Monday, October 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.

Thursday, October 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.

Thursday, September 25, 2014

Blendtec High Speed Blenders

For awhile I have been meaning to write about how much I love my Blendtec high-speed blender. It's an especially appropriate time to do so because I am having a dispute with the company that sold us Ainsley's communication device. That reminded me Blendtec is an awesome company that stands behind it's product. Ainsley doesn't need blenderized food anymore but I still use my Blendtec blender often and it's one of my favorite kitchen appliances.

Making homemade formula for years our blender got a lot of use.  One day earlier this year the seal of the canister melted while I was making the kids smoothies. I called up Blendtec to inquire about getting a new one, not sure if the motor was affected, it was hard to tell. In addition the base had a small crack on the bottom from the torque during use over the years. A minor cosmetic issue that nobody but me would notice. The customer service person was very helpful and to my surprise after looking it up said that because I bought it at Costco it came with a 3 7 year  warranty (oops, 3 is the $5000 AAC). They told me they would repair it or I could opt to get a replacement refurbished unit (which she recommended).  Since we moved and our kitchen had changed colors I asked if I could also switch from white to black and she politely checked for me and said I could. They even paid the return shipping for the old unit. Shortly afterward I received my replacement Blendtec and we've been using it happily ever since.

Blendtec Blender

What I love about Blendtec Blenders: Unlike their main competitor they fit under the counter top. A major plus in my book, as you can see above. It works really well, I've never found anything it couldn't blend. It has preprogrammed buttons that change the speeds and times to blend perfectly. Smoothies, crushed ice and salad dressings are my most used settings.  They have awesome customer service. The blender looks nice. (I think my new black blender is very pretty...for a blender.) The new color blends into the background a bit more than the white. I'm a happy customer and highly recommend Blendtec blenders to those who need a high-speed blender. And I wasn't paid for this review.

P.S. It's an awesome way to make yourself a healthy drinkable lunch in under 2 minutes. Perfect for busy moms. Just keep frozen fruit in your freezer you are always ready to make smoothies. No need to measure: 1 over ripe banana, frozen pineapple and frozen mango (thank you TJ), a handful of ice cubes, a splash of orange juice. On the side? Roasted coconut and cashews. Delicious! The possibilities are endless.

Saturday, September 13, 2014

Back To School

We finished off the summer with a couple get-togethers with family and friends, Steve took Evie and Adrian to Wild Waves (a water park) and we spent a day together as a family at the Evergreen State Fair. Sadly it was a bit of a bummer summer. (Other than their week away at camp.) The only good thing about that is that the kids were ready to go back to school. Evie especially because she misses her friends and there just might be a boy she likes (a new chapter for us as parents for sure). Adrian was ecstatic to leave elementary school behind him which is a little sad, but really I was the same way as a kid. And of course Ainsley would be going back to school without her trach. So it is a huge year of change for all the kids.  But before I show you their back to school pictures and talk about how things have gone at school this past week and a half I want to share our fair pictures.

Adrian was afraid of the rides. Rightly so on the two above as you can see. Evie LOVES it. Two opposites those kids are. In 2009 we went to Disneyland and Ainsley rode all the rides with no problem. This time she didn't even want to go on the Merry-Go-Round. I had to force her.  (I'm there behind her keeping her safe.) What a let-down when you're just trying to have fun.

I thought I'd get them all to go on the Magic Carpet ride, but only Evie would go on it with me. 
We're on the far right. It was scarier than you'd think.

Later in the night I finally persuaded Adrian to go on the spinning bears. Sheesh! So in the end he went on one ride. We pulled hard, spun around as fast as we could, and he thought that was pretty cool.

He had a bit of trouble finding food to eat now that he's a vegetarian (he still hasn't had any meat since May).

What he really wanted was to win a giant donut. See them there in the back? Of course you know how difficult it is to win a prize at the fair, but since this trip to the fair was our "summer fun" we let him try. Several times and many dollars later....he didn't win one, so he was very disappointed. Strike 3.

The man at the ring toss gave Ainsley a free bucket of rings to toss and she had a blast! It didn't matter to her that she didn't get any rings on the bottles or that she didn't win a prize. But they gave her a consolation prize anyway. It was so nice of them! 

I love all the classic fair stuff, the grange displays, the canning competitions, knitting, quilting etc.but the rest of the family was less enthusiastic. Did you know there is a "mix in a jar" competition? 

Of all the animals we enjoyed the piglets the most. OMG SO CUTE! I wanted to scoop up the little brown one and take him home. Ainsley pet them as they wriggled around.

The BEST KETTLE KORN in the history of the world was consumed that night! It was so awesome that Ainsley was able to eat fair food. No tube feedings at all. She's getting stronger, and in a few months it will be a year that she's been eating pretty much fully orally!

We contemplated buying some yard art to put in the center island in front of our house.
Just kidding, but I'd love to see the neighbors' faces.

It was a fun day at the fair and a great way to end the summer.

We roasted Smores for the last time in the season. Ainsley ate 2!

Earlier in August I'd gathered most of what I needed for Evie and Adrian, ordering the last few things on-line the week before like a graphing calculator and drawing pencils. I felt fairly well prepared but it wasn't clear what Ainsley needed for supplies. The teacher sent out a last minute invite to an open house at which we were supposed to get our supply list...the Thursday before school started. The same day and time as E&A's orientation. Don't they realize they are doing us no favor by waiting until the last minute? So I had to get a bunch of stuff for Ainsley over Labor Day weekend. We did it, but it took up a good chunk of time since I also hadn't heard back from her General Education teacher. For that class I printed the general list for 2nd grade and guessed what items Ainsley would actually need. In other words, not a billion pencils, no magazine subscription money, no flash drive or headphones for netbooks etc.

I think it can be a bit of a sad time for parents of kids with special needs, when most parents are happily getting their kids ready to go back to school, posing for perfect pictures with fancy signs celebrating their grade level. When your child is different "back to school" can be a reminder of all the ways they don't fit in. I felt a bit sad thinking of how she won't need many of the items on the list, how she doesn't really care about her old backpack and lunchbox, that she can't carry it anyway, and that she will be using a wheelchair lift again this year to get on the school bus, that she still can't talk....or that she doesn't have friends to miss. And I spent the last weeks of the summer trying to get answers about whether a nurse or aide would be assisting her to that we can attempt to get her an education. Although these feelings popped up from time to time, I tried my best to feel them, acknowledge the truth of their source and then let them pass and focus on the positives. Ainsley is HAPPY. Healthy. Heading off to school without a trach. She likes school.  Then we made up two pencil boxes for her, one for each classroom, which was kind of fun.

I think it's a bit ridiculous how nowadays we are expected to provide so many supplies. When I was a kid the school provided everything we needed to learn. I'm not even sure we had a backpack.

Evie and Adrian leaving at 6:45. Poor Penny has been missing them. She's also in heat and that is no fun.

We found a bunny eating fallen grapes while we waited for Ainsley's bus.

I was so happy. We have the same bus driver. I LOVE him. For awhile I was afraid Ainsley was going to have to ride the bus alone and I felt much safer when I knew it would be Gene driving her. 

We have a little goodbye routine that we do every day, including fist bumps at the end. I LOVE this girl!

It may not be popular to admit, but I was happy as can be to see the bus drive off with my last child on it. I am glad to get back to a regular routine. I was glad to be able to take care of things that need to be taken care of without feeling guilty that I wasn't providing a fun summer break for the kids. 

Everything Ainsley does takes her a lot of effort. It wears her out. And by the time she's home from school she doesn't have a ton of energy. This day I found her in my bed, she'd climbed in and was watching her dad's Kindle under the covers. 

We'd received a 60 day extension of nursing services through the Developmental Disabilities Administration while Ainsley adjusted to life without a trach. The decannulation happened earlier than expected (July instead of August to accomodate the doctor's schedule) which meant our 60 days ended sooner in the school year than originally expected. Ainsley has had a one-on-one nurse attend school with her since she was 3. I couldn't imagine how she would function without the support. There are so many things she needs help with throughout the day. Of course trying to get answers during the summer is difficult. During the first weeks of school is hardly much better. But after many e-mails and calls we had an urgent IEP meeting with the school principal this week and were able to get a decision. The school is keeping our nurse on through the end of this school year. She agreed to work all 5 days a week, a huge increase from her usual 2. This is great since she knows Ainsley so well. Ultimately it will probably be good for Ainsley to transition to a paraeducator whose focus is on teaching Ainsley as well as keeping her safe. However since we really don't know how Ainsley is going to do during cold and flu season and there is a small chance she could end up needing to be re-trached. If that happens then I would presume our nurse would be willing to come back to do home-care. I think we'll all feel more comfortable after we see how she does the first few times she gets really sick. 

The nurse needed two days off because she had a couple things already planned so I had to attend school with Ainsley myself which I really didn't mind. Despite the loss of time to get other things done I actually really like having the opportunity to see what goes on at school and think it's good to get to know the staff. The only problem was that both days I was supposed to drive the carpool. But the other families helped me out, each taking a shift picking up the kids at 2:00. I am so lucky to be part of this carpool. Otherwise my kids would not be able to have the opportunity to attend this school.

The first day I attended with Ainsley it was awesome to see she used her communication device to ask a classmate to play with her. This was totally unprompted. She is starting to use it more and more.

I stood back quickly to take these shots of Ainsley climbing on the equipment. We've done a lot of home PT this summer and she's getting stronger.  She needs help every step of the way but it's awesome to see her able to access the playground. Pictures can be deceiving. I have to keep kids from knocking her over because they don't understand how unstable she is and that she can't get out of their way as they run around. It tugs at my heart a little. But she's having fun anyway and it's so good for her to be out there doing as much as she can. She  really doesn't seem to notice the stares on the playground, or in the lunchroom or anywhere else they happen. And I am so SO thankful for that! Several kids came up and to introduce themselves as Ainsley's friends which was really sweet. Many people tell her hello in the halls. All in all she is a valued member of the school community. 


Counting chips earned for good behavior, to spend at the class "store".

I cleaned out her desk with some anti-bacterial wipes which you can see was necessary. I wonder if there will ever come a time that I don't have to worry about germs the way you do when you have a medically fragile child. I suspect she will always be at higher risk. 

All in all I'm very excited for all three kids. Ainsley was assigned to a new classroom and many of the kids are higher functioning. I think Ainsley will thrive in the new environment. Adrian loves his new school and feels that he fits in well and is making friends. Evie is happy and I think she's going to have a great last year with these kids before heading off to high school

We bought her a smartphone the week before school started for several reasons. First she's highly motivated by it and we made up a contract that she had to agree to maintain a B in all classes, in addition it is the most effective incentive for other positive behavior since she does not want it taken away. Second it's a safety thing as this allows us to reach her and Adrian at their school which is in the next town over. Third is that now that Ainsley's trach is out and we lose our home nursing we expect Evie to babysit her, in exchange for the phone service. She is beyond thrilled and so far things have gone well and she's following the rules. Aside from that her Ipod broke a few months ago and she's been unable to listen to music which she does all.the.time. She was borrowing Adrian's a LOT and as you can imagine that was causing some problems.

Adrian has had 3 soccer games so far. He spends most of his time defending but he's hustling so hopefully scoring will come soon enough. 

We enjoyed eating our last meal of the season outside and finally made the Sangria we'd planned for earlier in the summer. I just don't know where the days went. I am looking forward to fall. We cleaned out the herb garden and I made 12 bean soup with the herb trimmings. Fall is my favorite season of all. We aren't there yet, but it's in the air and I can't wait. Next week.........I am an overnight chaperone at the middle school camp. Three nights in cabins. We'll see how I do. It might just be the best sleep I've had in years. We'll see.