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. 

AAC Update: Emma and her Eco2 with EcoPoint

Our journey continues with Emma's AAC device.  Here are some other posts I've talked about what we are doing with her talker if you want to get caught up.  NOTE:  Emma also has a Yes/No response and low tech ways of communicating but for the purpose of this post I'm only focusing on her use of the high tech eye gaze device.  

Emma is now 100% eye gaze again with her device.  She decided that her hands weren't helping her talk like she wanted and agreed to look at the device again.  This is a big decision on her part because we can't make her look at the device and you can't navigate it with your eye gaze if you don't look at the device.  I consider this a great milestone for Emma.  

When we received her talker we had a long discussion and decided to set it up for 60 1-hit Unity.  That basically means it could show up to 60 icons at a time on the screen.  Emma had some success with it but not enough.  I saw her struggle with it and it was frustrating to her and me but I didn't really know what to do about it.  Then we met up with another little girl in our area who is about the same age as Emma and uses a device (a MyTobii) to talk.  She was saying all kids of things with her talker and actively engaged in conversation.  It took my breath away!  After talking with her Mom for a while I decided to change Emma's device to 45 1-hit Unity so there would be up to 45 icons on the screen at one time and they would be larger than the 60.  The less icons, the larger the size of them.  Her device can do anywhere from 45 - 144 icons at a time on the screen.  My plan was to dial the number of icons back and make the bigger and more easily accessible for Emma and see what happened.

The 45 set-up had things laid out a bit differently than the 60 set-up so I spent a Saturday night changing up the icons to more closely match the 60 set-up.  Emma had a lot of the locations memorized and I didn't want to confuse her with having the screen look very different.  Plus I figured I'd like them in similar spots because if she moves back to 60 Unity it would be an easier transition.  The 45 set-up seems to definitely make a different for Emma.  It seems easier for her to actually activate the icon she intends.  You could see her try so hard to activate it on the 60 Unity and get frustrated because she would activate an adjacent icon.  

With the 45 Unity, Emma seems more relaxed and happier to interact with the machine.  It seems easier for her, she is having more success in telling us what she needs, and she is stringing more words together.  She is also using it during working sessions with her SLP at school and has even initiated some interactions with people on her talker.  This is huge since she typically wouldn't use her device at school no matter how much her team encouraged her.  

Here are some things Emma has done since we changed the device, although she isn't very consistent about it.  I think that will come in time and for now I'm happy to see her start to tell me more about what is going on in her mind.  

• She has started to chat more.  She will often use it for several back and forth conversations.
• She will use it to get our attention.  If we walk away to do something or are in another room and she wants us she will say something.  If she wants a drink and I'm preparing it she will select over and over and over again the same icon saying Drink Drink Drink Drink Drink similar from what you hear with impatient children!  It's quite funny to me and always makes me smile :-)
• At dinner one night she leaned over to the table and tried to grab her bottle but couldn't reach it.  She used her device to say the following in under 30 seconds without me modeling what to say first.  It still blows me away that she said this so quickly and appropriately:  "you help drink you get drink get".  I got her message loud and clear - she wanted me to help her get her drink.
  

• Someone came up to her in the hallway at school to give her a marshmallow snowman treat.  Her aide told the person Emma doesn't eat them and Emma immediately said on her talker "don't eat" and gave the person a smile before starting to drive herself away down the hall in her power chair to her Kindergarten classroom.  Her aide was so happy to tell me about that and I was thrilled to hear it.  
• Today when Emma came home from school I asked her how school was and she said "good".  After she told me she wanted a drink I walked over to the fridge to get it and she thought I was taking too long so she said "I want my    ".  I returned around the time she said my so I finished her sentence with You want your drink?  and Emma smiled big to indicate yes, that is exactly what she wanted.  

All this has happened over the last month after a very long stretch of Emma refusing to use her device.  I'm hopeful that Emma will continue to grow and use her device consistently enough to tell us how she feels (especially important to me because when cries I don't know what's wrong or if she is hurting), what she needs, what she wants, how her day went, who she played with, etc.  

Emma has a long way to go before I would consider her conversational in a social setting but I am convinced she will get there and I think it will be sooner rather than later.  Especially since we're going to set up some play dates with her friend with the talker.  Emma was VERY motivated to use her talker after her interaction with her friend.  We are also hoping to send her to the summer session at a local school that specializes in augmentative communication devices and power mobility to help prepare her to hit the ground running in 1st grade.  

Initially Emma's school team was unsure about moving her to the 45 Unity.  They think (as do I!) that Emma is very smart and that 60 Unity will give her a lot more opportunities to speak with less effort.  I was happy to hear they think she is capable of the 60 Unity cognitively but I brought up the observations I've made around her use of 45 vs. 60 and that she needs to get some early and consistent success with the device to help her engage more.  Since Emma doesn't use the device as good at school it was important for them to know what changes I saw at home until she starts to demonstrate the same things at school.  We also talked about her diagnosis of cortical vision impairment since she received the device and we had her vision therapist weigh in on 45 vs. 60 icons in light of her most recent Ophthalmologist report.  Given all this we decided to keep her on 45 1-hit Unity.  

The daily reports over the last two weeks have been really good.  All her therapists report that she is more actively engaged and focused.  She is making a lot of progress in all things and not just communication.  She is doing well at Kid Writing which is something I thought would be super hard for her.  She is doing well with simple addition and subtraction.  She is distinguishing between singular and plural words with >90% accuracy - something that is VERY difficult for someone hearing with cochlear implants.  She is walking longer distances in her KidWalk indoors (she loves to walk outdoors but not as much indoors) and driving longer distances in her power chair.  Emma is just full on right now.  I know from past experience that these periods of rapid progress are often followed by periods of sustaining before she kicks into another period of progress again.  

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.

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.

Budding Artists

Julia has some serious natural artistic abilities that must have skipped our generation.  Her school is very, very artsy and I'm glad they are fostering her budding artist because I am the opposite of artsy.

Emma is hit or miss when it comes to crafts and prefers to mostly engage in the truly messy crafts.  She is ALL OVER finger painting!   Lately she is taking an interest in using a paint brush and she really loves her one handed scissors.  

Here is a self portrait Julia made in art class:

We had a girls' craft night at home the other night.  Julia took to it immediately and made several pieces of art and Emma even was interested.  We had Evie available for Emma but she chose not to pick her colors with Evie and instead used her hands to indicate the colors she wanted to paint.  She took her painting very seriously and I was very surprised at how deliberate she was in her selection and paint strokes.  It had been a while since I had painted with her and the last time I helped her I did 99% of the work so I was pleased to see how far she has come in her art.

Here are some photos of our girls' craft night.

I don't have action photos of Emma since I was helping her and couldn't man the camera and the art.  She used the paint brush for the sky and grass and her hand print for the flowers.  She really wanted to get messy and wasn't happy with only using the paintbrush...that's my messy Emma.  She was very proud of the result.  It was so cute to see!

Life and AAC

Watching Julia's dance competition

I wrote a glowing post (on Thursday) of how Emma is doing so great with Evie at home and school and that very same day she came home with a note saying they want to talk about ways we can get her to use Evie more at school because they didn't think it was frequent enough.  I guess the note did take the wind a bit out of my sails for a moment before I realized the likely cause is musical therapists rather than Emma's ability to use her device.  I know how far she has come in using Evie in the last 6 months.  But still......comments like that might make me waiver for a moment.

I immediately recommitted to noticing how she used the device over her 3 days off - Friday, Sat., Sun.

On Friday - immediately after breakfast finished up and she finished on the potty - I asked Emma what she wanted to do.  She told me 3x she wanted to "eat".  This really confused me since she had just eaten her typical quantity of breakfast and I wanted to get on with the day.  Our method to using Evie is to reinforce Emma's request by giving her what she asks for when possible and since we didn't have much planned I went ahead and brought out some more food for her to eat.  She happily gobbled it all down.  My mind was blown!  I mean, I thought for sure she was done eating and ready for fun and she asked to eat by mistake.  No mistake, she wanted more to eat and I'm so glad I listened.  Then she asked for a drink and downed an entire cup.

Watching the crowds at the competition

Ummm....I guess I can't always read her mind.  Good thing we have Evie!  She then asked to "go" "outside" "in" "bike".  So she went for a bike ride and loved every minute of it.  She also used the device as she would typically for the rest of the day.

On Saturday we visited my Aunt at a nursing home and while in the halls she used Evie a few times.  The halls were very busy and it surprised me to hear her talk - and unprompted at that!  She only said a couple of things but they were appropriate and it is very good progress for her to use it in public.  

Sunday was busy and Emma didn't have as much access to Evie as she typically would.  Some days are like that - the fact is life is life.  Raising Emma is a marathon not a sprint and one day without a lot of access isn't life changing yet.  She isn't a consistent enough user of Evie yet to make her miss it and we are still able to use her Yes/No answers and her eye gaze to communicate effectively.  The simple fact is that some of the low tech communication methods are just as important as the high tech method because they allow us to communicate regardless of the environment or situation.  I believe not having access to Evie at all times will be a big issue at some point in the future and I am ever hopeful that will happen sooner rather than later.  Once that happens we will try our best to not let her go a good portion of a day without her device.

Emma's use of Evie is getting both more frequent and accurate indeed.  She uses it - unprompted - more and more at home.  I know she will eventually transfer this skill to school like she does all her other skills.  I'm more than willing to wait.  

Something to say - AAC Update

Long post alert!  I've been asked by a few people recently to update on Emma's progress with her talker so I'm making this pretty detailed for their benefit - sorry to those who would be happy with the cliffs notes version.

Recently Emma has increased her use of Evie.  It's been about 6 months since we received and focused on using it for communication and I'm happy to update that she is starting to engage with people unprompted and is stringing together several words at a time on her own.  This is HUGE.  She doesn't do it all the time but when she does my breath catches.  In-depth communication is something I want for Emma so badly.

Emma seems to know that 90% of communication is non-verbal and she rocks the world of non-verbal communication.  The work of using a communication system generally doesn't seem worth her effort when she is with me or Chris since we can read her like a book and figure out what she wants relatively easily.  With other people, too, she can get most of her wants/needs met through her body language and she is so darn cute that people bend over backwards to try and figure out what she wants and give it to her.

I feel that we are blessed that she is so good at non-verbal communication but her wants/needs are getting more complicated as she gets older and having a more direct mode of communication will help minimize some of the frustration she is starting to encounter.

Her screen is still set up with the core vocabulary on the main page with some of the vocabulary hidden.  This gives her a chance to train her eyes for accuracy in communication and also gives her many of the words that she, as a pre-schooler, would use on a daily basis.  She is great at using the eat and drink core words.  In the fringe vocabulary on the activity row for these we have items such as ice cream, yogurt, pudding, cracker and milk, smoothie, juice.  I find that Emma is often stringing the two words together - for example, Eat Pudding - rather than just selecting eat.  She is getting really good at this one because pudding is a favorite food of her and she knows if she asks for pudding there is about a 50% chance she will get it and be able to skip the main meal if that is what I'm feeding her.  The chance of getting pudding gets closer to 100% if she says Eat Pudding Please.  My girl likes her dessert!

A few things Emma is doing now is saying Please a lot.  She is quite polite and she uses is appropriately.  For example, she might say Play Please or Drink Please.  If she seems to want something and we can't/won't give it to her - for example, she wants a drink but it's not a time when we can stop for a drink and so I tell her she will have to wait a bit - she will then say Please a couple of times and smile.  I love this.

In the Need activity row we have Hug, Kiss and a few others.  Sometimes when she is upset she will say Need Hug or Need Kiss.  I melt when this happens.  Seriously melt.  And of course she gets more hugs and kisses than the million she is showered with every day anyway just because she is so very loved.

We programmed in a few pages for school.  There is a circle time page that offers her an opportunity to engage with her friends and make some selections for their circle time routine.  We also added a PT/OT page where she can select what activity she wants to do and then offers her options for the activity.  There are a lot of her favorite activities on the screen so it gives her quite a few options and gives her a lot more control over her daily activity.  For example, she can choose Fingerpaint and then she has access to the colors menu so she can choose what color(s) she wants to use during the activity.

I've been told this has increased her interest and focus during the therapy session.  This makes perfect sense because Emma is picking what activity she wants to do so it follows that she would be interested and attend and participate better than a typical choice between two activities a therapist might present her when she might not want to do either one.  It also gives her a chance to tell them when she is done by selecting Stop and then she can pick another activity.  Her attention span is definitely that of a 5 year old!  What a great thing this is because sometimes therapists think 20 min. or more is the right amount of time for an activity and when Emma loses interest after 10 min. they could try and keep bringing her focus back and then say she lacks focus.  Not that this is a knock on anyone but it could happen.  Having access to a lot of choices on the one screen gives Emma the opportunity to communicate that she isn't just staring off into space but that she wants to Stop that activity and select what other one she wants to do.  I have a feeling that this is one of the key reasons Emma is finding the power in using Evie.  

On occasion Emma has come home with notes from school saying she has strung two words together for them during school speech sessions and classroom activities.  She has said Hello Friends during circle time and sometimes selects her morning attendance color choice with Evie rather than the laminated cards.  She also likes to play dress-up with the dolls and often selects the item from her screen to use on the dolls.

I think increased access to Evie is critical at this point and Emma now has access to Evie most of the school day.  When she is in the bicycle and maybe during some activity at gym she doesn't have it because it doesn't makes sense but otherwise she does have access to Evie and her wonderful aide models the use of Evie at all times.  We are also trying to use it more at home and in public.

Yesterday her private PT came out to get her and she said Hi.  When I asked her if she was ready to go back and play she said Go.  This was in the waiting room at the hospital which is pretty busy and kids are running about.  The fact that Emma looked at her talker and engaged in the conversation is a BIG BIG thing to me.  It might not happen again for a while, but I know she has the potential to do this more and more as we continue to model the conversations on her talker for her to learn.

Last Friday she was at a school for an evaluation and it was time to eat.  Her food was in the car so Chris went out to get it.  She said Want Daddy Eat.  She knew Chris went out to the car to get the food and she wanted him back so she could eat.  So great to know she put our entire conversation together and she wanted to chime in on it so without any prompting she strung 3 words together in a matter of seconds!  Just a month ago that could have taken about 15 minutes to get her to do with lots of prompting and likely wouldn't have happened at all without prompting.  Wowza!

We did make a change to the system on "dwell" time.  That is the length of time Emma has to look at the icon before it selects/speaks it.  It is now at 0.4 seconds, down from 0.5 seconds.  She was frustrated having to look at the icon so long and often took her eye gaze away before the 0.5 seconds were up.  That sounds like such a short period of time but it isn't.  It's hard.  I have tried it and it requires a lot of focus and energy and it's hard for me.  I realized that Emma is actually much better at using the device with eye gaze than me and it is humbling to realize that - I don't think I gave Emma enough credit on how much work she is doing to communicate.  Once we changed the dwell time to 0.4 seconds she really took off with talking and even started stringing 3 words together on occasion.  The con to this short dwell time is that she sometimes selects the next item right away in that spot, too.  It's hard to describe, but some screens are for one selection and once she makes it then it moves to other choices and there could be a choice right where she was looking and then she mistakenly selects that one.  Does that make sense?  The frequency of this happening is quite rare overall so we are willing to deal with it for the moment.

It seems like the 0.4 seconds is the right setting at this time.  It does increase the chance she might say something she didn't mean, but when it happens she usually tries to correct herself.  This shows me that there is just so much going on in her head and I can't wait to learn more about what she is thinking.  I can't wait to learn what questions she will have, what jokes or teasing she will come out with, etc.

As Emma's use of Evie starts to increase so has her vocalizations.  She is saying nonsense sometimes.  It's wonderful!  I have no idea what she is saying but she is able to get her breath together enough to string together a bunch of jibber jabber.  And she plays with her voice high and low now.  Sometimes she sings in the car with the music.  And sometimes she is making word approximations.  She says blue or red if we are working with colors.  She says yeah when she wants.  Her speech therapist notes her increase in vocalizations and word approximations, too, so it isn't just me and wishful thinking.  It has been said that use of AAC increases vocal/verbal skills in children and this certainly seems to be the case for Emma.

Emma is starting to communicate more and more with Evie.  We have our ups and downs on when she will use it because it is hard to use an eye gaze communication system or any other alternative to verbal communication.  And she is only 5 years old - she's a baby really.  She has lots of therapies each day and everything requires her to work hard and then there is the extra energy she has to funnel to communication and eating.  Despite all of this she seems to be realizing the power Evie will give her over her own life and is choosing more frequently to engage with others through Evie in addition to her body language.

Our Emma.  She is amazing.  She inspires me.  I am humbled by the way she radiates happiness and smiles every day despite her many challenges.  How lucky we are to have our little sunshine in our lives.

Here is ~4 min. video of Emma using Evie this morning.  She was nice and humored me when I told her I wanted to get a video of her using it to share with others.  Usually Emma clams up when a camera comes out but this time she did say quite a bit.  Almost all of the talk on Evie came from Emma except a couple of times when you see me use my finger to select a choice.  For the In selection when Emma chose crawler I focused a bit on the options because they are new and Emma is still learning that row and the icons are rather hard to make out.  It's hard to listen to myself on this video so please go easy on me if you make any comments ;-)



I know Emma is blinking a lot in the video - she had only just gotten her CIs on and it takes a bit of time for her to warm up to them in the morning.  I could comment more on this, but I won't other than to say that she was on the program she uses after her CI have been on for about 30 minutes rather than the program for the first 30 minutes.  Just know that I have the blinking issue handled.

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.

What did you say?

This past week Emma was cranky.  A bit off and quite whiny.  Since she can't talk it's not a fun state of affairs when this happens because listening to constant whining is not my idea of fun.  I'm anxious for the time when she is better at using her talker - it can't come soon enough.

Last week her SLP and I decided that Emma was making good progress with the words on her talker and it was time to add more.  We added more core words and fringe vocabulary.  Basically, what that means is that when Emma chooses one of the main core works on her screen, the row at the top offers her a variety of fringe words.  She can now say "in" as her core word and the her top row (aka the activity row) gives her the option of saying "wheelchair" "stander" "walker" "crawler" "swing" etc.  We also changed up the activity row for the "want" core words so now she can say "Erica" "iPad" "Mommy" "Daddy" "Julia" "friends" and a few more.  Erica is her personal care assistant at school and friends is just generic to encompass either her friends at school, her friends at home, etc.

Last night I also added in "feel" to the core words.  Her options under feel are "good" "bad" "happy" "excited" "mad" "hurt" etc.  I am hoping working with these words will help Emma tell us when she isn't feeling good and where she doesn't feel good.  She knows her body parts so if she tells me she "feel" "hurt" then we can go to to body parts page and she can tell me what hurts.  This is one of the most exciting things about Emma's talker - that she will be able to let us know what is wrong with her instead of us trying to constantly guess from her whines.  It will be life changing - at least for me even if she doesn't think it is for her ;-)

None of this matters, though, if she doesn't use Evie.  We are finding ways to increase her access to it while at home and are also mounting it on her wheelchair whenever she is in it.  We are modeling the device for her to teach her how to use it.  For example, when people say hi to her we show her where "hi" is on Evie and we push it.  Our goal is to have her look and say "hi" to others independently.  We also show her "go" "bathroom" or "need" "toilet" when it's time to go to the potty.  We do this over and over again throughout the day on our various activities, changing the buttons we push based on what we are doing.

Our efforts must be paying off.  Emma has independently commented in her classroom at school.  For example, during art she has for scissors, markers, glue, etc. without prompting.  She has also used a few other words in her classroom.  This is big stuff.  Especially for my little girl who would prefer to go through life as an avid observer rather than work at communication.

Today, though, I got really excited when she said "hi" to her PT when she came out to get her for her session.  I think this is the first time she independently and self-initiated a conversation!  Then when we went back to the room Ms. Cindy had out and Emma's favorite swing and she got really excited.  She said "in" "swing" and Ms. Cindy promptly put her into the swing.  When her session was over she said "eat" "drink" and I told her she would get her lunch once we drove to her school.  She smiled and then said "need" "toilet".  So we went to the bathroom with the little bitty toilet in it (it's Emma favorite toilet ever!) just before we left.

I think all our focus on Emma's communication is starting to pay off.  I pray these aren't isolated communications from her but rather are the start of lots of chatting with my girl!  I hope one day to catch some of this on video so I can share it but Emma's a tricky one when it comes to cameras.  She loves to get her photo taken and stops everything she is doing when she gets even the hint that a camera or video is around.  I'll have to try some covert video operations to capture her progression with Evie.

I'm so thankful that God is helping make things click for Emma and she is starting to use Evie more. Here's to getting us on a path where whining and us guessing what it could be about are a thing of the past.

Hope

Hope.  I find hope very interesting.

You always want to have hope but the act of having hope can leave you quite vulnerable for disappointment.  We had hope when Emma was little that her CP would be mild.  We had hope that doing some alternative treatments while she was young (for example, HBOT) would prevent her from having to undergo surgeries for various side-effects from her CP.  We had hope that Emma would start talking after she received her cochlear implants.  We had hope that Emma would start sitting or walking or *you name it* because we have seen some of Emma's friends start to do just that.

Although quite a few things I hoped for did not pan out, I do still have significant hope - it's just a more guarded hope.  It's a more patient hope.  It's the type of hope that is open to answers to our prayers that is different than the way we imagined.

This morning we had time before Emma's bus came so I decided to put her in her wheelchair with Evie mounted on it.  We've had a bit of a routine where we will go outside for a walk with Finnegan about 10 minutes before her bus is scheduled to arrive and both Emma and Finnegan look forward to this morning outing.  I had been setting the talker on Emma's tray table while she sat in her ChildRite chair so Emma could request a morning activity - she usually chose the walk.  Lately she was refusing to use Evie in the morning (see this post) so today I decided to change our approach.  I put Emma in her wheelchair with Evie mounted to the chair and left the room for a moment.  While I was gone, Emma said Go a couple of times and was all smiles when I came back and told her I heard her ask to go.  She didn't say walk or outside, but I was happy she asked to "go" so quickly and without any prompting.  And she was so proud of herself - it was written all over her face!

Monday was Emma's first day back to school after a week off.  She has speech therapy on Monday and Wednesday and the session on Monday typically occurs in the classroom and Wednesday is typically a pull out for 1 on 1 work.  The classroom sessions are generally less productive than the pull out because Emma is a pro at ignoring Evie and her therapists when her peers are around.  This week was different, tough.  Her SLP reported that Emma picked a princess magnet game activity to play, paid attention to the game and said multiple {activity appropriate} words spontaneously without prompting!  The words were Go, Frog, Stop, Play and a few others that I don't remember right now.  This is unprecedented expressive communication from Emma!

Expressive, self-initiated communication from Emma.  What Emma chooses to say is appropriate and she uses words in proper context.  It's sporadic but it is deliberate.  It's different than what I had imagined - but it is happening.  And it is OH SO SWEET!

Hope continues to live inside me.

Thankful ramblings

Some days can be long and stressful and I feel like I'm swimming against the tide.  I've had a couple of those days recently but I'm thankful today was not one of those days!  

I'm thankful for:

• Last night Chris went out with a friend and we had a girls night at the house.  Easy dinner followed by girl time in the kitchen when Julia decided to color at the table while I cleaned up the mess.  Emma had her talker sitting on the table and she said she wanted to color.  It was great to hear because I was at the sink when she said color several times.  I taped a page of paper to the table, gave her a crayon and she scribbled a bit before dropping the crayon.  To this minute I still have NO idea where that crayon is....funny how Emma has a way of hiding things on me.  Then she asked to read a book so Julia read one to us.  It was a fun and easy night.  And Emma initiated all the talking on Evie on her own without any prompting!  That is a big accomplishment.  She then went on to cry for about 2 hours at bedtime which brought me back to Earth.....she keeps us on our toes like that!
• Julia is coming along really well with her reading.  She is reading longer books and learning more and more words.  I'm so proud of all the effort she is putting into learning to read at school and then coming home and looking to read 2 or more books again at bedtime.  I love listening to her read in her little girl voice.  I wish I could bottle that little voice because it sure is music to my soul.  And the cuddling that occurs with the book reading makes my heart hum!
• Julia continues to excel at imaginative play.  I was cleaning the play room today and looking for things she doesn't need anymore but I quickly realized she plays with pretty much everything we have.  She is so creative on pulling things from various places - like animals from the farm, her Barbies, and her play food to create a picnic lunch for the barbies in the woods - and using them together.  I love listening to her play with her friends and learning how they are really put a lot of thought and effort into their play time.  
• Emma's been blinking a lot on one of her CI programs lately so we needed to go in for a "tune up."  Since she doesn't talk yet her school hearing team worked with us on Friday to show her how hitting a button on her iPad that I programmed to say "I hear you" would let us know she hears the sound presented in the sound booth.  She is a quick study and figured it out very quickly.  She also giggled the entire 45 minutes.  You would have thought we were on a roller coaster or the tilt a whirl with all the giggles she had!  I'm glad she didn't consider it work and she was able to give us a pretty good read for an audiogram.  Today she had her real mapping session at the hospital and we brought in her iPad.  She did really well again and used the iPad for a good portion of the testing until she decided she was done and laid her head down on it.  Game over ;-)  We got a really good map for both her right and left sides, which is wonderful since she usually needs two different appointments - one for her right hear then another appointment another week for her left ear - due to her fatigue in the booth.  Her audiogram was similar to the one we got on Friday so I feel very confident that it's a good one.  We kept her same map because she is hearing really well but changed the sensitivity of the programs to see what will work best for her without causing the eye blink.  The program we left on (P3) worked well for the rest of today so we'll continue to monitor her reaction.  I'm constantly in awe of how far Emma is coming in her hearing and cooperation in the sound booth.  I remember the early days when I wanted to cry after each mapping session and now they are going really well.  So proud of my girl!

• We ran into a few of Emma's fans while at the hospital.  It was great catching up with them!  If you have to take a child to the hospital the one she goes to is so personal that it takes a bit of the sting out of it.  How lucky we are to have people go out of their way to come over and get caught up on Emma and give her hugs and ask her questions directly.  Today she used her iPad with the My First AAC app while at the hospital (there is no way I was brining her iPad and Evie!!!!) and said Hello and Goodbye and Nice to Meet You to so many people.  It's the first time she has used that so frequently and intentionally.  I liked it.  Maybe all our work with her is paying off.
• Tonight Emma said Mommy (twice!) on Evie for the first time ever!  She says Daddy, Julia and Finnegan all the time.  Never Mommy.  Tonight at dinner she decided she wanted Mommy to feed her.  And she got just what she wanted since she asked!!!!!!  She said a lot tonight and I took a photo of the screen to capture it because it made me so thankful that she is starting to communicate with us.  There is along road ahead of her/us, but at least we are on that road and making our way down it.  Slow and steady wins the race - I just have to keep reminding myself of that.

AAC Week 1 Recap

We've had Evie up an running with Emma for less than a week.  Less than a week.  I have to keep telling myself that because she is doing so well with it.

Overall, Emma is still very excited when we set it up for her to use and we're trying to give her opportunities throughout the day to use it in various circumstances.  I've tried using the eye gaze and it's hard (!) so we want to give her more frequent but shorter duration sessions with it so she doesn't get frustrated.  I'm actually surprised and happy to say that Emma is much better at it than I am - probably because she many of the nuances figured out from using it so much.  She is doing really well when it's just me and her, but is not as interested in using it when Daddy or lots of other people are around which is what we expected.

When the consultant came to the house he was surprised at how far along on the set-up we were.  We were especially happy when he asked Emma what her favorite color was and she said "colors" "pink".  That was a proud Mommy moment ;-)  His visit helped me understand the device more in depth since I was already familiar with  many of the screens.  Two things he did I hadn't known about - there are six numbered buttons on the top of the device that come pre-set with function.  A couple didn't apply to us so he reset the #4 button to toggle on/off the eye gaze tracking.  This means with the touch of an always accessible button we can quickly look to see if the device is positioned correctly to track her eyes.  Right now it is our most used button!  He also reset the #5 button to toggle between pause/active with the eye gaze.  If we are looking at the screen to modify it and the eye gaze is active than it picks up our eyes and moves all about.  This is not desirable and so now we have an easy way to pause and resume the eye gaze for device set-up.

The consultant also showed me how to link some pages - for example there is a great page made up for reading the story Brown Bear and we now linked that to the icon for reading the book Brown Bear - and made really good suggestions on how to incorporate more of the "core" vocabulary instead of programming in so much "fringe" vocabulary.  For meals we are now having Emma say Eat, Drink and Stop in the core vocabulary and the fringe vocabulary has items such as applesauce, cracker, pudding, smoothie, milk, etc.  Previously we were directing Emma to use Eat and the fringe vocabulary of Eat, Drink, and All done under that and it was not idea.  Switching to the core vocabulary coupled with the fringe vocabulary of the cracker, milk, etc. with the Stop core button to mean all done has been good.  I taught this to Emma at snack time on Friday and she told me multiple times that she wanted to eat pudding, cracker no, pudding yes, cracker no.  I kept offering her the cracker even though I knew she wanted her pudding to really reinforce the power of communication for her.  I have to admit that I didn't think she would pick this up so quickly.  Especially since saying "cracker no" requires her to select two icons - the cracker and the no icons.  I thinks he told me 15 things during that one snack and when it was over she clearly said to me that she wanted to "go" "shopping".  Again, requiring her to string together two items.  It was nice to hear she wanted to go shopping and let us have a little *conversation* that I'd love to go shopping with her but we had to stay and clean the house.  This is really fun!  The fact that she is stringing together two words already instead of only one word at a time is really encouraging to me.  I'm looking forward to seeing where Emma goes with AAC and how quickly she gets there.

The eye gaze really opens up her world but it is also limiting.  It has to be placed at a distance of 20-24" from her eyes and in direct line of her vision so we can't just have it sit on her tray table to use it.  We did get a mount for her wheelchair with the device and tried to have it installed the other day but it wouldn't fit with the configuration of her wheelchair.  She has an appointment in two weeks to have her wheelchair changed to the large wheels in the back and smaller wheels in the front so Evie's mount can be installed.  We had the configuration of the wheels in front to give Emma the opportunity to move her chair around a bit with her hands but her arms really aren't that good at moving and so we decided it is much more important to give her consistent access to her talker rather than keep the wheelchair as is with the hope that she might decide to move it.  It will be nice to have a mount for many things, but I'm really looking forward to using it to reinforce communication in public.  I programmed the Greetings line on the talker to say her name, her age, her pets, etc.  Basically, when we are out and people stop to talk with Emma - and trust me, going out with Emma is like going out with a celebrity and everyone stops to talk to her! - she could look at any of that string of icons and say something appropriate.  We do have her OT goals set up so we are working towards a future where Emma might be able to use her hands instead of her eyes to communicate with Evie, but that will likely take some time.  For now we're happy to have the eye gaze option and feel blessed that it is opening up so many opportunities for us to help Emma learn and grow.

Here is a short video of Emma deciding what family member to say "hi" to - notice that she says hi to everyone but Mommy.  She was teasing me which is not surprising at all.  My girl has a silly sense of humor!



Week 1 with Evie was so much better than I thought possible.  I'm starting to see how moving to this system will impact Emma's access to school learning and curriculum in addition to communicating her wants/needs with family and friends.  I'm still praying that she actually starts to talk with her voice instead of AAC but in the meantime we continue to move forward.  

AAC - Start-up

Emma received her long awaited ECO2 with ECOpoint made by Prentke Romich Company (PRC) last week.    There are several posts on this blog about our journey through the Augmentative and Alternative Communication (AAC) process and now that we have Emma's device I thought it would be a good idea to capture our journey of incorporating the ECO2 with ECOpoint into our lives.  For me, the journey into AAC is ridiculously overwhelming and reading posts about other children using these devices has made it a little less overwhelming.  So I've decided to do a series of posts on our journey of learning and using the ECO device.  It'll be a great way to capture Emma's progress and pace of progress and maybe others might learn a bit from our journey, read our story and make some suggestions.

First off, we've named Emma's ECO2 with ECOpoint Evie - short for Emma's voice (EV).  From now on I'll refer to her device as Evie.  Cute, right?  Next off, I'll say that we tried devices from three AAC manufacturers - in addition to the several communication apps we've been using on her iPad over the last 2 years - before we selected Evie.  I'm glad we tried all three because I was ready to select the second one and run with it until Emma's SLP insisted we should test them all.  She was right.  After all the evaluations were completed she wrote a 9 page report on why Evie was the best choice.  The report outlined Emma's testing of the following:

• Single switches (Big Macks, Step-by-Steps)
• Her not surprisingly unsuccessful test of units that use page overlays with digitized speech that requires the user to manipulate the overlays on their own - these are called static display LEOs from what I can tell
• DynaVox V
• DynaVox Maestro
• Tobii C12 with CEye
• ECO2 with ECOpoint

It did not include the results of her DynaVox eyegaze system trial that she had at our local hospital with a different SLP.  It was a nice system but the eyegaze system didn't work as well for Emma's movements as the Tobii and ECO2 which use the same eyegaze camera.  I was a great report and I feel like the AAC assessment was very thorough and reinforced my opinion that Emma is fortunate to be working with such a wonderful SLP in school that specialized in AAC.  The school supports and expertise in our current school district is really top notch.

When we were looking at devices I was mostly concerned about Emma's performance with the device. Unlike our decision on cochlear implant manufacturer to use, I didn't do much research into the manufacturer of the device.  This could have been a big oversight on my part but I'm happy to say that everyone I've dealt with at PRC so far has been wonderful.  They are courteous, respond promptly, and show initiative.  Funding AAC is a bit of a maze and the nice ladies at PRC never tired of my calls to check on our funding progress.  And there were many calls.  I've learned over the last 4 years that when it comes to equipment purchases they rarely go smoothly without me taking an active role in monitoring the process.  When all the approvals came through, PRC called me.  Then they called again to let me know when the unit would ship.  The day after we received Evie our local PRC Consultant called me to set up an appointment to come to our house and help us customize Evie for Emma.  He called me.  Our own PRC Consultant. I didn't know we would have that kind of service and I have to say that my stomach may have done some flip-flops because it excited me so much.  Suddenly the AAC journey seems more manageable.  I read on one of Evie's papers that PRC is employee owned and operated and it really feels that way.  Our PRC consultant will be here tomorrow morning.  I have lots of questions for him and am looking forward to his visit!

But of course I couldn't wait for him to come out to start the device set-up so I met with Emma's SLP yesterday and we discussed some options and ways to set up her device.  Then we programmed it a bit.  We decided on using the Unity 60 1-Hit core vocabulary with lots of the buttons hidden.  This basically means that the screen can have up to 60 icons on it at one time so Emma will be able to say a lot without navigating through a lot of screen.  It also means that Emma will have to learn the vocabulary and get accurate in her eye gaze selections.  For now we have most of the icons hidden.  We've left her some colors, places to go (including bathroom)!, yes/no/good/bad comments, a food selector and a play game selector.  It's a great start.  I was a bit worried that it would be too aggressive for Emma to start with a 60 vocabulary screen.  I initially thought we would start at 45 icons.  But the size difference between 45 and 60 is very minimal and her SLP really thought Emma would be good with the 60 and wanted to start her there.  I love that she believes so much in Emma.  Here is what the home screen looks like.

We also have some Pages programmed in.  One for family so she can call us.  We also plan on adding in some other pages such as books, bedtime routines, etc.  I'm going to discuss this with our consultant tomorrow.

This is a good start.  So far it's been a bit challenging for a few things and I'm glad we started on the set-up because now I have some good questions on settings and such for the PRC consultant.  I wouldn't have had them if I didn't start programming it already.  And Emma's been able to use it the last two days.  So far today she said "yes" during PT which is a big deal because she likes to look at the other kids in the room and ignore the people in her face working with her and the icons are much smaller than we were using during the trial period.  She also told me that she had to "go to the bathroom" and was thrilled when I whisked her off to the potty.  She might not have had to go but she definitely is starting to make the cause/effect connection of that icon selection path and I'm happy about that.  I look forward to seeing her progress towards adding more vocabulary.

There is a great blog post on setting up AAC devices on Adapting Creatively.  Actually, that blog has lots of good posts on many different things but the AAC post I learned a lot from is this one.  Check it out if you are on this communication journey.  It is chock full of good information I wouldn't have though of on my own.