Sunday, September 30, 2012

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.  

Tuesday, September 25, 2012

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.

Wednesday, September 19, 2012

What we've been up to

There are some major updates for Emma.  First off, we received her Eco2 with EcoPoint today!  I may or may not have looked out the window and paced the sidewalk in front of our house waiting for the FedEx guy.  We are so excited that Emma now has a voice that can't be taken away from her.  It's her very own personal talker - her voice.  I think something this important may need a name instead of her talker.  Maybe we'll call her EV (Evie) for Emma's voice.  When Emma saw what I unpacked from the box she giggled and giggled and crawled over to it.  She reached out her hand and touched it and made noises to me that I interpreted to mean she is so happy to have it back.  This is amazing for so many reasons, but the most important one is that Emma actually likes to use this talker to communicate.  We tried so many different methods and Emma remained indifferent.  Her speech therapist really got it right when she told me that it is the child that actually selects the device they want to use as their voice.  Emma sure did!

The other update is we finalized Emma's IEP!  The main change is we moved her from the morning pre-school classroom to the afternoon pre-school classroom.  This class is a bit faster pace and more academically challenging for her.  Also, this class is only held 4 days/week instead of 5 days so we will get some time back to devote to our field trip adventures.  Going from 5 days to 4 is a big deal for her therapists since her IEP has a lot of therapy time scheduled and they are worried about her missing too much of the typical classroom time.  One option we are exploring is me taking Emma to school on her day off for some therapy appointments only.  I'm confident we'll have it all worked out soon.  I'm thrilled she will be challenged a bit more academically while working with her same aide, teacher and team of therapists.  It takes Emma months to warm up to new therapists - she tries to skate through sessions until they catch on that she knows more than she is showing them.  None of that will be happening this year because they know more about her strengths and weaknesses.  Already she has been demonstrating how much she knows by answering correctly 100% of the time in her last three speech sessions.  Way to go, Emma!

Julia loves school and has settled into the new routine of 1st grade.  When Chris drops her off in the morning she wants him to move along on his way and doesn't want him to hang around for 5-10 minutes like the parents do in kindergarten.  She started taking the school bus home from school a few days a week and getting home about an hour earlier than she comes home with Chris.  The bus picks her up at school and takes her to the high school where she boards a different bus to her stop near our house.  I was a bit worried about the transfer of busses but she seems to be an old pro at it by now.  Another first grader in her school takes the same first bus and they like to sit together.  It's fantastic she has a friend to ride the bus with considering she goes to a private school quite a bit out of our school district.  The whole bus adventure is working out quite well.  Julia also stared religious education classes and she really loves it.  When I asked her what about it she loved the best she told me it's when she gets stickers.  Aha...it's so easy to please a first grader!  Our neighbor is teaching the class and I'm the aide so she also thinks that is lots of fun to have us in there with her.

We went away this past weekend to a wedding.  It was lots of fun!  The girls came to the service with us and loved looking at all the girls in their dresses.  My niece joined us on the trip and she watched the girls while we went to the reception.  They loved hanging out with their cousin and we really enjoyed the night out.  I think we'll have to do it more often!

Tuesday, September 11, 2012


While looking at Emma at church last week the idea that she needed a new look popped into my head.  Haircuts aren't usually the inspiration I take away from Mass but from that day on I kept thinking about a new haircut for Emma that would let her wear her hair down instead of always in a ponytail.  Not that she didn't look ridiculously adorable with the ponytail on her head.  Oh, no, it's just that with her about to turn 5 years old it was time to check out a new hairdo.  Plus, she has only ever had about 1/2" of hair cut from her head.  Makes me wonder what is going on with her hair???  Is her body so focused on trying to move that it decided to completely forgo hair growing?  Hmm....

For the new "do" I knew it would have to be easy to maintain (Emma HATES having her hair fussed with) and out of her face.  It also had to have enough substance to clip her CI barrette onto because losing them would cost us pretty much the equivalent of a down payment on a big house!  I also wanted to be able to go back to a bit of a pony on the head if I started getting nostalgic ;-)  A haircut like this should be easy peasy, right?

After thinking about it for a while the sun came out and the weather is picture perfect and I decided TODAY, I have to cut her hair today!  So I took out my hairdresser scissors and brushed Emma's hair and gave her a mirror to look into all the while holding my breath because I'm really not all that good with hair.  I mean, I don't even own any hairspray and my most used hair product is an elastic ponytail (it only just now, as I'm typing this, occurred to me that this could this be the reason Emma sported a ponytail for the past 4 years!).  

I started snipping all the while telling myself I could cut her hair as good as anyone since Emma refuses to keep her head still - and besides, if I messed up a bit it wouldn't matter since her cute smile and sunny disposition could easily detract from a bad haircut.  Emma thought the whole process was hysterical and laughed and laughed and laughed and then laughed some more.  She moved her head back and forth and all around and tried her best to make her haircut as uneven as possible.  Seriously - her sense of humor is a off center like that.  And when I started cutting her hair she burst out into hysterics and caused the dog to come over and add a bit more action to the head banging.  Which was exactly what I didn't need.  But I couldn't be swayed off course and I'm happy to say that I prevailed.  Emma laughed continuously and when we were done and she looked in the mirror she was all giggles and smiles.  I tried to see if the top would still go into a ponytail but she would have none of it.  It seems my girl was ready to let her hair down and ditch the ponytail.  Who knew?

And before you ask - yes, it looks just as adorable with a cute little clip holding her hair off her eyes as it does leaving it down.  

Monday, September 10, 2012

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.


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.

Tuesday, September 4, 2012

World Cerebral Palsy Awareness Day

Today is the first ever World Cerebral Palsy Awareness Day!  I'm so happy that worldwide people are coming together to talk about CP because there are over 17 million people worldwide effected with CP and a further 350 million people closely connected to a child or adult with CP.  To put that number into perspective there are just under 315 million people in the USA so there are more people in the world connected to a child or adult with CP than there are people in the entire US!

Emma and our entire family are included in these figures.

Emma has CP and she works it well!  Even though it effects all her motor skills from sitting, standing, walking, talking, eating, it DOES NOT effect her smiling or laughing skills.  Boy, can this girl smile and laugh like no other!  Having a moderate to severe form of CP means that Emma is usually going through life with a partner by her side to help her with mostly all daily activities and this works well for her because she does not like to be left alone at all.

CP has brought so many amazing people into our lives, allowed me to love deeper than I ever imagined  and seeing Emma work to achieve milestones so many take for granted has inspired me to work harder and be a better person.  Today I ask people to look a bit beyond the disability and see how Emma and others like her are changing the world for the better!

The theme for this year is "Change my world in 1 minute."  So, I'll take my minute to say all offers to babysit both girls so we can get a few hours off for a date will be immediately accepted :-)

Sunday, September 2, 2012

Dear Mrs. Obama

A year ago the head of the Brendan B McGinnis cCMV foundation asked parents to write letters to Mrs. Obama to raise awareness of CMV. The letters were compiled but not delivered until today.  Today the letters from ~100 families were hand delivered to President Obama by Tracy McGinnis where she met the President and gave him an overview of CMV with her sons - including Brendan who is severely affected by cCMV.  President Obama said he will read each letter and I'm so proud my letter and a photo of Emma was included in the information Tracy gave our President.  

In case you are wondering what I said, here is my letter with a couple of items edited out for the web because some information is still best left off a public blog ;-)

Dear Mrs. Obama,

Today I am writing to tell you about how a seemingly insignificant virus has changed my life.  Cytomegalovirus, or CMV, is a very common virus and many times the symptoms are similar to the common cold.  However, when a woman who is pregnant gets effected by CMV it can cause a variety of problems with the unborn child.  I had never heard of CMV, was not counseled on it during my prenatal visits (where I was advised about toxoplasmosis and other obscure viruses), and did not even know I had contracted CMV until my baby was 3 months old. 

Emma had an uneventful birth.  She was a planned pregnancy and I attended all my prenatal visits.  I did not drink, smoke or do anything that could harm my baby.  I had gone to college, worked several years, completed a graduate school program, met and married the man of my dreams, had my first child and was very excited about my second baby.  I was so excited to find out she would be a girl - I would have two girls - sisters!  I love the bond that sisters have and was so happy to finally meet my little baby Emma.  So when we found out she was deaf when she was 6 weeks old we thought it must be due to genetics.  Upon going through the process of determining the cause of her hearing loss we found out the cause was from CMV.  We found it out on Dec. 31, 2007 and promptly went home and googled CMV and baby and I can tell you it was a horrible way to ring in the new year.  There were no positive messages about the impacts of CMV on babies and many references to death and severe disabilities.  I sobbed for hours and kept looking at my baby who I thought was perfect in every way and thought it must all be a big mistake, that the virus CMV was not the cause of her hearing loss.

Fast forward to today.  Emma is now 4 years old.  She has a loving supportive family.  She also is deaf and has cerebral palsy that effects every part of her body.  She cannot sit independently, hold her head up for prolonged periods of time, crawl, walk, talk, feed herself, give herself her own bottle.  She can smile, giggle heartily, and melt your heart.  She is a smart little girl who knows her colors, animals and many other things.  We are working hard to give her a communication system so that she can tell us more of what she knows! 

I don't know what the future holds, but I sure do know that she is one loved little girl.  Her father, her sister and I include her in all our activities.  But, her direct care needs are high.  I no longer work and it is very hard financially.  I worry constantly about all the political discussions about health care and cutting back on Medicaid funding.  We pay about $X/month for health insurance and it does not cover therapy for chronic conditions (cerebral palsy is, not surprisingly, considered a chronic condition) and it excludes all hearing coverage including cochlear implants.  Emma has bilateral implants that she uses to hear and they require maintenance and auditory therapy.  Emma is making a lot of progress with physical movement, but it is a constant battle with insurance to obtain the equipment she needs to lead a better quality of life.  While I love my daughter with all my heart, I would love to prevent other families from having to see the effects of CMV on their child and from the sleepless nights worrying about their well being and how to pay for their care.

I imagine that when you were going through prenatal visits you had not heard of CMV and it is by the grace of God that you did not find out about it when your baby was 3 months old and not meeting her milestones.  I know we can do a better job of educating women about CMV and how they can prevent the leading cause of non-genetic hearing loss and cerebral palsy.  More children are affected by CMV than spina bifida, fetal alcohol syndrome, or downs syndrome but yet people are still relatively unaware of the effect CMV can cause on their unborn baby.

Please help us spread awareness of CMV.  Please continue to fight to keep Medicaid available for our disabled children. 

Thank you for your time and consideration.  I'm attaching a photo of Emma for you.  She is my hero.  If you are ever in the Philadelphia area I would love for you to meet her.  I know she will forever touch your heart.  You can reach me at:   My email is

Best Regards,

Kristina , Mom to two beautiful girls, one severely impacted by CMV