Manners maketh Man

Joshua used a key phrase all weekend, which I loved everytime he said it : he kept saying “Thank you!”. He used it regularly in context when I gave him something and so it felt as though:

  • He was being super-polite, which I always love
  • He appreciated, at some level, what I was doing for him rather than taking it all for granted
  • It was some form of conversation exchange – he would thank me and I would reply ” You’re welcome!” and he would beam and giggle
  • It felt so much more meaningful than some of his other phrases like ” no glasses” or  ” no pants”!

I kept trying to video him saying ‘Thank You’ so that I would have a record to share with others and also, to have a record to keep for myself in case this week was a one off and he reverts to something different next week.

I love to hear his voice, to be honest, whatever he says but this is special. Joshua talked before his epilepsy took hold : he said his first spontaneous sentence in the car and I had to pull over to celebrate it, when a little voice from the back seat said ” I like dolphins!” I spun around and told him that I loved dolphins too. I also remember the first time he spoke to another child : we had rushed lunch to get to a local ‘Mother & Toddler’ group and as we got out of the car I saw his orange ‘spaghetti smile’ and commented on it to him. As we entered the village hall, Joshua sought out his friend, Molly, and ran up to her and said ” Look at my face!” and of course I cried and cried with pride.

Then the demon epilepsy took his voice away, he became mute for years and gradually he has acquired some language back and his vocabulary has expanded over the last 18 months . I talk a lot and so I worried endlessly when he lost his vocal ability as to me, communication is key and he did not have the manual dexterity to manage sign language. Even when he was mute,however, Joshua was always able to make himself understood somehow, but this phase of talking makes me very happy, as he can express his personality so much more easily through language, rather than just pointing to what he wanted.

Given that Joshua had language, then lost it and has now clawed some back, I never take for granted that he will always have this skill : I try to enjoy it while it is here and to record it for posterity, as it is often hard to remember what he was like. I have a video of an excited 3 year old Joshua bouncing and skipping around the deck of a ferry on the desktop of my laptop and for the entire video of two minutes, he is talking constantly and I watch it every week, to remind myself of what young Joshua was like and what he was capable of. 17 year old Joshua does not yet have that level of language, but he is adding more vocabulary everyday or so it seems. Onwards and upwards my son!

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Game changer

Change is difficult to handle, but sometimes it marks an exciting new adventure too : last night I went out with my colleagues to a Leaving Do for a dear friend, who has left our company after 31 years in the same role , to move onto  a new career. I am confident that I will still see her and social media also means that we will stay in touch, so it was more of a celebration of our time together and less of a goodbye, I felt. We all had a great evening out. Last weekend I visted another friend who has recenty separated from her husband and she has just moved into a rented flat in a new city, with no job as yet. This too is  a  new chapter in her life, and while anxious about a future on her own, she is also excited by the new beginning and her new possibilities.

Joshua handles change better than many of his peers but he still favours the familiar, which is one of the reasons that we prefer to holiday in the same cottages, so that we all know what to expect. This week he returned to school but in a new classroom and with a new teacher, but this is less traumatic in the 6th form at school, as they all have the upstairs of school across all three year groups, so he will have gone to the same shared area for his locker and used the same changing facilities, so it is only the classroom base that will have changed, which is more subtle than lower in the school and as Joshua has always wandered around all of 6th form, I doubt he will have noticed any difference. whereas last year was a bigger change and he kept wanting to return to Seniors downstairs, as he had been with the same teacher for three years, so that is where he wanted to gravitate.

I heard from a friend that her son was reluctant to enter the new classroom and she left him in school, running around the dining hall with staff trying to coax him in. Joshua has always had a fairly relaxed attitude towards change : when I left him at his Granny’s house last week, while I went for a meeting, although he had not done that for years, he did not fret or fuss, so long as he gets attention and a steady supply of food, he would never pine for me, he somehow adjusts and seems to think ‘oh right, this is what we are doing now is it? fair enough, crack on’. That even applied when he was wearing a cast after botox injections, he did not appear to be freaked out at all by the fact that when he awoke from a deep sleep that he had a bright red cast on his leg from his toes to just under his knee. Or after his teeth extraction back in July, I thought that he might have been distressed by two gaping holes in his gums, but he found a way to comfortably eat what he wanted to and adapted quickly.

I realise how fortunate we are to have a son who adapts to change well, in fact I think he adapts better than I do. It is possibly a blessing for him not to have the capacity to fret or worry, his ‘here and now’ outlook on life is a really good one, as he does not waste the hours or nervous energy on worrying about the future or what might happen. Some epileptics might be reluctant to go certain places or engage in some activities, for fear of seizure activity, but I have never taken that approach as I am concerned that you could waste his entire life waiting for seizures, much better to simply be prepared for them to arise at any moment, but to crack on anyway. Perhaps my son and I are more alike than I thought?

Life is what happens when you’re busy making other plans!

One of the many things that I have learned, having Joshua in our lives, is to embrace flexibility and the ability to be spontaneous. His seizures can force me to change my plans at short notice, whether I like it or not. This flexibility was fully tested yesterday :

After my work yesterday, I returned back to Mum’s house to collect Joshua from her care. He was pleased to see me, gave me a bear-hug, and I suspect that Granny was relieved to get her house and life back to the way she likes it too. I packed the car and we were on our way within ten minutes of getting back. My plan was to divert on the way home, to see my friend’s new flat, where my husband had been helping her to move in all day. The deal was that I would arrive once all the lifting was complete and that we would all have a takeaway tea together , to christen the new flat.

Sadly Joshua’s epilepsy had other plans as he began to have seizures, on the motorway as I was driving acorss the pennines. It was frightening as there was very little that I could do being alone, other than hold his knee next to me and try to reassure him, as I counted 25 seizures in ten minutes. I cannot recall that stretch of motorway at all and I know I was just intent on getting to the motorway  services, where I could stop safely and attend to Joshua. He was still fitting when I could stop and so I jumped out of the car, went round to the passenger side and administered his emergency medication. I then sat next to him, waiting for it to take effect – it can take up to 15 minutes to stop the seizures. Thankfully they stopped within about 7 minutes and then I waited to be sure and I reclined his seat , so that he could sleep. But he refeused to relax, he would not rest back on the reclined chair. After about half an hour, I  decided it was safe to continue my journey.

I arrived at my friend’s new address at around 6pm, and called her , only to find that they were back at the old address picking up the final boxes. As this was an hour away and as Joshua looked so pale and exhausted, I apologised but decided to take him home rather than waiting another hour for them to get back to where I was already waiting. I was really disappointed, but I know it was the right decision for Joshua. We were home before they had returned to the new flat, and that included a trip to Donalds Drive-In to try to cheer him up – it worked, as he was shouting ” Doanlds” at the  payment window and he devoured his Happy Meal. Often seizures make him hungry or thirsty , so that was another good decision and it meant that I did not need to cook once I got home.

So Joshua’s epilepsy has tested my decision-making skills to the limit : it is never an easy decision to administer his rescue drug as it has such a dramatic impact on him, but  when the seizures do not look as though they will not stop on their own, it is a necessity. It is a further test of putting Joshua’s needs first : I really wanted to see my friend and her new flat, but she understood that I had to put him first and there will, I know, be plenty of other opportunities to visit her. So the journey did not go to plan but that’s nothing new. As John Lennon said ” Life is what happens while you’re busy making other plans!”

Mother knows Best

I have not felt bad about Joshua having monthly short breaks for a long, long time : I know that we all need that time away from each other in order to refresh our batteries, to top up and to renew ourselves ready for the month ahead – in fact two months in this instance, as we do not have a respite weekend booked in September, instead we are having two in October! This time I have had my doubts that Joshua wanted to be there, given the sad send off that we received on Friday. To make matters worse, he had a cluster of seizures yesterday and he needed his emergency medication.

In my experience, it is when you are ill that you want to be back home and that you need your mum, but Joshua had neither. So I will be pleased to pick him up this morning and to give him both of those things that were missing, when he needed them most. When he has had his rescue medication, he tends to go very drowsy; as I undertsand it, Midazolam is an anaesthetic, so it calms the brain down, which is why his seizures stop, but inevitably it calms the rest of his body down too, so he slows down and often sleeps. When he was a little boy, as his dose has never changed, he would go into a deep sleep for hours and hours, now it is just 30-60 minutes typically, but then he is rather dopey and slow for the rest of the day. It sounds as though Joshua did that yesterday : hour long sleep and then he was alternately lively and cheeky, then he would crash again and need to sleep or just lie down. I was reassured that in his wakeful moments, his sense of humour and his appetite did not desert him!

I know that this only happens fortinghtly, or even monthly, now but it is still devastating each time and it makes me feel so much worse, to know that we were not there. Fortunately, the respite staff are likely extended family to him now, so provided he was with someone familiar, I am sure he will not have been too frightened. The seizure contorts the muscles in his face but it gives him a terrified expression on his face, which is never pleasant to witness as you wonder how he is feeling and is his face reflecting his actual fear. I would love to have one of his seizures  so that I knew precisely what he was going through.

It sounds as though  the respiet staff did exactly the right things yesterday , I know that he was in safe hands. But when you are unwell, there is nobody quite like Mum is there?

Pot or not?

A short while ago there was a lot of media attention on the use of cannabis oil in the treatment of epilepsy and a lot of friends and family have asked me if it would help Joshua and whether or not we will be trying it? I love to read the success stories that fill the newspapers about the miracle cures that epileptics have found, as they give us all hope that one day that we could end Joshua’s seizures. However these stories are always tinged with sadness too, as we know everything that we have tried so far – numerous anti-epileptic drugs, ketogenic diet and brain surgery  – and none of them have rid Joshua of his disruptive seizures.

Cannabis, as far as I understand it, has had some success with some patients with a specific syndrome, that Joshua does not have and therefore we remain cautious .  Joshua developed epilepsy because he suffered devastating brain damage at birth, so the structure of his brain has created the epilepsy, so my feeling is that cannabis oil is unlikely to help him. We discussed the use of cannabis oil with his neurology consultant at our last visit, as I would not try anything without discussing it with her first, just in case there were risks when combined with Joshua’s exisiting medication. She told us that medical trials were still ongoing to investigate its impact on children with epilepsy and that there would be more evidence next year. I am content to wait for that more considered medical evidence as ,although he still has seizures, they are as infrequent as they have been in his life, so I am happy not to rock that particular boat at present.

Should he be as extreme as he was back in 2010-2013,when he had several tonic clonic seizures every day and was forever hurting himself as he came crashing to the ground, then we would probably be desperate enough to try anything. If cannabis had been offered to Joshua back then, of course we would have tried it before embarking on brain surgery at Great Ormond Street hospital, as this was just about the most extreme invasive lengths we could go to.

So for now, please do not think that I am closed-minded about cannabis oil, I embrace any opportunity to be seizure-free, as I am sure Joshua’s current heightened awareness is due in part to the reduction in his seizure activity. But neither am I rushing to the health food shops to buy this drug off the shelf to home-medicate, just on the off-chance that it might help our son.  Epilepsy management is another tightrope that we walk and while we are relatively steady and balanced at present, I am not prepared to knock Joshua off balance; the risk of getting it wrong, through ignorance, is too great for me, so I will bide my time and wait to hear what the ‘experts’ say and who knows, next year this could be an option that we try.

Our Big Night Out

(We are having a great holiday so far and I have written a couple of blogs which have not saved or published, so if this does not work today, I will take a break for the holidays as the technology is too trying, when you are staying somewhere without wifi)

On our first day on holiday, we went to a country show where one of our favourite local bands, Lucid, were playing, and we were greeted like old friends , with hugs and catch up chats. My husband and I enjoyed the performance, but Joshua found the heat too much and slept on me, laid out on a haybale, throughout. We were told that they had a local evening show too, at a bigger venue, so after a quick nap at home we headed off to see them for the second time in the same day. It was a much bigger crowd and stage and with it being cooler too, Joshua certainly preferred it. He watched the show some of the time and pushed his own wheelchair around some of the time. He made a few new friends, as he tends to do at this events : a security guard came over to ask if he was a Fleetwood Mac fan, He high5’d a few members of the audience and one young girl asked me if she could say hello to him, of course I gave me permission : it turned out that her older sister has cerebal palsy and we had quite a chat. She apologised if she was being patronising towards Joshua and I explained that she was not, but that it was those who smiled, said ‘bless’ and thought how lovely that he was out having fun, that had the more patronising outlook.

Joshua clearly enjoyed himself and I think although he was wandering around amongst the crowd, he was probably less disruptive than some of the drunken obervers who were balancing on each others shoulders and bumping into other dancers.

After the Lucid performance, we stayed on and enjoyed another band, who sang familiar covers, and we did not leave until 11pm! Given that Joshua is usually in bed at 9pm and  am not too far behind at 10ish, this was indeed a Big Night Out for us, and he was asleep as soon as his head hit the pillow. He was pretty dozy yesterday, lounging around, chilling most of the day. At 3pm we went down to the beach and hired him a lounger to lie onand watch the tide coming in. He dozed and we swam in the sea, with him clearly in sight. As I lay on the rug, drying in the sun, I heard a familiar snorting and heavy breathing and jumped up to see Joshua having a seizure, which  ran into one after the other. In the end I had to administer his rescue medication on the beach and he slept it off on his lounger, until 6pm when they wanted to pack them away and so we had to wake him and bring him home. Sadly the seizures were the result of two of his key triggers : heat and tiredness, so he is extra-vulnerable on his holidays, when you add in excitement. No more big nights out for a while, until we recover from this one fully.

Fits & Starts

Joshua’s seizures are made worse by the heat and by excitement, so on the last day of term and the hottest day of the year so far, epilepsy was bound to strike. I got home from work around 6.45 and Joshua was happy and very pleased to see me, he kept following me around the house. I sat with my cup of tea to watch some TV and to put my aching feet up, and he came and snuggled in next to me on the settee. Within 5 minutes he began fitting : his legs and arms went stiff, his face contorted, his eyes rolled and he began heavy breathing. I tried to reassure him but he had more than ten short seizures, one after the other, and so I had no other option but to give him his rescue medication to try to stop them. He does not like the taste of Midazolam, but I think he knew last night that it was necessary, as he did not resist like usual.

More seizures took him over but they began gradually to slow down, with longer gaps between them so I was confident that the powerful drug was doing its job. However I had the telephone in my hand, as a 999 call was my next option as we cannot give two doses of Midazolam, it can compromise breathing and so he needs to be monitored by a health professional.

Joshua gradually relaxed and fell asleep, under the spell of Midazolam. I recovered myself and then ate my tea, sitting beside him throughout. An hour later he stirred and so I decided to take him to bed where he would be more comfortable. He was quiet while I undressed him and got him into his pyjamas.  I was reading him a story in bed, when he started to have more seizures. We would be looking at calling an ambulance at this stage  as I cannot give him any more rescue medication for 6 hours, so there were still another five hours to go. Fortunately, I hushed and stayed with him to calm him down and he only had 3 more and then he settled down again, exhausted.

Lets hope that this is not the shape of the school summer holidays that we can expect moving forwards!