Letters

There are now three of us at school who are iPod Touch addicts when it comes to frantically searching for an app that will help free us at least to some extent from the mountain of little picture cards, strips, and communication boards strewn all over our house and car. It’s either that or you never seem to have the ones you need with you in a particular situation. There are numerous great iPod/Phone/Pad apps out there now for picture communication, and my two iPod friends have indeed found a couple they really like. I was certainly impressed with them, too. There’s a lot of creative work going on out there in app developer land.

But here at Chez Flashlight, we have what at first seems like a minor issue, but in the realm of iPod and iPhone communication apps it quickly becomes a much more daunting one. Because the J-Man likes written words and can read many of them, he does remarkably well with pictures as long as they are labeled, and usually the bigger the label the better. We’ve even worked him toward schedule strips with small picture icons and larger written-out words. (See below.) Our more traditional looking picture squares get larger and larger word labels as time goes on. The problem? The iPod and iPhone apps we found so far focus on the picture and much less on the word label.

Schedule Strips

Schedule Strips

Schedule Strips

[Examples of picture strip-based schedules. Follow it like a list. Compare with his aging food choice card below and notice that the pictures above are now just icons with large word labels (or large words with little icon labels). Obviously we now have a zillion disorganized strips that seem to multiply like rabbits in the house.]

food-card.jpg

[J-Man's food choice card that he's been using forever.]

For the most part, this has been a good ‘problem’ to have. We are all convinced, however, that he has hyperlexia. Hyperlexia is where a child has reading abilities beyond or well beyond age level and often a strong fascination with letters and numbers, but it’s often accompanied by significant difficulties understanding speech. Indications also are that while being able to read at a high level, the child may not actually comprehend much of what he/she is reading. It’s thought that a noticeable percentage of autistic children are hyperlexic, and there’s a theory that children with hyperlexia are usually on the spectrum somewhere. There are cases when, for example, you ask the J-Man to point to a ‘butterfly’ in a book that he points to the word and not the picture. This can make teaching what the word means and how to generalize it more challenging, but we can work with that. The good news is that we believe we can leverage his reading strengths to help him compensate for his verbal communication challenges.

The issue is that so many picture communication tools for his age assume that there’s not much in the way of reading skills there yet, or at least that those skills are secondary to picture recognition. And really, this isn’t unreasonable. The assumption – I think – behind most of the current iPod/iPhone/iPad apps is that the child is picture-visual rather than word-visual (written words are still visual), will become more and more verbal, and between that and pictures will be able to communicate their needs. The problem is, what do you do when the child over time still only minimally talks or doesn’t talk at all, their needs become more and more complex, and you just don’t have enough pictures to capture it all?

Maybe it’s just me and my limited abilities to grasp what to do here, but as the things he wants to communicate become more abstract and nuanced, pictures alone just have a very hard time overcoming a communication barrier with a more verbal world or at least with parents who are struggling to learn a language that best suits him. I know it’s possible to develop a picture-based, visual language, but we have to be able to understand what a visual means to him and he has to be able to get his point across. We have to find someplace to meet in there at least until we build a foundation to work from.

Obviously, this is a complex issue that we can’t do more than scratch the surface of in one post. The main reason I bring this up is that I want to find an app that meets his needs, and I haven’t found it yet. Apps are so expensive, few of them have trial versions, and $35-$200 is a lot to pay just to try something out. There are some very cleverly done apps out there that I’ve tried, and I’ve dabbled with a lot of them, but all of them I’ve looked at focus mostly on pictures and put text as secondary. An app that put pictures and text on more equal footing might get us somewhere. Maybe something like that would address the needs of kids like our J-Man who are either more interested in words for visuals or are just at a level developmentally where they are ready for reading.

The leading contender I’ve found is Proloquo2Go. It’s the only one I’ve seen so far that appears to allow for both picture and text-based communication in such a way that both can be prominent and we can leverage his reading skills. The problem? It’s $190 and has no trial version. That’s a lot of money for something I’m not sure about, but the video tutorials are compelling and its extensibility and customization options put it well above anything I’ve tried so far. In the past, I’ve considered Proloquo2Go more of an app for older kids and adults, but I’m beginning to see the possibilities for our now five-year-old.

Anyone have any suggestions about iPod apps? If you are an app developer and think your app either addresses the above already or you’re working on an app that might, drop me a line.

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According to his teachers, the J-man is going through the Terrible Twos/Threes developmental stage. Since he is pretty close to five, it’s a little hard to deal with. He pushes our buttons in many ways, every day. From just being incredibly loud when Dale Jr is trying to sleep to outright physical defiance, he has been a true stinker. They say at school that he is being physically oppositional to things he’s done for almost 2 years now.

And they say it’s normal.

I’d be telling a lie if I didn’t say this was hard. I’m kind of amazed at how hard it is. Our chiropractor has been getting a lot of our business, just because we keep “playing hurt.” Of course we do – that’s parenting, but the physical aspect of forcing the J-man into and out of clothes alone is draining, and that’s been one of the smaller problems.

However, at the same time we are seeing startling upswings in language development. It’s not like he has all of a sudden started TALKING, but he is certainly much more willing to do things like speak some of the words of songs he has heard for years, or tell us that there is a “cookie” on the screen when Rachel is talking about “dessert.” His receptive language skill has definitely increased… now, whether he will actually follow a direction is more of a behavioral issue, but he KNOWS what we’re asking.

I wonder how much Dale Jr’s progress is helping the J-man. You should see how irritated the J-man gets when we’re reciting the alphabet with Dale Jr. (Yes, our one-year-old knows the alphabet. Thank you Saint Rachel!) Dale Jr hasn’t mastered the K sound yet, so when he gets to K and Q, he just skips them. It’s hilarious to us, but NOT to the J-man. It’s causing him to interact, if just to remind Dale Jr that there ARE those 2 letters in the alphabet. (We don’t actually skip them when WE’RE saying them, Dale Jr just pauses and waits for us to catch up to him.)

We’re kind of at the point where it’s time to hire someone to help us structure the house to help the J-man. At our “emergency” parent-teacher conference last week, Ms. Jennifer gave us the name of an organization that does that kind of thing, and we’re going to call them. We are hopeful that if we can get our house a little better organized toward meeting the J-man’s needs that we won’t have as hard of a time as we’ve been having with behavioral issues – that we can clear the sensory stuff as an issue, and then be able to focus on changing behavior that’s just behavior.

I’m pretty sure we’re at that point though, where the only thing that stays the same is that everything is changing. And that’s not so bad because it means we are moving forward, looking for the light at the end of tunnel, and believing with all our hearts that it’s not the train coming the other way to mow us down.

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Simple Gifts

by Tim on August 31, 2009

This has been an eventful week here in the Flashlight House to say the least. Late last week we celebrated the anniversary of Mary’s 29th birthday! And tomorrow the J-Man turns 4. I can’t believe it; time goes by so fast.

We don’t do much in the way of birthday presents or parties around here really. We’re a pretty low-key bunch. About all Mary and I do for each other is the one not having the birthday goes and picks up takeout, we try to spend some unhurried time together, and we each get some additional me time that typically involves one of us getting a couple of hours out of the house sometime around our actual birthday.

The J-Man seems like he really couldn’t care less about birthdays. Actually, birthday parties routinely upset him. We’ve gone to his friends’ parties, and – understatement warning – rarely does he enjoy himself much. Strange places, crowds, noise, lots of running kids, etc. just don’t do for him, which I can understand. We go because we feel like he needs some practice at social events, but we know when he’s had enough and adjust accordingly. I can’t remember any of his birthday parties where he didn’t just burrow into somebody’s shoulder most of the time.

The concept of presents to unwrap doesn’t seem to click with him either. His general lack of attachment to things doesn’t lend itself to being excited about gifts on his birthday, Christmas, or whenever. And in what seems endemic to autistic kids, he absolutely hates the Happy Birthday song. He covers his ears and retreats into himself. Somebody really needs to do a research study on this phenomenon.

So, we decided to forgo a birthday party for him this year and celebrate it more in his style rather than in the way I think people (and for a long time us, too) expect it should be. We bought him a new swing for the swing set outside, one with a high back and built almost like a small, plastic recliner. He can’t use kid swings because when he gets excited and stims out, he lets go of the swing and flies off. (Thank God for mulch…) Obviously he’s too big for a toddler bucket swing. This new one is rated up to at least 100 lbs and has a five-point harness.

The weather is supposed to be absolutely beautiful tomorrow afternoon when he gets home from school. (70s in early September?!) What will be our birthday party then? Swinging outside – just us and my dad. Simple gifts. But the kind he loves most of all.

These past few days have gone like that too – one small but unspeakably wonderful gift after another shining through even in the midst of the craziness of everyday life.

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In our last IEP goals recap from last quarter, the J-Man had a great nine weeks overall and showed great gains. This past quarter just ended last Thursday, and our little superstar continues to make great strides toward what we thought were some pretty ambitious goals for this year.

As a refresher for those curious about how we do things around here, the quarterly evaluations are done based on how well the kids are progressing toward meeting their IEP goals for the entire year, and then they’re assigned an evaluation code based on the following scale:

1 – Insufficient progress to meet IEP goal by end of year; below expected mastery of goal at this point in the year
2- Skills are emerging; mastery of goal is still inconsistent; student needs support to meet goals
3 – Consistent progress toward goals; on track to meet annual goal
3* – Consistent progress toward goals + some evidence of application and independence (Not sure why they need another 3 score here, but whatever. “Application and independence” are definitely two words we like.)
4 – Annual goal has been mastered; able to generalize the skill independently in multiple settings.

As I mentioned last time, don’t ask me why they felt the need to add a 3* in between 3 and 4 rather than just fix the scale to begin with. But anyway…

We rounded the halfway mark of this year early in March, so in light of that, his progress toward goals he has a few more months to meet is awesome.

Here are those categories and all the great stuff he’s been up to lately.

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The Perfect Toy?

by Tim on March 8, 2009

It’s been a long few days of continued sicknesses and traveling out of town – which by the way went pretty well by our travel standards – so we’ve been slow to report much in the way of what’s up around here lately. (Pretty much just sickness, pregnancy, school, and work if you’re really dying to know.)

At Mary’s parents’ house, we discovered what may be the ultimate J-Man toy!

race-cars.jpg

Numbers and words and wheels, oh my! What’s not to love?

He carried these around pretty much everywhere. He had a bazillion little cars to choose from at their house, but he always chose these two. Just for fun, I looked through the pile of other cars and none of them had such a combination of numbers and words. No mystery here!

Also not surprisingly, we rediscovered over the weekend that Wheel of Fortune is also a huge hit with him. Big letters stay on the TV screen for long periods of time – it doesn’t get much better than that.

Note to J-Man – I am NOT putting numbers and sponsors on our car. Well, on second thought, find us a rich sponsor and I’ll consider it.

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Fun With Folder Games!

by Tim on January 14, 2009

Because 99% of the stuff in a toy store isn’t really made with the learning needs of autistic children in mind (not likely gonna see “For reading levels 6 and up and speech levels 1 and up!” on a toy) and because there’s no telling what the J-Man will play with and what he won’t, I’ve started making ‘folder games’.

These are just very cheap learning games made from manila folders, velcro dots, and other stuff that you can for the most part find around the house, or for almost no cost at the store. And when you’re done with them, you can just fold them up and slide them on a shelf.

The ones I’ve made lately center on matching words with objects (e.g. a square of one color, then he puts the word under it – or vice-versa) with some number and letter matching thrown in too. This seems like a big leap in mental effort for him, so his attention span is lower. But that’s just how he normally is with newer challenges, so it’s nothing unusual. He perseveres and soon amazes us with the things he can learn.

So I’d like to show you three examples of these folder games. I think the entire cost for these three activities took less than $2 out of the supply budget plus the time it took us to make them. And as a bonus, the folders themselves are reusable for countless other activities I haven’t finished yet.

Folder_Game_1.jpg

This is just a manila folder with eight velcro dots stuck in it – four for the color squares, which are made from construction paper – and four for the label strips, which I printed off my computer as sheets of about 20 words each and then cut them out. All of these things are laminated with matching velcro dots on the back so they’ll stick to the folder.

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Many Ways to Say ‘I Love You’

January 3, 2009

As I described yesterday in the “One Syllable At a Time” post, we’re getting some great mileage out of breaking everything down into these syllable-by-syllable exchanges, going as far as dividing one syllable sounds into even smaller parts as needed. So, much to our eternal and unending delight, the J-Man has two wonderful sentences he [...]

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One Syllable At a Time

January 2, 2009

Since we’re still in a post-holiday funk around here and about as lively as the furniture, I’m doing a little content recycling today from a recent comment I made to at least get back to posting. I think all the endless eating and football-watching has killed off a bunch of my brain cells! Over the [...]

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