Behavior

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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A Case for Kids Repeatedly Watching the Same TV Show

by Tim on June 19, 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

{ 8 comments }

Social Stories and the Revelation

by Tim on June 7, 2011

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

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

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

Social stories serve many purposes. They can:

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

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

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

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

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

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

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

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

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

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

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

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

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

iPod Social Story

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

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

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

We’ll keep you posted.

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

{ 6 comments }

Do Non-Functional Behaviors Have a Function?

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 [...]

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How We Finally Got Through a Trip to the Store

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 [...]

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