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. 

Friday, December 12, 2014

On parenting

I love being a Mom.  Actually, I love, love, LOVE it.  It's the most wonderful and hardest job I've ever had.  Among my goals as a Mom is to raise girls that have good self-esteem, are curious about the world around them, and leave the world a better place than they found it. 

Lots of times I don't really know if I'm doing this Mom job right or not, so my approach to motherhood is that I just go with my gut on hard situations and decisions.  I find my gut has never let me down even if it tells me to do something I think is a bit curious.

This week Julia had her school book fair.  She has become a voracious reader the past 18 months and I've been borrowing most of the books from the library.  However, there are certain books she likes to read over and over again and she wants her very own copy for her bookshelf so it's there whenever she wants to read it.  I completely understand this since I love little more than having my nose planted in a good book.  We talked about her class visit to the book fair and decided she would take some money from her piggy bank and buy her books.  This isn't because we didn't want to buy her books, it's more because we are teaching her about the value of money.  We put the money in an envelope and sealed it up.  There were several bills and a lot of change. 

Judy Blume is her current favorite author.  I loved Judy Blume as a child and find it enjoyable to revisit her books.  As expected, Julia came home from school the day of the book fair full of energy and talking a mile a minute.  She showed me the Judy Blume books she purchased and told me she also bought a book for Emma.  A book for Emma!  That she purchased with her own money. She made sure to tell me and Emma that it wasn't a Christmas present because she already bought and wrapped that at the school holiday fair.  No, this was just a book she wanted to buy Emma because she thought she would like it.  And Emma grinned from ear to ear when she showed it to her.  It's an early reader book and is about a girl that rides a horse and Julia just knew she had to get it for Emma.  She didn't bat an eyelash about spending her own money she took from her own piggy bank on the book.  For her sister.  Instead of buying the two books by Judy Blume that she wanted.

There was a bit of a wrinkle, though.  Julia was a few cents short for the two books mostly because she decided to bring coins instead of a bill for the last dollar and didn't bring quite enough coins to add up to a dollar.  So she put the books on hold and asked Chris at the end of the day if he could go with her to purchase the books and lend her the extra 10 cents or whatever it was and of course he did.  While there he decided he wanted to buy her a book and so she was able to get the second Judy Blume book.  It's not unusual for Chris to buy a book for the girls at the book fair but I don't think Julia thought of that because she was genuinely thrilled about it. 

My heart feels full in these moments.  The moments when I realize my little girl cares so very much about her sister that she decided on her own to buy her a book from the book fair just because she thought she would like it.  When she wasn't selfishly thinking of how many books she could get only for her and how she realized in the moment how much fuller life is if we share.  It's moments like these when I say a prayer of thanks to God for bringing my two special little girls into my life.  And it's these little moments that make me feel like Chris and I are doing a pretty decent job at this parenting gig. 

Monday, September 22, 2014

Fall Overview

Today is the first day of Fall.  It's my very favorite season.  I just love the chill in the air, the cozy feeling of a sweater in the morning, the availability of pumpkin spiced coffee, the changing leaves.  I don't enjoy the shorter days or the hectic schedule that comes with the back to school scene. 

This year both girls are in full-time school.  Julia started third grade and she is getting so very mature.  She is turning into a bookworm and devouring books at an astonishing rate.  It makes my heart sing to catch her cuddled up on the couch with a book in her hand or have her beg to stay up a few more minutes so she can read just a little bit more.  She still has a silly side and is allowing that to come out in public more often.  It's nice that she is letting the world see a bit more of her captivating personality instead of saving it for home.  This year she continues her Irish dancing and is adding in violin lessons at school.  Seeing her leave two mornings a week with her backpack and her violin makes me smile - it's a seriously cute site!

Emma is in first grade at our local elementary school.  She has a great team helping her succeed in a mainstream setting.  Some days are going great, some days she isn't interested in participating.  That is our Emma.  With the exception of her speech therapist her entire team is new.  Emma takes a LONG time to adjust to new people.  I'm praying that she starts to settle in soon and show them what she knows.

I continue to focus on getting myself in the best shape of my life and that means I've been running and taking classes at my gym more often than not.  With the girls back in school it leaves me some free time each day to get in a workout.  I'm even strongly considering doing a triathalon with Emma in May.  That gives me more than enough time to prepare.  Emma loves joining me in my workout sessions.  She is a great little motivator when it would be easier to cut a workout short.  I also have a neighbor who joins me for the evening and weekend workouts.  I love having a partner to workout with as it pushes us both to go a bit further or faster or workout on a day we would rather skip.  

We purchased a new bike trailer for Emma and she loves it!  I'll do a review on it soon, but for those who are wondering it is the Chariot Cougar I and a link for it is here:  http://www.rei.com/product/867690/thule-chariot-cougar-1-stroller-with-strolling-kit. The verdict is still out on how long it will be before she outgrows it, but it is working for now.  I'm planning on doing a 20 mile bike ride to fund raise for Cystic Fibrosis in a few weeks and was hoping to trail her behind me but the lawyers associated with the even aren't keen on that idea.  Luckily, the triathalon I'm training for is all ability friendly.  For more information on it, check the details out here:  http://gotthenerve.org/race-information/

With the girls back in school and *mostly* settled in, I've decided to look for a part-time job with flexible hours so I can still be available to drive Emma to appointments and therapy sessions and consult at school as necessary.  I found a few positions that really interested me but I might not have interested them enough.  I am confident that when the time is right a job will come along.  We are also still navigating the real estate market.  We put our house up for sale a few months ago when our tenants moved out but so far we haven't had any offers.  We will likely put it up for rent again if we don't get any offers soon. 

And I'll leave you with a photo I snapped last week after Emma's horse lesson.  This was at the end of the half hour session.  She did the best riding I have ever seen last week and after a full day of first grade at that!  My girl never ceases to amaze me.

Wednesday, July 16, 2014

Learner's Permit

Emma has been spending a lot of time in her power chair now that we have the fancy new minivan to help transport it.  She is getting really good at driving it and I've started to let her drive herself around indoors in areas where there is a lot of room - like Target, hospitals, the mall, etc.  These are harder areas to navigate since there is not as much room for error as there is with the great outdoors and Emma is rising to the challenge.

Here are some videos taken of her driving.

The first one is from April and we were in Target.  You can see she isn't driving much and had a harder time hitting the switches in her head rest to move the chair.  We adjusted the head rest a bit and it helped her get better with driving.


The second and third are of her driving in the hospital hallway while Julia was doing a physical therapy session.  As you can see she is doing much better and is interested in getting up close to things and touching them.  In the one video she stopped at the wall and touched it and the railing.  She is very curious about touching things since she now has the power to do that in her power chair.  I had no idea she wanted to touch so many things or I would have had her touching things before!



I have more videos of her outside but the computer is slow today.  Right now we are at the point where she can drive from the back of our driveway to the front.  This is major progress.  She also has been driving around outside near the kids when they are playing without running them over (mostly....I keep the kill switch close at hand to ensure no casualties!).  The one thing she keeps wanting to do is drive out in the street so we are working on teaching her no street.  It's funny - she is going through the same stages using her power wheelchair that toddlers go through when they start to walk.  They bump into things and learn how to avoid bumping into things.  They try and run in the street and {hopefully} learn not to go in the street.  They run away when parents tell them to come here and Emma is doing all of this.  When it was time to come in the other day and Chris told her to drive to the back of the house Emma drove in the other direction because she didn't want to come in!  And she gets mad when we take control of the chair to move her somewhere she doesn't want to go.  Emma is starting to get the hang of navigating herself in this world and it's so wonderful to see!

Of course, when there are people to be watched she often comes to a dead stop to observe all the going ons but even that is starting to get better, too!

Wednesday, July 9, 2014

Warp Speed

Where to start???  Maybe I should update the header to reflect the scorching temperatures we are seeing now rather than the blizzards we had in the winter?  Not tonight...

This spring flew by at warp speed.  Here are some highlights:

Julia made her First Holy Communion and we had a gathering of friends and family at our house afterwards to celebrate the big day.

Julia's softball season and Emma's baseball season ended on high notes.  Both girls loved playing with their team and enjoyed all the action associated with it.  They also enjoyed the snack bar at the field, as did nearly all the other children that attended games from what I could see!

Julia completed 2nd grade and is now officially a 3rd grader.  That time sure is going by fast!  So fast, in fact, that I didn't get an individual last day of school photo - gasp :-)  I did manage to capture a last day of school with one of her best buddies while they were all smiles.  Her buddy is moving to a different school next year and the day turned to tears since they will miss each other.  We assured the girls that we will continue to plan play dates and have had a couple including a sleepover already.  

Julia started making her "special desserts" after dinners.  One night she made strawberry shortcakes and it quickly turned into some fun with our food.  I love silly second - oops, third! - graders!

Emma graduated from Kindergarten.  She will start 1st grade at our {more} local school in a mainstream classroom and will have her language arts and math classes with the children in the learning specialist classrooms.  It covers the same curriculum as the classroom but goes at a slower pace which will allow more time for Emma to hear and process the information through her CIs and then respond at her slower pace due to her slower motor control.  We are praying that her 1:1 aide will be hired by the district to work with Emma again, but that is very much a prayer at this point in time.  Emma did a tour of the school and met the learning specialist teacher and told us that she is "excited" about her new school.  Emma is doing well with telling us her feelings on her talker - and that has me excited!

We found out that the tenants that were renting our old house bought a new one.  We decided to list the house for sale again in the hope that are hoping for a quick and uneventful road to a sale and settlement.  So far, it's not as quick as we hoped but we are still optimistic.

I ran a 5K!  Chris loves running and has been asking me for a couple of years to start running so he could cheer me on at the finish line.  This year I have been focusing on my physical health and decided to go ahead and put aside my hate of running and surprise him by running a 5K race as a Father's Day present.  I used the Ease into 5K program that is an app for my iPhone and only told him about it a week before the race.  He didn't believe me at first and was really excited when he realized it wasn't a joke.  After running for about a month I joined up with my neighbor and we try and run together since we run at a similar pace.  We entered and ran the race together and probably had the biggest cheering section as our families came out to cheer us on!  The girls joined in the fun by participating in the children's race that went off before the 5K.  It's was a lot of fun and I'll probably enter another race in the Fall when the weather is a bit cooler.

We had the opportunity to go to a Phillies game with our support group from the hospital.  We were able to spend some time on the field and meet a few players and talk with our host, Ryne Sandberg and his wife Margaret.  They were so nice and easy to talk to and it was an amazing opportunity and fun night out!  The Phillies won in extra innings - 5 extra innings to be exact.  Needless to say we didn't stay for the entire game but were happy to hear we won when we checked in the morning.

We have also been busy checking out a couple new exhibits at the local science museum, attending summer parties, a fundraising event for a local charity, a family wedding and a couple wedding showers, along with spending long nights outside listening to the neighborhood children play and giggle and ask if they can stay out just a little bit longer.

Yes, our life is full.  No wonder I haven't sat down and updated this blog!  We are hoping you are having a similarly fun summer!