever changing and we are open to enjoying the ride.

Since I didn't have a blog post about Emma's end of year program I might as well talk a bit about it here.  We were invited to an ice cream social to end the year but it was actually a bit of a "graduation" ceremony.  I wasn't really expecting the songs, the certificates, the crowns or the lovely slideshow.  I was just expecting some ice cream and was excited to see that it was a lovely ceremony her teacher pulled together!  There was an ice cream bar with lots and lots of topping options which made all the little ones happy and all the children were wearing t-shirts with the handprints of the children in their class.  It was so cute!  The ceremony also gave the Moms a moment to chat since we on't really get to see each other too often.  It was really quite fun for everyone!

Here is a photo of Emma with her teacher last year - who is also her teacher this year.  We just love Miss Anna!

And here is a photo of Emma with her classmates.  As I mentioned before we weren't really aware of the ceremony planned so some of her friends were on family vacations and not at school that week so it looks like she only had boys but in actuality there were two little girls she loved to play with that weren't there for the ceremony.  Does everyone else think she looks like such a big girl in this photo?  I can't get over how quickly she is growing!

Here is Emma getting her certificate and crown.  She kept knocking the crown off her head and it was quite funny!  She's a bit of a clown that way and was doing it all for show though you wouldn't know it from her facial expression in this photo I managed to snap.

We are so lucky that Emma is at this school.  The way Emma has changed and grown over this last year is nothing short of awe-inspriring and much of that growth and change can be attributed to the stellar team that supports her at school day in and day out.  I'm so glad we moved to make this year's experience possible.  I can only dream of what is in store for Emma this year and I'm excited about the possibilities.  Bring it on Pre-K!!!

Busy Days!

This is a busy time of year for everyone and we are no exception.  We are having so much fun and have some wonderful things happening that I need to take a bit of time to capture some of it.  

Julia is finishing up her first year of school.  Kindergarten was really good for her academically and socially.  I am amazed daily at how much she has matured and am overjoyed that she still maintains her super sweet personality that (to me) defines my sweet Julia.  This year she started reading and writing words, sentences and books.  She has a collection of books she wrote and illustrated at school and we were invited to a special event at her school called Meet the Authors.  She was looking forward to this day for weeks and when it finally arrived she was jumping around on her bed with excitement.  No problem waking her up that morning!  She has quite a collection of books, including My Mom, My Sister, My Fish, Dogs, The Chicks and Unicorns.  Her next book she plans to write it My Dad.  Phew!  Glad she didn't forget about dear old Dad!!!!!  We also have a journal she started the beginning of school with entries throughout the year and we can really see the amazing progress she has made with her writing.  It's quite impressive to see it all there in one journal and it is something I will put away in her keepsake binder.  

I was also able to attend the kindergarten Spring field trip to Hopkins Pond.  I missed the trips there in the Fall and Winter and Julia (and me!) was really hoping I could make it in the Spring.  It was a great day and the children had so much fun with the nature walk, picnic lunch and playtime.  It melted my heart that Julia wanted to hold my hand and walk all around with me instead of running off with her friends.  This is a great age and I know it won't last long so I'm going to soak up as much of the Mommy/Daughter time as I can!  After lunch the free play merged into a giant game of Duck Duck Goose and it was so nice to hear the children cheering for the Goose!  I have to say that the Quaker values taught in her school is a great match for Julia's personality and values and it's nice to see them in action.

Emma is doing some exciting things with the Eco2 with eyegaze system.  She is consistently using her eye gaze to choose milk or food during meals and also lets us know when she is all done.  She is also having a lot of fun using the Old McDonald page we programmed into it along with the Colors.  I use both of those pages for games or songs we sing and today we used it for our puzzled and Emma was especially engaged in using the eye gaze system to participated in the game with me.  This is VERY exciting to me!  We started filling out all the paperwork to have her insurance buy her one of these devices.  I am crossing my fingers that it doesn't take too long but since it is such an expensive piece of equipment it might take a while to get it approved.

We also attached some switches to her power wheelchair.  The company ASL loaned us the switches for a 20 day trial period and they have been wonderful to work with so far.  Emma's PTs are thrilled with the support they received to order the trial period equipment.  We were also glad that Emma's wheelchair vendor, National Seating and Mobility, came out right away to program the switches in her chair so we were able to start using the chair with the switches at the beginning of the trial period.  We have it set up with proximity switches that Emma activates by have a body part in close proximity to the switch.  The head rest has a "forward" proximity switch in it so Emma can move forward by placing her head back onto the headrest.  We also have a switch for left and right that we velcro to her tray table to determine the best placement for her to activate them.  I hope to have a video of her using the power chair with the switches soon.  Right now we are mostly working on her moving forward and introducing the left and right switches slowly since Emma is typically only interested in using the right/left switches to spin around in circles.  With practice I really believe that Emma will be able to work the switches to gain some independent mobility - how exciting!

I love days when things just come together

Some days things go really well.  From the time you wake up until the time you go to bed everything works out great.  The thing is, though, is that those days are so...very...infrequent.

Most days I rush around trying to check off 2 items of my to do list.  Yes, you read right - 2 items from a to do list that is at least a couple of pages long.  The reason I have it set at 2 is because I think 3 is reaching too high most days.  Experience tells me that I just as often as not hit the 2 items so I see no reason to mess with a 50/50 record by upping it to 3!

Today, however, is one of those magical days when great things happen even though I'm not checking anything off my to do list.  It almost makes me want to stop the day now because I'm not sure it could get much better as the day goes on, but boy would it be fantastic if it did!  And I have a feeling it will....today is just one of those great magical days where a lot of things come together on the same day.

Emma went to school in her pull-up today.  Not a diaper, a pull-up.  This is a very big deal in our world.  She also went to school with a spare change of clothes just in case.  And guess what?
She came home in her pull-up!  She used the potty at school and did not require a diaper change.  Her aide left me a message telling me how proud she is of Emma.  I like her new aide, and now I like her even more for her kind message with italics and smiley face.  I like smiley faces :-)  Emma does not come by smiley faces or stickers for good work all that easily.

When Emma was settled in the house I looked in her notebook and read how great she is doing with a quick response on her listening check each morning and that the team is now introducing her eye gaze device for her to select the LING (listening) sounds.  She even picked one correctly with her eye gaze device on the first try.  In her notebook I also saw a note that our trial of the eye gaze device was extended until Feb. 22!  That gives us almost another month to see what Emma does with it, which is really helpful in our decision making process of what device to purchase.  She is just warming up to knowing how to use it - and at the age of 4 it still amazes me how quickly she catches on to all the technology we show her! - so handing it back next week would not really give us an accurate trial of the device.

On Martin Luther King, Jr. day we stopped by Emma's hospital to drop off her non-working loaner power wheelchair.  Chris had the day off and was able to help me get it there because it is hard to load/unload it from the car when it has power and even harder when there is no power.  It hasn't worked since we moved and I've really been itching to get Emma back to working on learning to drive a power chair to give her a taste of increased independence.  I was thinking about the chair today and received a call from her hospital that it is all ready for her!  The battery was just too low that it wouldn't charge.  It is now charged and ready for Emma to drive it about.  I'm planning to pick it up on Monday so we can have it for her PT evaluation scheduled next Tuesday.  Emma needs extra PT in addition to what she has at school and one thing I want them to work on is driving a power chair.  The timing of the fixed power chair is just perfect.

Today I haven't checked anything off my to do list and yet it's already been a great day.  I think I'll save my to do list which includes calls to make appointments, insurance referrals, getting insurance to cover some of Emma's essentials, etc. for Monday.  Today is a great day and I want to just enjoy it while it lasts for they don't come around that often and when they do they are meant to be savored.

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!

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.