May 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?

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New Facebook Page!

by Tim on May 18, 2011

I often receive a variety of great links and resources from people and stumble across others myself. Many of these may not warrant a blog post, and for those that do I probably don’t have time to write one given how things have been and how disorganized I am! But I wanted to find a way to share those with you along with other things I think may be worth a quick post and discussion.

Facebook groups aren’t really all that useful I’ve discovered. They’re hard to keep up with and not terribly conducive to, well, much of anything. So we’re moving over to the new Both Hands and a Flashlight Facebook page.

My plan is to make it a way to share a mixture of useful resources and news along with mini-posts we can discuss a bit. Don’t worry. We won’t be bombarding your Facebook news feed with stuff. We don’t have time to keep up with everything any more than you probably do! :-)

Thanks again for all your support! Hope everyone is having a good week.

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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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Holy Cow, You’re Two!

by Mary on May 5, 2011

Two years ago on this day, I went into the hospital to be induced with what the nurses were calling a “BIG baby.” When the nurses, who see pregnant women every day, start talking about how big the baby could be, it’s a little startling. Well, the nurses were right, and Dale Jr was a giant baby!

And now, at two, he’s a big boy. He doesn’t really look like a baby anymore – now he looks like a toddler who is really on his way to being a child. The only time Dale Jr looks like a baby now is at night, when I dress him in a sleeper. I do that intentionally, just so I can pretend he’s still little. (We had planned to have pictures made last week or this week, but then the plague crashed the Flashlight household, and all Y-chromosome-owning people were hit very hard. We’re going to try sometime in the next two weeks with the same lady who did our awesome pictures from last year.)

I wrote a comparison piece about the boys when Dale Jr was 3 months old. The differences were startling even then. They are more so now. We see things we have never seen from the J-man. When Dale Jr first picked up a play phone and said “Allo! babble babble babble, OK, bye-bye” I was shocked.

So let me tell you all about this brilliant beautiful boy, who has enough words for several children. Dale Jr wakes up happy almost every day. He likes to wake up and play in his crib with someone popping in every few minutes until he’s ready to get up. He holds his blanket and sucks his thumb, and is peaceful. After I dress him for the day, we go downstairs where he immediately asks for either Rachel (Signing Time!) or Pinky Dinky Doo, although I tell him I get to watch my own show first thing – yay news for old people. He eats something for breakfast, but seems to have some attention deficit issues there – he eats 4 bites of applesauce, then asks for yogurt and has 1/2 of it, then asks for toast and only eats the buttered part… all while asking variously for juice, milk, and/or water. (He doesn’t yet know there are other things to drink in our house!)

When the J-man was little, Tim and I swore we would dance the tango if we ever had to tell a child to be quiet for just a little while. Honey, we need to take some lessons, because Dale Jr can talk and talk and talk. He says his ABCs and counts to 10, and signs a lot of words, and asks for different Signing Time videos by name (NiceDoMeetYou – “Nice to Meet You” – and HappyDayYou – “Happy Birthday to You” – are current favorites). He picks up any handy object and pretends it’s a phone, although he won’t talk into a real phone when he knows someone is on the line. He brings books to us to read, and will point out letters in the words, or will pretend to read the book to us because he has it memorized (OH wonful sounds Misser Brown do). If you sneeze or cough, he says “BessYou” – showing us that he really is listening. The other day I realized I would have to be more careful about my own words when I said something about “stupid people” and while we were in Target he kept saying “stupid people” as we would pass someone. Oops.

The joy that Dale Jr has brought into our lives simply can’t be described. He is the happy-go-lucky child that I don’t think Tim or I ever were. He still takes a nap every day, for which I am so thankful I don’t know what to say. He goes to bed at night with usually nary a peep, and only wakes up during the night if he is sick. People stop me in public to tell me how adorable he is, and all I can say is “Thank you – we think so.”

Every night, before I take Dale Jr up for his bath and bedtime, we do a bedtime routine, where Tim brushes the little guy’s teeth and holds him for a few minutes. We execute the “Family Sandwich” hug we learned from Pinky Dinky Doo. He says “I love Daddy and Mama.” And then he says “Night night Daddy.” And we climb up the stairs for bath and bed… so we can do it all again tomorrow.

Happy second birthday baby. We love you.

Dalejr2

Dalejr3

Dalejr1

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