The best $9.99 I ever spent

I used to think that the best way to spend $10 was to buy cider donuts fresh from the farm. But today, something else gave cider donuts a run for the money.

Evie's NOVA Chat, or augmentative communication device, decided to go kaput today. The sound worked, but the screen was dead.  I called Technical Support, but it was confirmed that the device would have to be sent to Texas to be repaired.  Insert crying emoji.

I didn't realize how big of a deal this was until Evie sat at the dinner table and started looking around for her NOVA Chat.  She wanted to tell me something, and couldn't. I tried to guess. This amounted to further frustration, which culminated in lots of yelling from Evie.  I told her to use her inside voice, but I was just as frustrated as she was when I couldn't understand what she needed.  Dinner took a very long time. She didn't even want a hug.

I went on the Saltillo website and printed the "low tech"version, which are PDF's of core words.  I showed her the pictures, and she really tried, but when she pressed a button that was supposed to trigger a new screen, she couldn't understand why the paper didn't change like a computer screen.
More frustrated roaring and yelling ensued. (Did I mention that people with Down Syndrome are NOT always happy?)

By the time dinner was over, we were both roaring at each other.  Even though we had just read "Dinos Don't Yell" this morning.

And then...I desperately googled Augmentative Communication apps.  There are a ton out there. And they all look different. If I didn't find the exact same setup, Evie would get frustrated in a different way.  The iPad version of Evie's vocal set, called "Word Power 60," is usually $300.00.  I didn't feel like spending that much money for a temporary fix, but they have a lite version for $9.99.   I thought $10 was worth it for 3 days of sanity, so I downloaded it.

Saltillo Touch Chat Lite


As soon as I showed Evie the screen on her iPad, it was like a different girl was in the room.  Evie instantly lit up, started saying all the things she had been wanting to say, and started exploring the different pictures that the iPad version had.  I am still stunned by the transformation as she regained her "voice" and was able to interact with me.



This lite version does not have the sound, but she is able to tell me what she wants to say as I read the screen.  THANK YOU, SALTILLO, for making a lite version so that my daughter and I don't go insane from frustration.   This further confirms that I prefer Apple products more than Androids, but that's for another blog post.  I am still wondering if I've created a monster by combining a source of entertainment with a source of communication, but I think the benefit outweighs the risk.

Being a special needs mom definitely stretches my brain and patience, but I still wouldn't trade her for anything.  She has a lot to offer, and just needs a voice.

If you haven't seen it yet, take a look at this movie that was made by MIT to be shown at the United Nations for World Down Syndrome Day on March 21, 2019.  Evie makes an appearance a couple times! Keep watching to hear her giggle! https://vimeo.com/325722356 (password: MIT).

That time when Marie Kondo gave us advice

I was reading Marie Kondo's Instagram site one day, and it asked people to comment on their home organization struggles.  I thought to myself "why not," and commented that I struggle with keeping my daughter's feeding tube and eating supplies organized on the kitchen counter.

Marie Kondo is known internationally for her philosophy of tidying and organizing. 

I was surprised to get a personal message from someone on her team, asking for my e-mail address so that they could better understand the situation.  I gave her my e-mail, and sent her a picture of the messy status of my kitchen counter. 

Oil, Miralax, calorie supplement, cups and bottles galore, cube trays, chewing devices...etc = no joy on my kitchen counter

She asked me a few clarifying questions, about whether the drying rack was for sterilized items, and other thoughtful questions, and then I got an e-mail that surprised me. 

The team had been a little stumped on what advice to send me, so they asked Marie Kondo herself!  And Marie Kondo sent us a message directly, to "Amy-san and Evie" and here's the advice she gave us (translated from Japanese via her team):

"I see...okay! So, we tend to focus on a specific spot in the kitchen where it seems like there’s a lot of stuff. The secret to this is to look around the other areas of the kitchen and see if there are items that don’t spark joy for you. Once you tackle the entire kitchen, there might be a spot that has extra space that you can use for the supplies that are on the counter.
There’s another way using boxes. With the perfect sized box, you can separate your items with each category (ex: bottles/plates/cups). Once the items find their “home”, you will realize that the kitchen seems to ‘spark joy’ for you. Amy and Evie, good luck with tidying!!"

I was tickled pink.  Marie Kondo herself!  

Weeks passed since receiving her advice--I just haven't had the time to do some organization.  But during a lunch break, I walked into the Muji store on Newbury Street, which I have been wanting to do for months.  After silently gushing in excitement over their pen selection, I saw shelves of storage boxes calling my name.  I was instantly inspired, bought a bunch of different sizes, and as soon as I got home, I set to work. 

I realized how many different cups and other feeding devices had collected on the counter--they were not giving any of us joy. So they went back to the basement. I then separated the cups into a container, bottle caps in another, and so on.  Putting things in the Muji boxes gave me joy. 

Here is the finished product.  I have less annoyance and more joy now when I look at the counter! Everything is where it should be!


Newly organized supplies

Closeup of box arrangement
Evie doesn't seem to understand how awesome this is on so many levels. I tried to tell her but she told me she wanted to play flashcards. Oh well.  Whatever gives her joy. 

Telling other kids about disabilities—my conversation with a 6 year old

I had an unexpected opportunity to have a deep conversation with a 6 year old today.  She came in while I was feeding Evie lunch in a quiet ...