Picture Board

One of the ongoing problems we’ve had here that we’ve felt most depressed about has been our J-Man’s fear and loathing of most stores and many public places in general. This began about a year ago when he had a full-blown panic attack at Target, a place we’d been to countless times previously. We tried for months to figure out whether there was something about that specific trip that bothered him or just something in his development, and we couldn’t come up with anything. We tried going back a couple more times not long after that particular ‘adventure’, and each trip resulted in the same panic.

We had no idea what to do. He typically would consent to being carried in my arms, but we can’t shop like that. That’s doubly not an option when you have two kids. I did actually carry him into the mall several months ago in order to go to Stride Rite to find him some shoes. He desperately needed shoes (and he needs the wide shoes we can only find at Stride Rite), and I couldn’t think of any other way to get through it. I felt terrible for him, but we had to physically go this time because he’s an oddball width, and we needed to try specific shoes to see what would fit him. Let’s just say it was so difficult that I pulled several muscles in my back and prayed we’d never have to go again. (To Stride Rite’s credit, they were very patient and understanding with him.)

We went through some rough phases last year in general, and this could have played a large part in all the anxiety around public outings. But these misadventures made us very reluctant to try again both because it was clearly such an awful experience for him and we didn’t know what to try to help get us all through it. So we ended up doing most of our errand-running while he was at school, but we never stopped being depressed about all this.

We got to the point where we knew we had to figure this out. We needed some outside help. Cue our developmental therapist and savior.

Recently, we finally progressed far enough along in our county disability services to receive 10 hours of in-home developmental therapy (DT) each week. We worked out a set of goals with our DT, case manager, etc. – some ambitious ones at that – and got started. Not surprisingly, between school all day and DT some afternoons and weekends, this makes for a full calendar for the J-Man. However, he’s handled it well and really thrived with our DT. She rocks!

One of our big goals was helping him be more comfortable in public, particularly in stores and malls. We can go to certain public places if there’s something he likes to do (e.g., go to a park) and there’s not a ton of people or too many wide-open spaces. Otherwise, the potential for disaster is constant.

The reality by this point was that we hadn’t gone to the store as a family in about a year. This has been a real source of sadness for us. We don’t want to put him through things that make him that upset, but we do want to do things together obviously, and he does need to learn how to be in public. So, we set overcoming some of these challenges as one of our major DT goals.

We brainstormed with our DT for probably a couple of weeks about how we were going to try to take him to Target. We decided to go on a weekday when he wasn’t in school and earlier in the day when hardly anyone was in the store. We also chose to set a very modest goal for the first time. We’d structure the trip as much as possible and try to be in and out in less than five minutes. Our realistic goal was just to get in the front door. If we had to turn around and leave at that point, that would be OK with us. We’d try to get further next time. We decided that pretty much anything beyond that would be gravy.

But we structured it as if we were going to do a complete, yet miniature, shopping trip. The J-Man, the DT, Dale Jr., and I all would go to Target, find two things in the store that the J-Man recognizes and likes in some way, put them in our basket, buy them, and leave. We decided to create a little picture schedule on my iPod in hopes he’d understand each step we would take while there. It was a simple list: Go to Target (picture of a Target store), Get cookies (with picture of Chips Ahoy, which he doesn’t eat but likes to hold), Get chicken nuggets (picture of the box of Tyson Breast Nuggets, one of the only foods he’ll eat), Buy them, then Go home. Each time we finished one, we could check it off the list.

We went over all this with him verbally and with pictures before we left home and again in the car before we got out at the store. I had no clear sense whether he understood what I was telling him, and particularly whether he was agreeing to participate, but he had no adverse reaction up to that point. The proof would be when I got him out of the car and tried to put him in a shopping cart. We knew there’d be no way on earth he’d walk on his own in the store at this point.

I carried him from the car to the front door. (Thank God for handicapped parking placards!) We went through the door to where the carts are. So far, so good. I listened – by sound and touch – to his various body signals. I’ve developed a pretty keen sense of when we’re close to him panicking. I felt an increase in his tension, but he seemed like he was hanging in there. So far, still OK.

We tried to put him in the larger kids cart that has a double seat, where presumably he could ride next to Dale Jr. in a seat large enough to accommodate him. No dice, but he didn’t react strongly to it. He offered enough resistance to get his point across but didn’t fight or loudly protest or anything. So we passed on that idea. I then tried putting him in the main part of a shopping basket. Same kind of resistance – enough to get his point across, but no panic yet.

So I tried putting him in the ‘toddler basket’ part of the shopping cart. This is where he used to ride long ago, but he’s outgrown it by quite a bit now. But he was agreeable to this. Instead of riding sitting up with feet through the basket holes like you’re technically supposed to, he rode mostly sideways scrunched up in that part of the cart. He’s probably 15 pounds over the design limit there, and all I could hope for is that they built in some redundancy. We’d gotten this far. We were plowing ahead.

I took out the schedule and we checked off the Go to Target step. Score! Next we went and got the cookies. He took them from me and clutched the bag like he was in a desert and this was the last water on earth, but that was OK. We took out the schedule, checked off the cookies, and I told him it was time to get the nuggets now. Two for two! We went to the freezer section, got the nuggets, I took out the schedule, and checked that off the list. Holy cow, I thought. We’re going to pull this off.

His eyes were darting around some, and I could feel his body tension fluctuating – a sign he’s uneasy but trying and otherwise finding enough to hold his interest to get through this. We went to the checkout line. I went to the lane with the guy I recognized, who we’ll call Redheaded Checkout Dude. I swear you could walk through his lane in a spandex wrestler’s costume screaming out random phrases and he’d be cool with the whole thing. This is a useful attribute to look for in your local store employees. The only minor issue we had was that the J-Man refused to hand over the cookies for the price scanner, so Redheaded Checkout Dude nonchalantly took out his wand scanner with the super long cord and scanned the barcode on the cookies through the J-Man’s protective fingers. Done. I swiped my card, got my receipt, and I took out the picture schedule and said, “All done! Great job! Time to go home!”

I could sense him relaxing a bit. Extracting him from the cart was a bit of a challenge because of how he was wedged in there (which in and of itself likely helped him sensory-wise), but as long as he got to hold on to the bag of Chips Ahoy, he was OK. He kept his death grip on the cookie bag until we got home. I didn’t care what he did with them at that point.

This trip to the store went beyond my wildest dreams. We were speechless. I’m honestly not sure whether the schedule helped a lot, a little, or not really at all. Maybe it was that, maybe it was the passage of time since we last went, maybe he’d grown comfortable enough in his own skin and in the world to be ready. I don’t know. But we did it, and I was thrilled to the point of tears.

That afternoon, I got really ambitious. Dale Jr. was home taking a nap while Mary worked in our home office. So the J-Man and I went by ourselves to Lowe’s to get a couple of random supplies I needed. No schedule this time. If we needed to leave early or not even really go in at all, so be it. I was feeling brave and riding the high from the morning’s success. I was feeling how much I wanted to get back this part of our life together.

Maybe it’s a father-son ritual we’ve somewhat missed out on that’s made me sad for a long time now. But we cruised the store for a while, and he seemed content to look around and take it all in. Again he rode in the shopping cart sideways in the toddler basket. We got the couple of things I needed, paid for them, and left. I felt like I’d won the Super Bowl. Being able to go to the store together – just the J-Man and me – has been really special. We went almost a year without being able to really go out and do much together. Sometimes with the J-Man, one good experience is enough to get him over whatever barriers led him to avoid something before.

When we finally went as a family – all four of us – on our first public shopping adventure in eons, it was a memorable experience. It made us happy to do ‘normal’ family activities, just the basics of life like getting groceries. No big deal to most people, but a very big deal to us.

Next trick is the mall. No real cart for him to ride in there. He might still fit in the jogging stroller – though I doubt it – but there’s no guarantee he’ll even get near that stroller anyway. We’ll attempt to plan something quick and simple there that hopefully will appeal to him in some way and then try the picture schedule again. We’ll let you know how it goes.

Every child is different, but for what they are worth, here are my suggestions for what to try if you are having trouble going anywhere in public and want to take steps toward improving this.

  • Plan in detail a very simple and quick trip to one place (e.g., the grocery store). Keep your goals realistic. As I said above, we picked two – and only two – very familiar grocery items and created a visual schedule of what we planned to do and stuck to it. If you’ve used social stories with your child in the past, this is a great time to use one. If we were able to do everything, the trip would take less than five minutes. You want to create the conditions for success as best you can, and short and simple is the easiest way to do that.
  • Go at a time when the place you’re going to isn’t as crowded. Mid-morning on a weekday if you can work that out seems like the least busy time around here.
  • Have some calming techniques ready if your child does become very anxious. For us, there are certain songs I can hum or sing that will lower his anxiety levels some. These may only buy us a little time, but sometimes that’s all you need. Don’t be afraid to resort to bribery on these initial attempts. It’s better to employ these as you start noticing your child becoming anxious rather than waiting until full panic sets in. At that point, it’s often too late.
  • Have an extra adult with you in case you need backup or reinforcements to help with your child if he/she panics.
  • Build in some reinforcers. We bought items he is familiar with or is strongly attached to. I believe this helped a lot.
  • If your child’s anxiety levels get very high, be OK with leaving and trying again another day. I don’t think just getting through it come hell or high water simply for the sake of doing so helps anybody. Remain as calm as you can. Even though calm doesn’t necessarily beget calm, it certainly is more likely that becoming outwardly frustrated and upset will only increase your child’s anxiety. You want to give your child the best experience you can given the circumstances. A positive, or even tolerable, experience provides reinforcement and hopefully gives you something to build on next time. If your child only remembers it as an awful experience, it only makes it that much harder next time.
  • Don’t give a flip about what other shoppers think. This isn’t about them. I know that’s hard sometimes, but focus as much positive attention on your child as you can. I do think our kids can sense our stress about others around us in public places.
  • Learn from the experience. Whether it went perfectly or just sucked for everybody, make notes about what you tried and what happened. I recommend this for anything you’re struggling with. You can look for patterns and either try to find ways to improve things next time or, by noting what worked, see what techniques you can build on for next time.
  • Don’t give up. Our latest experiment with trips to the store went beyond our wildest dreams. I am not as hopeful about going to the mall given that it’s harder to structure and control. But I am determined to find a way to make it work and for it to become an experience our son is at least OK with. Being in public is an important skill to learn, and we have to find strategies to help our kids with that.
  • Ask for help both in your local community and online. Other parents have been through this, and there are plenty of professionals who can help you look at the situation with fresh eyes and come up with ideas.

Good luck to us all!

Thanks again to Danette Schott at Help! S-O-S for Parents for including this post as part of her May “Best of the Best” feature on anxiety and stress as they relate to invisible special needs, which will be published on May 15, 2011. She’s collected numerous posts from some top-notch bloggers, so make sure you check it out. And while you’re there, make sure you take a look at the previous editions of “Best of the Best”!

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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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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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coffee-strip.jpg

coffee-area.jpg

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Like a candle

by Mary on December 5, 2009

For the past few days, we have been schedule freaks. OK, everyone except Dale Jr. He does what he does, when he wants to do it! For everything else, we have pre-planned, pre-made where available, and pre-decided, all before the kids get out of bed in the morning, or after they go to sleep at night.

The J-man’s teacher (hi Mrs. Jennifer!) and his OT (hi Mrs. Jamie!) came over on Tuesday afternoon, and had some good, solid, concrete suggestions about his current sensory issues. The suggestion that we all thought would be the best was to use a picture schedule at home like they do at school. I mean, we already had what we thought of as “routines” but those routines seemed to leave a lot of downtime, and downtime is NOT what the J-man needs right now.

So, man, have we kept him on track! And it seems to have helped, to a certain extent. We’ve still had the “stop, drop, and flop” happen a few times but there has been less stimming and random screeching. WAY less putting hands over ears. I am, however, tired of Pinky Dinky Doo, since we can only have the TV on during the scheduled TV time now, and that’s all the J-man has wanted to watch. Thankfully, he asked for Rachel today. YAY for Signing Time!

We’ve added an enormous amount of brushing. It seems to calm the J-man immensely, and he really likes it. I think if he could request it, he would. In fact, sometimes when we’re done with the “brushing and squishing” routine, he hands the brush back to get whoever is doing it to start again – and so we do.

We’ve changed our eating style – we used to eat in the living room, on tray tables, watching the evening news. My mother will be pleased to know that we now eat at the table, together. This means I have absolutely no idea what’s going on in the world right now, since, as I mentioned, if the TV is on, it’s Pinky Dinky Doo. I don’t stay up late enough to watch the 11 PM news. Tim is up that late, but it’s because he’s working. With all of the hands-on parenting, he’s not really getting any work done during the evening the way he used to. Yeah, our schedule still has some kinks to work out (like, when to MAKE DINNER for the parents) but I’m hoping we figure something out soon because otherwise, Tim just doesn’t sleep, and that’s bad.

Last night, it all came together because Dale Jr took a nap right about the time I needed to put dinner in the oven. The J-man and Tim were outside, swinging, and I scurried around getting everything ready. Right before dinner was ready, Dale Jr woke up, so while I fed him, Tim got dinner out of the oven, then I finished everything off and we sat at the table. The J-man finished his nuggets and applesauce quickly, then asked for “sticks.” When I gave him the container of sticks, Dale Jr was starting to get fussy sitting in his high chair.

Tim and I have given up talking during dinner because we’re shoving food in so fast, but we weren’t anywhere near done at that point. The J-man calmly picked up his container of sticks, walked around the table, sat down at the chair beside Dale Jr’s high chair… and stayed there, looking at him while eating. Since Dale Jr ADORES his big brother, that was enough to make him happy, at least for long enough for us to finish eating. The J-man saw someone in trouble, thought through how he could make it better, and did so.

That action brightened our day. It was just a little light, a match struck, but it stayed lit long enough to light a candle. I look forward to many more candles burning brightly.

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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.

[click to continue…]

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What’s Your Autistic Toddler Like Now? (Part 2)

February 22, 2009

This is Part 2 of our series “What’s Your Autistic Toddler Like Now?”, a journey through what’s happening these days in the life of our autistic 3 1/2-year-old son and sequel to our very popular original article, “What’s Your Autistic Toddler Like?”. Note: Wherever you see “DSM-IV” below, this means that attribute is part of […]

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What’s Your Autistic Toddler Like Now? (Part 1)

February 20, 2009

Many times over, our “What’s Your Autistic Toddler Like?” post is the most read article on this site. It’s also the post people most often cite as the reason why they write us and become regular readers of our blog. We are gratified by your response to our story about our son and hope all […]

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