Paste your Google Webmaster Tools verification code here

Stories About Autism

Going to the dentist – It’s like pulling teeth

Hands up who looks forward to going to the dentist?

I know I don’t.

Trips to the dentist instil fear in most people, kids and adults alike. So far, in my experience,  autism and dentists simply do not mix!

Most children can be bought off with the promise of treats if they behave and do as the dentist asks, and even the dentist plays along with stickers, certificates, and even lollipops (although I’m sure they’re now sugar-free) if they’ve been a good boy or girl.

But what do you do when your child doesn’t understand where they are going, what is happening to them or why?

How can you prepare them for a visit?

How can you promise a reward for good behaviour if they can’t see past the here and now?

Any trip to a doctors, dentist, or hospital for Jude causes an instant rise in anxiety level, and the fireworks don’t take long to begin. No matter how child-friendly they are, how many toys are available, or how big a play area they have, the concept of being examined medically by anyone just doesn’t fly with Jude.

So a simple dental check-up is never the easiest. Luckily for us there is a dentist that specialises in treating children with special needs, not too far away from us.

Even so, a dentist visit is everything that Jude finds uncomfortable about the world, and from his point of view goes something like this.

First there’s a waiting room full of other people where he’s supposed to sit on a chair and wait. There’s a phone ringing, people talking, the sensory input is overloading. He starts to get scared. Why is he here?

Then he’s led into a strange room which he is forced to stay in. How long for? He doesn’t know. He wants to get out the minute he enters the room, but instead he’s made to sit in another, bigger chair. Then he’s made to lie back with his mouth open whilst a strange adult pokes around inside his mouth. Feeling anxious and the need to self-regulate all he wants to do is self-harm, and get out of that room and go home. Instead, he is pinned to the chair so that he can’t do either.

The dentist gets about 20 seconds of examination time, with my wife trying to keep him still, all the while conscious of a stray arm or foot attacking her, the dentist, or turning on himself.

With Jude unable to communicate verbally, and not always able to express how he’s feeling, knowing that there is a problem in the first place can be difficult to pick up on. You have to become a bit of a detective, piecing together different clues, and looking for any change in behaviour.

This time, after a few days of random meltdowns and general upset we noticed that sometimes it was happening when he was eating. The dentist appointment soon revealed a tooth needed extracting. This was not the first time, unfortunately, we’ve been through this twice already.

You see, the other challenge, which would prevent these problems, is actually trying to brush Jude’s teeth. Some days it’s possible for a minute or two. On other days, it’s impossible. Jude will just refuse to open his mouth, continually bite on the brush, or spit out whatever miniscule amount of toothpaste makes contact with his teeth. Trying to brush his teeth whilst he is trying to slap himself around the face can be pretty difficult!

We’ve tried it all.

We’ve tried forcing him (never a good idea as the experience just becomes more and more traumatic each time).

We’ve tried distracting him with a game.

We’ve tried singing, talking, begging, pleading, mimicking, but some days he will, some days he won’t!

So, with the combination of brushing being so tough, a very limited diet (another of Jude’s many challenges), and trips to the dentist that last about 30 seconds, there’s a good chance of Jude developing problems with his teeth. Short of pinning him to the ground twice a day and shoving a brush inside his mouth, we are still trying to find a better way.

Anyway, a trip to the hospital was booked, we would have to arrive at 8 am, meaning Jude would have to be dragged out of bed at 6:30 am (in case you haven’t read any other posts, not a good time of the morning for Jude!)

As I said this wasn’t our first time, and the previous 2 experiences still fill me with guilt, even though I know it had to be done.

Each time we took him to the hospital we loaded him into the car half asleep, completely oblivious to what was about to happen to him.

As we’d walk through the hospital I could feel the tension increase within him, as he frantically scanned around, trying to figure out what was going on. Both previous trips then went something like this

  • We’re shown to a room with 5 other children all waiting to have their teeth out too. Sit Jude on the bed, switch his iPad on, draw the curtains and try to help him block out his surroundings
  • Try to keep him calm whilst a nurse weighs and measures him, reassure him everything will be ok
  • Resort to pinning his hands still whilst they apply a cream to numb the area that they will inject the anaesthetic. Stop any attempts to rip off the plaster keeping said cream in place
  • Try to persuade Jude to take the medicine they’ve provided to reduce the pain after the operation. End up having to hold him still and syringe into his mouth whilst trying to stop him spitting it back out.
  • Keep him on the bed watching his iPad whilst we wait another half hour to be taken into the theatre. Jude doesn’t do staying still, especially in a strange room, all he wants to do is get up and bolt for the door.
  • Be wheeled down to theatre on the hospital bed. Try to keep Jude calm as he is suddenly confronted by 5 adults in gowns, strange machines, and people trying to talk to him. Sit Jude on my lap and attempt to hold him still whilst they hold a mask over his face to put him to sleep. Squeeze him tight as he cries, screams, kicks, slaps, hits, all with a wild look in his eye. Repeatedly tell him everything is going to be ok, and try to block out the feeling that he’s looking at me for help, to make it stop, all the time with no understanding of what is going on or why.

Both times I left the room trying to fight back the tears. I knew the operation was what he needed, but felt awful at what he had just gone through. I worried that he was going to hate me when he woke up, that I was the one who had just let that happen to him.

Both times, within half an hour of the operation being completed he was awake again. We could hear his howls and screams before anyone needed to tell us he was awake. He woke up, mouth full of blood, in pain, drowsy, desperate to get off the bed, and fighting with the nurses. He was delirious, thrashing around at anything he could get his hands on.

He wanted to lash out. He wanted to hit himself. He didn’t know what to do.

I scooped him up and try to cuddle him, try to calm him down, and stop him from hitting his face. It was no use. My wife took over. It continued.

He cried louder and louder. He was in pain. He had this overwhelming sensory feeling of blood in his mouth, and just didn’t understand what was going on. This lasted for about an hour and by the end of it, all 3 of us were covered in blood, exhausted and mentally drained.

Whilst this was all going on we were still in a room with 5 other children and their families, separated only by a curtain around our bed. Although my focus was on Jude the whole time, you can’t help but wonder what the other kids and their parents were thinking. Were they sitting there thinking how badly behaved that child is, judging us as parents?  Was Jude scaring the life out of the 2 kids who hadn’t gone down to be operated on yet?

To my own shame, that first time we were there, I remember feeling embarrassed about what a scene we were causing

So, to say that we were not looking forward to Jude going back for another tooth out was an understatement.

But this time I was pleasantly surprised

It seemed our previous experiences had left a lasting impression.

This time when we arrived we were ushered to an empty room. There were 5 beds in there, so I assumed that we were just the first to arrive. Nobody else did, they’d assigned us our own room. There were no other children to add to Jude’s stress. No other families for us to be embarrassed in front of, and no other children to be scared by Jude’s reaction!

This time, we were offered some anti-anxiety medicine for Jude to take pre-operation. It worked a treat.

There was no fight to keep him on the bed, he sat happily watching his iPad.

He didn’t try to rip off the plaster covering the numbing cream off his hands.

He didn’t get overly stressed by the nurses coming in to check on him.

By the time they were ready to take him to the theatre, Jude was asleep (not just the effects of the medicine, he’d only had 4 hours sleep the night before). I couldn’t believe my luck. There would be no pinning him down to get him asleep, all they had to do was administer the anaesthetic and I was in the clear.

Then, the nurse missed Jude’s vein…….

He shot up out of his sleep, drowsy, confused and began to thrash around. He hit me once, then turned on himself as I struggled to keep hold of him. It took about a minute to get him still enough for them to put the injection into the other hand, but that was long enough!!

It was so nearly perfect.

Still, much better than the previous 2 times so far.

I left the room and rejoined my wife and we waited it out. Forty-five minutes later the dentist came to get us, but the room was silent. Jude was still asleep. When he was unconscious and they were able to examine him properly they realised he needed 3 teeth extracted and a filling. My old friend guilt kicked in.

How long had he been in pain for and we hadn’t realised?

How had we let his teeth get into such bad condition?

He slept for another hour, meaning his mouth had much more time to recover. When he woke up, he was still drowsy, but he stayed calm. I scooped him up and carried him straight to the car, and drove him home. The episode was over, Jude had got through it, this time with relatively little fuss. The next couple of days were very up and down, as he adjusted to the pain, the sensitivity, and the new gaps in his teeth, but overall it wasn’t too bad

Dentist Collage

The anti-anxiety medication was a godsend. Although this particular dose was strong, it did make us think about how important it might be for Jude’s well-being and general development that we find a suitable alternative for everyday use.

The hospital being able to provide us with a more private room also helped. I know you can’t expect such treatment, but if it is possible it does make life so much easier for everyone. If there is a next time I won’t be shy in asking if there’s a private room available.

This trip was a relative success, but in all we were only at the hospital in total for 5 hours. My real fear is what would we do if Jude had to go in for a different kind of operation which meant he had to stay the night, or even longer? But I’ll talk about that another time.

For now I just hope we have as little dentist, doctor, hospital time as possible!

P.s,  I’d like to say a big thank you to all of the staff at Colchester Hospital who did everything they could to make Jude’s experience, and therefore ours, as stress-free as possible.

Apart from the nurse who missed his vein 🙂

 

14 comments

  1. Annie - October 1, 2015 3:59 am

    I am glad you went through this one – this is tough! I have been trying my best to delay a trip like this for my 5 year old ASD son. What I found useful is to instead of forcing teeth brush on him, I gave him 2 capsuls of probiotics just before bed. He loves this particular brand, Bio-kult, and he would crew them in his mouth. He might swallow them but some will be left in his mouth overnight. The probiotics would help fight bad bacteria and keep his teeth from decaying. So far, it has been working well, no tooth decay!!

    • James Hunt - October 2, 2015 12:00 am

      Wow, probiotics, you’re full of good ideas Annie.
      We’ve given pro-biotics mixed up in a drink, not sure if I’ll be bale to get them to chew them!!
      Hopefully we’ll be bale to reduce his sugar intake, and up the amount of brushing 🙂

      • Annie - October 4, 2015 2:57 am

        Guess we come up these ideas to survive! I don’t I would last long sleeping 3 hours a day. You and your wife are truly amazing!!

        Sugar, sugar…its our worst enemy. We took sugar (both natural and refined ) out of our diet cold turkey about two years ago (we were doing a special diet called GAPs). It was tough but life changing event, like taking addicted off drugs, once they restart, they start to eat veggis, bitter and sour food without coerce… the sky opened up : )
        I am sure if you take him off sugar he will crew probiotics (ours even eat green algae like candy:). No guilt trip…just sharing and many many blessings to you!

        • James Hunt - October 7, 2015 11:32 pm

          Wow, that sounds like it must have been difficult! I know sugar is not good for our kids, maybe one day we’ll be strong enough to go through a radical change like that. That’s great that it has worked so well for you, will have to look into GAPS diet more too. I’ve heard lots of parents talk about it just not been brave enough to try it yet 🙂

  2. Nadia - October 3, 2015 5:18 am

    Oh my gosh…your first account of the first two experiences had me in tears. You are a strong father, James, you should not feel guilt, just love. So glad the third time went more smooth.

    • James Hunt - October 3, 2015 12:28 pm

      Thanks Nadia, me too!! The third time was sooooooo much better. Hopefully we can keep him away from there for a while now 🙂

  3. ERFmama - October 17, 2015 8:31 pm

    This is such a heart felt story I was on the brim more than once. How incredibly scary it must be for him, I can’t even begin to imagine how it is. I think you are handling it so so well and I was SO happy to read that the hospital actually made changes. Did you ever write to them about the experience? Or was this something they remembered all by them selves?

    The dentist is one of my biggest phobias and I struggle really bad to get to one because I’ve had some really really bad experiences my self that has left a mark. My children luckily have a very good dentist and actually like going there (I know I don’t get it either”! lol ) and are almost over helpful when in the chair hehe.

    • James Hunt - October 19, 2015 11:54 am

      I’m not sure whether it was luck, or the hospital and dentistry staff communicating well, but if we have to go back I’ll definitely contact them in advance and try to get similar treatment. Yes, it must be really scary for him, just another of the issues caused by a lack of being able to communicate well.
      Let’s hope your children continue having good experiences and are happy to see the dentist 🙂

  4. Rainbowsaretoobeautiful (@rainbowsaretoo) - December 6, 2015 9:25 pm

    This couldn’t have been a better blog for me to read this week. Last Friday was our pre-op for our second ASD son at the dental unit at Croydon hospital. Apart from my 4 year old having a general I’m mostly terrified about how upset and disorientated he will be. I know the reality, but I’m glad you’ve shared this with us and me.

    • James Hunt - December 7, 2015 11:08 pm

      Wow, good timing!
      It is a scary experience, but looking back now I realise you just have to be as strong as you can remember in that moment that the anaesthetic will wear off, and as long as you can manage the pain relief he will be ok. Good luck, I really hope it goes as smoothly and pain-free as possible.

  5. Clare - December 13, 2015 11:26 am

    Another great post James! I am ashamed to say I have not yet took Hayden to the dentist. I just know it will be a nightmare. We mentioned it at our diagnosis follow up and they have said to speak to the consultant at our next meeting and she can refer us to the specialist dentist (at Colchester Hospital funnily enough!) So hopefully some time in 2016 we can actually get Hayden’s teeth checked! Your hospital story reminds me of taking Hayden to have some bloods taken a couple of years ago. It really is a stressful and distressing experience for everyone involved. Thanks for linking up to #spectrumsunday. Hope you join again this week! xx

    • James Hunt - December 13, 2015 7:18 pm

      Thanks Clare, I didn’t realise you were in Essex too! It’s nothing to be ashamed of, if Jude hadn’t had problems we would probably still be putting it off too. Yes we’ve had bad experiences with blood too, then one time we had a really good nurse and Jude just let her do it with no fuss. All of these things are scary, but the more relaxed and calm we are about the experience it seems to rub off. 🙂

  6. Clarice Castro - December 17, 2016 10:49 am

    Hi James, I have been reading your hole blog and have come to this post now. Sorry Jude have been trough all that. Don’t know if the brushing have improved or if you have founded other solution, but have you tryed a waterpik? My kid was having trouble with brushing teeth and a few people told me about it, I haven’t tryed yet, but looks interesting. You’d still have to brush, but could help, if he liked, I think. It’s a water jet, not a brush, so a very different sensation. Loved the hole blog, by the way! Clarice.

    • James Hunt - December 29, 2016 9:56 pm

      Hi Clarice. I’ll definitely take a look at the waterpik. brushing has got better (as long as we do it in the shower or bath) and so far no further problems. Not that he’ll ever let a dentist get a good look in there, but nothing apparent, and no pain! Thanks for reading 🙂

Translate »