Oct 13, 2014

Why It's Important to Allow Apps on AAC Devices

This is a follow-up to my post My Favorite Month which talks about some of the work I've been doing to Ainsley's AAC device. First I just want to say how excited I am to show you Ainsley's new voice! (In the video below.) It's the new American English child voice Ella, from Acapela. When I called the communication company who sold us the AAC device they said it would cost $199 because we didn't buy the Acapela synthesizer with the device (if we had it would have been only $99). Then I found on my own that you can actually download the Acapela TTS App from the GooglePlayStore for free and then purchase just the voice you want, then use that as your default Android voice for text to speech. The grand total was less than $14.  I'm sharing it here for all who are interested. This was a great find because the Ivona child voice, Ivy was mispronouncing some common words so this solves that issue at the same time. Besides, I just like this new voice and think it sounds more natural and child like. Ainsley seems to like it too!

In addition I wanted to show a couple of the apps that we added to her AAC device so that people can see how these apps actually relate to language development or the refinement of skills required to effectively use an AAC device, like developing a more precise point for using vocabularies with more and smaller buttons.  Insurance companies are trying to prevent patients from being able to pay to "unlock" a dedicated communication device so that it can also be used for apps and other functions. It's really a shame on them because it doesn't hurt the insurance company any. It's not as if they are buying these devices for people who don't need them. As you can see Ainsley is loving the changes to her AAC device and the apps are educational.  For many people with disabilities having a second device to text, e-mail or make phone calls (or play apps) is not realistic due to the nature of their physical disability. Few people need an AAC device but are able bodied enough to carry around multiple pieces of equipment everywhere they go.  Thankfully we purchased our device prior to these changes. I'm so glad that we paid the $100 to "unlock" it for Ainsley's birthday last year and I'm glad that we finally were able to get some good educational apps on it for her after fighting advocating to get the OS upgrade. I can't wait to see how her skills improve and whether she will be more inclined to carry the AAC device with her around the house now.

Oct 9, 2014

My Favorite Month.

Well, I survived my 4 day gig chaperoning camp with the middle-schoolers in September. It was great and I'm so glad I went. Afterward I caught a cold and took a sick day from my SAHM job and stayed in bed a whole day. I think that might have been a first. Ever. But then I had a mountain of laundry to do and other things. I have been meaning to get myself organized. I've got a big pile of papers with lists and things that I should do. I finally sat down to create a family schedule (one of the items on my list) and discovered that there aren't enough minutes in the day. Yes, I know everyone is busy. In our case there literally aren't enough minutes to squeeze all the things in that we are trying to do. I didn't actually realize that if things aren't planned out to the minute it isn't actually possible to do it, mostly because of Evie and Adrian's extracurricular activities and the extra time it takes Ainsley to eat. Some days it takes her over an hour to finish dinner and on a good day twice as long as the rest of us. So we've decided to eat before their activities 3 nights a week even though Steve isn't home and generally make dinner earlier in the night. That opens up a lot more time in the evening. It's no wonder we kept failing to keep up with our new "home therapy" program. I don't love schedules, so it isn't going to be an easy adjustment. We have been doing more than we had been, and will keep working at it.

Evie and Ainsley counting chocolates for math. 

I spent quite a lot of time and energy fixing up my sister Sheryl's old laptop (thank you Sheryl!) for Ainsley. It was unstable and the OS disc was thrown out.  Steve was finally able to install an old Windows XP OS on it so that we can use it to run the old computer games we have from when Evie and Adrian were little. I knew they would be a great way for Ainsley to learn computer skills and also a fun way to work on some pre-academics like learning letters as you see below. 

As part of my organizing I finally made my 2014 annual calendar that I keep in my to-do binder. Make your own custom calendar for free, here

For one "home therapy" session we played a game of category bingo with Ainsley. I programmed her communication device with the 6 categories: food, animals, colors, clothing, nature, vehicles. When each player drew a tile they would hand it to Ainsley. She would look at it and use her AAC device to say which category the tile was and who it went to. By the end she remembered who had which category and could get the category right on her own most of the time. 

She must have felt bad for me that I wasn't getting any of my animal tiles, so then when I finally started to get some she would give me a giant hug. So sweet! It was tiring but a great way for her to use her AAC device repeatedly in a meaningful way. She had a fantastic time and so did we. 

Speaking of communication devices I'd been on a mission to get some language and education apps onto Ainsley's AAC device to try to help keep her awake on the school bus ride home now that Ainsley is trach free with OSA. We'd paid to open the device for Ainsley's birthday last year but the company had deleted the few apps I could find when I sent it to get the amp serviced. This week I was excited when I found some great apps on my PC and was then perplexed when I could not locate them on GooglePlay from her device. All this time I thought the Android app selection was minimal compared to Apple but it turns out it was just due to our having an antiquated operating system and the fact that GooglePlay filters them out of the lists if they won't work on your device. One of the apps we wanted the most had been there the whole time! After this discovery I spent hours and hours on the phone with Samsung trying to upgrade our equipment's OS. At first they said the model number and serial number didn't exist. They informed me that the device was made using 2010 technology even though we bought it in 2012 (our insurance paid, and it was quite a lot of money) and it was made for use in another country so I would have to call support for that country, Mexico. After many transfers I found someone willing to help who even remote connected to my home PC and device to download the OS but it failed due to the equipment. Next I contacted the AAC company but I didn't get the response I was looking for and had to be the squeaky wheel and squeak quite loudly and frequently. It was exhausting but worth it because eventually they agreed to send us a replacement device that had the 2.3.3 OS installed. It cannot ever be upgraded past that because of the age of the tablet but it is a compromise I can live with. Let our experience be a warning to be careful when selecting which AAC device to buy since they don't list the equipment specifications. I'm am now in the process of  transferring Ainsley's vocab and shipping the old unit back. She has been using the communication device more and more. I hope that when she starts using the apps it will motivate her to drag it around with her as she crawls from room to room. Hopefully more opportunities for use will equal increased progress. 

So that is what I've been up to. This weekend was the Salmon Days festival. It's always the first weekend of October. Last year I missed it because I was on a respite trip with my sorority sisters, thanks to The Willow Tree Foundation.  I thought of my friends often over the weekend. I've attended the festival every year for the past 22 years, ever since meeting Steve. It is a big event for his family and the kids have gone their whole lives. Steve cut back back his sound mixing commitment and was able to hang out with the kids and me for a couple hours.  We saw a few shops and ate lunch from the food booths before he headed to the stage. 

This beautiful chime is ironically made from a recycled oxygen cylinder. 
I thought my trachie friends would enjoy seeing that. 

Evie wanted to shop at this artist's booth who she bought a print from last year. It was packed. Proving artists actually can make a living selling art.

She bought this picture with her own money. (The $20 version, not the $1400 original.) I think it's interesting the things my kids choose to spend their money on.

A glimpse of the food booths and crowd on just one street of the town of Issaquah.

Apple Dumpling a' la mode.

Ainsley wanted to join her brother and sister on the train track.
Evie wanted a picture of her boots on the track.

Evie still loves corn on the cob just as much as she did when she was 3.

We shared a Cow Chip "Bull Chip" cookie for dessert.

We visited the salmon that have returned to the creek to spawn. The festival celebrates their annual return.

We met up with Steve at the sound booth. I was struck by how grown up the kids are looking.

My father in law organizes the music. He has been doing it for decades. It's what he loves. He has a lot of connections to local musicians, some are close personal friends. He has a knack for bringing people together and arranged this all star jam as the grand finale to the weekend. It was a complex show so he wanted Steve to mix it.

Evie with her guitar teacher after the performance.

Ainsley was captive in her chair and must have been watching these boys climb this tree for 2 hours. She asked to climb it too. We let her hang from a branch. Afterward she wasn't happy and asked again to go up in the tree like they did. Times like that break my heart a little. I tried my best to get her up in the tree like she wanted, hanging from her legs instead so she wouldn't be as high. But she got scared. The boys asked a lot of questions: about her neck (even without the trach) and her eyes and whether she could talk.  I've learned to keep my answers super short so as not to invite more questions which can be a drag when you're just trying to live your life. Unless I'm in the mood. Sometimes I am.

The cousins together at the end. Getting so grown up!

At dusk it is beautiful in the valley as the music equipment is packed up concluding another awesome Salmon Days weekend. We were fortunate that the weather was amazing!

When we got home I programmed Ainsley's AAC with a Salmon Days page so she could talk about it Monday at school. She was so happy to be able to tell people about her weekend. I can't imagine how hard it would be to be silent and unable to express your thoughts. That is why we are stepping up our efforts with the AAC device.  She's ready.

Wednesdays the schools get out early. I pickup the carpool kids at 12:30. We had two hours before Ainsley would be home and I wanted to stop at Trader Joe's to try to find items that the (big) kids can use to start packing their lunch more.  It's especially tricky now that Adrian is vegetarian. 

Evie was so excited by all the pumpkin items. She found more and more and was so happy when I said yes. It became rather funny. We are now stocked up with enough pumpkin items to last the whole month. It was a lot of fun.
You might not believe it from this photo but we DIDN'T buy all the pumpkin items. 
They even had some for the dogs.

The full list from the Fearless Flyer.

It's October. My favorite month of the year! Coming up: Ainsley's 8th birthday, our 18 year wedding anniversary, Ainsley's 3 month decanniversary, and of course....Halloween.