Dentist

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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Boy vs. Dentist – The Next Chapter

by Tim on February 1, 2011

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

Wanted to mention that a little over a week ago we had the J-Man’s every-six-months dentist visit. Last time we went to the dentist, we wrestled with all the issues around restraints and how to get him through the actual process and keep both injuries and emotional trauma down as much as possible. There was the inevitable reflection on whether to use the papoose board to hold him during the cleaning and exam. We received feedback from several people, and most of that feedback echoed our hope of never having to use anything like that with him and looking at it as a last resort.

One of the benefits of all the running and training I’m doing is that my body is significantly stronger and more resilient. But what I’ve learned is that I don’t have to somehow do restraint by muscular force, for lack of a better term, because as strong as he is that would probably just hurt both of us. Besides it’s not something I think is desirable in any situation short of someone being in danger. Becoming the kind of stronger my body has over the past several months has allowed me to be physically comfortable while holding him in situations like this for longer periods of time. It’s the interesting idea that you become stronger, and as a result, you can use less overall strength to do something. All those stronger core and stability muscles do wonders in situations like this. But before I go all Richard Simmons or something…

So we arrived at the dentist’s office, and they had already put the papoose board on top of the exam chair. This got me really anxious, and I think they noticed. They emphasized that they put it there just because in the event Mary and I decided we absolutely had to use it, it already being there would make it much easier. I didn’t feel like they put any pressure on us to use it, and everyone seemed to have a “let’s do everything we can without it first before we consider it” perspective.

It did have a perhaps unintended benefit. The board is a little wider than the chair and stiffer, so it gave the J-Man more surface area to lay on, me more room to hold him while the hygienist cleaned his teeth, and a stiffer surface that wouldn’t make me have to wrestle the chair too. So Mary held his feet, I had his arms and torso, and the hygienist cradled his head while she worked. Everybody talked calmly and kept encouraging and praising him, and I hummed Kumbaya to him. (I’m not kidding. He likes that a lot now.) The hygienist and the dentist are not fazed by anything, and they have such calming and affirming voices that if you removed the screaming panic from the room, they might induce a pleasant narcolepsy in most people. We almost have this down to a system.

Of course he protested strongly and loudly, but noticeably less so than last time. Perhaps he was more comfortable with the process, the way we were holding him, the stiffer board under him, or some combination of those and other factors we didn’t even think of. You never can tell in situations like this.

We really thought he did so well, and he recovered quickly – albeit grumpily – plus his teeth were great, so we called it a highly successful trip to the dentist. Normally we just aim for no major injuries – minor ones are usually acceptable – and no permanent emotional scarring. So this was positively triumphant by those standards.

We were greatly relieved that we didn’t have to even consider the papoose board. There may come a time when some serious medical situation arises where we have to use some sort of restraint. I dread that possibility more than I have words for. But we’re learning that often a combination of the J-Man’s growth and resiliency, our surprising-to-us levels of parental competence and experience, and the reserves of courage he’s learning to draw on in very tough situations come together at the moment when we really need these things to. And repetition, even if it’s six months apart, does seem to help, too.

Next mission six months from now: Both kids will have to go to the dentist. Ack! Stay tuned…

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Autism Meets the Dentist – To Restrain or Not Restrain

by Tim on August 5, 2010

Monday was our semi-annual trip to the dentist. I doubt I need to go into much detail as if there’s one universal dread we share as parents – and a mortal fear that most of our children experience a thousand-fold worse – it’s the dentist. No offense to the dentists in the world, but with every system in your body on sensory overload most of the time, having a bunch of people crawl around in your mouth with loud and/or pointy instruments under bright Klieg lights isn’t really a recipe for that peaceful, easy feeling.

The truth is, it sucks, and all we pray for is that no one is injured as a result of going and that our son isn’t permanently damaged emotionally. We get through it because we have to. I know many parents avoid it altogether. Seeing our children experience what looks like – and likely is – frantic terror is something we’d do about as willingly as having a few fingers chopped off. I guess we just decided that some kinds of bodily care have to be done, and we have to accept what comes as part of that as best we can, which usually isn’t very well.

Monday’s visit was about typical. Lots of wrestling and J-Man screaming and all the dread and parental guilt that goes along with it. It helps that we fired the dental practice that treated us like second class citizens over a year ago. We love our current dentists. They’re constantly saying affirming things to the J-Man, they are completely calm about everything, and they get it done fast. Worth every penny.

But Monday we had to start coming to terms with an issue we’ve never been able to make peace with – to use restraints or not.

To this point, we’ve never used mechanical restraints on him for anything, medical or otherwise. It’s all been a variety of holds that aim for close body contact (deep pressure and hopefully reassurance) without doing anything that looks like it belongs in a pro wrestling ring. We’ve strained a dozen or so of our parental body parts along the way, but the thought of him bound up in something while strangers worked on him in his already terrified state was too horrible to consider.

However, it now takes three of us using all of our strength and skill to hold him at the dentist. I’d suffer a thousand injuries for him over and over again to make it easier on him. But he’s getting so strong that I’m almost to the point where I can’t hold him without hurting both of us, particularly him.

This leaves us with a possible outcome that we dread – using the papoose board. (Link to a product page – click the Images tab for more pictures) The idea of wrapping him in one of these restraints makes my blood feel cold. Even more mortifying for me are ones I’ve seen at hospitals that have the arms extended outward such that the child looks like a swaddled crucifix. Even though they don’t use those at the dentist, the image stays with me.

I can come up with one possible justification for a papoose board for some autistic children that makes some rational sense. For kids like the J-Man who crave deep pressure in their bodies and are calmed by it, there is a certain logic to using it. It wraps them tight, gives them full body pressure, and simulates to some degree the kinds of deep pressure work he seeks out whether as part of occupational therapy, sensory copying techniques, or whatever. I have read the experiences of a couple of other parents whose children were indeed calmed by the papoose board for this very reason. If the J-Man wasn’t a child who responded to deep pressure many times a day in daily life, I can’t imagine trying a papoose board.

The main question is whether we’re more likely to hurt him with three, four, or more of us trying to hold him vs. using a papoose board. Up until now, I’ve felt like the answer to this question has been simple – just hold him and do the best we can. He’s getting stronger and stronger by the day it seems, though. There will come a point where we can’t hold him. I’m trying to make peace with the idea of trying it once, and if it looks like he’s worse with it than without it, we’ll fall back and think of something else.

I know he’s scared out of his mind. Our hearts break into pieces for him. I’d give anything if there were some way we could talk him through it and reassure him. Feeling powerless is a common emotion for all of us, and this is one of those instances where that feeling is unavoidable.

That day six months from now is going to be full of dread. In the meantime, we’d love to hear your perspective.

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Our Trip to the Dentist

by Tim on July 31, 2009

Well, our semi-annual trip to the dentist (aka D-Day) went pretty well. And by ‘pretty well’, I mean we achieved the following goals:

  • His teeth got cleaned.
  • He doesn’t require any additional dental work.
  • The dentist, hygienist, and staff were nice to us and respectful of the J-Man’s needs.
  • We didn’t freak out too many other children in the office. (Yay for the separate room!)
  • He still agreed to live in our house after it was over.
  • No one sustained any major injuries.

I tell people, to an outside observer the whole thing looks awful and probably something akin to torture. To us, everyone got through it, we made some progress, and at least it was better than last time.

We liked our new dentist, too, which was an unknown to us beforehand even though they came recommended to us. The office was smaller, so there weren’t dozens of people and lots of noise and overstimulating crap in the waiting area. It was all fairly chilled out really. I particularly like it when the dentist and hygienists are calm and of even temperament no matter what happens during the cleaning and exam. I think the J-Man could have sprouted flaming arms and horns out of his head and it wouldn’t have affected them any.

We, of course, had to hold him down for everything. I had his torso and legs and occasionally a shoulder. Mary had arms. The hygienist had his head between her forearms and braced against her body while she worked. The fact that she got that spinning cleaner/polisher thing in his mouth and cleaned all of his teeth was pretty amazing, though I know he was in terror pretty much the whole time. [Insert parental guilt here.]

We got through it in 10 minutes or so. When it was done, he calmed down almost immediately in my arms. His ability to decompress after something that stressful is quite a testimony to his growth and general bravery. I can’t imagine much that would be harder on a child with serious oral sensitivity than to go to a dentist. It breaks our hearts to have to do this twice a year. Our hope is that eventually he’ll get more or more tolerant of it if we can set good dental habits and lay the groundwork now.

All that holding him down is not only emotionally painful, it’s also physically rough. Last appointment six months ago, I pulled something in my back and partially sprained my wrist from holding him. Last night, my Achilles tendon hurt (from bracing my feet on the floor) and now my low back feels like I did some sort of marathon weightlifting in the gym or something. Well, Ibuprofen and an ice pack should have it back toward normal in a day or so.

Good news is that his teeth are excellent! I know a lot of parents of autistic children struggle with their dental care. It took us forever to get teeth brushing incorporated into our routine. If we could go to the dentist everyday (perish the thought), he’d eventually get to a point where he’d be much more tolerant of it, but obviously there’s no way in this world that would happen anywhere other than our nightmares. But we can do things that will hopefully reduce his oral sensitivities – something we’ve been working on for over three years now.

We appreciated the calm and positive attitude they had and the respect and sensitivity they showed to the J-Man. So we’re pleased we made the change in dentists and will go back in six months to do this all over again. Each time it seems to get a bit better, so here’s hoping.

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Time For Our Semi-Annual D-Day

by Tim on July 29, 2009

Tomorrow is our scheduled, semi-annual dentist day, which we’ll affectionately call ‘D-Day’. We discussed the saga of his last mouth invasion in a previous post. Feel free to read about how much fun that was.

Since the J-Man’s last trip to the dentist, we made an important change. We fired his now former pediatric dental practice.

Were the dentists nice? Yes. There was one doctor in particular we really liked, in no small part because his wife used to work for the doctor who diagnosed the J-Man with autism, so there was awareness and understanding all around about our situation. The problem was, there was no way apparently – at least not for us – to request which dentist we got to see. (I think their practice currently has 4.) The other dentist we saw was OK enough. I thought the hygienists pushed him pretty far, but I kinda get the philosophy behind it. It seems like we weren’t allowed to ask for the one we really liked, and that was irritating.

For us, the decision to fire them was two-fold.

1. All special needs kids are seen only during the noon hour, which not only makes scheduling a nightmare and interrupts his school day (not like we can go back to school after all that), it feels like yet another example of us being segregated from the world. That said, I do understand one of their reasons behind it. Their staff shifts overlap around noon so they have more hygienists there who can gang up on the kids – so to speak – and provide additional support. And really I could live with this if it weren’t for the crap in point #2 below.

They really stretched their luck, however, in that we were seen well over 30 minutes late for our 12:00 appointment last time. Please do not make autistic kids wait that long in a crowded, noisy, pediatric dentistry waiting room with enough noise, TVs, fish tanks, video games, and other insane stimuli to drive us all batty with nothing he could actually do except wander in and out of the chairs like some obstacle course.

So they reserve this time for special needs kids, but can’t actually see any of us anywhere near on time. Well, thanks for nothing.

However, all that alone probably wouldn’t have driven us away.

2. It was the attitude of their staff that did it. They acted like they were doing us this huge favor to schedule us in the first place. Once we got his school schedule for the fall figured out, we realized his originally scheduled appointment fell on his second day back after this long break. So we called many weeks ago to reschedule since we knew he’d need consistency at school after this long break. It’s not like we were set on getting an earlier appointment. We actually asked for an appointment during his next break two months after his original appointment. (Reminder – we called and asked to reschedule weeks ago.)

“I’m sorry. We don’t have anything available until next year.” (insert attitude here)

We know [expletive expletive] well that they have appointments. Just not for him. Before we ever went there, we got in with maybe a couple of weeks notice. Now that I’m sure his file is painted with a giant red flag – or what I’ll call “The Scarlet A” – it’s a six-month wait.

So, we asked around and found a new, smaller dentist practice. Yes our appointment is still during the noon hour, and presumably for the same reasons, which I don’t have a problem with when combined with a respectful attitude toward our kid. At least they were up front about why and were polite and welcoming, and they were able to get us in quickly with no fuss. We’ll see how this carries over into the actual appointment.

Just to be clear – no I don’t expect anyone to roll out the red carpet for us. I don’t expect sympathy or special treatment or anything. But I do expect the J-Man to be treated with respect and as a child with feelings and integrity regardless of whether he can talk to you about them or not. He is scared to death of having his mouth worked on – and we feel like crap as parents enough as it is for putting him through that – and if you’re not understanding and sensitive to that about him, you can go to hell. And if you want our business, don’t act like you’re doing us favors. Nobody is that good.

Enough ranting. Gotta go practice my restraint holds and find something to wear to protect my more sensitive bits from injury again.

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What’s Your Autistic Toddler Like Now? (Part 3)

by Tim on March 2, 2009

And welcome finally to Part 3! This is the continuation of our series “What’s Your Autistic Toddler Like Now?”, a journey through what’s happening these days in the life of our autistic 3 1/2-year-old son and sequel to our very popular original article, “What’s Your Autistic Toddler Like?”. I meant to write this sooner, but illness has swept through the Flashlight household and rendered us all pretty useless this week.

If you haven’t already, go back and read Part 1 and Part 2.

I’m calling this group “Moderately Present” as these things are generally more common than not around here, but not as prevalent as the “Significantly Present” group from before. As with the previous posts, some of these are challenges for us and others are just things that are part of our day-to-day life. None of these are meant to be value judgments, just information about what one autistic toddler is like so you can perhaps see similarities in your own children or learn more about how these things are part of another family’s life.

I’ll be dividing this group into two parts. So we’ll finish this up in Part 4 soon.

Note: Wherever you see “DSM-IV” below, this means that attribute is part of the diagnostic criteria for autism spectrum disorders in the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition or DSM-IV. In medical terms, a specific combination of those DSM-IV criteria is what brings about a diagnosis of autism.

Same obvious disclaimer as before: We are not advising you on how to evaluate your child. Go get them evaluated by professionals with extensive experience with autism. Don’t just rely on some random people on the Internet – namely, people like us.

And here we go!

Characteristics That Are Moderately Present

Fixation or attachment to a particular object or parts of objects (DSM-IV; hard one to nail down for us) – For some, this manifests itself as obsessive-looking hoarding and organizing of objects. You might also see this as what seems like excessive fascination about a particular object (looking at a particular train for a long time or staring at a ceiling fan) or part of an object (a spinning wheel on a car).

The J-Man is all over the map on this one. It has gotten more noticeable over time, but I wouldn’t call anything he does here a major issue. The object(s)-of-the-day rotate regularly through an array of toys. For the longest time it was wooden blocks. Then it went to pieces of his farm animals puzzle, and then on to flash cards, and then wooden numbers, and then stuffed animals (which was cause for much rejoicing actually!), and then plastic food, and then randomly back through the order, occasionally mixing in some other things.

[click to continue…]

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You Kinda Get Used to Weeks Like This

February 5, 2009

I want to say this has been a crazy week, but I suppose it’s really just par for the course. On Tuesday, the J-Man had a dentist appointment. I don’t think I need to give any more setup to this story than that; it speaks for itself. After being in the waiting room for an [...]

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Survived the dentist!

June 11, 2008

We got through it. Anything that can be described like that is a victory. The dentist was really good. Turns out his wife used to work for the doctor who did the autism evaluation, hence the referral I assume. Regardless, he was calm, skilled, listened to us, understood the situation perfectly, and best of all, [...]

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