Sensory Issues

Melatonin – The Kinda, Sorta, Wonder-ish Supplement for Sleep

by Tim on November 13, 2011

A while back, we were at a crisis point with our J-Man’s sleep. It would take him 2-3 hours to go to sleep at night, which usually resulted in him going to sleep between 10-11PM. He was completely unable to calm himself down at night. We’d look on the video monitor, and he was essentially doing the equivalent of breakdancing in his bed, bouncing off the sides of the bed and up and down on the mattress. He was hollering, squealing, and screeching a lot, typically the sounds of being overstimulated and too overloaded to relax at all. Eventually he’d pass out from exhaustion and sleep. This was affecting everything from school to life at home.

He never has been a great sleeper, to put it mildly. He didn’t sleep through the night until he was 18 months old, and even then we endured long stretches where he’d get up at least once or twice a night or get up really early. There were countless nights where he wouldn’t go to sleep unless we were in the room holding him. We went through long periods of it taking herculean efforts just to get him dressed and ready for bed, let alone get him to sleep.

It started getting better, and we got to where with some confidence that we could expect him to make it through most of a decent night. Then we hit that patch a while back where he was just completely unable to put himself to sleep until he passed out from exhaustion. He was doing poorly at school and at home, he was unable to regulate himself much at all during the day because he was too tired to cope, and of course we were all on the edge of insanity. It was a really grim time around here.

We knew we had to do something and soon. If you aren’t getting sleep, everything else will go to hell. Sooner or later, you will break. We didn’t know what we should do, but we were ready to consider just about anything at that point.

One of the things you won’t see me do much is talk about or advocate supplements. I personally take a typical assortment of things (e.g., multivitamin, fish oil, probiotics), but I take the supplements market with a lot of skepticism. The rigors of testing and science in general are regularly missing when it comes to these largely unregulated products. We give our J-Man much the same kind of things: multivitamin, probiotics, calcium (since he eats almost nothing dairy or anything else with calcium in it), and a green superfood powder that is about the best we can do right now for vegetables since he refuses to eat them. It’s not the same as real food, but it’s the best way we can improvise at the moment.

All sorts of people gave us advice about pills, supplements, and medications, many of which I found rather dubious. So that’s the perspective we brought with us when looking at our J-Man’s sleep difficulties. Bottom line is that we knew we had to do something or we were all going to go crazy. Sleep is the foundation for everything in daily life, and no one was doing well without it.

I’m not really spoiling the plot to jump ahead and say that we settled on using melatonin, which has worked well for us. Before we entertained trying something like melatonin or something in prescription form like a sedating-type mood stabilizer, we tried everything else we could think of. We aren’t opposed to medications by any means, but since our J-Man is minimally-verbal, it’s really hard to know what effects medications (or much of anything we do) specifically have.

I don’t like experimenting without some means of understanding the effects of what we do. I’m a pretty analytical type. I like knowing how things work and why. I bring this sort of process to bear when we attack problems like sleep.

Here are non-supplement/non-medication things we tried over the years that worked to varying degrees. I do think it’s worth experimenting with these and similar techniques before giving your kids any supplements or medications.

  • Structure your nighttime routine. Do the same thing every night when getting ready for bed as predictability itself is often calming.
  • Institute a standard time for bed. This is true for most kids and adults whether they’re on the spectrum or not.
  • If your child likes water, try a nighttime bath. A nice, warm bath can be very relaxing.
  • Look in your child’s bedroom for sensory violations, and don’t forget the fabrics they wear to bed. If anything seems bothersome to your child, eliminate it and see what happens.
  • Try a white noise machine if any sudden noises wake your child or keep them from going to sleep. Many find white noise machines calming regardless.
  • Look at diet, particularly in the afternoon and evening. Are they eating things that could keep them awake (e.g., spicy food, high in fat), eating a lot before bed, or drinking things that inhibit sleep (sugar or caffeine)? Are they allergic or sensitive to foods or drinks that would then upset their sleep? Are they experiencing silent reflux?

Be prepared for these changes to be a battle at first, but stick with it. One or more of them may pay off. Also don’t forget that if your child gets out of bed if they can’t sleep, make their room safe. Sleep deprivation can be very agitating.

If all this fails or if it stops working, consider these medication type interventions. We started with melatonin, which is an over-the-counter sleep supplement rather than what I’d consider medication. It has proven sufficient for us right now. It may not remain so, and we know that. When or if the time comes for us to adjust what we do, we will attack the problem then.

The first few days didn’t go too well, but that did pass. This isn’t unusual. At first, he’d wake up in the middle of the night, and it was really unpredictable about what would happen after that. He might go back to sleep after a while, or he might have just stayed up for good. We had this sense “Oh, crap” feeling about it when all this happened. We worried that we were trading off him taking forever going to sleep for him going to sleep quickly but waking up at 3AM – essentially the same amount of total sleep shifted backwards three hours. Thankfully after a week or so, things stabilized. He was going to bed pretty quickly and getting up within reason of a normal hour. (6:30-7:00 AM plus or minus)

Some parents we know have reported undesirable side effects that don’t go away, though. One reported that their child had night terrors upon taking it that went away when they stopped. Others have said the problem of time shifting their kids’ sleep (going to bed earlier and getting up earlier) rather than getting more sleep didn’t go away. Some parents found their child got more and more resistant to the effects of melatonin as time went on. Our J-Man seems to have had a more unusual side effect. His bowel movements changed for quite a long time, though now they are getting closer to normal. I can’t say for sure if it’s from the melatonin or why it happened, but it seems likely they’re somehow related. This hasn’t proved a big deal for us, though.

This past week, he has been getting up very early again – about 5AM. We can attribute a lot of this to the time change, which is always the bane of our existence. We have started to wonder whether the current dose of melatonin isn’t working as well, but we’re taking a wait and see approach about that.

Most everyone starts with the 3mg dose. Melatonin is available at most big box and drug stores and is very inexpensive. I know some have bumped up to 5-6mg and/or have ended up supplementing it with a prescription medication. The 3mg remains pretty effective for us. I’ve heard mixed reactions to time release melatonin, some saying it works out that the dose is never strong enough to get or keep them asleep.

Melatonin is definitely one of those “your mileage may vary” products. It is generally considered very low-risk, so as experiments go this should be one you can do with less anxiety. However, for children under age 5, I’d suggest being more cautious and going over this carefully with your pediatrician, which really you should do regardless. I don’t know what the minimum age is – or if anyone knows – but as a rule, the younger the child the more careful you should be.

[Edit: 11/14/11 - The day after I posted this, I saw this article "Genetic studies probe sleep hormone’s role in autism" about a study finding much lower concentrations of melatonin and the enzyme that produces it in their autism group vs. their control group. Very interesting!]

If you try melatonin and it doesn’t work, you may want to consider prescription medication. I know many families who have gone this route to varying degrees of success. Many meds that normally aren’t used for sleep disorders do work for autistic children for reasons no one quite understands. While off-label use of prescription meds is rather common among autistic children, it’s still pretty confusing to parents and medical professionals, too. There indeed are meds primarily for mood disorders that are traditionally used for calming and sleep in neurotypical people that also work for autistic children. You should be very careful with these in my opinion and not use them without caution and close supervision of a qualified medical professional, particularly a child psychiatrist who specializes in autism.

I personally from experience would not recommend using psychiatric type meds under the direction of a pediatrician or general practitioner. I think it’s critical to find a specialist in both autism and pharmacological interventions. These are not meds to screw around with, and it’s rare that pediatricians have the specialized knowledge required to manage medications with autistic children, particularly when many specialists don’t yet understand how or why many medications work with our kids either.

Standard disclaimer that you should always use supplements and medications under the direction of a qualified medical professional. Melatonin is one of the safest and natural options available for helping your child sleep. I wouldn’t say it’s been a ‘wonder drug’ like some make it out to be, but it definitely has given our son a number of improvements to his sleep that have made life easier on everyone. We certainly give it a thumbs up.

[Thanks again to Danette at S-O-S Research for including this post in this month’s Best of the Best series on ”Medications and Their Use with Special Needs Kids” edition. Starting November 15, you can see the entire collection of posts via that link.]

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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.

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Proprioception and Calming Techniques

by Tim on September 14, 2011

I don’t know what percentage of our day is concerned with managing our J-Man’s sensory challenges, but I’m sure it’s a lot. Just about every autistic child I know struggles with one or more of their major senses even under ‘normal’ conditions. Of course, this can make already stressful situations when they occur even more unbearable.

If you’ve been on the autism road for a while as a parent, you know that managing and helping calm these sensory challenges can mean all the difference between successfully accomplishing something and your child coming undone. I don’t think I’m overstating things when I say that these sensory issues are the knife edge so much of their lives is balanced upon, and it doesn’t take much to knock them over that edge.

One of the things that parents new to autism in their families need to make sure they understand is that these sensory issues are very real and may be very painful to your child. It can be difficult to understand why something bothers your child so much as it sometimes doesn’t seem logical to us. Why would a fabric, for example, that most of us wear every day cause a child to be in agonizing pain? Sensory challenges are particularly hard to appreciate and figure out for people who don’t really have them. In time, you will figure out more and more about what bothers your child even if you don’t get the why behind it.

However, there will be many people in your family and circle of friends who will continue to think your child is overreacting and that you are coddling them by catering to their sensory needs. In what I think is a mantra you should hang on your wall, “It doesn’t matter a microscopic damn what they think.”

So when things come undone for your child – whether it’s in a store, a family gathering, a supposedly low-key night at home, or anywhere else – there is frequently a strong sensory component to it. When you call upon your arsenal of calming techniques – which you should always be adding to and refining – these sensory issues will often be the first thing you address.

Like with pain management for any of us, it’s important to stay ahead of the pain by proactively managing it. Once it gets away from you, it can spiral down in a hurry. So your best calming technique is to watch for the early warning signs and head things off before your child loses their ability to cope with a situation. It’s much, much harder to help bring them back than it is to try to manage it from the beginning.

However, that’s easier said that done. Even with our best efforts, things are going to fall apart. Expecting our kids to manage the sensory bombardment they face every day is like expecting them to climb Mt. Everest. So then what?

Every child is different, so there’s no right formula for how to do this. It comes with experience and a healthy dose of analysis. Make notes of situations in which your child really struggles. Think about things in the environment where the problems occurred and look for commonalities. Some may be obvious (e.g., public places that are crowded and noisy) others may be much less so (e.g., stores that contain a lot of the color red).

Start by thinking about what you can do to help calm – even a little – the things that cause your child distress before things spiral into a big problem for them. For example, can you go shopping at a less crowded time of the day, such as mid-morning? If so, can you use that time to practice shopping trips? You could structure the trip to the store, say you’re going to get three things and visually present that to your child, get them, check out, and leave – little trial trips to the store to help your child hopefully grow in comfort.

I’ll tackle a sense that has always been an issue for us, and one that can present challenges for both child and parent in numerous contexts – proprioception. Then I’ll say something about how various techniques have helped us help our J-Man in stressful situations.

But you might need a definition for proprioception first, especially since it’s a sense many of us take for granted. Proprioception is essentially your body awareness sense. It helps you know where you are in space. To give some simple examples, if you’re standing up, it helps you know you’re standing, where your body is, and that your feet are on the ground. If you’re sitting, it helps you know your body is in the seated position and in contact with your chair. Sounds trivial, but if you’ve ever had this sense of falling when you’re in bed at night, you might have some idea of what it feels like when your sense of being horizontal and in contact with your bed goes away. It startles and scares you. Now imagine life being like that for long periods of time, all the time, and not just for a split second right before you go to sleep.

One of the best ways to deal with an underdeveloped proprioceptive sense is to help your child feel more aware of their bodies. This can be wonderfully calming both in everyday situations as well as stressful ones. Our J-Man responds to deep body pressure and ‘heavy work’, lifting or moving heavy objects around. A lot of autistic children I know benefit from techniques in both of these areas. If you think about it, this makes perfect sense. If you’re standing up in a room and then someone hands you 50 pounds of sand to hold, you’re going to be a lot more aware of your body and how much more you’re pushing against the floor. Obviously some children will hate it, and it’ll be the exact opposite of what they need. As with everything, you have to tailor a plan specific to the needs of your child.

Deep pressure involves a wide variety of activities that apply some sort of additional force to the child’s body. Our J-Man responds to firm pressure applied to a large portion of his body. Some examples of things we do or have done in the past:

* Full body hugs and squeezes
* Carrying him upright in your arms like you would hold a baby to your shoulder
* ‘Squishes’ where he essentially lays down on the floor, couch, or chair and we lean our body weight on him
* ‘Burrowing’ which he usually initiates by crawling in behind you while you’re sitting on a couch or chair
* Piling blankets and pillows on him, sometimes while leaning on him and the pile
* Joint compressions (with or without brushing) – See here for a basic explanation.
* His car seat – he likes the coziness of his car seat, which is still a five-point harness in a seat that wraps around him more than a lot of kids’ seats
* Pea Pod – something that looks like a kid-sized inflatable boat that he can sit or burrow in
* Wrapping him in something like a blanket

Obviously this list isn’t comprehensive. You could also try a compression vest or compression clothing. For those of you who’ve watched the Temple Grandin movie, the squeeze machine is based on this whole concept of deep pressure.

And here are some examples of heavy work. These are more pre-emptive calming techniques that we could use to try to head off potential meltdowns, but they can work well when things start getting stressful.

* Letting him pull on something heavy that will be hard (or even impossible) to move – pulling a wagon filled with books, for example
* Letting him carry heavy objects like encyclopedias and phone books
* Letting him rearrange furniture
* Wearing heavy, cloppy shoes – he wears these heavy, all-terrain, Stride Rite shoes, which add weight and give him a lot of feedback through his feet. I know plenty of kids who wear heavy shoes and work boots.
* Weighted vest – Simply a vest with weights built into it to apply some uniform, downward weight to your child that they wear around for a while. We don’t use one now, but we did for a while. Note: You should only use this under the supervision of an occupational therapist.

These are just some ideas that have been great sensory calming aids for us. As always, your mileage may vary. Your friendly, neighborhood occupational therapist should have a wealth of information about sensory challenges and sensory defensiveness, proprioception and all the other senses, and the huge variety of things you can try to help your child in difficult situations.

Luckily for us, our J-Man is resilient. Once removed from a stressful situation (extreme example – the dentist), he recovers quickly, but he has to get out of there first. If he can get to a ‘safe space’ when things are bad for him, he can regroup admirably. Last dentist trip, once we got back into the car and got him in his car seat, he started to relax. Eventually he just shut down (went to sleep, but mostly just shut off) for about 15 minutes before we pulled in our driveway. It’s amazing how much he’s learned about helping himself through tough situations. Our kids can teach us a lot about what they need!

There’s a lot of trial and error involved in finding the right formulas to help your child in various situations, and what might work in one context may not in another. I doubt this is a news flash to many of you, though. There’s never a straight path from Point A to Point B! But start by identifying the senses that your child has the most difficulty managing, look for how those senses are negatively triggered in various situations, and then try everything you can think of to address them. In time, you’ll develop your ‘go to’ list of things to try in familiar and new situations.

If you stay totally centered on your child and learning what’s hard on them and what helps them feel better, you will figure a lot of things out. Remember, it’s not about whether you really understand (though it does help) why something upsets them or helps them, it’s that it does. Bounce ideas off therapists, teachers, and other parents. They can help you see some things you might have missed. In the end, you want to be able to head things off before they get bad, and if you can’t, then have ways to bring things back when they start spiraling down. It’s a challenge, but we’re used to that!

[Thanks to Danette Schott for including this on her September "Best of the Best" posts about calming techniques with special needs kids. Lots of great wisdom from some fantastic bloggers there, so go check it out!]

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Strategies to Help a Child Drink From a Cup – Crowdsourcing Time!

by Tim on June 26, 2011

[I'm promoting this question from 'onlyash' from her comment in another post. Hope she doesn't mind.]

Here’s a great question from ‘onlyash’ that I wanted to try to crowdsource.

“I am a mom to a former micro preemie and I have contacted you before and your suggestions have always helped me, she is 4 now and still drinks water from a bottle. Do you have any suggestions or tricks you have used with the J-Man that you can share here.”

I’m not sure I have much in the way of great insights to share, but I’ll take a stab at a few from our experience. Those of you with particular experience with this, please share your wisdom in the comments.

We had a roller-coaster of results with bottles back in the day. Our J-Man was an ‘extended nurser’ in that he still breastfed a little until he was around preschool age. When Mary worked outside our home, I fed – or tried to feed – him pumped milk from a bottle for a long time. Sometimes this would work great; many times he’d go on bottle strike. This became an urgent problem because he really wouldn’t eat much of anything else. His diet was limited to a small number of pureed things, and even then what he’d eat or whether he’d eat them at all varied depending on mood. We were regularly frightened that he wasn’t getting enough vitamins, calories, or much nutrition in general.

We started feeding therapy with him when he was nine months old. His oral sensitivities and aversions are the stuff of legend. Getting him to let us put anything at all in his mouth took months of therapy. Even now, what he will eat is very limited.

Most of that journey is another story entirely, but with respect to drinking liquids back in those days that weren’t pumped breastmilk from anything other than a bottle, we tried all sorts of things. One thing worth noting here is that he never did sippy cups. This wasn’t because of anything we did. He just hated them and wouldn’t have anything to do with them. We’re all pretty sure it was from the ‘I don’t want anything weird in my mouth like a spout unless it’s attached to Mama’ kind of thing.

Now he drinks from these plastic, kid-sized, open travel cups. (We don’t use the spouted lids at all.) They’ve gotten him to take some drinks from different cups at school, but he’s pretty attached to our cups. Also worth noting that he almost solely drinks lightly-sweetened, decaffeinated, iced tea. Very recently he’s agreed to take a few sips of milk.

Here are some things we’ve tried.

* We eventually got him to experiment with a cup by getting acrylic shot glasses from a party store. I think they were like a dollar apiece. They’re indestructible and only hold about an ounce of liquid. If he spilled whatever was in it, no big deal. Plus it was smaller and fit better in his hands and mouth. He was probably about 18 months give or take at that point, but this is something worth trying for just about any age.

* We played with cups (started with those shot glasses and worked our way up) in the bathtub, tried to pour some water around and on his face some, and occasionally got some on his lips. We let him experiment with the cups, too, filling them with water and pouring them out, etc. Obviously we did this before soap or shampoo got in the water. We tried to make a game of it or at least make it as fun as possible. It took a lot of time, but eventually this started helping his comfort level and willingness to experiment with cups.

* He was very reluctant to let us put the cup near his mouth (as he is with about anything), so this took a lot of patience. Like many things, he wants to be in control of what is near him.

* We eventually tried heavier glasses like small jars that could withstand being dropped. With the J-Man’s sensory issues, he responds better to heavier objects. The weight often calms him. For the longest time, this was all he’d drink out of, but hey, he was drinking out of an open cup! Eventually he worked up to the travel cups.

FYI – The above are mostly from before he turned 3.

* When we want to attempt something new, we try to structure it with some sort of visuals and/or social story. With new foods or drinks, we’ll either use a written schedule-type story to indicate what he’s expected to do or use a visual that shows the same. For instance, for the written story:

1. J-Man is going to drink some milk from a new cup.
2. Take a sip.
3. Take a sip.
4. Take a sip.
5. Take a sip.
6. Take a sip.
7. J-Man is finished!

Seems redundant perhaps, but the point is that every time he takes a sip, we cross off that step. You can obviously do this with pictures, too. For instance, every sip they take from the cup you want them to drink from, you could remove one of the pictures. When all the ‘take a sip’ pictures are gone, they’re done.

I think both the structure and knowing when they’re going to be done with this task they clearly would prefer not to do helps get them started and actually doing it. Even that may take time, but persistence and much patience can pay off. The hope is that they will realize it’s not so bad and perhaps even like it.

So how did you get your child to transition to cups, try new drinks, or taste new foods? Please leave a comment and share your wisdom!

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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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Routines, Predictability, and Just Getting to School in the First Place

February 14, 2011

[Thanks to Danette Schott at Help! S-O-S for Parents for including this as part of her February "Best of the Best" feature on school issues as they relate to invisible special needs! Go read all the great posts she's collected this month from some top notch bloggers, and while you're there check out the previous [...]

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Boy vs. Dentist – The Next Chapter

February 1, 2011

Sorry to not post in a long time. We have so many things going on that it’s impossible to know where to start. It’s been very stressful these past three weeks, a few major life changes, the normal chaos, and I’m still training for a marathon in the midst of all that. We’ll go into [...]

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