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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Visual Math?

by Tim on August 30, 2010

This one boggled my mind. I’ve always said that one of the most important skills a parent of an autistic child can have is that of pattern recognition. There is usually a reason why your child does something, and I’m becoming more and more convinced that if you study the pattern of what’s going on with and around your child and what they do or create within that, you may begin to figure out the why behind what he or she does. I have slowly developed this skill at least to some degree either through experience, knack, or outright necessity. I was really glad for it today.

Not surprisingly, it’s hard to evaluate the math skills of a non or minimally-verbal autistic child. That difficulty may easily span much further along the spectrum, but I can only speak from our own personal experience. It didn’t dawn on me until the J-Man built the following – and I figured out at least part of what he was doing – that he might be more able to express the math skills he does have visually. I think he gave us his first big clue today that this is indeed a real possibility.

The J-Man constructed the following two towers out of Duplos. He actually built two more along these lines, but I didn’t get pictures of them. See if you see what the relationships are. (Answers included at the end.)

j-visual-math-99.jpg

[Hint - We actually found two 'answers' to this first one.]

j-visual-math-14-7.jpg

[Hint - I think there's only one for this one.]

OK. Figured them out yet? Scroll down for what I saw at least. If you see something I didn’t, please post in the comments! And while you’re at it, how do we expand on this discovery?

 

 

 

 

 

 

 

 

Tower 1: It’s 9 blocks tall to the top of the shorter side and 9 more blocks up from there to the top of the long side. Also, the color pattern of the first 9 blocks repeats with the last 9. That’s some serious patterning.

Tower 2: The shorter side is 14 blocks tall and then it is 7 more blocks up to the top of the longer side. Nice way of showing how to double a number, show 2/3 and 1/3, or just generally show an appreciation for something like the Rule of Thirds for Lego building. The color pattern this time doesn’t repeat obviously (dawned on me just now that he didn’t have the necessary color blocks to do that if he wanted to). However, it’s possible there is a color pattern to this that I didn’t figure out. That’s happened before.

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One Inch Closer

by Tim on August 26, 2010

The journey of a thousand miles begins with one step. – Lao Tzu

We recently had our annual IEP meeting, which we are thankful beyond words is actually a fun experience for us. We feel like we completely lucked out in getting great teachers, therapists, parents, students, and administrators!

While the J-Man had several very rough patches over the last school year – precipitated by becoming a big brother and realizing this little person in the house was actually staying – he did make great strides in some areas. And we are so happy and proud of him that he’s starting off this new school year with a bang.

We brainstorm his educational goals for the coming year with his teacher during the couple of weeks prior to the IEP. We don’t officially write anything until it’s time for the actual IEP meeting, of course. Brainstorming beforehand speeds up the meeting. We just start out with whatever array of goals we have for the coming year and then look at which ones are appropriate for the IEP. Examples: “We’d like for him to eat some new foods” isn’t really an educational goal let alone a measurable one, but it’s an informal goal we know we’ll work on together at home and in the classroom. “The J-Man will imitate up to 8 motions in familiar songs/fingerplays with minimal prompting 50% of the time” is one of his actual goals for the next school year.

Not surprisingly, those educational goals for the IEP are for areas in which he is ‘behind’. As we’ve said numerous times in the past, we have no idea what a ‘typical’ five-year-old is doing at this age to have some benchmark to work from in creating those goals. So we just list everything in our brainstorming and figure that part out later.

We already knew his reading skills have been above, if not well above, age level for some time. With him being only minimally verbal, it’s hard to know with much precision. As a result, we’ve not had any reading goals in his IEPs. Over the last year, he’s been able with decreasing assistance to write a couple of letters, particularly ‘E’ and ‘F’, and he’s working on some more. (The school uses the Handwriting Without Tears method, which has worked brilliantly for him and the class.) So a goal Mary and I put on one of our lists was to expand his writing skills to additional letters. What we didn’t realize initially is that the J-Man’s writing skills are pretty much at age level right now! Woo hoo! That’s news you love to hear! Of course we’ll be working on those additional letters, but we can cross that off the formal, IEP, educational goals for now.

There was a specific achievement we were particularly proud of him for. He’s graduated from his fine motor skills work with the occupational therapist! He’s able to do the various ‘age-appropriate’ tasks asked of him! He’s even renowned for his wild finger dexterity because he’s been known to hold a bunch of snacks in his hands and manipulate other objects at the same time. To think that we started years ago where he refused to even hold anything and then struggled to learn every new task because of all the fine motor planning and sensory revulsion involved. This really is a momentous achievement for him. We are so proud!

Sure there are a lot of areas in which he still struggles, but that’s OK. We’re getting there, and he’s bravely working to overcome all the obstacles still in front of him. It’s important for each of us to celebrate every achievement our kids make no matter how seemingly small those may be. To our kids they can be like winning the Super Bowl. And we should jump up and down and run around in the confetti with them.

Every great milestone they reach comes from the seemingly unending line of inchstones our kids have strung together, one hard-fought step after another. One more second of eye contact today may be one inch closer to more comfortable social interactions as they get older. Just getting the J-Man to put his lips together as one of a number of things that have to happen to form the ‘p’ sound is one inch closer to better communication. A bite of a different food, sleeping 30 minutes longer, a rare embrace, a beaming smile, a calmer trip to the store, and any of a multitude of other victories bring us one inch closer to our kids being able to express their wonderful selves as completely as they can.

This is an ultra-marathon we’re all running, but if today or tomorrow or whenever we get even one inch farther down the road, someday we’ll get to points like we just had when we look up and realize we just tripped over a landmark. We can look back in the direction we came and see how far we’ve come. And then we can face forward again out into that unknown and say like the explorers of old, Well, we made it this far and we’re still in one piece. Let’s keep going and see what’s next.

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Shut Up

by Mary on August 23, 2010

Last week we had a parents’ night at school, and discussed communication. The topic was so popular that they were a little overwhelmed in the childcare area, so I ended up leaving about halfway through and helping out. (I carried around the 2 youngest kids and sang to them. My arms still hurt 3 days later.)

We talked about picture boards, and choice boards, and expecting MORE from our kids in terms of communication… but maybe sometimes LESS in terms of spoken words. One of the things the teachers kept stressing was that parents need to remember to stop themselves from overwhelming the kids… with words. They really pushed using pictures to illustrate what the kid needed to say, instead of constantly repeating ourselves. For example, we should say “would you like some apple?” – and then if there is no response, pick up the picture card, and point to the applesauce – and be quiet. Just point.

This one is a hard one for Tim and me. I have to keep reminding myself to shut up, and give the J-man time to process and respond. And keep reminding myself. And keep reminding myself.

The teachers also suggested making the J-man interact with us more – by only giving him a little of what he wants, or only part of what he needs. For example, I know that every morning, the J-man comes downstairs and has applesauce, nuggets, and tea for breakfast. For the longest time, we just went ahead and had everything ready to save time. Now though, he has to ask for each of those things. We also have started giving him half a container of Veggie Straws, when he normally gets an entire container of them for a snack. If he wants more, he has to ask for them! (While I was typing, he asked for crackers… I gave him 3, when I’ve seen the boy eat an entire sleeve! So I’m waiting to get interrupted again.) They suggested when he asks to color, to give him the paper, but then wait for him to ask for the crayons, or even make him ask for specific colors.

One last thing we talked about recently was trying to move the J-man toward forming some letters correctly with his mouth – instead of B and P, he makes this “glottal stop” sound with his lips open. We are waiting (and waiting and waiting) for him to close his lips while making that sound, and only THEN does he get to watch Pinky Dinky Doo, or “do pillows” where we squash him on the floor with pillows for deep pressure. The past couple of times, I’ve just needed to tap my lips and say “lips” and he closes his. The sound is still the same at this point, but the lip position is at least beginning to change.

It’s so slow sometimes that I want to scream. And then, like the “P” lips closed position thing, it’s quick.

One more thing that has nothing to do with communication, but is just too awesome to not mention: I steamed some carrots for Dale Jr, but then couldn’t get him to eat them in pieces, so I ended up pureeing them. I added them to applesauce, and he ate them just fine. Hmmm… how would the J-man react? I am proud to say that he now eats applesauce with pureed carrots (OR pureed butternut squash) AND a dollop of plain yogurt mixed in. I think he may even like it better than the plain applesauce. That makes… NINE FOODS!

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What do parents of autistic kids want?

by Tim on August 17, 2010

We want to know that somehow, some way we are strong enough.

We want to see what we are working toward and have the perspective and wisdom needed to get there.

We want quality, clear, and accurate information because we have so little time and energy to think.

We want to know that we’re part of a really great story.

We want to figure out what our kids are thinking about in the worst way.

We want to have some better clue about how our kids see and experience the world.

We want to know we aren’t crazy, and we want other parents to tell us that.

We want to know that others are going through this daily chaos, too.

We want friends who can keep faith in the good and the awesome on the days we can’t.

We want sometimes for people to just shut up and listen to us talk things out.

We want to know that we aren’t alone.

We want the world to accept our children as they are.

We want to be accepted.

We want to go and do things like other families do.

We want to be able to go out in public or on vacations and not spend hours or weeks preparing.

We want people to stop judging us and our kids in public.

We want to feel comfortable in our own skin.

We want to be able to let our guard down for a few minutes and just relax.

We want quiet times where calm reigns in the house and content kids are curled up next to us.

We want to be able to savor every good moment with our kids.

We want allies.

We want acts of simple kindness.

We want more services and less paperwork.

We want the end of years-long wait lists.

We want to know that whatever threatens our children will not overwhelm them.

We want our kids to be safe.

We want to know that we are able to protect them.

We want to be sure that our children will be provided and cared for even after we are gone.

We want a way to keep our children from being bullied, taunted, or made fun of.

We want desperation to be rare and fist-pumping awesomeness to be commonplace.

We want there to be enough money.

We want people not to fight ‘autism’ but to fight against prejudice and injustice.

We want people to seek opportunities to help every child succeed, because we know they can.

We want what any parent wants — the chance for our children to fully live out their potential and their dreams.

We want to kick butt and not just get by.

We want people to know that our lives are challenging, not tragic.

We want everyone to know that our children are wonderful, beautiful, and perfect just as they are.

We want everyone to know that we will fight for our children until our last breath and beyond.

We want the world to know that we wouldn’t trade places with anyone.

What do you want?

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