Shop Rage

I wrote recently about how demanding Joshua was when I had visitors who took my attention off him for a short while, but yesterday during our weekly visit to Tesco, Joshua pushed his behaviour further. He had been excited to get his boots on and go out and had shouted ‘thank you’ when we got to the supermarket, as he usually enjoys these shopping trips. We had pushed a trolley in from the car park but almost as soon as we were through the entrance, he began to misbehave.  As we negotiated the trolley down the busy fruit and vegetable aisle, he was pulling it against the direction we were going and I was anxious that he was going to crash into someone. We were only on that first aisle when he kicked me with his big boots, right on my ankle bone and made me wince with pain. By the second aisle he was smacking me hard on the chest, so that I had a red mark  and it stung. I stopped the trolley and told him firmly to stop hurting me, but he smiled his cheeky smile as though it was all a fun game, and gave me a big hug as though to apologise. So we continued on with our shopping list, which was longer than usual, so that might have been the problem.

He continued to misbehave and to smack me as we moved through the store, so much so that I was very grateful to get to the checkout and I vowed not to bring him for a while as it had proved to be both painful and very hard work He sat nicely on the seats at the ends of the till while I unpacked the trolley and re-packed my bags. For a moment I thought how much I was looking forward to next respite weekend without him and then I immediately felt bad for thinking that way, as I know I will miss him. Just before I was finished bag packing and before I had paid, he jumped up from the seats, started to come towards me, then decided it would be more fun to run away, towards the exit. So I put down my shopping and dashed after him, bringing him back to our till, where the kind lady behind me was loading my remaining shopping into my trolley. She explained that she was the daughter in law of our neighbour and she could see that I had my hands full that morning. I was quick to tell her that he was not always this bad, that he usually enjoyed our weekend shopping trips, and she kindly replied that ‘we all have bad days’, so it did not feel as though she was judging either of us.

A meek, helpful Joshua helped me to push the full trolley outside to the car and he obliged beautifully getting into his seat and waiting while I loaded the bags into the boot.We both had a quiet sit and contemplation, before I drove us home again. Once home, I took Joshua’s boots off and he went into his den for some quiet time, while I unpacked the shopping. He resorted to his relaxation which was to enjoy his music DVD and I resorted to mine, so I went into the garden to pick some apples and blackberries, and I set about making a crumble to reset my equilibrium.

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.



Out of sight, but never out of mind

We have enjoyed a lovely weekend away , while Joshua has been taken care of at his respite provision. We always try to do things that are more difficult with Joshua in tow. Yesterday for instance, I went to a church  pet service that he would have enjoyed as it was attended by 7 dogs as well as our Ruby plus two rabbits and 20 human beings. But being just me and Ruby was a much simpler experience :  I could chat afterwards with other member of the congregation without being dragged around the hall or having to leave early as he was restless. I could enjoy the hymns and join with the prayers fully, without having to do high-5s or having to shush him during the quieter moments.

We went for a pub lunch, where we were not anxious over timings, when they took a long time to seat and serve us, there was no anxiety over Joshua being restless at the table. I could eat my meal while it was hot, without interruptions and without alternating one forkfull for me and then another for Joshua. We declined puddings but we could have stayed longer and eaten a dessert if we had wanted, there was no need to rush away. We could eat and talk, there was no need to talk over Shrek 2 on the ipad.

After our lunch, we had a walk in the drizzle to the river and again we could take a different route that was not wheelchair friendly  – rather than walking along the road, we walked along a meandering muddy lane , through fields and then along a steep ridge to get to the river. Usually I stay by the river with Joshua throwing stones for Ruby to fetch, while my husband walks further on , climbing up to a waterfall and beyond. So this time, I clambered up a rock face to get to the waterfall and slithered around on rocks in the waterfall itself, just because I could do so.

After our walk, we drove home and we both fell alseep on our settee in front of the TV – there was no need for one of us to stay awake to watch Joshua. And we woke naturally , when we were rested, not when we had a cushion thrown at our heads or a tall boy sat on us! We did not eat our evening meal until after 9pm, instead I had a lazy bath to ease my aching muscles, but there was no necessity to eat early because Joshua needed to be fed. In short, respite means that we are able to focus on ourselves and what we want, rather than putting Joshua’s needs and wants first and that is what our short breaks mean to me.

After my bath I called his respite provision, as I always do around bedtime, and was upset to learn that Joshua had had a cluster of seizures in the afternoon – just about the time we were setting off on our river walk -and they had lasted long enough that they needed to intervene with his rescue medication. This had of course left him quiet and drowsy for the rest of the evening and he refused to eat his evening meal. I immediately felt guilty and sad that he had been suffering while we were outdoors having  fun. My instinct was to go and fetch him and to take over his care, as that is my role as his mother.

But then later, I gave myself a talking to – as I often need to do : the respite provision had done the right thing and had been attentive, there was nothing more that I could do other than cuddle him better. As of 10am today, Joshua will be our responsibility again , 24/7 now that he is on school holidays. I am more than happy to resume parenting duties then  and this weekend has been perfect to top ourselves up to enable us to do the best we can for Joshua, until the Friday in another 4 weeks time, when we can hand him over to them once again.