finding her voice

A while back, my brother won a free Kindle Fire. Since he’d already previously won a free Kindle Fire (that guy, I swear), he kindly gave the second one to us.

I loaded it up with some cute toddler apps, but this was about a year ago and the girls were not getting it, so whatever. Temporarily set aside.

Then EI happened, and speech, and OT, and the diagnosis, and suddenly I was looking at Ham thinking “She’s still not talking. We need to try something else,” so we looked into AAC (assistive and augmentative communication) options. If you read my post on documentation, you’ll see that I mentioned the PECS system. That’s a form of AAC, as is baby sign and gesturing. Anything used to supplement or augment speech is considered AAC (as far as I know).

I grabbed the Kindle Fire and found a free AAC program called “JAB Talk.” JAB Talk allows you to pull images from the internet and attach them to “buttons” with text labels, which are then read by a computer voice when tapped. It looks like this:

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Those four screens above are all submenus. The main menu I created but apparently didn’t take a picture of had four buttons: “Shows,” “Books,” “Toys,” and “Food.”

When you edit the pages, you can pull from a number of previously-created buttons. I had a ton of food options for her based on what we tend to make, and I’d grab four or so per meal and hide the rest so she didn’t have to scroll or choose from a long and confusing menu of options. (Plus I’m not making seventeen types of foods per meal. This ain’t The Cheesecake Factory.)

JAB Talk was a great intro into AAC apps and devices for us, but it wasn’t perfect. For one, the Kindle Fire doesn’t have the greatest screen sensitivity. Ham found pretty quickly that she had to tap the screen about five or six times to get a selection to register, and some days that was just far too frustrating for her. Also, as the options grew in number, editing pages and hiding options became cumbersome and time-consuming. The app also froze up, often before I’d been able to save changes, and it had difficulty at times with pulling images from the internet because you had to access the web through the program. (It’s possible that you might be able to exit the program and download images to save in a Photo folder of some sort and then access the folder through JAB Talk– I don’t really know, I’m not terribly familiar with Android products and I’m only about 85% sure the Kindle is actually Android, whatever that even means. I have an iPhone and a MacBook. *shrug*)

We did all of this while trying to get more information about AAC. In November, I found a program through Boston Children’s Hospital that evaluates children for AAC devices and then helps you go through insurance to get one. It turns out that’s pretty critical, because devices can cost up to $7,000 or more. Yes, that’s the right number of zeroes– YIKES. It’s not the sort of thing anyone ever buys on their own. I called to make an appointment and was told the next available was…  six months out, in April 2014.

I got us started on this process as early as possible for a reason. Ham was young at the time– just a few weeks from turning two– but I wasn’t okay with having to wait so long. It felt like such a waste of time. Still, what can you do? I had them send out the metric ton of paperwork they needed me to fill out, all the while hoping I’d have the same sort of luck we had with getting an appointment to see a developmental pediatrician (appointments opened up last minute for both girls two months ahead of schedule).

Can I tell you about our speech pathologist for a moment? I first met her when I was in kindergarten because I went to school with her daughter. Fast forward a few years and I was working for her as a reading specialist and office assistant. I absolutely fumbled my way through working in a professional environment, and she was an excellent mentor, support and friend. She came to our wedding, came by the house for my father-in-law’s shiva, sent us baby gifts when the girls were born… Fast forward another few years and I called her up to talk about their developmental needs, and she made us an incredibly generous offer that has resulted in us seeing her once a week for the past few months. Every time we see her, she reminds me that I’m doing all the right things, that we’re on top of this, that the girls are smart and funny and lovable and if they have autism, they have autism and we’ll figure out what we need to figure out. She’s exactly what someone like me needs at this specific point in navigating parenting young kids with special needs and I’ll be forever indebted to her.

She also has– I still can’t even believe our luck– an AAC specialist on staff. What???

So instead of waiting months and months and watching Ham start to have more tantrums, more social disconnect and more frustration, she says “I’ll have the AAC specialist come in next week when you’re here,” and a month after that (and some meetings and a lot of emails and decisions)… Ham has an iPad.

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Introducing, Ham’s “Words.” Always to be capitalized because these Words are a big deal!

This is a program called Speak for Yourself. We very nearly went with ProLoQuo2Go, like many people do (and especially with younger kids, because PLQ2G is visually designed in a way that works well for little guys), but I found the most amazing blog about a little girl who uses Speak For Yourself and I thought, “Yes. THIS is it. THIS is the program that best suits Ham’s strengths and will give her the room to grow that she may need with this device.”

Can you believe that this one device could have a single app on it that can hold up to 14,000 words? Yup, that’s the right number of zeroes, too. Fourteen thousand words.

Many AAC apps and devices, like the JAB Talk one, use larger buttons that fill the screen. When you add more buttons you can end up scrolling, or the buttons will shrink to fit. Something that starts out taking up the whole top right corner could get minimized and be shifted off from where you’re used to seeing it. What Speak For Yourself does is give you a main menu page with 112 options and then almost as many sub menus with the same number of buttons BUT, as you can see above, you can hide as many as you want and what you end up with is a mostly-black screen with just a few choices shown. Even though the buttons are small, with just a few options Ham can learn where different buttons as, and the buttons never move. The system operates largely on motor planning and muscle memory. Example: when Ham attempts to hit the EAT button in the center of the screen but misses, I see her start moving her finger straight to the right before she realizes her error and I know it’s because she’s looking for the BANANA option on the EAT sub menu. Even though she hasn’t seen the BANANA button because she failed to get into the EAT sub menu, she remembers where it is because it’s always in that exact spot.

Ham has excellent memory, discrimination and receptive vocabulary– all skills that make SFY the perfect program for her.

(Should I add a note here that this isn’t a paid review or endorsement for SFY? I’m just really excited.)

I’ll go into more detail about the program later. There are a lot of fascinating (and a few frustrating) technicalities about it that I want to talk about later. For now, I’ll leave you with this video: Ham after just a few days with her new Words.

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2 thoughts on “finding her voice

  1. This is so awesome and makes me so happy and excited for you (and Ham)!! It must feel amazing for her to finally have ‘a voice’. As I believe I mentioned to you before, my husband (for 6 years) and I (for 1 year) lived and worked for a young man with autism who was completely non-verbal but could communicate amazingly well with his AAC device. Technology can be pretty darn cool, eh?! Go Ham!!! 🙂

    • I don’t think you’ve ever mentioned that! I might pick your brain sometime if you don’t mind. We’ll see if I can wrap my head around the adulthood-with-autism stuff anytime soon…

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