Josiah’s Fire

Hello. Well, there’s still a lot of good stuff on this blog, but it’s dusty and outdated. Since I last posted here, much has happened with Josiah. He is communicating through typing now on his iPad. God is doing amazing things through this little boy. If you want to catch up with us, like us on Facebook at Josiah’s Fire.

You can also hear the story from this radio interview. God bless! God is a good gift giver!

 

 

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A TYPE of Speaking

Once I knew only darkness and stillness… my life was without past or future… but a little word from the fingers of another fell into my hand that clutched at emptiness, and my heart leaped to the rapture of living.–Helen Keller

A couple of months ago, I had a revelation.

Josiah with his trusty iPad!

While wrestling with the fact that my beautiful little boy is still “pre-verbal” at 5 1/2, I recognized potential existed beyond the breakthrough of words. He IS in there, whether words ever exit through his lips or not. And he’s more aware of everything around him than I know.

I’ve wanted to believe he was, but in his silence or intelligible noises, at times I’ve forgotten. And doubted. And been less expressive back to him myself because I sometimes lose motivation to “chat” when it’s one way.

Somewhere while looking for clues of what Josiah comprehends within the quagmire of “expressive” and “receptive” language charts and graphs, or labeling stuff by tapping on a picture square, a chunk of optimism fell off my heart. I never thought with all the early intervention and everything we’ve thrown into this guy that we would be HERE. Less spoken words than ever, and he’s almost 6-years-old. Without words, his true intelligence is missed and misunderstood by those of us out here that don’t know how to mine for it. But oh, he has a light in his eyes and is full of joy!

When so much time, money and effort all of these years has gone into unearthing the holy grail of “progress” in my mind–“Can he TALK?”–I’ve been prompted to change my perspective of what I truly need for him. “Can he learn to communicate?” Not just “I want swing” or “I want donut” by pointing to talking pictures on his iPad. But tell us what he’s THINKING. What he loves. What he’s curious about. Or just simply in this crazy autism world of asking him the “what is it”s, I want him to be able to ask me “Why?” about something. Anything.

I watched the HBO documentary A Mother’s Courage a couple of months ago, and it ignited a new fire in me to help unlock my son’s world. (You can Netflix it if you haven’t seen it.) It featured something call the “Rapid Prompt Method,” and kids who everyone thought couldn’t learn or had very immature minds because they couldn’t talk were showing everyone what they were made of . Even the most “severe” were learning to choose and discuss topics and to write. And some were eventually learning at grade level and communicating their thoughts brilliantly. They were funny and they had a lot of things to say like the rest of us. You wouldn’t have known it from the outside that they were even listening.

The documentary “A Mother’s Courage” shows several scenes about the Rapid Prompt Method…

This news story features a kid who was “sorting silverware and doing first-grade work” the year before and just won the 8th grade science fair doing college-level chemistry after learning how to use a letter board to communicate!

Then, this documentary called “Wretches and Jabberers” came out and I hope to see it. In the trailer, you see that the adult autistic man answers the question, “So you’re saying all our assumptions about you are wrong?” He replies, “More like you than not.”

So, I’m trying yet another new thing this summer. I’m packing up Josiah for 4 days and driving 5 hours to Green Bay, WI where I found out that a lady that apprenticed under the developer of the Rapid Prompt Method has opened a therapy center. I’m willing to risk $460 to check it out. I’ve contacted three other people that have tried this with their children, and they all have said it has been well worth it.

I want to see if my boy who’s a whiz on the iPad could learn to type one day and rip down this word barrier. I want my son to LEARN, not just label. I want my son to COMMUNICATE, not just behave. Josiah attends a center-based therapy center 40 hours a week of the ABA/AVB, Physical Therapy, Speech Therapy variety. What if he learned how to spell, and he could be educated? What if he was able to gain confidence and interest in learning how to do something that made him feel valuable and like he had an outlet? Perhaps we need a little more creativity.

I’m thankful that Josiah has come so far. He’s really a delightful little boy. It’s time for him to learn how to communicate and to show off what he already knows. I continue to pray for God’s healing to release that tongue of his. In the meantime, I’m compelled to give this Rapid Prompt Method a go. I’ll let you know!

iPad: The Apple of His Eye

Last April we got an iPad for Josiah. After reading about the iPad and watching some videos, I had a hunch that this would be something that Josiah would dig. He already loved buttons, electronics, music and anything that would make noise. Perhaps instead of “stimming” on those things, we could actually lean into those motivators so he could learn. Well, my $499 gamble has paid off big time.

I realized that I wrote about “Why We’re Getting an iPad” last March, but I’ve never really followed up to tell people what the results have been for Josiah. Well, I see nothing but potential, potential, potential! Just this morning, I stepped back and marveled at what he was able to do with this miracle of modern technology. Out of all of the apps that are loaded on there, he knows EXACTLY what he wants, what it looks like, how to get to it, and what to do with it once he gets there. There are not just a few choices, he has to be thoughtful, and my son can figure it out! Yes, he’s still very behind in his development–the preschool apps are most suited to his aptitude–but he’s learning!

Getting Coordinated

When we first got the iPad with its intuitive touch screen, Josiah first was mostly drawn to the piano app. He’s a big fan of keyboards. But with the primary proloquo2go app (think a totally pimped out voice-output version of PECS–picture exchange), he kind of had a hard time getting his little finger pointer coordinated to work with it. He wanted to use his fingernail, and it didn’t have the pressure to make the requests needed. But, his therapists worked with him for about 2 weeks on that, and then he took off with it.

I remember one particular day this summer when Josiah grabbed his iPad and went into our closet, sat in a little laundry basket we have in there, and played for a while. He came out knowing how to do the electronic puzzles all by himself. Before that day, I recall being shocked when he checked out the puzzle app and then took my finger and guided the puzzle pieces into the right places. He does know HOW to do it! I began to realize that both motivation and motor planning–not aptitude–were probably at the core of many of Josiah’s deficits. Then, when he figured that out, he has done nothing but excel with the iPad. Quite honestly, he mostly teaches himself on it through exploring.

Goodbye Velcro Pictures

His therapists began to see that he really was taking to the iPad. So they decided to ditch the velcro book and laminated pictures and replace them with the iPad and proloquo2go for his requesting and communication. They obviously still continue to work on his verbal requesting, but speech is still so slow to come. But the iPad has helped us to learn about how Josiah thinks and what he likes more than we ever could have guessed. When he busts out in laughter while playing a certain game, or solicits my help because he wants the sound for one app turned off, it helps me KNOW HIM more. I so desperately have wanted to know what he’s thinking for so long.

I think the biggest challenge that we face is the education and therapy world catching up to the potential that the iPad can offer to children who have difficulty communicating. A couple of months ago, I had a parent meeting with Josiah’s therapists and they were ready to use the iPad for more than just requesting. I wholeheartedly agreed and said, “Yes! There are apps that I’ve downloaded, and you can see he knows how to do matching, he’s a whiz with the puzzles, he can learn more there how to identify letters and numbers. The electronic books can help him learn to read!”

Hurry Up Autism Therapy World–You’re Falling Behind

Now, I do realize that Josiah’s entire life cannot be lived on the iPad, but because of the iPad he is now doing real 15-piece puzzles when he “couldn’t” do 5-piece ones before, or would lose interest. But here we are, a couple of months later, and they are struggling to know how to start using the iPad more while making sure they can stick to the curriculum and the “towers” they must fill for federal standards. The “one-size-fits-most” approach and standardization can be good, but can also limit creativity. Who will lead the charge at the higher levels? Our kids are born with technology in their hands, so would someone declare that you can use the iPad to accomplish or spur some of the same skills that are currently tracked only when accomplished tactiley?

Our kids with autism don’t learn the same way as other kids do. We all know that. But that doesn’t mean they can’t learn to approach concepts that will translate to real life if we give them the right tools. Apple probably didn’t set out to revolutionize the world for kids with autism, but it sure is doing it. It’s fun to follow some of the older teens with autism on Facebook who are rocking out their lives now with the help of the iPad. And the iPad is cool! When they use it, it doesn’t look like they are lugging around some chunk of medical equipment. It’s helping one teen I know of make more friends and be more social in high school because she can show how funny and interesting and smart she really is–even though she can’t herself speak a word. I had to laugh when she wrote on Facebook that she got “shooshed” by the teacher because she used her proloquo2go app to “whisper” to a friend during class.

So, Josiah’s Christmas presents this year will probably look like iTunes gift cards so we can  buy more apps, instead of a lot of light up baby toys. My boy is 5 now, and he is going to crack his world more open thanks to the iPad. Now, if the rest of the world could catch up, and the people who develop autism curriculum would start making apps like mad fools. Get your current therapists to some conventions and show them how to implement this stuff. Time is a wasting! Link arms with the autism parents that are searching for the cutting-edge, and pioneer with us. Onward, ho!

Here’s Josiah in his early days with the iPad. The piano app kicked things off, and now he’s branched out.

Why We’re Getting an iPad

I’ve got to get the word out. I think the Apple iPad is going to be an amazing tool for kids with autism, and we’re early adopters over at my place. We’ve placed our pre-order, and can’t wait to receive it on April 3!

When stirrings of the new iPad were floating around, an idea popped in my head. Hmmm. Josiah likes our iPod Touches. He seems to be a big fan of buttons and electronics. The touch screen is easy to grasp. So, if he’s drawn to the iPod, the bigger iPad could be great for him. Heck, I’ll even see if his ABA therapists would incorporate it into their therapy and we could shuffle it back and forth between therapy and home and see if we can’t give this kid a voice. They were all over it.

Here’s a video that gives a good overview of what an iPad does:

So, 5 reasons why to get an iPad for your child with autism:

1. It’s thin and lightweight=super portable and even COOL. Josiah appeared to be a good candidate for the DynaVox speech machine when they came and did an assessment. But for the life of me, I can’t figure out why these things cost $8,000. Is this the 1950s, and do they fill up an entire room? At first blush, I think the apps that are out there for the iPad (and those that will most certainly be developed) may give the 3″ thick and 10 lb. DynaVox a run for its money. The back and forth ease of the iPad between child and therapist, child and parent, home and school is going to be sweet.

2. It’s only $499–a one-time expense. Sure, I get that you would be hardpressed to find any insurance that would cover this expense–right now–but for all the money that flows like a river out of our household for various biomed, sensory items, therapies, and co-pays, $499 feels like a value to me for what we will get from the iPad.

3. There’s an app for that. The iPad will run all the downloadable apps currently available for the iPhone/iTouch, and there are many apps being developed specifically for the iPad as we speak. The sky is the limit for the apps that will be downloadable at the touch of a finger. Who has to worry about loading software on CDs? This is so much easier. From what I’ve observed, I believe Proloquo2go is going to be the foundational app to have on the iPad for Josiah. It’s kind of like your entire PECS functionality in an electronic version (see the video below), and you can also add your own pictures in. At $189, this app will likely to be the most expensive one we’ll ever buy, but it will be the most important. We can also load it on our iPod Touches for easy portability. Most apps cost $.00(free)-4.99. Go here, type in “autism” and you’ll see about 100 apps. Type in “preschool” and you’ll find about 500.

  • Some great apps I’ve found and am currently using:
    iCommunicate (simple visual schedules)
    LearnToTalk (Flashcards that talk and spell)
    Virtual wooden puzzles, shapes games

4. Internet, iTunes, photos, downloadable books, movies and songs–all accessible by touchscreen. The options are really endless when you control the content you wish to go get or load yourself. And for things like storytime, the child will be able to look at books and turn the virtual pages like you would with a real one. Penguin is currently developing interactive kids books and schoolbooks for the iPad that look incredible. Check it out!

5. You can get make it tougher with a good case. Now, I know the iPad will not be indestructible by little hands, but you can buy a great case to make it a little more rugged. I like this one: Hard Candy Street Case. It looks pretty protective, and you can take off the front cover and simply snap it to the back when the tablet is in use.

So, there you have it. My “case” for getting an iPad for your child with autism. It’s something that will grow with them, and will be helpful for little kids and older kids. We’re going to integrate it right into his therapy, get training that’s on the same page with his therapist and what is useful for home, and hopefully get Josiah more empowered to communicate, learn and get more speech. Once we get juicy Apple into our hot little hands, I’ll let you know how it goes!