I wrote a glowing post (on Thursday) of how Emma is doing so great with Evie at home and school and that very same day she came home with a note saying they want to talk about ways we can get her to use Evie more at school because they didn't think it was frequent enough. I guess the note did take the wind a bit out of my sails for a moment before I realized the likely cause is musical therapists rather than Emma's ability to use her device. I know how far she has come in using Evie in the last 6 months. But still......comments like that might make me waiver for a moment.
I immediately recommitted to noticing how she used the device over her 3 days off - Friday, Sat., Sun.
On Friday - immediately after breakfast finished up and she finished on the potty - I asked Emma what she wanted to do. She told me 3x she wanted to "eat". This really confused me since she had just eaten her typical quantity of breakfast and I wanted to get on with the day. Our method to using Evie is to reinforce Emma's request by giving her what she asks for when possible and since we didn't have much planned I went ahead and brought out some more food for her to eat. She happily gobbled it all down. My mind was blown! I mean, I thought for sure she was done eating and ready for fun and she asked to eat by mistake. No mistake, she wanted more to eat and I'm so glad I listened. Then she asked for a drink and downed an entire cup.
Watching the crowds at the competition
Ummm....I guess I can't always read her mind. Good thing we have Evie! She then asked to "go" "outside" "in" "bike". So she went for a bike ride and loved every minute of it. She also used the device as she would typically for the rest of the day.
On Saturday we visited my Aunt at a nursing home and while in the halls she used Evie a few times. The halls were very busy and it surprised me to hear her talk - and unprompted at that! She only said a couple of things but they were appropriate and it is very good progress for her to use it in public.
Sunday was busy and Emma didn't have as much access to Evie as she typically would. Some days are like that - the fact is life is life. Raising Emma is a marathon not a sprint and one day without a lot of access isn't life changing yet. She isn't a consistent enough user of Evie yet to make her miss it and we are still able to use her Yes/No answers and her eye gaze to communicate effectively. The simple fact is that some of the low tech communication methods are just as important as the high tech method because they allow us to communicate regardless of the environment or situation. I believe not having access to Evie at all times will be a big issue at some point in the future and I am ever hopeful that will happen sooner rather than later. Once that happens we will try our best to not let her go a good portion of a day without her device.
Emma's use of Evie is getting both more frequent and accurate indeed. She uses it - unprompted - more and more at home. I know she will eventually transfer this skill to school like she does all her other skills. I'm more than willing to wait.
Long post alert! I've been asked by a few people recently to update on Emma's progress with her talker so I'm making this pretty detailed for their benefit - sorry to those who would be happy with the cliffs notes version.
Recently Emma has increased her use of Evie. It's been about 6 months since we received and focused on using it for communication and I'm happy to update that she is starting to engage with people unprompted and is stringing together several words at a time on her own. This is HUGE. She doesn't do it all the time but when she does my breath catches. In-depth communication is something I want for Emma so badly.
Emma seems to know that 90% of communication is non-verbal and she rocks the world of non-verbal communication. The work of using a communication system generally doesn't seem worth her effort when she is with me or Chris since we can read her like a book and figure out what she wants relatively easily. With other people, too, she can get most of her wants/needs met through her body language and she is so darn cute that people bend over backwards to try and figure out what she wants and give it to her.
I feel that we are blessed that she is so good at non-verbal communication but her wants/needs are getting more complicated as she gets older and having a more direct mode of communication will help minimize some of the frustration she is starting to encounter.
Her screen is still set up with the core vocabulary on the main page with some of the vocabulary hidden. This gives her a chance to train her eyes for accuracy in communication and also gives her many of the words that she, as a pre-schooler, would use on a daily basis. She is great at using the eat and drink core words. In the fringe vocabulary on the activity row for these we have items such as ice cream, yogurt, pudding, cracker and milk, smoothie, juice. I find that Emma is often stringing the two words together - for example, Eat Pudding - rather than just selecting eat. She is getting really good at this one because pudding is a favorite food of her and she knows if she asks for pudding there is about a 50% chance she will get it and be able to skip the main meal if that is what I'm feeding her. The chance of getting pudding gets closer to 100% if she says Eat Pudding Please. My girl likes her dessert!
A few things Emma is doing now is saying Please a lot. She is quite polite and she uses is appropriately. For example, she might say Play Please or Drink Please. If she seems to want something and we can't/won't give it to her - for example, she wants a drink but it's not a time when we can stop for a drink and so I tell her she will have to wait a bit - she will then say Please a couple of times and smile. I love this.
In the Need activity row we have Hug, Kiss and a few others. Sometimes when she is upset she will say Need Hug or Need Kiss. I melt when this happens. Seriously melt. And of course she gets more hugs and kisses than the million she is showered with every day anyway just because she is so very loved.
We programmed in a few pages for school. There is a circle time page that offers her an opportunity to engage with her friends and make some selections for their circle time routine. We also added a PT/OT page where she can select what activity she wants to do and then offers her options for the activity. There are a lot of her favorite activities on the screen so it gives her quite a few options and gives her a lot more control over her daily activity. For example, she can choose Fingerpaint and then she has access to the colors menu so she can choose what color(s) she wants to use during the activity.
I've been told this has increased her interest and focus during the therapy session. This makes perfect sense because Emma is picking what activity she wants to do so it follows that she would be interested and attend and participate better than a typical choice between two activities a therapist might present her when she might not want to do either one. It also gives her a chance to tell them when she is done by selecting Stop and then she can pick another activity. Her attention span is definitely that of a 5 year old! What a great thing this is because sometimes therapists think 20 min. or more is the right amount of time for an activity and when Emma loses interest after 10 min. they could try and keep bringing her focus back and then say she lacks focus. Not that this is a knock on anyone but it could happen. Having access to a lot of choices on the one screen gives Emma the opportunity to communicate that she isn't just staring off into space but that she wants to Stop that activity and select what other one she wants to do. I have a feeling that this is one of the key reasons Emma is finding the power in using Evie.
On occasion Emma has come home with notes from school saying she has strung two words together for them during school speech sessions and classroom activities. She has said Hello Friends during circle time and sometimes selects her morning attendance color choice with Evie rather than the laminated cards. She also likes to play dress-up with the dolls and often selects the item from her screen to use on the dolls.
I think increased access to Evie is critical at this point and Emma now has access to Evie most of the school day. When she is in the bicycle and maybe during some activity at gym she doesn't have it because it doesn't makes sense but otherwise she does have access to Evie and her wonderful aide models the use of Evie at all times. We are also trying to use it more at home and in public.
Yesterday her private PT came out to get her and she said Hi. When I asked her if she was ready to go back and play she said Go. This was in the waiting room at the hospital which is pretty busy and kids are running about. The fact that Emma looked at her talker and engaged in the conversation is a BIG BIG thing to me. It might not happen again for a while, but I know she has the potential to do this more and more as we continue to model the conversations on her talker for her to learn.
Last Friday she was at a school for an evaluation and it was time to eat. Her food was in the car so Chris went out to get it. She said Want Daddy Eat. She knew Chris went out to the car to get the food and she wanted him back so she could eat. So great to know she put our entire conversation together and she wanted to chime in on it so without any prompting she strung 3 words together in a matter of seconds! Just a month ago that could have taken about 15 minutes to get her to do with lots of prompting and likely wouldn't have happened at all without prompting. Wowza!
We did make a change to the system on "dwell" time. That is the length of time Emma has to look at the icon before it selects/speaks it. It is now at 0.4 seconds, down from 0.5 seconds. She was frustrated having to look at the icon so long and often took her eye gaze away before the 0.5 seconds were up. That sounds like such a short period of time but it isn't. It's hard. I have tried it and it requires a lot of focus and energy and it's hard for me. I realized that Emma is actually much better at using the device with eye gaze than me and it is humbling to realize that - I don't think I gave Emma enough credit on how much work she is doing to communicate. Once we changed the dwell time to 0.4 seconds she really took off with talking and even started stringing 3 words together on occasion. The con to this short dwell time is that she sometimes selects the next item right away in that spot, too. It's hard to describe, but some screens are for one selection and once she makes it then it moves to other choices and there could be a choice right where she was looking and then she mistakenly selects that one. Does that make sense? The frequency of this happening is quite rare overall so we are willing to deal with it for the moment.
It seems like the 0.4 seconds is the right setting at this time. It does increase the chance she might say something she didn't mean, but when it happens she usually tries to correct herself. This shows me that there is just so much going on in her head and I can't wait to learn more about what she is thinking. I can't wait to learn what questions she will have, what jokes or teasing she will come out with, etc.
As Emma's use of Evie starts to increase so has her vocalizations. She is saying nonsense sometimes. It's wonderful! I have no idea what she is saying but she is able to get her breath together enough to string together a bunch of jibber jabber. And she plays with her voice high and low now. Sometimes she sings in the car with the music. And sometimes she is making word approximations. She says blue or red if we are working with colors. She says yeah when she wants. Her speech therapist notes her increase in vocalizations and word approximations, too, so it isn't just me and wishful thinking. It has been said that use of AAC increases vocal/verbal skills in children and this certainly seems to be the case for Emma.
Emma is starting to communicate more and more with Evie. We have our ups and downs on when she will use it because it is hard to use an eye gaze communication system or any other alternative to verbal communication. And she is only 5 years old - she's a baby really. She has lots of therapies each day and everything requires her to work hard and then there is the extra energy she has to funnel to communication and eating. Despite all of this she seems to be realizing the power Evie will give her over her own life and is choosing more frequently to engage with others through Evie in addition to her body language.
Our Emma. She is amazing. She inspires me. I am humbled by the way she radiates happiness and smiles every day despite her many challenges. How lucky we are to have our little sunshine in our lives.
Here is ~4 min. video of Emma using Evie this morning. She was nice and humored me when I told her I wanted to get a video of her using it to share with others. Usually Emma clams up when a camera comes out but this time she did say quite a bit. Almost all of the talk on Evie came from Emma except a couple of times when you see me use my finger to select a choice. For the In selection when Emma chose crawler I focused a bit on the options because they are new and Emma is still learning that row and the icons are rather hard to make out. It's hard to listen to myself on this video so please go easy on me if you make any comments ;-)
I know Emma is blinking a lot in the video - she had only just gotten her CIs on and it takes a bit of time for her to warm up to them in the morning. I could comment more on this, but I won't other than to say that she was on the program she uses after her CI have been on for about 30 minutes rather than the program for the first 30 minutes. Just know that I have the blinking issue handled.
It's amazing how far Emma has come with her speech therapy. It has always been her most hated therapy; not because of her therapists (nearly all who were very sweet and encouraging) but because it is so gosh darn H A R D for her. So more often than not she refused to participate, instead finding fascination in the most minuscule of items. All her therapists put her in the most bland room where there was nothing to look at in the hope that Emma would participate and not be distracted but she was always able to find fascination in a light switch that never moved or a light that stayed on. I cried a lot in the early days after her speech and hearing sessions because I just wanted Emma to make some progress so so badly.
When we moved and Emma started at her new school a spark ignited and she started to participate better. Her SLP is amazing to work with and Emma just clicked with her and let me tell you when a child clicks with her therapist amazing things happen! Emma started letting her SLP in on all that she knows, first by switches and then through various higher technology talkers as we tried to find the right device to buy. When Emma picked the Eco2 (her Evie) as her talker of choice we were happy to move forward with customizing Evie with her interests instead of the generic boards of the borrowed devices.
Emma was doing well with the initial word set we created so this week we added in a lot more new words and Emma rose to the challenge. Many of the words (like please, in, feel, hug) were brand new to Evie and somehow Emma knew just how to use them. I mentioned on Tuesday that Emma said a few things over the course of an hour that day and I was so thrilled with that because it was the most she used it in an outside the home setting. Today I found out she has been holding back on us.
I had a meeting already scheduled for today with her SLP and before we got to the reason for our meeting she had to share what happened in her school speech session yesterday. She had it all written down and was grinning ear to ear about it. I was in shock at how much Emma said in her session and just have to share.
Below is what her SLP wrote down during the session. So glad she was able to share all of it with me! Note: All words selected by Emma via her eyegaze are in italics. Each word in italics requires Emma to select it so if she says play doll, she needs to select play and then select doll, thus stringing the two words together.
SLP asked Emma what she wanted to play with. Emma said doll.
Then Emma said want Erica and looked over at Erica, her aide, and gave her a big smile.
SLP didn't have a doll in the room so she was hoping Emma might change her mind. She selected the toys option and asked Emma to pick again and Emma selected play doll so the SLP went and got a doll :-)
SLP asked Emma how the doll feels. Emma said bad
SLP was confused and so she said the doll feels bad?
Emma said need
SLP said need?
Emma said need hug
Her doll needed a hug - oh my gosh how cute is that!!! So the SLP gave Emma the doll to hug and she hugged her for a long time.
Then Emma said in stander
SLP and Erica didn't know if this meant Emma wanted the doll to stand or if Emma was used to being in the stander at that time of day. So for now we don't know what she meant.
SLP asked what Emma wanted to play with the doll
Emma said ball, so they rolled the ball between Emma and the doll and Emma laughed the entire time.
Erica left to go to the bathroom
Emma said want Erica
Emma again said want Erica
When Erica came back into the room, Emma said hi and then smiled at Erica
Then Emma said toy drink smoothie
They pretended the doll drank a smoothie and her SLP told her it was time for her to go back to the classroom. The 30 minutes were up. Seriously, all this happened in just under 30 minutes. My mind is quite blown away by this.
Emma then said play please
SLP and Erica could not refuse her that request - they were tearing up with all Emma had said and then she said please. Oh, my! How could they resist? So they agreed to play a bit more with her and then said it was now time to go.
Emma said want friends meaning she was ready to go back to the classroom where her friends were.
Then she said (and this is a button that has a phrase in it so it said it all at once rather than Emma having to string it all together) well, I must be going now
I just had to write this down here so I don't forget it. Did I mention that I'm blown away by all that happened in that 30ish minutes?
Look out, Emma, the bar is set high for you to achieve. I have no doubt about your abilities and your team doesn't, either. 2013 is going to be your year. I can't wait to hear all you have to say!
And now I'm off to add Love to the feel words because I can't wait for you to say Mommy I Love You.
This past week Emma was cranky. A bit off and quite whiny. Since she can't talk it's not a fun state of affairs when this happens because listening to constant whining is not my idea of fun. I'm anxious for the time when she is better at using her talker - it can't come soon enough.
Last week her SLP and I decided that Emma was making good progress with the words on her talker and it was time to add more. We added more core words and fringe vocabulary. Basically, what that means is that when Emma chooses one of the main core works on her screen, the row at the top offers her a variety of fringe words. She can now say "in" as her core word and the her top row (aka the activity row) gives her the option of saying "wheelchair" "stander" "walker" "crawler" "swing" etc. We also changed up the activity row for the "want" core words so now she can say "Erica" "iPad" "Mommy" "Daddy" "Julia" "friends" and a few more. Erica is her personal care assistant at school and friends is just generic to encompass either her friends at school, her friends at home, etc.
Last night I also added in "feel" to the core words. Her options under feel are "good" "bad" "happy" "excited" "mad" "hurt" etc. I am hoping working with these words will help Emma tell us when she isn't feeling good and where she doesn't feel good. She knows her body parts so if she tells me she "feel" "hurt" then we can go to to body parts page and she can tell me what hurts. This is one of the most exciting things about Emma's talker - that she will be able to let us know what is wrong with her instead of us trying to constantly guess from her whines. It will be life changing - at least for me even if she doesn't think it is for her ;-)
None of this matters, though, if she doesn't use Evie. We are finding ways to increase her access to it while at home and are also mounting it on her wheelchair whenever she is in it. We are modeling the device for her to teach her how to use it. For example, when people say hi to her we show her where "hi" is on Evie and we push it. Our goal is to have her look and say "hi" to others independently. We also show her "go" "bathroom" or "need" "toilet" when it's time to go to the potty. We do this over and over again throughout the day on our various activities, changing the buttons we push based on what we are doing.
Our efforts must be paying off. Emma has independently commented in her classroom at school. For example, during art she has for scissors, markers, glue, etc. without prompting. She has also used a few other words in her classroom. This is big stuff. Especially for my little girl who would prefer to go through life as an avid observer rather than work at communication.
Today, though, I got really excited when she said "hi" to her PT when she came out to get her for her session. I think this is the first time she independently and self-initiated a conversation! Then when we went back to the room Ms. Cindy had out and Emma's favorite swing and she got really excited. She said "in" "swing" and Ms. Cindy promptly put her into the swing. When her session was over she said "eat" "drink" and I told her she would get her lunch once we drove to her school. She smiled and then said "need" "toilet". So we went to the bathroom with the little bitty toilet in it (it's Emma favorite toilet ever!) just before we left.
I think all our focus on Emma's communication is starting to pay off. I pray these aren't isolated communications from her but rather are the start of lots of chatting with my girl! I hope one day to catch some of this on video so I can share it but Emma's a tricky one when it comes to cameras. She loves to get her photo taken and stops everything she is doing when she gets even the hint that a camera or video is around. I'll have to try some covert video operations to capture her progression with Evie.
I'm so thankful that God is helping make things click for Emma and she is starting to use Evie more. Here's to getting us on a path where whining and us guessing what it could be about are a thing of the past.
You always want to have hope but the act of having hope can leave you quite vulnerable for disappointment. We had hope when Emma was little that her CP would be mild. We had hope that doing some alternative treatments while she was young (for example, HBOT) would prevent her from having to undergo surgeries for various side-effects from her CP. We had hope that Emma would start talking after she received her cochlear implants. We had hope that Emma would start sitting or walking or *you name it* because we have seen some of Emma's friends start to do just that.
Although quite a few things I hoped for did not pan out, I do still have significant hope - it's just a more guarded hope. It's a more patient hope. It's the type of hope that is open to answers to our prayers that is different than the way we imagined.
This morning we had time before Emma's bus came so I decided to put her in her wheelchair with Evie mounted on it. We've had a bit of a routine where we will go outside for a walk with Finnegan about 10 minutes before her bus is scheduled to arrive and both Emma and Finnegan look forward to this morning outing. I had been setting the talker on Emma's tray table while she sat in her ChildRite chair so Emma could request a morning activity - she usually chose the walk. Lately she was refusing to use Evie in the morning (see this post) so today I decided to change our approach. I put Emma in her wheelchair with Evie mounted to the chair and left the room for a moment. While I was gone, Emma said Go a couple of times and was all smiles when I came back and told her I heard her ask to go. She didn't say walk or outside, but I was happy she asked to "go" so quickly and without any prompting. And she was so proud of herself - it was written all over her face!
Monday was Emma's first day back to school after a week off. She has speech therapy on Monday and Wednesday and the session on Monday typically occurs in the classroom and Wednesday is typically a pull out for 1 on 1 work. The classroom sessions are generally less productive than the pull out because Emma is a pro at ignoring Evie and her therapists when her peers are around. This week was different, tough. Her SLP reported that Emma picked a princess magnet game activity to play, paid attention to the game and said multiple {activity appropriate} words spontaneously without prompting! The words were Go, Frog, Stop, Play and a few others that I don't remember right now. This is unprecedented expressive communication from Emma!
Expressive, self-initiated communication from Emma. What Emma chooses to say is appropriate and she uses words in proper context. It's sporadic but it is deliberate. It's different than what I had imagined - but it is happening. And it is OH SO SWEET!
We just arrived home from vacation. It was fabulous! Great to get away, relax, spend more time together as a family. I LOVE vacation.
This year we went to spend time with an old friend of mine. It was really wonderful to reconnect with her and meet her family and have her meet mine. We found out that while our lives have changed - we added husbands, children and dogs to our lives - we pretty much are still the same people we were when we last saw each other something like 15 years ago. Which is both Wild and Wonderful. And it makes me wish we didn't live 6.5 hours apart so we could get together more often - if you're reading this Caroline, pick a date real soon to come down and visit us! You know you have a really good friend when so many years can go by and then when you get together you just pick up where you left off like no time at all went by. The fact that families got along great, too, made our reunion even sweeter.
I'll write a bit more about our fabulous vacation soon but I did want to update on something we found out before vacation. Emma's primary insurance came through and pre-approved her eye gaze talker and mount. All $17,000 of it! When I got the letter I was on cloud 9 and jumped around grinning from ear to ear. I cried some happy tears, too, because I just was not up for another battle with the insurance company to fund Emma's equipment. They are long, exhausting battles and I usually get a few scars from each one. I'm so thankful that I have one less battle right now because we are updating Emma's IEP and any parent that goes through IEPs for a child with similar needs as Emma knows that takes all your energy...and then some. It also came at a time where I was having it all out with God on how come He couldn't just let one thing come easy to my Emma. So maybe He threw us a bone. And reminded me that He has our back. And now I'm hoping that my writing about this good news here doesn't jinx us. Fingers crossed we see her new talker in the next week or two!
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!
We've had a trial of the Tobii eye gaze system since Christmas and it's now time to return it. We are hoping to trial the Eco II eye gaze system soon and then decide which system to order after the trials. I have to say that I LOVE the Tobii eye gaze system and am excited that Eco uses the same technology (I believe they licensed it from Tobii?) so I'm really interested to see the differences between the systems in action.
Emma does pretty good with the Tobii. The eye gaze detection is really forgiving of her changes in neck control. She is pretty accurate on selecting items when she wants to communicate. We found that making the interaction a fun exercise rather than a teaching exercise greatly improved Emma's interest in using the device. For example, asking her to tell us what color she wants to use in her art activity she ignores us. Asking Emma to have the mouse knock over a horse and she can't get enough of using the device. Her team agrees that she is cognitively able to understand our request to tell us the color but that she chooses not to comply because she just doesn't want to rather than she is not capable.
Emma has mostly been using the device at school but we have taken it home on several weekends. Since Emma has off this week and we were at the end of the trial we decided to bring the device home and get another 5 days of use before the return date. Her SLP programmed a screen with a photo of me and a photo of Emma to do some turn taking activities. She did this right before she sent the device home so Emma had not seen it before. When I opened it Emma immediately loved this screen! She kept selecting my photo over and over and over and over again and looking at me each time she selected it. It was like she was so happy to finally be able to say my name! My heart melted......
We used this screen to play some games. Emma liked the game where she chose who should knock over a stack of blocks. She mostly asked me to do it, but did decide to do it herself every now and again. Here is a video I took of her using this screen.
The video was hard to shoot while interacting with Emma in the activity and getting Emma to ignore the fact that her photo was being taken. This child LOVES getting her photo taken and will stop all activities to ham it up for the camera. What I like about the video is it shows that she knows how to use the device. She is very deliberate in her choices. She keeps her eye gaze on the square she wants to select for the appropriate amount of time mostly on her first try. Sometimes she needs to try again and when that happens she does try again until it speaks her selection. Her attention is still pretty short and is likely a mix of her age and that using eye gaze to communicate is fairly tiring. Finnegan was to her right so she kept looking at her to knock them down, too - Finnegan usually knocks the blocks over when we play with them on the floor. I have also noticed that during the device trial she started to "talk" more. You can see this in the video at about 2:25 in, it sounds like she is saying "you" when the screen didn't pick up her eye gaze at me. I had her too close to the screen - I moved her in to knock over the blocks and forgot to move her back - for it to detect her eyes and when I figured that out and moved her back she was able to select my photo.
I'm thrilled with the team that is working with us to give Emma a voice. They are amazing! And I'm thrilled with how well Emma is doing with the device after only 8 weeks. I'm not sure what is the ideal communication method for Emma yet but I see so much potential and promise in her future. For now that is enough.
Some days things go really well. From the time you wake up until the time you go to bed everything works out great. The thing is, though, is that those days are so...very...infrequent.
Most days I rush around trying to check off 2 items of my to do list. Yes, you read right - 2 items from a to do list that is at least a couple of pages long. The reason I have it set at 2 is because I think 3 is reaching too high most days. Experience tells me that I just as often as not hit the 2 items so I see no reason to mess with a 50/50 record by upping it to 3!
Today, however, is one of those magical days when great things happen even though I'm not checking anything off my to do list. It almost makes me want to stop the day now because I'm not sure it could get much better as the day goes on, but boy would it be fantastic if it did! And I have a feeling it will....today is just one of those great magical days where a lot of things come together on the same day.
Emma went to school in her pull-up today. Not a diaper, a pull-up. This is a very big deal in our world. She also went to school with a spare change of clothes just in case. And guess what?
She came home in her pull-up! She used the potty at school and did not require a diaper change. Her aide left me a message telling me how proud she is of Emma. I like her new aide, and now I like her even more for her kind message with italics and smiley face. I like smiley faces :-) Emma does not come by smiley faces or stickers for good work all that easily.
When Emma was settled in the house I looked in her notebook and read how great she is doing with a quick response on her listening check each morning and that the team is now introducing her eye gaze device for her to select the LING (listening) sounds. She even picked one correctly with her eye gaze device on the first try. In her notebook I also saw a note that our trial of the eye gaze device was extended until Feb. 22! That gives us almost another month to see what Emma does with it, which is really helpful in our decision making process of what device to purchase. She is just warming up to knowing how to use it - and at the age of 4 it still amazes me how quickly she catches on to all the technology we show her! - so handing it back next week would not really give us an accurate trial of the device.
On Martin Luther King, Jr. day we stopped by Emma's hospital to drop off her non-working loaner power wheelchair. Chris had the day off and was able to help me get it there because it is hard to load/unload it from the car when it has power and even harder when there is no power. It hasn't worked since we moved and I've really been itching to get Emma back to working on learning to drive a power chair to give her a taste of increased independence. I was thinking about the chair today and received a call from her hospital that it is all ready for her! The battery was just too low that it wouldn't charge. It is now charged and ready for Emma to drive it about. I'm planning to pick it up on Monday so we can have it for her PT evaluation scheduled next Tuesday. Emma needs extra PT in addition to what she has at school and one thing I want them to work on is driving a power chair. The timing of the fixed power chair is just perfect.
Today I haven't checked anything off my to do list and yet it's already been a great day. I think I'll save my to do list which includes calls to make appointments, insurance referrals, getting insurance to cover some of Emma's essentials, etc. for Monday. Today is a great day and I want to just enjoy it while it lasts for they don't come around that often and when they do they are meant to be savored.
Emma has been very quiet lately. She used to make more vocalizations in the past than she does now. I am not particularly excited about the quiet time. I prefer chatter. Lots and lots of chatter. And the pitter patter of little feet. I don't get much of either from Emma, but I'm still keeping the Faith that both will come. I've pretty much wrapped my head around the fact that Emma will likely use an alternative to oral speech to communicate and that she might not walk. Walking to me isn't all that important, but the communication means everything to me.
Emma seems to be the most vocal with her dog. She love Finnegan and Finney is so tolerant of Emma. After all, Emma usually tries to show her love by giving her a big love bite ;-) Today Emma crawled over to Finney and took a rest on her belly. I caught it on camera and asked her if she loves Finney and then told her to say I love you. She smiled and then made an approximation of I Love You. I love it! She's never made the approximation of I love you for me, but she has done it several times for Finney. I'll take it.
Here she is in all her cuteness. Enjoy! And listen close at around the 16 second mark ;-)
It seems to me like this year is going at warp speed. And yet, I wonder how this could possibly be when I would swear that some nights (ahem, teething has not been kind to Emma!) just seemed endless. Strange how that happens.
This year I find that we have had so many precious moments that I've wanted to hold on to and remember forever. I've tried to scrapbook many of them because they are so fleeting I'm sure I won't remember them a year from now, but just as many moments that I've captured in a scrapbook layout there are many that I didn't capture.
Julia has taken to giving me lots of random kisses throughout the day and is often telling Emma that she is the best sister in the whole world. My heart melts a little more each time either of these happens. Emma has begun to start approximating words if you are listening for them and then she shines like star afterwards so happy with herself that she finally was able to get out of her mouth what her mind has been so desperately trying to accomplish for so long. She doesn't do it often or on command, but when she does my heart blows up to 1000% of its size.
Speaking of moments to remember - Tonight we were playing outside in the tent and Julia was pretending to sleep. Emma kept "waking up" Julia and each time I told her to say - Wake up, Julia! This is a common game we play but this time she said it - Waaay ooop oolia. WOW!
Both girls just love to play and some of the favorite games around here are to build forts or to hide under the covers and have me or Chris look for them. Then there was the day that Julia, Emma and I decided to play in their room for much of the morning and then lay out a picnic lunch right on their floor. We shut the door to keep Finnegan out of the room because it's just not that big of a room to have a picnic spread on the floor that our food loving dog could stay away from. After that lunch we listened to the Imagination Movers on the iPad and had a little dance party and talked about things we liked, disliked, and wanted to do with the rest of the summer. That was one of my favorite days this year with the girls and I know they felt it was a bit magical, too. Julia still talks about that day.
With Emma going to start pre-school in the next month and Julia in her last year of pre-school before she heads off to (GASP!) 5 day a week kindergarten next year I find that I want to hold onto these moments even more. I'm going to try and journal a bit more here to capture some of the more mundane parts of our life that I know I'll love looking back on when the girls have grown. My Mom did such a great job of creating special photo albums and keeping mementos for me that I still treasure and I want to be able to do the same for Julia and Emma.
The truth is that making time to capture this information in a central location is not my strong point and I'm so glad to know that my Mom has my back. She keeps a journal for each of her grandchildren - all milestones, height/weight stats, vaccination dates, photos, funny things they do, etc. I can't think of a nicer gift that she can give them or us.
I go to bed tonight thinking of the photos we had taken for Emma's 3rd Birthday portrait. I can barely see any trace of baby in them - she's growing into a beautiful little girl. And I know I'll sleep soundly not because there was too little sleep last night (although, come to think of it there was too little!) but because I know we're enjoying life each day and making moments worth remembering.
Emma has been making progress with her vocalizations/talking, but it has been slow going. I find it especially hard - more so than Emma's delayed motor skills - that my two year old daughter has limited expressive language. For example, Emma doesn't point to let us know what she wants, cannot crawl to something and bring it to us to play with, etc. She does have outstanding eye gaze and smiles that are very expressive and we can usually figure out pretty easily what she wants, but I really want more. More than anything else I pray for, I pray that Emma learns to talk so she is understood by everyone.
Yesterday I said a special prayer to St. Theresa the Little Flower to help Emma talk. I believe we have a real connection with St. Theresa and that it is no coincidence that her birthday is the same as Julia's, her feast day is the same day as Emma's birthday, and she was born one hundred years before me. Every time I pray to St. Theresa I feel my prayer is answered.
Today Emma has been very vocal. She has been so quiet for the past few days that I was beginning to worry about her talking. Today was a rare day where we had nothing special to do and no therapies to attend. Emma and I decided to stay home and just play and I put a heavy language emphasis on our playing. Julia was in school and the house was quiet so we had uninterrupted play and Emma was so expressive! For the first time ever I heard Emma say I love you! It wasn't to me - it was to Finnegan - but I was SOOOOO happy to hear her say it and
I went and got my video camera.
While Emma did approximate the I love you sound again, she didn't say it nearly as clear as before I started up the camera. I kept the video running for a bit more of our playing and clipped together some other moments of Emma expressing herself and placed the video below. Way to go, Emma!
I am a work in progress. I love drinking coffee, family time and documenting our life - not necessarily in that order. My hair is usually in a ponytail, house always looks lived in and a book is never far from my reach. I drive thousands of miles a year, mostly a little bit at a time - somehow that does and doesn't drive me crazy at the same time. My life is far from perfect but it works for me.
