A Patient Patient

Joshua had a lie in yesterday as he was due at the dentist for a check up at 9.30, so I did not need to wake him until 8.30. But even then he was reluctant to get out of bed, as he held tightly onto his duvet as we faked a tug of war with it. In the end I used my secret weapons to get him up and I sent in two lively puppies who jumped on him and licked his face. That did the trick, they got him fully awake and so I was able to get him dressed and out of the house on time.

Joshua is aware of familiar journeys, so he will have assumed I was taking him to school but then at the last minute, I took a different turn which lead to a health centre close to school. He was happy enough to go into the waiting room – the dentist does not hold any fear for him as it does for many people – for Joshua it is a place full of adults to meet . We sat in the waiting room and in the pile of children’s books , I found one of our favourites – Emma’s Lamb – that I had not read to him for ages. He enjoyed the familiar tale too as he sat still and mesmorised as I read and ‘baa’d’ until the end, which is rather unusual these days.

Just in time, we were called through by the dentist to the consulting room. I encouraged Joshua to lie down in the dentists chair and lifted his legs up, but as we were chatting – I knew the dentist initially as a Mum at Joshua’s first special school – he got fed up and jumped off again and began to kick the radiator and look for the exit. so he brought our attention back to him and I seated him again. He obliged by opening his mouth so that she could take a look at his teeth and gums. It can only be a brief examination, that is all that he will tolerate, but it s a vast improvement on the days when he would only stand, while I wedged his mouth open and risked getting bitten. She was pleased with what we are able to achieve these days with the electric toothbrush, so I felt satisfied with his preliminary check up. We are really waiting for a proper examination and clean under sedation, which should have taken place at the start of the year but she assured us that we would be on a waiting list still and urged me to be patient.

Before we left, we compared notes on daycare options for Joshua as he daughter is older than him and has left school already and is now in supported living. It has always been invaluable to take Joshua to a dentist that has first hand experience of dealing with young people with special needs as I know she understands the issues we face. As we were talking, Joshua got bored again and began to kick my shins, rather than the radiator,  as a reminder that he needed to get to school so we headed off. Joshua was delighted to get to school and rushed into his classroom to get settled on the settee, before I had even put his bags into his locker. His home school diary reported that he had ‘ a proper sparkle in his eye ‘ which is a lovely thing to read and is  impressive after any day that begins with a trip to the dentist I think.

Check Up

Joshua visits a special needs dentist every three months these days, since he stopped eating 18 months ago, due to undetected abscesses and tooth decay. He had an appointment there at 8.30 yesterday morning, so we went on the way to school. He was pleased to be there and spent the first few minutes after we arrived, waving at the reception staff cheerily. But then I had to complete some paperwork, he became bored and so he began to kick my shins and then the reception counter, until I gave him a pen and some scrap paper, so that he could join in and fill in forms too.

When the dental nurse called us through, he suddenly became very attached to the chairs in the waiting room and he moved from one to the other, as we tried to persuade him into the surgery. He then had to be persuaded to sit in the big dentists chair, so that the dentist could look inside his mouth. he cooperated for a short while, long enough for her to see that I need to try harder to access the bottom of his teeth, where they meet his gums. I always consider it a success if he will allow his electric toothbrush in his mouth for more than 30 seconds, so I will focus on different areas of his mouth first in the future.

Last July he was sedated so that another dentist could remove troublesome, rotten teeth, add fillings and have a proper look around. She told me that he would be seen again in six months time for another examination and clean, so I have been expecting an appointment through the post since the new year but nothing has arrived as yet. Before we know it, that appointment will be a whole year ago and so I asked his dentist to chase up the referral for us. She agreed to do that, but added that due to the long waiting list for such sedated treatment, realistically, it was never going to be in six months time, 12-18 months was much more likely. Luckily I do not think that Joshua is in tooth -pain at present, but even if he was, this would be the expected delay, which is really not good enough.

We were only in the surgery for 5 minutes, and then we picked up another appointment for 3 months time and headed into school. He was very excited to get to school and he ran into his classroom and sought out his teaching assistant, so I left him in his happy place, clearly not traumatised at all by his visit to the dentist.

 

Check Up

Joshua had a check up at the dentist yesterday before school and he was badly behaved in the waiting room : he refused to sit and wait, but was trying to get into the surgeries where all the action was. He kept pulling my glasses off and throwing them across the room. I took him to the toilet with me to pass the time  ,as unusually we were early, but as soon as we were inside the disabled cubicle, he began to kick first the metal heater which made a great sound of vibration and then the wooden door. So he was being quite a thug. When we returned to the waiting room I found us a seat around the corner from other patients, and I hooked my arm inside his and I sang to him to settle him down and made him laugh by blowing raspberries. Soon enough we were called through to the  special needs dentist, who knows him pretty well.

I was surprised that he cooperated enough to lie in the dentists chair and I held his hand down and she was able to see his teeth and gums. While we have been brushing with an electric brush, it is still hit and miss as to how thorough we can be as he will only tolerate it in his mouth for so long. She said that while his teeth had improved, his gums still looked sore and that he should also have his gums cleaned with a softer brush. She demonstrated and made his poor gums bleed, but he tolerated the procedure. He messed about again at reception as I made an appointment for another check up in three months time.

The dentist is not far from school so I delivered him there in about 5 minutes and he lead me to the stairs that lead to 6th form, there was no doubt that he knew where he was going. He rushed into his classroom making a grand entrance , shouting “I like you” and hugging his TA. He was clearly happy to be there and both pupils and staff seemed pleased to see him too, which I loved. I put his belongings in his locker and said goodbye, but he was busy squeezing his TA so perhaps did not hear me. When he realised that I was going, he chased after me to see “Bye Bye” and give me a hug too.

As I drove back to work, I followed a car with a bumper sticker on saying ‘ My child has autism’ on it and some smaller print beneath it that I needed to get closer to read. I was intrigued as to why you might want to tell other drivers that your child had autism and wondered if it was because the driver or child might show irratic behaviour perhaps. At a junction I got close enough to read the smaller text which said ” My child has autism – Questions are welcome but parenting advice is not!”, which I have never seen before. So this driver must have been bombarded with well-intentioned advice and had finally had enough. But I am not sure how welcome questions about autism might really be as you are struggling perhaps to encourage your anxious child back into your car!

I thought back to Joshua’s behaviour in the dentist waiting room and how nobody had made any comment, the odd stare perhaps, and a few sympathetic looks, but I am struggling now to think of a time when I have been given unwanted parenting advice. Perhaps that is because children with autism can look more ‘normal’ than Joshua – sorry I hate to use the word normal – and so they can simply appear to be naughty. But Joshua with his splints and built up boots perhaps looks as though he has special needs and certainly his learning difficulties are clear once he speaks, so that is perhaps I have been spared that advice and instead I have frequently received the head on one side, sympathetic smile, the pat on the arm or am told ‘well done’, all of which drive me mad but I have learnt to smile graciously,even though I am inwardly snarling.

An apple a day keeps the Dentist away

Joshua really made us laugh yesterday when we went out for a pub lunch. He used to be a nightmare when eating out but lately, he has started to enjoy the experience and behave better, so long as there is not too much waiting around, as he has inherited both of  his parents’ impatience.

We sat at a table in the corner, far away from other customers, and quickly made our selections : Lasagne for Joshua, steak pie for his Dad and I chose a ploughmans lunch of bread, cheese and pickles. It came quickly and looked delicious. Joshua eagerly devoured his lasagne and chips and drank plenty of orange juice with it. I picked at my ploughmans in between feeding Joshua, so I still had quite a lot on my plate when he had finished.

My meal came with half an apple, a delicious touch as I love apple with cheese. I gave a quarter of the apple to my husband and started to de-core my quarter. Joshua watched me intently and then he leaned across the table and snatched my husband’s piece of apple back, handing it to me. He made it very clear that Daddy was not having any, but that if I was sharing my apple with anyone, it was to be with him! He proceeded to eat and chew 90% of the apple and was helping himself to cut pieces.

We both really enjoyed his determination, his clear expression of what he did and did not want to happen and the fact that he was enjoying apples again. He used to eat apple a lot – it was a running joke that lunch at Granny’s house always entailed a bowl of soup followed by an apple! But he stopped eating them, presumably when his teeth began to hurt, so this was a clear sign also that last week’s dentistry, traumatic as it was,  had been worthwhile. He clearly felt confident to chew and crunch apple again and maybe had been longing to do so for years, and that is why, now that he could, there was ‘no way’ – one of his favourite phrases – that he was letting Dad take his treat off him as he must have been eying up my plate throughout the meal.

Like Pulling teeth

Now I know exactly where the phrase ‘like pulling teeth’ comes from, as on Monday afternoon I witnessed just how hard that is. Actually it was so raw that I could not blog about it yesterday, I think I was still in shock quite honestly.

So I was delighted that Joshua got his dentist appointment through, after waiting 7 months and after chasing it and asking his consultant and social worker to also chase on our behalf. We rushed Joshua straight from collecting him from respite to the dentist and he thought he was going on a lovely outing with his parents and even uttered ‘Donalds’ optimistically and foolishly, I told him that we could stop there on our way home. We checked in and I knew that he was going to be sedated so that the dentist could fill his cavities and have a good look around his mouth as his usual dentist could not access the back of his mouth. But I was not prepared for what followed.

I was shocked when we entered the surgery as it was full of people, one dentist, an anaesthetist responsible for sedation and maybe five dental nurses, so with both my husband and myself bringing Joshua in, the small room was soon very crowded. They set to work immediately, putting a cannula onto his hand and the sedation was underway. I held his hand and could feel him relax but disconcertingly his eyes remained open. Later, he relaxed fully, closed his eyes and began snoring. They took xrays and while she was waiting for the results, she filled three cavities on his front teeth. I took the opportunity to trim Joshua’s finger nails while he could not object and everything was lighthearted at this stage.

The xrays showed that Joshua had two rotten teeth , both on the same side and both with abscesses underneath and the dentist explained that they needed to come out, that she would  try to remove them, but if that was not successful ,she needed to opt for the ‘surgical option’! The team audibly sighed and the anaesthetist stated that Joshua would need to be sedated for some time now. My husband left the surgery as he is not comfortable with blood, and I positioned myself next to my boy, holding his hand, abandoning the manicure as this sounded like serious business. I looked on horrified at the range of instruments of torture that they were gathering and the dentist asked me to hold his hand tightly as he was likely to jump!

There followed some very physical heaving and pulling at Joshua’s open mouth, his head banging from side to side and then an enormous tooth was revealed and she stitched his gum up. Then she repeated the process for the second tooth and thankfully it came out too, so there was no surgery involved, just some extreme pulling! Even so he needed his gums to be stitched up. There was a lot of blood coming from his mouth and the anaesthetist promptly removed the cannula. We transferred a sleepy Joshua to an armchair and wheeled him into Recovery where we waited for over an hour.

This is his first dental treatment and so he had never experienced the numb sensation before and it clearly bothered him : he kept moving his tongue around and was trying to get his fingers to his mouth to feel what had happened, but we could not allow his fingers anywhere near his stitches. Joshua was gushing blood as he would not swallow it, so he looked rather like a blood-sucking vampire and I was engaged holding his hand down and wiping his bloody chin all the way home, on the backseat of the car.

I have to admit to crying on the journey home and again when we got there as I was feeling so many emotions :

  • frustration that my son was in pain and confusion and I could not help him. I would gladly have swapped places with him and I am scared of the dentists chair.
  • Guilty that I had allowed his teeth to get this bad, this situation was avoidable. For 16 years I had prioritised other parts of his body over his dental hygiene, but not since Decemeber , he now has his teeth cleaned with fluoride toothpaste and an electric toothbrush three times a day
  • Angry with NHS : cross that Joshua had been allowed to suffer since December 2017 with ,his teeth while waiting for this appointment, as they only do sedation treatments once a week so the waiting list is long and slow to move!
  • Angry that we have had to choose between rotten teeth and seizures! Some of the anti epileptic drugs that he has been given over the years, when his teeth were forming, attacked his enamel, so the discolouration is not due to poor dental hygiene but as a result of an unpleasant side effect of his drugs. If it is known that certain drugs attack teeth, could we not have some joined up NHS-thinking ? Would it not be sensible to have Joshua regularly checked by a special needs dentist, as a preventative measure, rather than waiting 7 months to deal with this emergency?
  • I was shocked by the physicality of what two extractions meant. I had 4 teeth removed when I was a teenager and I don’t remember any of this violence. I could see what she was doing to my son and I was powerless to help him and I had chased them for torturing him, before my very eyes

Joshua being Joshua has been so very brave and has not made any fuss at all, he proved his resilience when he had his brain surgery in 2014. I am armed with Calpol and Ibuprofen, but apart from when we first got home, he does not seem to be in too much pain – his pain threshold is unbelievable, he takes it all in his stride. On Monday night he was laughing and giggling in the bath again and yesterday I worked from home in the morning so that I could see how much agony he was in on waking? He was absolutely fine, just a little sleepy so Yorkshire Grandma collected him at 11.30 to go have some holiday fun.  I gave her fussy instructions to keep him quiet and to only give him soft food. She reported to me when I was at work, that he had even eaten a full bag of Pickled Onion flavour Monster Munch crisps, which anyone knows sting your mouth even when you have not got stitches in there, showing that he was not prepared to give in to this pain or change his behaviour in any way.

I am so proud of my brave soldier, he is an example to us all on how to handle pain and trauma.

 

 

Good things come in threes

We had a really good day yesterday for several reasons :

  • I had a phone call in the morning, and after 7 months wait, Joshua now has an appointment on Monday to be sedated so that the dentist can fill his filling and have a good look at his teeth, while he cannot object. So the dentist that I complained to on wednesday, must have been able to pull some strings to get him seen. She first referred him to this specialist service last December on the last day of term before Christmas, so that is how long it has taken. Hopefully he will know nothing about it , it will not hurt at all and he will be in no more pain with his mouth.
  • We had made an appointment to go and look at an off-road wheelchair for us to buy for Joshua, so that he can comfortably come dog walks with us. We left home at 11am and we arrived in Cheshire after 3pm, so it was a long drive. But it was well worth it : such an amazing piece of design and equipment . Joshua seemed to sense what we were doing there as he sat beautifully in the comfortable seat as we wheeled him around the carpark, across various surfaces such as gravel – which it glided over like  a smooth surface – and long grass. I had expected him to be troublesome after so long sitting still in the car but he cooperated beautifully. We placed an order we were so impressed, although sadly it will take 10-12 weeks to build by hand, so we will not have access to it for the summer holidays, but it might be ready for October half term.
  • As the factory was in the county where both of our mums live, we drove an hour from there, to Granny’s house! Joshua was very excited to see her and even more so when she invited us to stay for tea. While we were sitting at the table Joshua invented a new ‘follow my leader’ game which made him roar with laughter. He would point at one of us around the table, indicating that it was our turn, then he would tap himself on the head or cheek, inviting us to copy him. Granny was really good at this game, while Mum and Dad were more keen on eating our salad after a long day in the car. After washing up, we went down the road to my Mother in  law’s house , where Joshua tried to engage Nanna in the same game, with less success. So he sat on the settee next to me, high-5ing me, trying to steal my glasses off my face and then finally snuggling down. We did not leave until after 9.30pm, which meant getting home just before midnight – for the second time for me this week! Joshua flopped into his bed without objection and hopefully he will enjoy a lie in too. My husband and I enjoyed a well-earned cup of tea then were not far behind him in our beds!

Down in the Mouth

Towards the end of last year, Joshua stopped eating and became painfully thin – he is already slim built, but he became very ribby and his hip bones stuck out sharply. We took him to the GP and tried to tempt him with all of his favourite high fat foods and , as a last resort, had his teeth checked out at the dentist. It is so hard when your child is non-verbal, it is necessary to be a detective to identify what might be hurting and how you can help.

On the last day of  term before breaking up for Christmas, we took him to his special needs dentist. It took three of us to hold him still so that she could look inside his mouth for long enough to identify the problem. She diagnosed oral thrush – which  she said would feel like sandpaper in his mouth, making eating unpleasant – and she found that he had cavities and gum disease. We came away with fluoride toothpaste,  an anti fungal prescription for his thrush and a strong sense of guilt that we had neglected Joshua’s oral hygiene. I had brushed his teeth, as best as he would allow, in the bath all of his life, just once a day maximum and now he was paying the price for my neglect.

We now have a much better dental routine : we have invested in electric toothbrushes for home and school and his teeth are now cleaned, of a fashion, three times a day using fluoride toothpaste. He now has his bedtime medication in sugar free yogurt, rather than chocolate mousse and he drinks more water than sugary J2O, which was his drink of choice. So we are doing all that we can, albeit his 17th year will be the first year of his life when we have taken oral hygiene as seriously as this, before then, if I am honest , his seizures and lack of sleep took precedence over his teeth. But now that his seizures are reasonably well controlled and he has never slept better, it is time to focus on his teeth:

Joshua will need to be sedated for them to properly assess and clean his teeth and to fill the cavities, and so he was referred on 22 Decemeber 2017 for that treatment.  Now almost 7 months later, we are still waiting for that appointment! I chased his appointment yesterday, only to be told that he is on the waiting list and that some patients wait for 14 months!!! I told her that I was not waiting that long when it was a child who was not eating and was in pain, what kind of system is that where that is acceptable. So while I can chase as a parent, I have engaged the support of his social workers,  school and his paediatric consultant. We should not have to go to these lengths when he surely has a basic human right to be looked after and not to be in pain?