Assistive technology for all ages

Apraxia occurs possibly more frequently with older people, as a result of a stroke or other neurological impairment. You'd think more communication devices would be used in those situations, but I'm not getting the feeling that they are. Wouldn't losing the ability to speak be even worse than not being able to speak in the first place?

Roger Ebert, the film critic, lost the ability to speak due to his surgeries. He says, "I would like a computer to provide me with my own voice." You'd think that would be possible these days.
Actually, part of what I enjoyed about this article is the sense of frustration he expresses. How much he misses being able to take part in conversations. A talker wouldn't help with that much, since they are labor-intensive. But many people can type faster than they can hand-write, so the lag would be smaller.

ASHA (American Speech-Language-Hearing Association) has a fascinating article about how augmentative communication can support kids facing the end of life, as they lose more of their ability to speak: Last Words, Last Connections.

On a brighter note, here's an interesting Reading Rockets article about including assistive technologies in your child's IEP.

Vantage Lite - tips on getting started

We finally had our first training on the Vantage Lite last week. It was very helpful, but really the biggest take-away from the 2.5 hours was one simple thought. If most language is based on the same 400 words used over and over (and it is) and that core vocabulary is in the talker already and fairly easy to navigate with some practice … then why are we assuming we need to program in the specific nouns for Nea's science unit?

The example given was, don't point to a picture of an apple and ask the child, "What is this?" and they go off and find the button and press "Apple". Instead, ask questions around that picture that uses core vocabulary as the answers. So I decided immediately that I had to experiment with Nea and her talker. I went home and asked her to tell me everything she knows about penguins.

What color are they? (black, white)
What do they eat? (goldfish crackers - har! and fish)
What do they like to do? (swim)
What would you wear if you were visiting them? (swimsuit)

Then we found the penguin button, too, but we'd used the talker so much before we even did that. It was fun, and she enjoyed it, and I hope doing activities like this will help her realize that the whole world is pretty much in that box. She just needs to learn how to use it more.

Because, you see, the talker is difficult in many ways, but the hardest for us is that Nea can talk a little. It's hard for her to decide to go through the effort of figuring out how to say something on the talker when she might be able to get her point across to us by speaking. This will resolve itself in one of two ways, of course. Either her speaking will improve to the point where she doesn't need a talker. Or her talker skills will increase to the point where it's not such an effort to say something.

Today I took some online training with the woman who developed the software we are using, WordPower. The most useful part of today's session was seeing how powerful the Vantage Lite can be once Nea is more literate. The word prediction is especially helpful. If you know how to read.

A couple links:

• Aac.languagelab.com - resouces like lesson plans
• Teaching.prentrom.com - teaching materials, online training

It looks like most of them are geared toward Unity, which is the software the Vantage Lite comes with. But what's a little customization.

Update on the Vantage Lite

The problem with being all subversive is that you then might obtain information that you perhaps didn't want. But let's start at the beginning. Ever read A Prayer for Owen Meany? It's not my favorite John Irving book (speaking of which, who borrowed and didn't return my copy of Cider House Rules?!). It's not even one of my top three. But the one thing that stays with you after reading it is the feeling that sometimes it takes years of things falling into place before you understand the journey.

The two most important things that fell into place for us and our path for getting Nea the help she needs for her apraxia are:

• Meeting and learning from the wonderful parents in the monthly Windy City Apraxia group. I only attend 3-4 times a year, but I always learn a lot.
• Reading Schuyler's Monster. That book has taught me how to never give up in the fight for the right services for my child.

Two weeks ago I learned from the kind parents of WCA that there is a counter that can be activated on Nea's talker. You can then download the information and see everything: time/date/which button pressed. I immediately realized the significance of this, of course. I called PRC directly to learn how that works. Since, you know, we've had no training yet. Let me clarify. No one on Nea's team, not her SLP (speech and language pathologist), not her special ed teacher, not her mainstream teacher, not her parents, have received one bit of training. After 7 weeks of school.

Doesn't this seem like something you read about in a "taxpayer's money being wasted" article? Something like "In other news, a $7500 device was supplied to a special education student, but it lies nearly unused, as no training was ever provided." Luckily! Luckily I am so clever. Remember how since I lost the battle for holding Nea back from Kindergarten this year, I asked for and received a 30-day IEP review meeting to discuss how the placement was working out for her? (link to that post) That meeting is this coming Tuesday.

You bet your sweet bippie I'll be asking how they plan to rectify the situation. Do we need an aide to work with Nea? I'm thinking we do.

I left a message for the special education facilitator this morning to see whether all the right people were invited. I briefly mentioned the lack of training to date. I wondered whether someone from the cooperative that supplies our schools with the Augmentative and Alternative Communication (AAC) device should be attending our meeting. I very much look forward to solving this issue.

So, would you like to know how many buttons on Nea's talker are pressed in an average 6 hour school day? How many would you guess? I mean, obviously how many words you say per day will vary based on many things. There are scientists who study that sort of thing. The answer, for Nea, is less than 20. In half her waking hours. Five days a week. Less than 20.

And sure, you could say that she verbally says a lot more. And she does. But how many is that in an average day at school? Seriously. She's the quietest kid in the room.

This isn't my most lucid blog post. I'm swinging between being angry and depressed. Which is probably good, since I need to be clear-headed and logical by Tuesday.

Oh, how convenient!

So we've had the Vantage Lite for three weeks or so now. We're still getting used to it. Still waiting for training from the school's augmentative communications department. I figured out how to edit it today. I added Nea's favorite button from her last talker (aka the doorstop): My sister's name is (Boo).

Something struck me when we first started looking around the menus and such. Can you find it in the photo below?

(I know it's a bit hard to see. There's a larger photo at the bottom of this post.)

Yeah. Imagine. What a world we live in when the communications device companies whore themselves out to the fast food companies. Unbelievable. Wouldn't you love to be a fly on the wall for that meeting? What do you pay to product placement yourself on a comm device? And the bubbly parents: "She can't say much, but boy, she sure figured out how to ask for shit on a bun quickly, didn't she? Our little angel! Naturally we take her whenever she asks. It's what she wants!"

Can you tell we don't do much fast food around here? Actually, this week was pretty exciting because I decided to make it my goal to have a vegetable garden planted at our grade school next spring. A friend of mine wants to overhaul the school lunch program. Naturally these two goals dovetail nicely. The PTA meeting is tomorrow, so I hope to meet the head of the recently resurrected garden club. And the head of the wellness committee.

It appears from this week's email trail that my goal won't be nearly as difficult as I first thought. Others are also interested in growing food on school property. The kids will learn about nutrition, science, cooking, gardening.

The littlest blues brother

Here's Nea. It's apparently genetic, this ability to look good in any hat. She gets it from me.

Did I mention that the Vantage Lite just happens to be what Schuyler uses? Oh. I guess I did. But there's a brand new video on her dad's blog! Watch Schuyler order dinner using the same comm device we'll soon have.

And since you can see it in the background of the first photo, here's what happens when you trashpick a planter and turn it into a patio pond. We have 3 koi (Kabuki, Rockstar, and Snowball) and 2 goldfish (Stealth, who is brownish and hard to spot, and Little Bert, who is actually Ernie-colored). The plants are real, but the flower is fake.

Our own Big Box of Words

Big, big news around here. After trying out two other communication devices (Dynavox 5 and PRC Springboard Lite), I went out on a limb and asked whether we could get one we didn’t test drive: the Vantage Lite. The school agreed!

It just so happens that Schuyler uses one (see video). We’re hoping for purple, though, not pink. Anyway, I am thrilled that we will have a new tool for Nea to learn on starting in August. It has a keyboard for her to spell out words. It has much better sound quality than her old Doorstop, er, Dynavox. And I don’t have to worry that she’ll outgrow it anytime soon.

Ah, happy times.

“Tell Santa what you want, Honey”

We went to an Easter Seals sponsored Santa event a week ago, and Nea was very disappointed that there wasn’t enough time to use her talker to tell Santa what she wanted. I programmed it to say “I want Lightning McQueen for Christmas” and “I want a racetrack for Christmas” and “I love you, Santa Claus.” (It has separate buttons for “please” and “thank you.”)

I mean, the Easter Seals event was nice enough. Irish dancers, cookies, a chorus of developmentally delayed adults that rang bells and sang. Nea pointed out that the soloist sounded just like Bert from Sesame Street. He really did. I thought that was a valid observation. But the meet-and-greet with Santa was really just a photo op. He didn’t have time to linger.

So today when Santa showed up at the preschool, and I just happened to be there, and we just happened to have the talker in her backpack, since Nea has her other school in the afternoon, and then we JUST HAPPENED to be able to tell him what we wanted. She was very happy and proud, and she navigated from the main page to the special topics page to the holidays page to the December page* and found her buttons and was all ready before it was her turn.

And I tried really hard not to cry.

*I told you that $7000 thing sucks.

Our communication device

DynaVox MT4, an augmentative and alternative communication device

For now Nea will be using a DynaVox DynaMyte, a touchscreen 3 pound talking thingie with multiple screen levels.

We toured the Tango at Easter Seals recently (they have action videos on their web site if you are interested). It's flashy. It's cool. If Nea was never going to talk, I would be twisting arms to get her one. Twisting hard. But it's too cool, I think. You go to the breakfast menu (using nice big pictures). You click the picture of oatmeal. It says "I would like oatmeal, please." with excellent inflection. But even though the crappy talker we have makes you use 3 pictures to say "I" "want" "oatmeal" using two different screens, I think that's better for her. Make her work for it, I say.

Anyway, it belongs to the school. If we lose or break it, we owe $7000. I'm thinking about calling our insurance to have a rider put on our home insurance for it.

It's unbelievable how, quite frankly, crappy this product is. For a tenth of the cost, we SHOULD be able to get an older laptop and some software. There's something really wrong with a world where this is the best we can do for our non-verbal children at that price. The Tango is also $7000. What a coincidence.

OK. That's my last post about apraxia for awhile. Unless I tell you the story about how Nea managed to ask my overweight non-gestating coworker about her pregnancy using only gestures and the word "baby." That was a special moment for me.

If you can't read that, it says "“You may not hear my words but just look into my eyes and listen with your heart." Makes me all weepy, it does.

I have other interests

I met with the regional apraxia support group last night. Conversation with N yesterday:

Me: I have apraxia tonight.
N: Won't that be difficult?
Me: Uh!

But, can I just state for the record? This reading endlessly and obsessing endlessly and generally making apraxia my hobby? Not. My. Idea.

Anyway. I don't have it in me right now to go into the details of the DynaVox MT4 communication device that is now part of the family. I'll do that soon. I know, most of you will be on the edges of your respective seats.

Tiny teaser: $7000 just doesn't buy you much these days.

Assistive Technology

At Easter Seals yesterday our speech therapist said, “What do you think about an Assistive Technology* assessment for Nea?”
I said, “Oh, I would be very interested in that.”
She said, “Lots of parents are against it because they think it’s giving up on the child ever being able to speak.”
I said, “Oh, no, not at all.” Then I walked down the hallway and tried not to cry.

So, we’ll see if it goes anywhere. I do think she is getting increasingly frustrated. As would we all, of course, if we were almost 4 and non-verbal.

* Which includes options such as:

• Adaptive keyboards such as IntelliKeys USB Board, onscreen keyboards for alternate access via mouse control, etc.
• Access options to all technology via items such as switches, joysticks, headpointers, etc.
• Speech generating devices (SGDs) such as the Vantage/Vanguard II, DV4/MT4, Mercury, ChatPC II, Tango, TechTalk, BIGMacks, etc.
• Software programs that help address literacy, writing, math and play.

[List lifted directly from Easter Seals]