Sensory Processing Disorder

Will Bring Us Goodness and Light

by Tim on December 11, 2012

This past weekend, we went with friends and families from school to see a Christmas lights tour at a local farm. The owners had converted the dirt roads around their farm into a holiday hayride trail decorated with Christmas displays, and they take visitors on a 30-minute, slow, peaceful ride through the woods on a flatbed trailer.

The owners thoughtfully let us come about a half-hour early to avoid the lines. An unusually pleasant December breeze blew in and around us as we waited for the ride to start. They also turned down the loud holiday music for our trailer full of sensory-anxious riders. The J-Man was distressed before we started to move. He didn’t want to sit down. Then we pulled away from the barn, and the motion and vibration instantly calmed him.

It’s dark out there in the country, which made the light displays that much more vibrant. Dale Jr. was beside himself with glee as each set of lights burst into every Christmas shape, figure, and character you could imagine. The J-Man sat there, body still and close to my arm, eyes looking around, taking it all in. The two of them sat between Mary and me, the four of us soaking in this holiday moment together.

Dale Jr. narrated each amazing thing he saw, which was everything. Each new moment was a revelation to him. I felt the J-Man’s body relax into the right side of mine. His passive, inscrutable face began to brighten. That twinkle we know and love as much as life itself appeared in his eyes. His mouth went from grin to smile, that perfect smile that makes him look like Mary’s little twin.

We rode on through the night surrounded by thousands of lights, our children’s faces filled each with their own unique wonder. Mary and I met each other’s eyes and knew without ever saying a word. That moment was pure magic, a moment you wait and hope for. The four of us together awash in the joy and peace that truly represent what the holidays are all about.

We are surrounded by friends – children and families from the autism program at our school. Everybody has their own needs and challenges, but there we were together, out in the wilderness, literally encircled by light. And I think, there is no more perfect symbol for our lives than this.

I thought about how challenging public outings have been for us over the years, sometimes completely impossible. Going out as a family has been painfully hard at times with two kids with very different personalities and needs. I thought about how much we’ve practiced all the skills and strategies. To the unknowing observer, we looked like any other family enjoying the lights and each other. Deep down we knew that this Christmas gift was years in the making, coming through faithfully working and waiting, attending to what is important, and believing in all the goodness that comes into our world just because of who we are together.

Family pic with santa 2012 sm The hayride ended, we got off, and we went in search of Santa. We hadn’t had a successful, formal Santa picture in years. We honestly stopped trying. We’ve seen no need to stress our J-Man out at our mall over a picture. But a very understanding Santa was there in a large sleigh (no crowding or needing to be too close). J-Man cautiously climbed in at Santa’s right, Dale Jr. nervously to his left and completely in awe of the mythical figure. Mary and I stood on either side of the sleigh, and the photographer snapped our picture. This would be our first family portrait in over two years.

While we waited on the photo to print, we all sat outside together at a picnic table next to a roaring fire. For a minute, no one made a sound, not even the normally chatty Dale Jr. We just stared into the fire as its light danced and flickered up to the heavens.

Before we left, the J-Man and I walked over to a light display.

“Did you like the lights?”

Grinning he says affirmatively, “Yites!”

I see a sign, point to it, and say, “Do you know what that says?”

“Meh-errrrr-eeee-kiss-mas!”

And so much more. One we will always remember, this time of peace and joy and light.

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Operation Dining Time – Part Two

by Tim on August 7, 2012

[ I know it’s been eons since we last posted. I’ve been devoting almost all my free time to a new project I’m really excited about. Details are coming soon, but the first phase of this project involves the release of my new book! In the meantime, here’s the continuation of our Operation Dining Time posts and our rip-roaring success of helping our J-Man become a less picky eater! ]

For an introduction and the initial steps we took to start this process, go back and read Mary’s first post about Operation Dining Time (ODT). You can also read a general overview that I wrote over on Special-ism.

We set as our shoot-for-the-moon goal 26 new foods by June 30, the end of the school year. The new foods marathon (where 26 came from) was suggested by the teachers as a marketing ploy since I’ve run a couple of marathons now. :-) This gave us a period of about five weeks to do what seemed unthinkable. When we set the goal, he’d only tried a small number of new foods.

Remember, we started with just six foods, the same six he’d eaten for years. Since we started ODT, he’d only added a few more to that point. Shooting for 26 more on top of that really did feel like we were aiming for the moon.

But one thing we’ve learned over the years is that when you aim ‘impossibly’ high, our kids can often go even higher.

The amazing news is that we finished the marathon new foods goal with plenty of time to spare. We had 16 days left when we hit 26 foods! So, we just kept going. By the June 30 date, he’d tried by our count 44 new foods! It may even have been more than that, but we sorta lost track!

Let’s all let that sink in a minute. This child ate six foods total up until we started making these changes. He’d been stuck in this diet pattern for years.

We are as mind-blown as anyone. It really does feel like a miracle.

This doesn’t mean he loved all these foods, but he did try them. We didn’t expect him to enjoy everything he tried – who does? – but his willingness to experiment and courage to try were the most important things. We believe that with this so much more becomes possible.

The main part of the diet change for us was getting over the inertia at the beginning. Autism defenses don’t give up easily. Even if your child shows interest in new foods and a genuine desire to eat them, these habitual patterns are hard for them to get past. These patterns were established and took root over a period of months and years. Think of it like trying to uproot a tree that’s been in one place that long. Not easy.

The key is to find the most motivating and positive ways to chip away at the mountain you want to get beyond. We offered J a bite of new food followed by a bite of one of his old, preferred foods. Think of these motivations like clearing paths in overgrowth for them to walk on more easily when trying to find a way around these defenses. You have to be consistent, though. Offer the new food but don’t give the preferred reward food until your child eats the new food.

We still have to use this approach. For instance, we recently asked him to eat a few bites of corn and peas (not mixed, of course!), which at first he was not interested in. We said if he just tried a bite of either one, he could have a bite of something he liked. For an entire meal, he rejected this. So, we ended up skipping that meal entirely. This was at lunch, and he’d had a good breakfast so no harm would come from skipping lunch. At his afternoon snack, he still resisted for a short while, but eventually his interest in eating something overrode his defenses. He not only tried them but ate the entire portion of both the corn and peas. He got his preferred foods, and then all was well.

Your child may legitimately not like the new food, of course. We set the rule that he at least has to try it a few times before rejecting it as a food he doesn’t like. We note his reaction. We’re pretty good about reading his expressions, especially because he’s minimally verbal.

Interestingly, the end result so far is that he’s more or less made himself mostly vegetarian. Actually except for some cheese, he’s pretty close to vegan. He hasn’t much cared for any of the meats. We aren’t pushing any specific diet on him since our goal has been to expose him to as much variety as possible, but if this is ultimately his choice, we’ll be happy to honor it.

We tend to introduce foods we think he’ll like based on what he’s eaten before and what foods he prefers. Examples: Apples because he likes applesauce, and they’re crunchy like the crunchy foods he likes. He will go through a bag of apples every few days now! Cheese toast because he likes buttered toast. Cheese with a saltier flavor (mozzarella string cheese) because he likes salty snacks, though he hasn’t much cared for cheese on its own. And so on. We’ll occasionally introduce an ‘out there’ food that’s pretty far off the path when compared to other foods he’s tried simply to see what will happen.

Inertia and friction have a couple of lessons here. With inertia, it’s hard to get something moving, but once you do it builds momentum and gets harder and harder to stop. With friction, it takes more pushing to get a stationary object going, but friction actually decreases as an object starts moving. (See, my college degree finally is getting some use!)

He did initially lose quite a bit of weight. At first this was because of his resistance to eating what we offered. Even when he started eating much more, he kept losing for a while. Depending on your child’s current diet, this strikes me as a likely thing to happen.

J was eating tons of snack carbohydrates before, and any of you who have tried to diet likely know that carbs also make you retain water, up to three times as much water as the carbs you take in. He lost over the first three weeks or so about 5 pounds, or a little under 10% of his body weight. But now he eats a lot and has gained all that weight back plus a smidge, except now it’s with a diet better than most people we know!

The magic moment happened at his class’s end of school year party. There he was sitting at the table with his classmates, eating a cupcake just like they all were. It’s hard to express just how miraculous this feels. It was all so perfect.

Every time we’ve gone somewhere, we’ve either had to bring his snacks to eat or just accept he won’t sit at the table and eat what the other kids are. To many this would seem like a little thing. Most parents probably never notice, but this is one of the hard fought victories autism parents and their children win that they never forget.

For the first time ever, we added a fair amount of money to his school lunch account. When whatever is being served that day contains foods he likes (or sorta likes), he can get lunch with the other students. This is such an enormous victory that I can’t even begin to tell you, though many of you already understand. I honestly wasn’t sure this day would ever come, but it has.

People have asked us whether he has experienced any physiological, emotional, behavioral, communication, or learning changes under the new diet.

The short answer is, not really. I admit that this is a bit of a disappointment. It wasn’t the main reason we did all this, but we were hoping for some additional benefits along these lines.

Physiologically, his digestion has overall seemed somewhat better, though recently it seems to be getting dodgy again. For a while he seemed calmer, but that was only temporary. He seems about as fidgety and sensory seeking as ever.

He was already having a good school year so it would be hard to discern whether any improvements were diet-related or not. I imagine it had to help some. Nothing I’d call a quantum leap at school or anything, though. Same with communication – he’s still improving gradually but surely.

Like I said, while we hoped for additional benefits, that really wasn’t why we did it. We were concerned about his long-term eating and health habits. We knew that habits get harder and harder to change as kids get older and that teachers in higher grades are going to be much less likely to participate in this kind of program than are elementary school teachers. Mostly, it was simply time.

You always hope some other obstacles will break loose for him and bring about more exciting changes. Such wishing is perfectly normal. But our successes here will translate into others as yet unknown, and we have much now to build from.

It is wonderful to sit at the kitchen table with him in the morning, me with my cereal and J with his apple slices, grapes, pears, carrots, or whatever we give him that morning, and enjoy breakfast with him. These are the victories you remember, the moments you cherish, and the milestones that make all the difference as you continue along this journey.

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Operation Dining Time – Week One

by Mary on June 19, 2012

[If you’ve been following us on Facebook, you know that we’ve been in the midst of completely overhauling J’s diet. To date, he has tried 27 new foods in three weeks! At the request of numerous people, we’re going to write up what we’ve done to get him to try new foods. The plan at this point is to post this in sections and then compile the whole thing in one place. You can also read a general overview that Tim wrote over on Special-ism. Stay tuned.]

This is the story of a family desperate to get their son to eat more than seven foods. Yes. Seven foods. It used to be six foods, but we added pretzels in the last year. Note that these seven foods were highly specialized – it couldn’t be just chicken nuggets; it had to be Tyson Breast Nuggets (only sold in boxes) straight from the freezer to the microwave on one special kind of plate. It had to be Tostitos Bite Sized Rounds tortilla chips. It had to be Premium brand saltine crackers. Heck, we celebrated when we got the J-man to eat the snack food from a SQUARE container instead of a RECTANGULAR container.

ODT 1

Our original, well-used, well-loved food card.

Together with the J-man’s teachers and therapists (aka World’s Greatest Teachers), we devised a plan to begin adding new foods to his diet. The J-man had shown interest in other foods (ABSOLUTELY the first step, or we never would have tried it. He had to be ready to do this too!). We expected it to be a very long process to even add ONE new food, since every time we tried before, the J-man simply wouldn’t try the food, or would “kiss it” or “touch it to his face” or do all those other things the experts tell you to do. We decided all the adults had to be completely invested in the process, and that we would cheer each other on to stay strong.

The J-man’s teachers came up with an amazingly structured program for him. They came up with new terms for eating that we had never used before, because we thought part of the problem was his expectation regarding word meanings – before, “taste” had simply meant “touch it to your lips” and “eat” had meant “here, have one of your preferred seven foods.” They changed it up.

Before, the J-man was a “grazer” – we didn’t have set meal times, and when he was hungry, he simply asked for one of his preferred foods, and we hopped up and got that for him. (I spent a lot of time hopping up to get someone food instead of eating my own meals.) We decided on set meal times, and had to stick to them. Most important for the J-man, we allowed him to be hungry. Really hungry. We found out that hunger was a pretty darn good motivator for him.

So, Operation Dining Time began. We started with this – and I’m copying from the actual written plan here:

  • One new food will be introduced at a time. Cheese will be the first food. We will use string cheese cut into small pieces. Teachers and parents will discuss when it is time to introduce a new food.
  • One tiny bite of the new food will be given at each dining time. The J-man must first eat the bite of new food – and then will get his designated food for that meal. If he does not eat the tiny bite of new food, then he does not get his designated food. The new food will then be presented at the next meal time.
  • Applesauce will no longer be given during meal times. (Ed. Note: we use applesauce as the medium to get ground-up vitamins and allergy medications – as well as melatonin at night – into the J-man. We decided from the beginning not to give that up, but we lowered the volume of applesauce given dramatically, and it’s ONLY given to get him to take meds morning and night.)
  • A new meal schedule will be implemented:

    8:00 Breakfast: 1 piece of toast, 3-4 nuggets
    12:00 Lunch: 5 nuggets and 1 piece of toast
    3:00 Snack: J-man’s choice of 3-5 pieces of each preferred snack food
    6:00 Dinner: 5 nuggets and 1 piece of toast

  • New language will be used for each step. Meal time will now be called “time to dine” or “dining time.”
  • The following terminology will be used for first bites of a new food:
    1. Put on tongue
    2. Hands down
    3. Munch, munch, munch (aka, chew)
    4. Gulp (aka, swallow)
    5. Clean mouth (food all gone)
  • Teachers will make visuals for each step. Visuals will be used at school and home during each meal time.

ODT 2

The table setup. Visual instructions for eating (face blurred because picture is of another child – but pretend the child is demonstrating the action); “dining time” strip from the picture schedule; First/Then (in this case it says “First cucumber, Then snack” – since we have a lot of new firsts and he can read, we just wrote out ‘cucumber’)

ODT 3

Larger version of visual instructions for eating. We had to invent a whole new vocabulary since certain words like eating, tasting, chewing, etc. have specific meanings to him, meanings that aren’t quite correct, and changing a meaning of something once it’s entrenched in his vocabulary is very hard.

The teachers also created a video of the child in the pictures actually EATING the food, while they voiced the steps one takes to try a new food. The J-man liked the video, and wanted to watch it over and over, which was fine with us! We also turned it on while he was at the table for Dining Time, along with having the picture cards above and beside his plate.

Days 1 and 2: The first 40 hours, the J-man ate only the 3 tiny bowls of applesauce. We didn’t totally restrict fluids (of course) but we did not allow him to simply drink the calories he needed either. He followed us around, asking for foods by name, because we had put away the food card. We only offered food at meal times, and always only offered the new food first. If he refused to try the new food for 10 minutes, we put all food away until the next meal time. (This is the part where you feel like the world’s shittiest parent, by the way.)

The J-man actually got kind of pale and shaky looking by the second Lunch Time, and that’s where the World’s Greatest Teachers stepped it up again. They wrote a Social Story explaining that the reason his tummy hurt was that he was HUNGRY, and the way to NOT be hungry was to “Put food on tongue.” They wrangled a piece of string cheese into his mouth and literally manually moved his jaws to get him to chew it while they held his hands… and he swallowed it. They immediately gave him a tortilla chip (reward food).

That was going to be it – he was going to get to eat ANY preferred food he wanted for the rest of that Dining Time period. The original goal was 1 bite of new food, then say, a plate of nuggets, or a container of snack, or a full piece of toast. Instead, because he’s just awesome, the J-man assumed he had to eat another piece of cheese to get the reward food, and so he DID! He ended up eating almost two whole pieces of string cheese that day, with reward foods following each bite. Tim and I were called to the school to watch the magic happen during Snack Time, and to make sure that the J-man would eat for us as well. And so he did, although he did test us first to make sure we would also make him eat the new food.

We went the next couple of days, adding in grilled chicken and apple slices. The J-man tried a new tactic – holding the chewed food in his mouth until someone wasn’t looking, then spitting it out. We and the teachers waited him out. Waiting him out seemed to be a common theme. We found that grilled chicken wasn’t his favorite protein, but that he would eat it if hungry enough.

By Friday though, we sent in 2 more new foods – baby carrots and strawberries – both foods he had shown an interest in before. And, he tried them. He liked them both. But he would still only eat a new food with a snack food as reward. Nuggets were not a big enough motivator for him. So, World’s Greatest Teachers changed it up again.

And that is a different post.

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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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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) – Click for YouTube video. This is similar to what we’ve done with a few variations.
* 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!

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

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 […]

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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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