Saturday, April 21, 2012

Detailed Communication Update

Emma has had more than her fair share of evaluations over the last four years.  She has had overall evaluations and individual evaluations for speech, PT, OT, hearing, and feeding.  These lead to areas for improvement, goals, progress to goals, etc.  It's quite tiring as a parent and my strategy for dealing with these is to not really focus on them and instead keep my focus on Emma our precious beautiful child.

We have a very typical family life but lately I've realized that each year I tended to focus on a key area of development for Emma.  Last year it was on her movement because Emma so desperately wanted to move.    She was quite successful and learned to use her crawler to crawl, her gait trainer to walk, and started working on driving a power wheelchair.  This year we continue to build on those skills while we focus on her communication.  Because I so desperately want to hear her "voice" - whether it's communication cards, iPad apps, an eye gaze communication device or her sounds - and Emma is showing more of an interest in getting her voice.

Her team at school is amazing to work with and I am so excited to have them help us navigate the world of communication!  Earlier this school year they used a card communication system, a Dynavox with a head switch, a Dynavox with two switches, and a test of the Tobii Eye Gaze system.  They also started testing the ECO2 from PRC company but it was a short trial because it fell to the ground and broke on the second day.  Let me say that the mount used for the trial will not be the one we will purchase should we choose that device!  It was sent out for repair and our hope is that it will be at the school next week for the test period.  Once we have given Emma a chance to learn and use the ECO2 we will then choose which device to order and then go through the appropriate (and likely long) process of getting insurance to purchase the device.  

We are not only focusing on high-tech options, though.  The main reason is that it is much easier to have a blend of high tech/low tech options while Emma is trialing out devices since she isn't overly familiar with the screens and how to navigate them, custom screens are not all programmed for her activities, and we don't want her to get fatigued too quickly and make communicating harder for her.  So we have implemented a lot of low tech communications that are used throughout her day in addition to the high tech that is used.

We still have the hand signal Yes/No that we use all the time and her team is asking her many times throughout the day to indicate a Yes/No response.  For example, if Emma is on the swings they will push her a bit and then stop and ask her if she wants them to push her some more and Emma will need to indicate Yes/No.  There is also a communication book that Emma has at school with laminated pictures (PECS).  This is used everyday - for example, there is a page with arts and crafts items and during arts and crafts activitites Emma will need to select the tool she wants to use to make the craft such as crayon, scissors, glue, etc.  This helps Emma make a choice, indicate her preference in participation, and helps us reinforce vocabulary.  To facilitate communication with all the children at snack time her SLP added photos of her classmates and is using them to discuss what her classmates are eating and it seems Emma is happy to "chat" at snack.  Colors are also a big focus of her class right now and she has color PECS cards that are used very frequently in circle time, craft time, and individual therapy sessions.  

The huge take-away from all of this is that Emma is taking a more active role in participating in classroom activities.  While many communication opportunities have been available to her all year, in the beginning of the year I would see reports that Emma chose in 1 out of 10 opportunities in the classroom activities.  It would be slightly better in one-on-one sessions in a pull out room.  However, recent conversations have been so exciting because Emma is choosing more than 80% of the time and most times she makes a choice 100% of the time!  This is BIG!  This is REALLY BIG!  

Emma's entire team believes that she is one smart cookie and now we are on a path to really get to know more about her.  Her making choices will allow us to get a better picture of what words she knows, and where she needs a bit more help.  It gives her more control over her activities, her environment, her life.  It is so wonderful to see this change in Emma.  I hope her desire to gain expressive language communication continues to blossom and grow.  

I firmly believe that communication opens a lot of doors for people regardless of their physical abilities and so want this for my little girl.  Thank you to everyone for all the prayers - they are working.  I also want to ask if you would be so kind as to continue to pray for Emma's communication.  We are truly blessed!

2 Comments from readers:

Laura said...

I have that same shirt!!! Looks much better on Emma though :) Cannot wait to watch Emmas communication continue to grow. I think we're in a similar spot with Cody. We've not trialed anything high tech yet so will be anxious to see how the ECO2 goes. Cody will have to do some sort of auditory scan/switch combo and I'm not sure he's there yet. He seems to be selective with his communication partners and I'm not sure that a computer would appeal to him yet.....hopefully someday though.

Anonymous said...

I love this! So much!
Our kids are constantly making progress Kristina. It's sometime slow going, but they are always stretching and amazing us in so many ways. Prayers? YOU BET!!

Ethan has been using PECS at school for the past 2 years and has lots of the same pictures you mentioned: colors, classmates, art supplies, etc. It has really helped him to learn to initiate communication, though he still loves to just throw a good old fashioned tantrum sometimes, too. And as of today, he is learning to use Touch Chat on the iPad. He brought it home from school (we provided the iPad and the school provided the $300 app) and has been sitting on the couch going through all the categories and word choices. It will be interesting to see if he chooses to actually use it for communication or if he'll just treat it as something he likes to look at.

Anyway, I love the pics of Emma. She is just radiant! Love the post, too.