Julia has some serious natural artistic abilities that must have skipped our generation. Her school is very, very artsy and I'm glad they are fostering her budding artist because I am the opposite of artsy.
Emma is hit or miss when it comes to crafts and prefers to mostly engage in the truly messy crafts. She is ALL OVER finger painting! Lately she is taking an interest in using a paint brush and she really loves her one handed scissors.
Here is a self portrait Julia made in art class:
We had a girls' craft night at home the other night. Julia took to it immediately and made several pieces of art and Emma even was interested. We had Evie available for Emma but she chose not to pick her colors with Evie and instead used her hands to indicate the colors she wanted to paint. She took her painting very seriously and I was very surprised at how deliberate she was in her selection and paint strokes. It had been a while since I had painted with her and the last time I helped her I did 99% of the work so I was pleased to see how far she has come in her art.
Here are some photos of our girls' craft night.
I don't have action photos of Emma since I was helping her and couldn't man the camera and the art. She used the paint brush for the sky and grass and her hand print for the flowers. She really wanted to get messy and wasn't happy with only using the paintbrush...that's my messy Emma. She was very proud of the result. It was so cute to see!
Mornings are not my friend. I'm a night owl and likely always have been. I fondly remember my teenage years where I'd stay up most of the night then lounge in bed the next day sleeping until well past noon. Thanks Mom and Dad for being so cool with that! These days I don't get to sleep so long the next morning but I do have a tendency to stay up well past a reasonable hour.
When I rearranged the living room furniture a couple of months ago Chris' only comment when he came home to the new layout was that he was thankful that I did it during the day rather than at 10pm. Seriously.
This year Emma moved to afternoon pre-school and we are both taking advantage of the schedule to sleep in a bit. I usually wake up between 6:30 and 7am and finally venture out of bed around 7:30am while Emma gets up anywhere between 9 and 10am - and that's because I wake her! She's a night owl, too.
Unfortunately Julia isn't as lucky and leaves the house a little past 7am for school. To help ensure she is eating a more balanced breakfast (3 waffles with butter isn't a my idea of a good start to the day!) I started making a breakfast bento-style box at night and it's all ready to go for her in the morning. I don't have to wake up early to fix a meal and she LOVES the boxes because they are cute and have a lot of variety - it's a complete win-win! She has even started to help me fix them the night before and I'm happy she is taking an interest in creating balanced meals.
The bento boxes I use were purchased from Kangovou at a steep discount thanks to GMA Steals and Deals a few months ago. I bought one for Julia and one for Emma for our summer lunches and figured they would also be helpful for Emma's school lunches starting in the Fall. There are 5 various sized compartments and Julia fell in love with the containers as soon as she saw them. She really loves "cute" when it comes to her food.
Since Julia is on the school food plan and doesn't bring any food to school we decided to use it for school day breakfasts because she really wanted to start using them. I try and make sure there is a vitamin, fruit, dairy and protein in the box and try and mix up the contents each day. Here are a few examples of her bento breakfasts:
Organic strawberry yogurt, organic strawberries and blueberries, Club crackers, and an organic egg/hashbrown muffin.
Organic strawberry yogurt, vitamin with a few sprinkles to put on top of the yogurt, cucumber slices, 1/2 orange, PB&J on a Pancake
Julia making her breakfast: Organic Banilla yogurt, some pink sprinkles for the yogurt, homemade pumpkin bread, vitamin, organic strawberries and blackberries
Julia loves her "special" breakfasts and asks me to make her one most weeknights. I'm amazed at how just adding this simple container to the mix has changed her morning eating habits. We've even added in veggies such as lettuce in one of the bins and she is happy to gobble it down at breakfast.
I have also made a couple of bento boxes for Emma when we've been on the go all day. Her food is mostly pureed so I use the press and seal Saran wrap over the compartments that have runny foods like applesauce and I store it flat in an insulated bag. So far it hasn't leaked and Emma seems happy with a bit more variety to her foods.
I think it's safe to say that these little containers will be in constant use this summer and beyond!
This was the third year in a row we made a visit to the Abilities Expo. It seems that each year we have a reason to attend. Year 1 - we were looking for a new wheelchair for Emma. Year 2 - we were looking at power wheelchairs. This year - we looked at wheelchair accessible minivans and some new standers and walkers. Let's hope that if we go next year our focus is on getting cool 3E Love t-shirts and gear because that would be MUCH better for our budget! :-)
The most wonderful thing about this Expo is that any piece of equipment you could dream up is likely there for you to see, touch and ask questions from the vendors about. It can take months to get our local clinic to bring in a piece of equipment we want to test if they don't already have one but if we go to the expo we can see them all at the same time and notice the pros/cons of each in real time rather than relying on our memory of what it was like when it was in the clinic. That means a lot to us since Emma's needs are generally NOT cookie cutter. Usually equipment - even (especially?) special needs equipment - needs some modification to work for our little angel.
Like last year, Emma and I hit up the Expo by ourselves and while there we saw a few people we know. We wheeled in and out of most of the cars on display and continue to think the rear entry wheelchair van is our preferred configuration. There is an option for a long rear entry or a short rear entry. The long rear entry changes the configuration of the middle row of seats in the car to allow the wheelchair to roll between the two middle seats. You can then add an optional rear bench seat that can fold down for more passenger seating. The short rear entry only cuts out the rear of the car and leaves the middle row intact. The wheelchair will not roll between the row but it allows use of the regular bench seats and standard leg room for the passengers. I'm not sure what style we will end up with but it will probably be chosen based on price and availability. We will wait until we actually take possession of a power wheelchair before we will buy a van. We are currently in the appeals process with insurance for them to agree to buy her a power wheelchair and let me just say it is NOT fun! Fingers crossed they reverse their decision....
Our other top to do while there was visit the vendor for her mount. Blue Sky Designs was there with the Mount 'n Mover mount system. I have to say that this company continues to blow me away with their customer service! I wonder if it has anything to do with the fact they are located in Minnesota? When I travelled the USA for my sales job MN was always my favorite state to visit because I found the people there to be the friendliest of the 38+ states I've visited. I've always thought if it wasn't so cold it might be a great place to put down roots. Anyway......we wanted to see the iPad mounts. I had emailed the company this week letting them know who we were and what we wanted to see while at the Expo and Nick responded to the email letting me know he would be at the booth and would look out for us. When we got there Nick totally took care of Emma! He noticed right away when that her mount wasn't incredibly secure on her chair and wouldn't even put the iPad mount on it until he gave it a free "tune up." I knew it was in need of service because I lost a lot of the screws over the last 6 months and *substituted* them with different ones (don't judge, us Moms do what we have to do)....it was on my list of things to ask Nick but he addressed the issues before I brought it up. He noticed it was a bit wobbly and immediately set about securing it. He fixed the attachments with screws from his demo parts, adjusted the tension on one joint (and showed me how to do it for future reference), made a couple suggestions on post height changes and added screws to another part. Now that everything is up and running correctly (I didn't know about locktite and some other items he showed me to take care of the issues we experienced) it shouldn't need any further adjustments for a while. I think the mount is very durable and we are all set for years of use. We found the iPad mount with the bungee system to be exactly what we wanted so Nick took down our information and will send us one when he returns to the office. This mount is slightly different than the one shown on their website that uses velcro. Velcro won't work for us as Emma is not known to be gentle! Luckily the bungee mount seems Emma-proof and we can get a quick delivery. After all that flurry of activity I thought I had a photo of the bungee iPad mount but I don't so you'll have to wait for a photo until ours is delivered.
Before we left we met two men from the Hip Hop/Rap group 4 Wheel City. They were really great to talk with and even though Emma was sick today (I had no idea she would spike a fever while at the Expo!), and we met them right before we were heading home, she perked up at their booth and even smiled. The duo 4 Wheel City uses hip-hop music to spread a positive motivational message to people with and without disabilities and gives presentations at schools and other venues to reinforce the message to stay in school and never give up. They even created a song and PSA with Snoop Dogg! We bought one of their CDs and are excited about their mission and success and hope the positive momentum they have developed continues to bring them new opportunities to spread such a positive message! Emma posed for a photo with the guys known as "Rickfire" and "Tapwaterz". See that smile? It was one of the spare few she gave out today. If you are that the Expo be sure to stop by and talk with Rickfire and Tapwaterz and be inspired!
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.
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.
