Communication

After So Long, I Believe It Now

by Tim on November 21, 2011

Speak your mind — even if your voice shakes. – Maggie Kuhn

Our J-Man is starting to string syllables together. Not many, but he’s doing it. He’s slowly but surely doing it without prompting. It rarely exceeds three or four halting words, but he’s doing it.

This feels like our version of the moon landing.

After so long doubting that he would ever really talk, as I was pulling into the driveway the other morning, for the first time something struck me. I started crying in the car. I believe it now. I really believe it. He’s going to talk, and he’s going to tell us about wonders we never imagined possible.

Even if he never did talk, would it change how dear he is to me, how much I love him, how much I will cheer for him, how much I will fight for him, how awesome he is and will be? Not one bit.

But I see how hard he works at trying to communicate verbally. I see him get so frustrated and upset at being unable to get his point across. I want to know how he feels, what he thinks about, how he sees the world. I want desperately to find some way to unlock his voice. I don’t care if that’s via his voice box, an iPad, or something else. But I feel him trying to show us how much he wants to figure out how to use his own voice. The more Dale Jr. talks, the more amazing things I realize he has to say. And I feel more like a failure as a parent that I haven’t found a way to help our J-Man do the same.

Recently he has been scripting some. He’s stringing together sounds, syllables, and approximations to repeat things he hears, often from kids’ shows he likes such as the “Here’s the Mail” song in Blue’s Clues and the intro song to Pinky Dinky Doo. These are motivators for him, and we are all about those especially since so little historically has been a strong motivator for him. They are familiar, they give him something to focus on, he can use them to practice sounds, and most of all, they make him happy.

I know we all have kids spanning the entire communication spectrum, so to be clear, he’s not suddenly uttering these crystal clear sentences. Some words are shortened – some to the point they sound like rapid, breathless speech. Some of his syllables vary greatly in length and use stresses you aren’t used to hearing. His inflections at the end of words may be all over the place, though they sound almost melodic. But you know, it doesn’t matter how he does it because there’s no one ‘right’ way. This is the purest music to us.

We were talking with his speech therapist recently, and we were all rejoicing that he’s started experimenting with these inflections and different intonations. He’s trying to close off words and say all the sounds in the word, not just the first syllable or two. He works so hard to get it all out, and now he’s staying with it longer and trying to finish the words he starts. He’s known for his clipped, monotone syllables when he does speak. He’s creating his own verse now with rhythm, tone, and meter all his own, and he continues to experiment and improvise.

What he’s doing now sounds like jazz. No, it is jazz.

He experiments with the notes. He is unbound by the stress and unstress of our so-called speaking. He is finding his own way. He is making it up and discovering it as he goes along. We can’t make his mouth, tongue, throat, and lungs make the sounds. He is the musician here. We can try everything we can think of, but so much of this is his journey of discovery. And he’s doing it.

His syllables sway and dance haltingly like middle schoolers at their first dance. He takes verbal steps slowly, carefully, daringly like a toddler, but he keeps at it, laying out one syllable after another. He lines them up like whirling dervishes, dreamy sloths, or slippery snakes, not going where he wants them to yet, but indeed they are going somewhere exciting.

And like a crossword, enough clues are now filling in that it seems bit by bit to be getting easier for him. Eventually there’s a tipping point where the momentum shifts in your favor. Maybe, just maybe, we’re finally there. Slowly but inexorably, it’s happening.

He sees everything around him, feels entire constellations of emotions, has wants and needs, has opinions and ideas, and has untold riches to share with the world. He may experience some or all of these things very differently than most of the rest of us, but that’s what so wonderful about it. What he sees and feels and thinks is unique in all the universe. I want him to be able to share that with whomever he wishes to.

And now these little rays of sunshine are poking through. It’s going to happen.

I see his face beam when he does get the words out. The light bursts forth from every pore in his face. I see his whole body rejoice when he is heard and understood. If there is anything that makes my heart sing more than seeing this in one of our children, I don’t know what it is.

And most of all I see it in his eyes. He now believes it, too. It’s going to happen.

I want this as much as anything. I want him to believe in himself. I want him to know that he can find a way to do whatever he seeks to do, no matter how long it takes. Forget however long it takes anybody else. I want him to know that doesn’t matter. This is his journey of exploration and discovery. He may have to take paths less travelled, or ones not travelled at all. He can blaze his own trail through sheer force of will. There’s magic out there to be found.

I remember all the days trying to get more than ‘kuh’ out of him (the sound that once meant anything and everything). It took months of work day in and day out to get just one new sound. I remember having no idea how he’d ever find ways to communicate and how we’d ever be able to help him tell us what he wants, needs, and thinks.

But slowly and surely over these years, it’s happened. One syllable at a time, he has pulled himself up this Super Everest. I’m still not sure how all this will turn out, but he’s made a believer out of me. He has that effect on everyone.

After so long, I believe it now. And we get to spend the rest of our lives discovering everything he has to say. How amazing is that?

{ 5 comments }

A Case for Kids Repeatedly Watching the Same TV Show

by Tim on June 19, 2011

The J-Man has a tendency to want to watch the same episode of the same TV show over and over again. I imagine this is not an earth-shattering concept to many of you, and it’s not for us either. But I got to pondering why, looking for something beyond the more obvious.

It’s also not earth-shattering news that autistic kids often engage in many kinds of repetitive behaviors and prefer to repeat familiar activities. I’m sure this plays an important role in why he likes chain-watching the same episode over and over. I believe there’s a lot more to it than just that, though.

To an outsider, this sort of behavior may seem ‘non-functional’. (Hey, I think we’ve talked about supposedly ‘non-functional’ behaviors not long ago!) There certainly are many situations in which watching the same TV show over and over again may very well be little more than an occasion to zone out. However, I’m going to argue that there are conditions in which it’s not only functional but possibly a critical component to a child’s learning, autistic or not.

For what it’s worth, here’s my current thought on this issue. I believe there’s a much more specific point to his supposedly ‘non-functional’ repetitive behavior in watching and rewatching the same show. I think he’s practicing the content of the show in his head until he feels comfortable demonstrating outwardly what he’s learned. He often begins this process by watching a show in a manner that to an observer would seem passive. At some point he moves into this outward expression of concepts slowly, intermittently, and often subtly at first, but usually he’s pretty quick to get to where he consistently does it well. Like I said, it seems like he rehearses inwardly until he’s almost sure he’s ‘got it’.

For the J-Man, he particularly likes watching the same episode of Signing Time – an amazing, special needs-friendly series that teaches children American Sign Language and reading and language skills – and most recently Yo Gabba Gabba over and over. He’d probably watch an episode a half-dozen times in a row – at least – if we let him. However, it’s worth noting that the specific episode he wants to watch eventually changes, and the cycle begins again.

Here’s why I think what he’s doing has an important function to it.

* He is usually engaging with the program, first by watching intently, then interacting with it in some constructive manner (sometimes a lot, sometimes not as much, but he keeps a relatively high level of focus regardless), and involving us in some way, typically by using words, verbal approximations, or a few signs and expecting us to repeat them back to him.

* He displays greater comprehension of what’s in the episode over time. This is a very gradual process, but his assimilation of the material does increase the more he watches it. This strikes me as the very definition of practice.

* Whatever pieces of the episode that may cause him sensory (almost always auditory) distress seem to cause fewer issues over multiple watchings. It’s like he’s actively trying to work through this distress.

* This is similar to what he’s done often in the past. As a baby and young toddler, he just suddenly did things he seemingly couldn’t do before. There were any number of things we never saw him do at first. We’d just turn around and he’d done it. For example, it took us forever to catch him rolling over and sitting up. We’d turn around, and there he was rolled over or sitting up. He didn’t walk unsupported until he was 22 months old, but once he started, he was running around the house within two days. It’s like he has to organize everything in his head first before he does it in ‘real life’.

* Just as suddenly as he started wanting to watch an episode repeatedly, he often stops being interested in it. Typically this only happens after he’s started demonstrating multiple concepts he’s learned from it. Perhaps it’s because he’s gotten all he can from it for now. At this point, he moves on to another. This interest period typically lasts roughly 1-3 weeks.

Given that communication is one of his greatest challenges – and understandably one of the most frustrating for him – we look for more relaxed ways to help him practice communication. I think after a while he gets tired of being asked to interact with real-life people – most of us do! – so something two-dimensional like a TV screen or electronic gadget of some kind may prove a welcome respite for him. It’s hard to tell sometimes, but it seems that way just from what we can glean from his non-verbals and general mood.

I’ve been pondering these theories about this for a while now, but I’ve been skeptical of it for a long time because of my hesitancy to believe that TV is ever that great for kids (other than to give parents a break for a bit!). I still think for the most part that TV – of either the kid or adult flavor – is crap, but that’s another story. There are a few programs I think make a difference, though.

I’ve become much more convinced that the J-Man is learning a lot this way because of how amazingly far Dale Jr. has progressed in his development watching Signing Time and Pinky Dinky Doo with us. We do try to make it a family activity, though I confess sometimes we turn it on just so we can get a few minutes to eat or go to the bathroom.

Anyway, Dale Jr. just turned two recently. Right now he can: verbally identify almost all upper and lowercase letters (in a variety of fonts too), recognize and verbally label 8-10 colors with little or no prompting, identify God knows how many animals and objects (macaw!?), draw from a working vocabulary of probably a couple hundred words, talk in phrases and basic sentences and engage in some basic conversation, do all this in a variety of contexts (generalization!), read some words (he loves the J-Man’s written schedule board), and use more sign language than I can. Now given our family history, I wouldn’t know ‘typical’ development if it jumped up and bit me, so I’ve asked around, and everyone has told us that this is highly unusual at 24 months. Feel free to correct us if we’re wrong.

Rather than some non-functional, mind-numbing experience, I think this practice is really helping both our kids. The J-Man’s speech skills have increased tremendously of late. I’m not at all advocating dumping your kids in front of the TV all day every day. I’m inclined to think there are very few TV programs with which extended viewing would be appropriate regardless. However, I am starting to believe that using this approach with certain programs as part of a broader plan of, for example, developing verbal and reading skills can absolutely work.

We’re specifically convinced that Signing Time has been instrumental in helping our kids with word recognition, communication skills, and reading. The way they both interact with the show is quite amazing, and they, each in their own way, use those skills in other contexts during the day. We reinforce those skills all through the day in as many ways as we can.

I don’t want to turn this into a lovefest for Signing Time even though I think it’s deserved. Both kids also love Pinky Dinky Doo, which I think may be the most autism-friendly program on TV with all its structure. They’ve picked up tons from it, too. Very recently, they’ve both been really into Yo Gabba Gabba. I can see why Dale Jr. loves it because it’s so movement-oriented, music-based, and silly. I was astonished, though, that the J-Man enjoys watching it and even requests it verbally! If you’ve seen it, it’s not necessarily the most sensory-chill show in the world. It’s honestly kinda trippy. We’re still trying to discern what the J-Man is getting out of it, but when he requests something verbally and consistently, there’s something he’s working on. I’m convinced of this.

So what does this all mean? I do think structured kids’ shows that offer some level of engagement and that stimulate areas your child is working on (e.g., speech and communication, movement/imitation) can be worthwhile. I believe they can offer a lower-key way for autistic children to learn without all the extra energy it takes to interact with people socially. Therein also lies the caution. I see these TV shows as a complement only. The J-Man gets sometimes 9 hours or more of learning, therapy, and social time a day on weekdays. That’s a lot of people time, and socializing can be so draining.

If you set up TV watching times as opportunities for learning and skills reinforcement, I certainly believe it can work well for your child. As with everything else, think about it in context with the rest of the activities you and your team of educators, therapists, family, and friends are doing and how it fits in with your overall learning and developmental goals for your child. TV is simply a tool and a resource, and tools used wisely and for the right purpose can make a big difference.

If you’re interested in Signing Time and want to help support our site, you can get Signing Time DVDs through this affiliate link. We love Signing Time and understand that some people don’t care for affiliate links, so you can also just go to signingtime.com.

{ 8 comments }

Social Stories and the Revelation

by Tim on June 7, 2011

I love it when we have “Holy crap, I can’t believe that worked!” moments. They are admittedly rare, but sometimes you stumble across something that not only works but works so amazingly well that it’s a revelation. And the odd thing is that it may be something you’ve tried before, except now it just clicks for some reason. This time it’s social stories.

A bit of background for those of you new to the concept of social stories. Basically these are simple stories you create ahead of time or even on the fly – typically with both visuals and words – that you go over with your child as a means of rehearsing a situation that they are going to do ‘for real’. This lets you describe a situation to your child in a form that they often enjoy already – by telling a story. You can read it and talk about any pictures with your child in the same way you might Cat in the Hat.

This is a more elaborate example of a social story, but you can make them very short and simple, too. Here are a few more examples and more background on social stories. There’s even more info here (with some sales-y stuff).

Social stories serve many purposes. They can:

  • Explain potentially upsetting situations to your child ahead of time in a safe, calmer environment like your home.
  • Give visual references and cues that help your child understand what is happening, what is expected of them, or what they should do.
  • Serve as a sort of schedule they can refer to again while they are playing out the story for real.
  • Take advantage of our children’s tendencies to script things by providing a sort of script for a new situation.
  • Reduce resistance to a variety of situations in general.

However, whipping up a picture-based social story on the spur of the moment is often not practical unless you have the equivalent of Dora’s backpack filled with picture cards. It often requires planning ahead and typically some computer-based method of putting pictures and text together. It can work great if you are much more organized and forward-looking than we are, but usually it’s when we’re already neck-deep in the mess that we realize we need them.

Cue now the real-life examples of necessity is the mother of invention.

The J-Man’s class recently went to a school assembly that involved a lot of song and loud noise. Not surprisingly, this isn’t his favorite thing to go do. But his teacher, ever the quick-thinking genius she is, drew on her experience with him and her seemingly radical idea to call what must have seemed like the educational equivalent of a Hail Mary pass. She scribbled out a social story on a sheet of paper in a tiny notepad. Just wrote it out by hand, no pictures. And it worked. She read it to him, he appeared to read and reread it to himself a few times, and then he started to calm down. He even seemed to enjoy himself a bit toward the end.

The story was just something simple. I don’t remember it exactly, but this is close enough to get the gist of it.

The J-Man is going to an assembly in the gym.
Assemblies are loud.
People will be singing at the assembly.
Assemblies are fun!

At the bottom of the paper but folded over and hidden from view was “Finished”. When the assembly was over, she unfolded it, showed him “Finished”, and he got up and the class went back to their room.

I thought the success of this might knock us all flat. I didn’t think a social story would do much for him yet, regardless of whether it had words, pictures, videos, or feel-good drugs mixed in with the paper. The fact that a few simple sentences handwritten on a little notepad worked feels like me suddenly being able to bench press an airplane.

And if that don’t beat all, this has kept working, too. Our developmental therapist was with Mary on one of our ‘let’s go practice being in public’ trips to the store. The J-Man refused to go into the store and had a pretty major meltdown from what I heard. Being the resourceful, think-on-your-feet type she is, our DT typed out a social story on her cell phone and showed it to him. She read it to him, he read it to himself, and it worked.

Then at the pool the other day for our class field trip, the J-Man really didn’t want to go to the changing room with me to put on his dry clothes to go home in. He didn’t want to leave the pool either, but Dale Jr was seriously ready for a nap and we had to go. One of his teaching assistants had the inspired idea (sensing a theme here!) to write out a social story about it being time to go. We didn’t have any paper, so she wrote it out using a colored marker and the back of a pizza box. I kid you not. Basically it more or less said, “Pool is all finished. Time to change clothes. Then time to go home.” It worked.

I’m not sure which of these situations was more amazing. To say that I am still awestruck by this is an understatement.

So I’m crazily experimenting with iPod note apps that let you tinker with font sizes and save a library of notes so we can always have social stories ready. If this proves to be the key to overcoming all sorts of issues we’re having, I may start weeping with joy uncontrollably.

Here’s one I whipped up yesterday morning when he wouldn’t get out of bed. I typed this up on my iPod Touch in about 30 seconds. This is a screen shot.

iPod Social Story

He kinda laid there in the bed on his side and read it, looking rather thoughtful about it. After about a minute of motionlessly staring at it, he finally got out of bed and on we went.

Social stories don’t work that well or at all for some kids, at least not without a lot of practice. There’s often a disconnect, especially early on, where the child doesn’t make the connection that the story has a direct relationship with what’s going to happen in their lives.

When we were part of a research study last year, they sent us an illustrated social story booklet about what would happen during our visit. The J-Man loved reading it, but seemingly had no inkling that it was any different from the books he normally reads nor did he show that he made any connection between the story and the research study building when we got there. But that seems perfectly normal. Social stories take practice to integrate into daily life. I have for a long time viewed social stories as a neat idea and worth experimenting with, which we did, but not terribly applicable to our lives. Boy has that changed now.

We’ll keep you posted.

Anyone have experience with social stories that you want to share?

{ 6 comments }

Do Non-Functional Behaviors Have a Function?

by Tim on May 29, 2011

We seem to be in a more intense phase of trying to understand why the J-Man does some of the things he does. I’m a big adherent of the principle that behavior is communication. When our autistic children struggle with the various common modes of communication such as speech, pictures, and so on, we know we can often get a sense of what they want or need by their behaviors. The more we work on refining and honing our abilities to decipher our children’s behaviors and what they are trying to tell us, the more effective we can be in helping them.

Sometimes behaviors are pretty clear about what our child is trying to communicate (e.g., running around the room erratically making a lot of loud noise usually means overstimulation and too much situational stress in our house) and are therefore much easier to understand and then address. However, there are whole ranges of behaviors that are considered by many to be largely without meaning. But what isn’t so clear to me is why.

Some kids slowly tear paper into little strips or pick up small handfuls of sand and watch them fall through their fingers to the ground. Some call these abnormal, ‘non-functional’ behaviors. Autism is in large part defined by these ‘repetitive and stereotyped behaviors’. But why? Is it because these behaviors aren’t ‘productive’ or ‘useful’? Is it because this falls too far outside the norms of what paper or sand is supposed to do?

A classic example in autism is the whole issue of focusing on part of an object (e.g., spinning the wheel of a toy car) rather than the object itself and not using the object for its ‘intended’ purpose (rolling it back and forth and making car noises I suppose).

What if instead we think about someone picking up a rosary and running its beads rhythmically through their fingers while saying the same phrases repeatedly? Even if you personally have a different religious view, you likely have some understanding of why this practice is important to that person. (Note: I’m not meaning to single out Catholics who pray the rosary. You could just as easily pick any of a variety of religious and spiritual practices, and I think my argument still holds up.)

So why are these practices considered quite normal and not the so-called ‘non-functional behaviors’? Couldn’t each be for a real purpose? Is it only because we can come up with an explanation that makes sense to us for saying the rosary and not one for tearing paper into strips or dropping sand to the ground?

For example, our J-Man likes to pick up sand or food crumbs between his fingers and let them drop back to the ground or his plate. Sometimes he arranges the whatever fine particles he’s dropping into lines or patterns. He’ll do this for quite a long time. Why? We don’t know. Does he gain something from doing this? Apparently so. I think just the fact that he does these things regularly means he gets something out of them, but what that is remains a mystery. Often a mystery, however, shouldn’t be dismissed as it may point us in an important direction.

As far as how we respond, we don’t mind when he does this unless one of a few things happen. If he’s making a huge mess (dropping stuff all over the kitchen – we have a two-year-old and ants to consider!), if it’s delaying something he needs to be doing (e.g., playing with sand in sidewalk cracks at school when he should be going to his classroom), or if he’s making himself very dirty (like playing in dirt piles with his school clothes on), we’ll usually make him stop by telling him why we want him to stop and redirecting him.

As parents we do have a responsibility to define boundaries for our children’s behavior regardless of whether they are typically developing or not. This is one of the most important roles a parent plays. But we also need to try to understand these behaviors. It’s often hard to manage both parts of that equation.

I’m not suggesting we let our kids do whatever, just that we try to understand what seems mysterious to us while dealing with the more practical realities of the situation. While attempting to figure out what he’s telling us through his behaviors and why he’s doing them, we try to ask ourselves a few questions before actually stepping in to stop or redirect a behavior:

Is it *significantly* interfering with something he needs to be doing like school work or errands we need to run? (Emphasis on ‘significant’ as some things you just need to learn to roll with.)

Is it negatively impacting others? This doesn’t mean if others feel bothered because they think the behavior is odd that you should stop it. The opinions of others – particularly uninformed ones – often shouldn’t factor in. But if the negative impact is more along the lines of affecting another child’s ability to learn or harming someone else’s property, that’s obviously different.

Is it a behavior that should not be done in public? While I’m not a fan of obsessive nose-picking, I’ve kind of gotten over things like that. There does come a point where you have to start teaching your child about social rules, though, but you also have to gauge how well they’re going to understand those rules at whatever point in their development they are. However, there are some behaviors (e.g., inappropriate touching of self in public or touching anyone else inappropriately anywhere) that are important to address early and with greater care.

Is he tearing up something important (like bills or school documents) or something like a book that we don’t want him to get in the habit of thinking he can tear up?

Is he making a significant mess? Many messes at home we just live with, though we have to be careful with anything that could draw insects or the curiosity of a two-year-old. If we’re in a situation where a mess or getting messy is a more obvious problem (at someone else’s house, when he’s wearing good clothes, etc.), we’ll intervene quickly.

Is it time for him to move on to something else? For things like crumb dropping, we do set a vague time limit. There are other things we want to do and work on during the day.

Is he actually ‘stuck’ in a loop, and does he need help transitioning to something else? It’s certainly possible for our kids to perseverate on something and be unable to break away from it without help. At some point, you have to step in and reengage the child. While I don’t know how to define with any specificity what ‘too much’ is, I think there does come a point when a behavior starts becoming obsessive regardless of who you are. We just kind of go by feel here.

However, none of these actually address why he is doing a particular behavior. All but the last one – and you could even make a case that it is, too – are just about how we perceive his behaviors impacting whatever we’re doing at that moment.

Beyond these parameters though, how is a behavior like arranging crumbs on a table any different than meditating on a waterfall, prayer chants, or even the apparent neurological aid we get from repeatedly mashing the button on the end of a pen?

Ever seen Buddhist monks do sandpainting? Over a period of days they construct amazing artwork by carefully arranging one grain of sand at a time. Isn’t it possible that the J-Man arranging crumbs on a table and Buddhist monks arranging colored sand into paintings both have many layers of purpose and meaning?

Buddhist monks sandpainting

Buddhist Monks Sandpainting

[Photos taken by unsure shot on Flickr]

I mean seriously, do you want to go tell them they are perseverating on grains of sand and that their behavior in creating something they’re just going to sweep away in a few days is non-functional?

Who decides what functional is in many of these cases? We all seem to think we know functional when we see it, but yet no one seems to be able to give an explanation based on something beyond what amounts to ‘just because’. I don’t find this at all satisfying.

I suppose for the nonverbal person who can’t tell us why they do something, we neurotypical people decide what the purpose of something (or lack thereof) is, which is an unfortunate precedent we set all too often. For those who can communicate in some way, often we still decide for them.

Why is the purpose of a toy car to roll? Perhaps many of our kids see things in ways we can’t but with a perspective that is no less important. We do have to set some boundaries, but I worry that we are too quick to correct and try to fix what isn’t ‘broken’. What if instead we chose to wait, reflect on the mystery, and seek to understand?

{ 6 comments }

How We Finally Got Through a Trip to the Store

by Tim on May 13, 2011

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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I Still Have a Dream for Autism

by Tim on January 17, 2011

This is a repost of something I wrote for Martin Luther King Day last year. I hope you find it meaningful.

I humbly ask Dr. King’s forgiveness for borrowing from his eloquence and for the meager quality of my own words as I draw from his gift to us, one of the most transcendent speeches in our history. All generations after him will be asked to tell about their dreams for our world. Here are some of mine.

Our futures are inextricably bound together. We cannot walk alone. And as we walk, we must make the pledge that we shall always walk forward. We cannot turn back.

Whenever local, state, and federal governments and the schools within our communities give us and our children so little and then tell us to be satisfied that we even get that, let us say, “We are not satisfied, and we shall not be satisfied until every child has a fair chance to realize their potential and all prejudice is washed away by the tidal wave of our determination and love.”

Let us invest ourselves fully in our families, go into our communities, and do the hard work that has to be done and not wallow in the valley of despair.

Though we face the difficulties of yesterday, today, and tomorrow, I still have a dream.

I have a dream that our children will not be judged by what they can or cannot do but valued for who they are, just as they are.

I have a dream that whenever someone either cannot or is not allowed to speak up for themselves, the very stones in the ground shall cry out and we will all stand and proclaim the immeasurable worth of all.

I have a dream that all persons with disabilities will be treated as equals and afforded equal rights and access in every aspect of their lives.

I have a dream that all children will be treated with respect and provided the education and services they need to express their gifts to the fullest.

I have a dream that wherever injustice is committed against an innocent child that we will respond tenfold with unity, conviction, and action.

I have a dream that people will have access to the vocational training and assistance needed to work and live independently and follow the path they feel called to.

I have a dream that schools will not have to hold bake sales and raffles to pay the bills and that teachers won’t have to buy supplies from the money in their own pockets.

I have a dream that teachers and therapists will be valued and paid at a level nearer to all the miracles they perform everyday.

I have a dream that more money will be spent on services and support for both children and adults.

I have a dream that whenever any of us begins to fall there will always be another to help them back up again.

I have a dream that instead of judging we will take the time to understand.

I have a dream that what unites us will be stronger than what divides us.

I have a dream that we will always be thankful for those who started on this path before us so that we might have faith that we can walk the road that still lies ahead of us.

I have a dream that no one will ever again be forced to choose between getting care and services for their children or buying food.

I have a dream that everyone’s voice shall be heard, regardless of whether it comes out of their mouths, their hands, a computer, or a picture board.

I have a dream that where so many now see despair, damage, and burden that we can instead all discover and proclaim hope, beauty, and opportunity.

I have a dream today.

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The Great Pumpkin Story

October 25, 2010

Today the J-Man went back for his first day of school after the 3 1/2 week fall break, which incidentally is why we’ve posted so little lately. Two kids running amok, some travel, being buried in work, a round of a stomach bug, and the normal life chaos will do that to you. When he [...]

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Turn it on!

September 25, 2010

In the past few days, the J-man has learned to turn on (and off) lights and a fan. I’m fine with the lights flashing, but the fan is a little scary, so we leave it unplugged when he’s going to be in the room. It really seems to be an “all of a sudden” insight [...]

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