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by Tim on January 30, 2012

I will risk pissing some people off here because I think this has to be said.

The National Autism Association posted a PSA about autism a while back. Watch it and then continue below for more discussion.

Let me start by saying that, while I am tired of a great many things, after seeing that PSA I realized that I am particularly tired of two things in the world of autism right now: doom-filled ads and statistics, the former I’ve seen referred to recently as “autism doom porn.” I realize that both of these are intended as instruments for awareness raising with a public that knows little about autism. I still think they only serve to bring us all down.

1 in 110 is eye-opening. The progression from 1 in many thousand drags you into the downward spiral toward doom. 1 in 70 feels like a cataclysm.

Statistics suck. They can make the same thing seem wonderful or awful.

109 in 110 seems like a typo. 69 out of 70 sounds like great odds. Neither would do much more than leave you a little confused and scratching your head about what the big deal was. But that in itself isn’t my point.

Statistics seek to classify, group, and analyze things as objects. Those savvy to autism know what the first set of statistics above refers to. I could, however, just as easily have been referring to oranges or pretzels. Regardless, these numbers aggregate, classify, and simplify. We believe autism is much easier to understand when you sort it out like this. Of course, in the process you flatten all the diversity out of it and erase the personalities of every one of our children.

Some think this makes good TV and fundraising ad copy. At best I find that very, very debatable.

So on to my version of autism statistics. There are only two statistics that matter to me right now. I’m going to be obnoxious enough to say they should be the only two that matter right now period.

1 in 1.

1 in infinity.

If you’ve met one autistic person, you’ve met one autistic person. You haven’t met some 1 in 70 or 1 in 110. You’ve met 1 in 1.

They have a name. They have a personality. They aren’t a number. They have potential. They have feelings. They are wonderfully made. They are.

They are unique in all the universe. There has never been anyone else like them, and there never will be. They are the most precious gift of all. They are irreplaceable. They are 1 in infinity.

The other statistics may help raise money and supposedly make for compelling awareness campaigns, but they set a dangerous tone. We get caught up in this specter of doom, and that rarely does us any good. In fact, I think it’s destructive. We don’t need this in our lives. We know life can get really hard. We don’t anyone to tell us that. We need a different perspective. We need a spirit of hope and a way toward transformation.

I think these doom-filled ads work against the very changes we ultimately seek. The public have become numb to a generalized, widespread sense of impending doom. We get it from everywhere. People don’t get excited about causes where they are fighting some vague, nameless, statistical doom either.

Why do Heifer International, Save the Children, and Kiva – to name but a few – raise so much money and bring about such transformation in the world? Because you are buying a goat for a village, supporting a specific child, or helping fund a specific entrepreneur. You aren’t donating money to combat hunger or some vague, evil force in the world. You are doing something specific for one person or one village. You become involved in individual stories of transformation and hope. You become invested in their future.

When we raise awareness, we often want people to be as passionately involved in autism as we are. That’s rarely going to happen. We certainly can’t scare people there. We want everyone to join and fix the grave injustices we and our kids face. We’re asking for too deep and too vague an investment. We are the ones with all our skin in the game. The general population will never have as much at stake here as we do.

What do I think the answer is? Tell your story. Proclaim both your challenges and your pride and everything else. Speak of every joy and lament. Describe what it feels like when your child is finally able to do something that seemed impossible before. Become like the wandering storytellers of old. Share the whole, rich landscape of your lives together.

Tell your story to educate and inspire. Ask the person you tell it to for one thing, one thought, one action, one small something. Don’t ask for the world; just ask for one small step. At worst, we get one helpful act of kindness, one seed of good planted. At best, maybe we gain a committed ally and advocate. While none of us on our own can accomplish a task like “save the planet” or “fully fund disability services in every state”, perhaps all the people around us can achieve something like “the next time you see a child throwing what you think is a spoiled temper tantrum in the store, consider the child may have needs you aren’t aware of, and share a kind word or a helping hand with that parent.”

And that is how change begins, takes root, and grows. No one’s statistics will ever do that.

We need to see the 1 in 1. We need to see the 1 in infinity. We need to start there. Make a difference to one child. Celebrate the achievements of one child. Rejoice that we have been given the impossibly rare gift of each one of them. That’s how the world changes, not with this statistical doom porn.

Because each of our children is the only one like them. They only get one shot at life. We only get the gift of them in this world once. Let’s go act like that’s true.

{ 3 comments }

Our Last Trip to the Dentist – or That Thing I Haven’t Wanted to Talk About

by Tim on October 10, 2011

There’s no nice way to say this. Our last trip to the dentist a couple months ago was traumatizing. I haven’t really wanted to talk much about it. It was that bad.

Let me preface the rest of this by saying that it had nothing to do with the dentist or the staff. Unlike our previous dentists’ office who we thought treated us poorly, we love our current dentists. There simply are some ordeals we and our autistic children have to go through that can’t be made good by anyone. Dental hygiene is hard enough for many of our children. But trips to any doctor’s office scare our J-Man into such a horrible place emotionally that I can’t describe it in words, though I imagine many of you know the kind of terror I speak of here.

If you want, you can go back and see our chronicles of dentistry in these past posts:

I dreaded this most recent visit for even more reasons than usual. Mary was recovering from her surgery and still on restrictions against lifting any weight, so doing anything with the J-Man at the dentist was completely out for her. It would be up to me, the dentist, and the staff.

In addition, they needed to pull one of his baby teeth. It was pretty loose already, but his permanent teeth were already completely in behind it, and all those teeth in one place doing different things had been bothering him for a couple of weeks. It needed to go ahead and come out. He’s already super-super-sensitive to anything even the slightest bit unusual with his mouth, and he had been even more reluctant to let us anywhere near his mouth during all this. Clearly all this added up to a formula for impending doom at the dentist.

Thrown into the mix was the obvious fact that he was several months older, bigger, and stronger than the previous visit where we were barely able to hold him in the chair. I’ve been working out consistently for well over a year now not only for my own health but for times like this when strength is essential. But there are limits to how effective this will be. There comes a point where the amount of strength we would have to exert to hold him would be impossible to apply without injuring him. I think we’re there now.

In past visits, we’ve treaded the line between surviving the dentist visit and a cataclysm. As you might expect, this was all a recipe for disaster.

One problem became obvious as soon as we tried to start. Not surprisingly, we were in the ‘special room’ where everything is toned down and kids can holler as much as necessary without upsetting the other children in the office. Whether or not the J-Man will ever care I don’t know, but it also affords him some privacy. The problem is that there is only so much space in one of those rooms. The most people we could fit on and around the J-Man was four. But it wasn’t enough, and we all knew it immediately. Holding him in the chair was one thing, but keeping him steady enough to not get jabbed by an instrument was something else entirely. Actually, it was impossible in those circumstances. His safety, and perhaps that of the dentist and hygienist as well, was at high risk.

So I gave them permission to do something I dreaded ever being faced with – putting him in the papoose board. (Link to a papoose board product page – click the Images tab for more pictures.) I felt like a horrible parent, and still do two months later. The look in his eyes all during the appointment was of complete terror. He made prolonged eye contact with me, which he never does, clearly imploring me with his eyes to make it stop. I sang to him. I put my head close to his. I did everything I could think of, though I knew it wouldn’t help. I can still hear him screaming over and over again. It makes my blood run cold to think about it.

I’m not sure I’ve ever felt as awful as a parent as I did then. I knew rationally that we had to get his dental work done, but that fact couldn’t possibly alleviate how horrible I felt subjecting him to all that. If someone had told me in that moment that if I’d allow someone to stab a knife through my hand then my son would feel OK again, I would have taken the knife and done it to myself.

Eventually, it was over and done. He was pouring sweat and smelled of raw fear. I got him in the car, and he fell asleep in his car seat. (or passed out, you pick) He sat in the recliner at home with me for a while, very quiet and withdrawn. Later in the day, he got back to normal. He is very, very resilient. I, however, was submerged in a guilt-ridden mood all day and night and into the next day. Writing this puts me back there again.

It was a horrible experience, but I’ve been trying to do the only thing I can with it at this point – learn from it. Having a couple of months to reflect on it, I think we have a better idea of what we need to do next time. Here are my ideas.

  • We need to talk to the dentist in advance of our next appointment and work out a strategy for a more successful visit. They have always been receptive to this, but it will clearly be more important next time.
  • We need to look into sedation and whether it’s a viable option for him.
  • We need to see whether there are other methods of restraint that don’t involve that papoose board but that don’t present a real danger of someone getting hurt by an instrument.
  • We should at least try social stories with him and well in advance talk about dentists via story books. It’s hard to imagine that anything will convince him that going to any doctor isn’t torture, but we have to try.
  • We need to talk to his teachers and OT to see if we can develop a broader strategy for easing his fears in medical situations. For example, they talk about medical things like doctors’ instruments in class using a toy doctor kit and a doll in pretend play.

Would love to hear your suggestions. I know this is something most all of us struggle with.

{ 6 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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Let Me Out of Here!

by Mary on January 5, 2011

Yesterday we took the J-man over to do the last part of a research study we’ve been participating in. This was the big part – the in-person evaluation.

Sometimes the J-man does OK with formal evaluations, but usually they can be kind of a mess. I think part of the reason is the transitions – someone gives him a task, then if he doesn’t do it in the time period they want, or how they want, or whatever… they take it away! It’s not like at our house, where new toys can sit for weeks before he will even notice them.

They started off rather poorly by making us wait in the lobby about 10 minutes, although we used that time to re-read the little “here’s what’s going to happen” booklet they had sent. The J-man LOVED that book, and especially liked signing “nice” and “nurse” – he would crack up laughing at those words. (BTW, we never actually saw that nice nurse. Maybe it would have helped.) We all went into a little room, and a lady (we’ll call her Connie Chung* because I don’t remember her name) tried to get the J-man to interact with her, while the rest of the adults talked at another table. That didn’t really happen… until everyone else left, and it was just me, the J-man, and Connie. Unfortunately for Connie, she started off with a sorting game of blocks and spoons.

You could just see the J-man light up – THERE ARE BLOCKS HERE!

He spent the entire rest of that session trying to get the blocks. The spoon and block sorting went as follows: he built block towers, and Connie tried to get him to sort. She handed him a spoon, and he put it in the correct box, but when she tried handing him another, he grabbed the handful from her, put them all in the correct box… and went back to building with the blocks. When Connie tried moving to a different task, she ended up putting the blocks away into her little toolkit. The J-man calmly walked around the table, opened her toolkit, and took out the blocks! We had to draw a little schedule, with blocks as the “next activity” to get him to do ANY other tasks. Connie tried getting him to match objects with a picture in a book, but when I told her he did better with words, she tried getting him to match letters… but the letters weren’t objects, it was just “here’s an L… now which one of these looks like that?” It didn’t work, and she wouldn’t move on to WORDS because he wouldn’t do the letters.

Eventually… Connie gave up. Really. Just decided to give up. That right there really described the tone of the whole evaluation to me.

We were sent back to the lobby (there was a playroom, but it was such a disaster area – and I don’t say that lightly considering our house – that the J-man wouldn’t even go in the door!) to wait again, while they set up the room for the other evaluation. This was one specifically for autistic kids. The J-man played with some of their toys, then decided to stack them. Another lady was doing this part of the evaluation. We’ll call her Diane Sawyer (again, no idea what her name really was). Diane did a little better by not having blocks out, but the FUNNIEST part was when she asked me if the J-man would “watch someone do something, then do it himself.” I said, “you mean, imitate?” “Yes,” said Diane. “No, he doesn’t imitate.” She seemed concerned by that. I thought it was a VERY COMMON PART OF AUTISM, but maybe not?

It didn’t take long for the J-man to get frustrated with her, and he asked me for a snack (and maybe a break from Diane!). I briefly mentioned the Sacred Six, and got out his food card. It took a good bit of explaining before the light clicked on, and Diane realized that REALLY, this is only the food he eats. The Sacred Six. They wanted to get him to ask for help, so put 2 of his snacks into containers. He ate some Veggie Straws, then Diane closed the container. He tried to open it, then took it to her to open, but because he didn’t verbalize “help” she refused to open it. So now, you’ve got a hungry stressed out kid, and you’re withholding food. Hello tantrum!

I eventually got him calmed enough to drink, and then he ate more Veggie Straws. Diane asked if I thought he would show them anything… and I said, “Well, he loves to build with blocks.” We had brought his own personal alphabet blocks with us, and he played with them. I pointed out the matching he does with them (not only does he stack blocks with the same letter together, he stacks them in the same orientation, so all the sides match up), and the engineering it takes to build a stack of blocks that high… but again, I felt that Diane, like Connie, had just given up. The J-man sure had.

Tim was still doing the parent questionnaire when we finished at 4PM – we had been there for three hours at that point. Our portion included taking pictures of the J-man’s hands, feet, ears, and face, sometimes with a ruler held up to compare to. Eventually that set him off again, and we ended up with just the J-man and me, sitting in the eval room on the floor. He asked for “pillows” and we cuddled together on the industrial-carpeted floor. I knew he was really stressed, but not quite how much… until he went to sleep. The ONLY time the J-man sleeps during the day is when he is SO overwhelmed that he has to get away, and he has realized that people will leave him alone when he is sleeping.

There was still more stuff to be done, and it was unpleasant at best… but we finished, and left. Thank god.

Tim and I hope that our experiences with studies, and the data collected, may actually mean something someday. We’ll probably enroll the J-man in more studies (ones that involve only observation/evaluation, not so much with the “take this miracle drug” ones). But, not anytime soon. Because at the end of the day I felt emotionally exhausted, and like a bad parent because a) my son was obviously so upset, and b) the study people seemed to think I was lying when I said he COULD do some of their tasks but just wouldn’t in that environment. So that was my part. I also didn’t want to put the J-man through anything like that again. He was overwhelmed by the lack of structure, and kept saying “I want” but then didn’t know how to express that what he wanted was OUT OF THERE.

Maybe that’s something we need to include in his IEP next time.

*One of our “code words” phrases is, when we can’t remember a woman’s name and can’t get past it, “Just call her Connie Chung and move on.” We’re showing our age here a little bit. Do people still know who Connie Chung is?

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If ignorance is wisdom, we’re all gods here

June 3, 2010

“The doorstep to the temple of wisdom is a knowledge of our own ignorance.” – Benjamin Franklin We have been people of extremes around here lately. I’ve been burning the candle on three ends with work projects and am at that stupid kind of tired right now. Mary has been going full on at work [...]

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Grace on Aisle 5

March 26, 2010

Well into a long shopping session at Target the other day, the J-Man was doing his ‘ya-ya chant’. Try halfway laughing, then smile real big, flap your arms, and yell “ya-ya-ya!” loudly over and over again, and that’s a fair approximation of it. His volume is often a function of how overstimulated he’s getting, not [...]

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