Apraxia Awareness Day

Today is Apraxia Awareness Day!

Apraxia is among the most severe speech and communication problems in children.   Affected children have difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw, and palate that are necessary to produce clear, intelligible speech.  Callie's case is considered severe.  While some days this gets me down, lately I have been filled with hope about the future.  

I recently joined a Facebook Group for parents of children with apraxia which has over 10,000 members!  We are clearly not alone on this journey.  Other parents are regularly posting videos of their children showing their progress.  The video below caught my attention.  Addison is an adorable 4 1/2 year old girl (one year older than Callie).  She has severe apraxia (like Callie).  She has speech therapy 3 times a week at school and 2 times a week privately (like Callie).  She had zero words until she was almost four (like Callie so far).  After seeing a SLP who specializes in apraxia, she made phenomenal progress in just 9 months (we are on a waitlist for a SLP who specializes in apraxia!).    

I am so happy for Addison's family and will continue to hold out hope for ours!

Happy Nappy

Callie still takes an afternoon nap.  We wish her a "happy nappy" and often sing Happy Nappy to the tune of Happy Birthday when laying her down.  We have a web cam in her room and have noticed lately she prefers to play during half, sometimes all, of her nap time.  The other day my heart melted as I watched her hug and kiss her favorite little blue dog (affectionately known as "blue dog" because we are creative like that).  I know I am a little biased, but this girl is adorable.

Speak For Yourself

I am happy to finally post an AAC update!  In December I wrote about how we were entering the world of Augmentative and Alternative Communication and had chosen a DynaVox Maestro as Callie's first speech device.  I was very excited to receive the device and get started right away, but it unfortunately ended up being a bust.  I was going to write and tell you all about the issues I felt the device had as well as how we were not treated well by the rep, but instead I will keep this post positive and just say we moved on and found a far superior solution.  :)

I decided to convert my iPad into a speech device for Callie and focused my energy on researching various speech apps.  I had been following a special mom blog called Uncommon Sense and was intrigued by the app she chose for her daughter called Speak for Yourself.  While looking into other apps I kept going back to S4Y.  This app is different.  It was designed by two SLPs who have extensive knowledge of AAC devices and implementation.  They saw a need for a different type of speech app and created one with unique features.  The main screen of S4Y consists of 119 of the most common core vocabulary words.  Then each of these buttons links to a screen with additional related core words as well as personalized, programmable vocabulary.  The core words never change position.  This consistency is so much better for motor planning which can eventually increase the users rate of speech as they grow more familiar with where the words are located.  The app also has a no duplication feature.  Having only one way to get to each word is also much better for motor planning.  Finally, it takes no more than two touches to get to any word!   After programming the Maestro, I have a new appreciation for these features.  It really is an amazing app.  I "liked" the Speak For Yourself Facebook page and quickly realized the ladies who created this app are amazing too.  It didn't take long to figure out helping nonverbal children is their passion.  

About a month ago we downloaded the full version of S4Y (by the way, a free lite version is available and I love how it was possible to try it first before committing).  In only took me a day to program the app for Callie.  It was so, so easy.  I spoke to Callie's preschool teacher and SLP at school to let them know about our chosen app and ended up going in to give them a quick tutorial.  They were very open to using it and intrigued by its core word concept and unique features.  I started sending the iPad to school with Callie after only exposing it to her for a few days.  I was so incredibly happy to learn she did great with it the first day.  Her teacher let me know Callie was proud to be able to tell everyone her name and "I'm using an app called Speak For Yourself to help me talk."  She was also able to participate in circle time by saying it was sunny that day when they spoke about the weather.  A highlight was when she had the family screen open and after seeing Owen's picture, one of her therapists asked her who Owen was.  Callie pressed a button to say "I love Owen."  :)  Finally, during story time I guess she was pressing some of the buttons and they had to tell her to please be quiet.  LOL... Callie has never in her life been told to be quiet!!  Funny, but this made me so happy.  

So our AAC journey stalled out in the first couple of months, but we are rolling now thanks to our iPad and Speak For Yourself.  Callie is beginning to use her device intentionally.  The other night while eating dinner she motioned for her "talker".  I propped it up next to her and she pressed the Help button.  She had a piece of food stuck in her mouth and used her device to ask for help!  Today she was signing something, but I couldn't figure out what she was trying to request.  I asked her if she could tell me with her talker and she pressed the Bedroom button, meaning what she wanted was in her bedroom.  Then I figured out she was signing Bear... She wanted one of her teddy bears!  After that I quickly opened up and showed her the button for teddy bear and she is now using it instead of signing.  I just love seeing how she is catching on to this alternative form of communication.  

Here she is the first time we handed her the iPad with S4Y.  She was immediately interested:

FYI, for anyone who is interested I chose a protective Gumdrop (Drop Series) iPad case.  The case seems very protective and although it adds weight to the iPad, it is much lighter than the DynaVox and Callie is able to easily carry it around.  And we chose pink, of course!