The Fate of Ipad #2

When your kids do dumb things, does it ever remind you of something dumb you did when you were a kid? It's easier to show grace that way. It sure reminds me. I did a ton of dumb things. That is the perspective I am choosing to take on what happened here this weekend.

A little over a year ago, I read Carly Fleischman's story, "Carly's Voice." It is the story of a girl who has autism, and she learned how to type to communicate. Her story is amazing. She was the inspiration for why we are trying to teach Lilli to type independently. Even after two and a half years, we are still going at it with faith that we are on the right track. But I've posted about that before. In this post, I wanted to point out that when I read her story, several details really stuck with me.

One was that Carly broke a bunch of laptops while they were teaching her to type.

Another was that it took a very long time to teach her to type, but they never gave up hope, and they tried hard, for years.

Even after she broke a bunch of laptops.

I feel like the number was pretty high, like six or seven laptops, but I can't remember. If you ask me, even one or two is a lot. For some parents, if a child with special needs breaks even one device from slamming it or throwing it...well, I think many would say, "That's it. My child cannot have another one. It's too expensive. This is obviously not the way to go. Let's try something else." I think some parents will not even try to teach their child to use a device, because they fear their child will just break it. Yes, it's true. They might. In fact, they probably will.

But not Carly's parents. I picture them sighing, maybe yelling, or maybe just sulking in silence about it all, and then trudging out to buy yet another laptop. Because they had to. How could they not? (By the way, Carly is now in college, taking classes. So imagine if they'd given up after she'd broken the second or third laptop.)

Carly's story really has had a lot of influence on us. This girl has given hundreds of parents (maybe thousands - you should see this girl's facebook page) of children with autism something that cannot be bought:

Hope.

Because if it can happen for that girl, then maybe it can happen for my child too.

Hope that even though things are unbelievably difficult, there might be a reward one day. A reward of breaking through the silence. Of finally knowing exactly what my child is thinking and wanting to tell me, all the time. And even to think that there "might" be a chance that Lilli can learn to type all by herself, that maybe one day she "might" talk, there's a chance. No matter how small that chance may be, there is hope.

So you may be wondering why I remember specifically that Carly broke a bunch of her laptops.

It's because Lilli just broke her second ipad last night. Her second one.

Yep, plunged it into water and gave it a bath. Pulled it up and the screen was blinking. That destruction took probably all of about five seconds.

I am going to say this, even though I probably shouldn't. But I wasn't home at the time. I was gone for 25 minutes and my husband was there, running water in the tub for Lilli and getting ready to bathe her. But he was distracted... and momentarily drawn away from the bathroom by chaos in the kitchen with our other two children, a spill, and a borrowed dog.

Don't ask about the dog. So even though it was a big accident, well, I wasn't there. I was picking up my niece at the airport. I had nothing to do with it. That's all I'm saying.

So the ipad #2 is sitting on the heater vent this time. Last time, when ipad #1 was put under the faucet by Lilli (also discovered by my husband, I might add - I was home that time, but he was closer to her...I'm just saying) we did the bag of rice method for a week. And that ipad never recovered. It never came back on again. I had to drag all three of my kids to the genius bar at the local Apple Store, only to be told by the genuis (who took a special flashlight and shined it inside one of the little holes):

"This ipad has water damage."

I had just told him that my daughter put it in the sink and turned the faucet on. (She likes water.) So my experience at the "genius bar" kind of made me chuckle.

I felt like saying, "Well, DUH!" But you can't do that in an Apple store to someone who has the job title of "Genius."

I know, the rice in a bag trick has worked for many of you. Just not for us. Maybe we should have used white rice, not natural whole grain brown rice. I don't know.

We are trying the prop-it-on-its-end-on-the-heater-vent-and-pray tactic this time around.

This ipad is extremely valuable to us, in so many ways. Lilli took her first standardized test ever with this ipad. She can use it to make choices - whatever choices we program into the Proloquo speech communication program. She uses it with her ABA therapist in many of her programs. She has several favorite apps that have taught her a lot. The ipad is her number one source of self entertainment. One of her only ways to entertain herself, actually. (See my last post.) I actually cannot list all of the reasons why the ipad is so important to us, there are too many.

You now may be wondering: do we have insurance coverage on this ipad?

Hmmm. Great question. I do not know.

Last time this happened, I called the school, and the insurance plan had just run out, and they had not renewed it. They graciously forgave us and replaced it anyway.

This time...well, this time my plan is to have my husband make the phone call. I do not know how much grace this district has left to give us. We have been extremely blessed that they even gave us an ipad to use in the first place. Maybe they will get her another one. Maybe they will tell us: too bad. And we will say, "We understand. You trusted us with this device, and our daughter gave it a bath. We are so very sorry."

Either way, this will not stop us from trying to teach Lilli. She has a terrible fascination with water, and obviously no common sense about putting two of her favorite things together, the ipad and water. I wondered why she did it. I think it might be as simple as the curiousity of what it would be like to play with her ipad under water. Kind of like when I was a kid and I put the iron on the carpet, and then there was a burn mark shaped like my mother's iron in the middle of our green carpet for about ten years.

Why did I put the hot iron on the carpet? My feet were cold. Do you follow? Please don't make me explain that one in any more detail. I just told my husband the story and he laughed and said, "Well there you have it, that was equally as dumb as putting the ipad in the bathtub."

Kids do dumb things.

Maybe the ipad will dry out and survive. I'll let you know. But I forgive Lilli. It's better than an iron mark in the middle of my carpet.

My post about Carly: http://wherelilliblooms.blogspot.com/2012/04/unraveling-lillis-typing-mystery-with.html

Links about Carly: (you need to click on her facebook link, just to see it.)

http://www.facebook.com/carlysvoice 
http://www.amazon.com/Carlys-Voice-Breaking-Through-Autism/dp/1439194149 


 

This Year's Early Christmas Present from Lilli

Last year, my early Christmas present was Lilli typing on the ipad by pulling my hand toward each of the letters on the keyboard. This year, my Christmas present is Lilli communicating through the ipad completely on her own. This is quickly becoming old news, because I have not posted enough on my blog lately. Each day that goes by before I finish this post, she does something new and I think about how I need to tell everyone (and record the progress for myself).

It is still in the beginning stages, but it is really, truly happening. Since October, we have moved into the next phase of Lilli's story: the phase where she begins to communicate independently - without us touching her arm or supporting her hand. The order went from using our homemade velcro alphabet letter cards to "Yes No" cards to "word cards" and "phrase cards" to now the newest version of her communication app. Looking back we can see how each step naturally led to the next one. And here we are.

In the very beginning, we held her hand. Now, I do not recommend that method for everyone, even though it was life changing for us. If I ever write a book one day about our journey, I will explain in detail why I do not think it is a good idea. We found out the hard way. There are great insights and dangerous pitfalls in using that method. In hindsight, we did need that boost, to know that she can read and understands so much more than she lets on. But then we had to take major steps back, to "start over" so to speak. I know it all happened for a reason. And the ipad in the sink, even though that was a bummer, was an important part of the process because it made us try new things. I think in Lilli's case, typing while supporting her hand helped us know what is going on in her mind much earlier than if we would have waited for her to type completely on her own. That day of independent typing has not come yet. But I know it is coming.

I could write another entire post on how we need to expect more from children with special needs, and give them the benefit of the doubt. Lilli is very smart. But if she did not ever have someone believe in her and teach her how to use an ipad to communicate, she would probably still be sitting in a class somewhere putting blocks in a cup over and over, and listening to Brown Bear Brown Bear. Seriously. Instead she is doing third grade level work, learning about math, science, geography, history,  and reading books that third graders enjoy.

So this app, "Proloquo2Go," and the ipad have been life-changing for us. Lilli is using the app without us touching her arm, to tell us things. She is not typing words, because that is very tedious for her and the keyboard is too small. Instead she is navigating through the communication app to put words and phrases together, all by herself. She is tentative and inconsistent. But let me tell you, it is thrilling. Because it is Lilli. Our real Lilli, talking to us on her own without being touched.

The "velcro words and phrases" phase happened in October. I laugh thinking about it because we only did it for a few weeks. All that printing, cutting, laminating, and velcro. However, it did lay the final part of the foundation in transitioning her to this current phase. This is how it happened. One morning during school time,  Lilli was upset. Her teacher Leslie tried to figure out what was wrong. Lilli would not type what was bothering her, and she fussed all throughout her school session.

A few days later, we came up with the idea to put short velcro phrases on a poster board instead of in a book. This was so that she could go over to it and quickly find a short phrase on the board she might want to tell us, such as "I feel sick" or "I'm thirsty." I also included phrases like "I like this," and "I don't understand." We propped the board up in her school room, and waited to see if she would use it on her own. All we did was point to it and explain verbally to her that she could use it if she wanted to tell us something, instead of typing it out one letter at time.

It worked.

Later that week during school, Lilli was fussy and whining. She got up on her own, walked over to the board, tore off the phrase "I'm frustrated," walked over to Leslie and thrust out her arm dramatically to hand it to her.

Leslie said, "You're frustrated, Lilli? Can you type to me why?" Lilli typed with Leslie's help, "Want to play in playroom but no because school."

Leslie said, "Lilli, I'm proud of you for telling me why you are frustrated. I am going to let you have a little free time right now because you did such a great job telling me what you are thinking. Then we will go back to school work."

Lilli chose the velcro phrase "I'm frustrated" and pulled it off this board.

Leslie said that Lilli happily played with some toys for a few minutes of "free time," and then willingly worked for the rest of the session with a completely new, happy attitude.

What a wonderful thing it is, to be able to express your feelings in "words."

Lilli used the velcro words for other situations. We took them shopping in a small container and Morgan spread them out on the ground at Michael's. (Not a positive experience. Shopping usually is tough.) We took them on other outings and we used them around the house. I used them to ask Lilli what she wanted to eat for every meal. Morgan used them to ask her about activity choices. The whole "word card choice" thing was going great. And then...we got the communication app Proloquo2Go re-installed on the ipad. That was November 1. (We had gotten the new ipad replacement from the school in October but we did not get the communication app right away).

I believe that as soon as we began the transition from velcro word cards to word "buttons" on the ipad, it clicked for Lilli. Proloquo might be a program that clicks more easily for some people, but Lilli had trouble with it when we used it last year. We also made a lot of changes to simplify it so that Lilli could navigate it herself. She is slowly picking it up and learning how it all works.

One day, I was talking in the kitchen to my mother in law about a piece of fleece scrap I had leftover from a blanket I made last year. She suggested I use it to make a scarf for one of the kids. As I held it up and talked about making two scarves out of it, Lilli came running into the kitchen. (Years ago I might have thought it was coincidence, or that she wanted a snack or something. Now, I know that Lilli has excellent hearing and she comes into the room when we are talking about something she wants to be a part of. It's true.) See, I have three children, and I was saying I could make two scarves for the kids. I totally get why she came running into the room! Just because kids cannot talk, that does not mean they cannot hear!

I showed it to Lilli and asked her what she thought of the blue fabric with dogs. Morgan put the ipad down on the kitchen table in front of her. Lilli hovered her finger over the ipad and touched:

The "I have something to say" button - opens a new page with choices of phrases.

The Negative folder opens to give choices of negative words and phrases.  The screens "scroll down" to show many choices below.

Lilli pushed "I don't like it"

Then she pushed "no" for added emphasis, I guess.

We were stunned. And proud. As you can see, you have to push several buttons to get to the desired phrase. This was not an accident. Witnessed by Morgan, my mother in law, and myself, Lilli had told me completely by herself that she did not like the fabric for a scarf for her.

The other night, she was tired and whiny. I put the ipad in front of her and simply said, "What do you want to tell me?" She pushed three buttons in a row to say:

"I want ...to go....to bed."

So I put her to bed, thinking how incredible it is to have another window into my little girl's mind.

Each day brings a new surprise.
Last week: "I want to wear a green shirt."
Yesterday: "Hi. How are you?"
This morning after I told her something good: "I am happy."
At lunchtime: "I am hungry for lunch. I would like a turkey sandwich."

This is only the beginning of yet another exciting part of Lilli's story. With the help of Leslie, Morgan, and Lisa (her teacher and therapists) the app is being continually programmed and improved each day, as we add things to it that Lilli might like to talk about. We are loving this app. I think Lilli loves it most of all.

After all, it is her voice.