Friday, February 6, 2015

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


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. 

3 Comments from readers:

Anonymous said...

WOW Emma, keep going girl!

Fran Gaspari said...

Hello, Emma, my name is Fran. I heard all about you and how smart you are from your grandmom, Marge.

My youngest daughter, Ashley and your cousin, Mary are on the same cheerleading team and they were competing in Rhode Island last weekend. They didn't win, but they put on a good performance.

I couldn't wait to get home and visit your Mom's blog. I am very impressed with the progress you are making and I look forward to getting to meet you some day.

BTW, you should see how proud of you your Grandmom and your Aunt Maura are when they talk about you.

Anyway, goodbye for now, and I will keep you and your family in my prayers and thoughts...!!!

Thanks, Fran

Nicole said...

I know this post is two years old but I really appreciate all the information and the big picture story. I would REALLY like to get my son Kaiden (almost 4) started with a trial. I am CERTAIN he would do so well with this. But I also know I have to guard my heart from being overly hopeful. We have other equipment (for mobility) and I know it's always a slow uphill battle to learn and use it. Thanks again for sharing.