Me Time

It is well known that carers tend to be bad at taking care of themselves and I am no exception. I often fill my Fridays off work with appointments, telephone chasing for appointments and volunterring at school. But yesterday I planned to be more kind to myself : In the morning , I booked myself in for a pedicure so that I could sit and have my feet taken care of and it always feels luxurious and decadent and seeing my painted toe nails gives me a little thrill when I see them.It takes about an hour and it is a time when I have to sit and be pampered, no multi tasking is possible. I know that not everyone enjoys letting someone touch their feet, but it is a treat for me.

From there I went to school for a meeting and I brought Joshua home, via Donalds so that he could have his treat too. Then it was a quick bath, before getting ready to go out. Yorkshire Grandma came at 6pm to baby sit. Unfortunately Joshua had seizures on the way home from school and so he was curled up on the settee, fast asleep when she arrived and when we left. We joined three other couples for  a Christmas party – a meal and dancing to a live band. Our nights out together are pretty rare and so last night we were defintely treating ourselves. I drove us home so it was not a boozy night out for me, but I had fun, enjoying the chat and dancing. It was after 1am when we got home, which considering I am usually tucked up in bed for 10.30 these days, was a big night out!

Yorkshire Grandma reported that all was well at home when we got back, so I was able to slide into bed and I must have been asleep within seconds of my head hitting the pillow. So I feel as though I am topped up on treats now, so will that enable me to be a better carer today I wonder? I do not underestimate the value of ‘me time’ but to be honest, I feel as though I get that every morning by waking up typically two hours earlier than my boys. I have the luxury of some time to myself before the day begins, to potter about, maybe bake, perhaps go for a swim, to write letters or emails, to watch something that I choose on Netflix , to play with the dogs, to practice some mindfulness and to write my blog. This has become an important part of my day and my routine, and I have to admit to feeling put out if either Joshua or my husband wake up early too and invade my space!

 

 

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GOSH Josh

Last night in his bath Joshua was laughing in stitches,almost making himself cry with laughter, at fake burping and wind noises. Once he had recovered himself, he would look at me expectantly awaiting the next funny noise. He has a great sense of humour but that is its level : rude noises, tripping people up, loud sneezes and people hiding then jumping out at him , shouting boo are all hilarious. But word humour, jokes, are too sophisticated for him – he is not interested in my favourite joke about the man who ordered kidlies in the butcher’s shop. The butcher replied ‘dont you mean kidneys’ and the customer sais ‘thats what I said diddle I?’! That never fails to make me giggle, but it would be meaningless to Joshua.

Your sense of humour is a very personal thing and nobody really can tell you what is funny and what is not funny. To be honest, I dont mind what Joshua laughs at, I just love to hear his belly laugh and see him crease his face up in pure joy. I often exaggerrate my reactions and actions in order to raise a laugh from him. At the moment a big loud sneeze is the funniest thing, so that is what he hears from me.

Smiling and laughter are really important in life and I realise that, while I am not a comedian or big joke teller, I do make it my mission to try to make people smile. Yesterday while getting my shopping en route to work, I fell for a special offer : I could buy three Malteser reindeer for £1.20, so I spontaneously decided to get 12 for my colleagues. Instead of putting them into my carrier bags, I stuffed these Rudolphs into my coat pockets for easy access and continued my way into the office, where I began to distribute the chocolate treats. They made people smile, as an unexpected treat usually does, well apart from the office-slimmer who was cross with me. The fact that I kept producing endless chocolate from my coat pocket really added to the humour, although I was asked if I had shop-lifted them and stuffed them into my pockets.

I then went upstairs to my office , to find a parcel on my desk: it was some biscuits from Germany from a grateful client. It was totally unexpected and it made me grin with delight. So at mid-morning coffee time I shared those delicious nutty biscuits with my colleagues, who thought that I was the Christmas fairy yesterday. Simple things – usually sweet things I find – bring people much pleasure and what can be wrong with that on a gloomy, wet day.

Christmas Countdown

I have been trying to get Joshua into the Christmas spirit since last Friday, by sending him to school each day in a Christmas jumper. He has so many now that he would not get the wear out of them if he saved them for parties – he doesn’t go to many! – and Christmas day. I started last friday, on the day that our towns’ Christmas lights were switched on. I took him into school and his festive knitwear made lots of people smile, so mission accomplished! He has five Christmas jumpers that we can rotate, to mix it up a bit and so that he can always wear a clean one.

But I see that next Friday is actually an official Christmas jumper day at school and so he is well ahead of that game. But on that day he will be able to donate to charity in order to continue wearing his Santa jumper. That is convenient as that is the day that he goes to his respite provision, the last one for 2018, and they ask that he also wears a Christmas jumper as they will be planning festivities there all weekend.

I have heard Joshua utter the word ‘Santa’ but beyond that, I am not sure that he is very interested in the celebration. Joshua is bored by opening gifts – he would much prefer,as he did the other weekend, to discover a hidden guitar, and begin to play it, without any of the hassle of wrapping paper , which is not easy to remove with just one working hand! It can often take us until New Year for Joshua to open his presents as we have to do it in stages to maintain his interest, which will be alien to many families where the children have torn the wrapping off on Christmas morning before it is even light.

He enjoyed last friday’s Switch On night for the spectacle and the sociability of the evening but not because it got him into the mood for Christmas. In the same way, he will enjoy the family gatherings that are planned, but will not join in with any festive crafts or playing of board games. I have bought some fun table games to try to engage him – pass the brussel sprout parcel and a game where you try to loop a ring over some inflatable antlers worn by a child, which might interest him. Joshua loves a cracker and has tended to monopolise pulling them : he enjoys the pull and the bang, but has no interest in who wins the contents and no paper hats are allowed to be worn by anyone within his reach.

Joshua’s experience of Christmas is different to that of most children but I will continue to try to engage him and he can opt out of whatever does not interest him. Often Christmas is a key time for epilepsy to strike as the key triggers are usually there in abundance : excitement, lack of sleep, unusual mealtimes coupled with some end of term cold germs, so there is a need to be extra vigilant.

Pay Attention

Joshua employs a range of strategies to gain attention, some of them are positive and some are more negative, but his intention is still pretty clear. He expects to be the main focus at home, and to be fair he usually is, and he is starting to feel the same way at school too. He has used hand gestures for some time: even at primary school he gave his peers rough high 5s and I had to teach him to tone it down, for the sake of the smaller children, and we deveoped a ‘zoob’ which only involved a mini high 5 with just one finger and that lasted for a while. The trouble is that I am sure he enjoys the smack noise and the burn on his hand after the gesture, so I have been unable to wean him off it permanently.

Joshua has been through stages of waving and more recently, at pointing at someone to catch their eye, across a room for instance he would pick someone out. Last week  he began to adopt a proper wave again. As he pulled out of the drive in his taxi, he gave me a royal wave rather like the Queen. He also has a new hand gesture, when he turns his hand out, palm up, as though he is saying ‘ta-dah’, which I love. When I took him into school last week, he stood at reception as though he was a meeter and greeter, beaming at the pupils as they arrived at school. He seemed to be saying ‘welcome…Look at me!’ So it seems that we have raised a show off.

However he has more negative gestures too, perhaps when that attention-seeking is not rewarded with a response. His favourite at the moment seems to be a kick to the ankles. It is not a painful kick, not overly aggressive, but he is saying ‘Oiiii’ with it and it is insistent too, accompanied with a twinkle in his eye. I have been on the receiving end of several kicks lately and I read in his diary that he has employed the same technique on staff at school too.

So now we need to work out how to teach him to communicate in a more socially acceptable way and to realise that he cannot be the centre of attention in every situation and at all times. This promises to be an interesting journey…

 

Fitting In

Joshua had a bad day for seizures yesterday : his day began at 4.30 am when he came downstairs pale and clammy, indicating that he had probably suffered with seizures in bed, perhaps that is what woke him up. He stayed awake until 6.30 when he grabbed an extra hour of sleep, but he was very reluctant to get dressed for school. But once dressed, Joshua was happy enough and he was pleased to see the taxi driver and escort. He was eager to set off as he shut the car door in my face, while I was trying to kiss him goodbye, perhaps he was bored of listening to us talking.

I had a call from the school nurse as I was on my way back to work, after my lunch hour. He was having very short seizures that lasted about three seconds, but unusually he was coming out of them fully in between, responding and talking, then some time later would have another. We discussed the use of his rescue medication but rejected it as it was not in the normal pattern for him. Gradually the gaps between them lengthened , until the seizures stopped. It was at that point that I should have offered to go and pick him up, rather than allowing the taxi to retrieve him. But they told me that he was happy and I had work to do, so I did not offer. but hindsight is a wonderful thing. It always feels like a big responsibility to make a judgement remotely as you are totally reliant on the information that you are told, whereas when I can see Joshua for myself, I instinctively know what is the best thing to do.

An hour later the passenger assistant in his taxi called me to say that, similar to last week, they were taking Joshua back to school as he had already had three seizures. The taxi does not carry Midazolam yet – though there is a plan that they will – and they are not trained to administer it, so we have guidance that they turn back to school if they are less than ten minutes drive away, to have access to professionals with access to his emergency medication. I tried calling my husband, but got no reply and I knew that he was going to walk the dogs after lunch, so I fled work to drive the 30 minutes to school.

When I arrived at school, it was virtually deserted, as it turned out that all staff were in training and fortunately I have a fob which enabled me to swipe myself into school through the security doors. I found after school club but no sign of recovering Joshua as I had expected, then we tracked him down at the back of the staff training session! He was pleased to see me and did not look as washed out as I had expected, as he had not been given his rescue medication. I was debriefed about what had happened and then we headed home, with occasional signs of seizure activity still rumbling on. Once we had got home, Joshua headed straight for his den where he curled up on the settee with his boots off and he just wanted to sleep it off. I went into the kitchen to start off his evening meal, checking on him every few minutes. After 25 minutes, there were two sounds coming from den that told me clearly that he was awake again: the fast strumming of his guitar, followed by the repeated slamming of the door, banging rhythmically and with determination, both sounds told me that he was back in the room and raring to go. He ate his tea in record speed as though he had built up a real appetite; I imagine seizures use up considerable energy. He pottered around for a while longer and then he went to bed and I am hoping that sleep will act as a reset button and that today will be a better day.

It’s a Dog’s Life

I enjoyed a programmed called ‘Dogs’ on Netflix this weekend and it really made me think. It is a documentary series of six different ways in which we use dogs in our modern lives and the first one was, coincidentally, a seizure alert dog in USA. The film features Corinne, a teenager, and her family. She suffered badly with epilepsy and as she would stop breathing during her seizures, so she could never be left alone. Her mother slept on the floor of her bedroom every night, after she had her first seizure at puberty, as they had found her blue after her first unexpected seizure. It showed her her younger sister was her constant guardian and how angry and upset Corrine would becoame after seizures. We needed this back-story to set Corrine’s story in context, but my husband would say, ‘Isn’t our life hard enough, without watching someone else’s struggle?’ but I enjoy this kind of progrmamme, showing other families and how they manage with familiar struggles.

The film went onto show the whole family’s excitement to hear they had been accepted for Rory, a seizure-alert dog and all the hopes that they were pinning on this labradoodle puppy. They had to go on a 12 day induction programme with 10 other families, each with different disabilites but all due a support dog. The young dogs were introduced one by one and each child immediately fell in love and cudled their furry friends. Of course I wept and Ruby, our intuitive cocker spaniel, climbed on my knee and tried to lick the tears away, which made it worse! They were told that these were working dogs, not a family pet and that Rory’s role was to take care of Corrine. So once again , her younger sister was upset as she had been hoping to gain a family dog but once again her poorly sister took priority. She was not even allowed to feed Rory treats or take him out to play, as he had to focus on his work and on Corrine. I had never before seen epilepsy from a sibling’s perspective and it was a sad angle to understand.

As part of the training, Corrine lay on the floor twitching to demonstrate her seizure pose and her Mum had to tell her what she was like as she never knew, as she was inside rather than outside of the seizure. Rory barked continuously while she  lay fitting on the floor , to gain attention. So the intention was that Corrine could gain some of her independence back, as Rory would alert people that a seizure was happening, or even coming, once he got the scent for it. She would finally be able to go out for a coffee with her friends, without her mother tagging along as Rory would be her minder. Rory would be by her side at school, helping her to cope throughout the day and giving her independence and reassurance. When she was angry after a seizure, Corrine could cuddle Rory, who was woolly like a sheep. The arrival of the seizure alert dog was going to change her life, as well as that of the entire family. My only criticism of the film was that it needs a follow up to see how her life has changed with Rory in it, as it ended with the family all being interviewed about their hopes and dreams, I was left wondering if Rory had delivered those dreams to them.

Sources of Help

When people reach the end of their tether, they turn to a variety of places for help : some people confide in their friends or family and others pray to their God but sadly others withdraw into themselves and don’t seek help anywhere, but they spiral down lower and lower. When you have a child with special needs it feels as though you are often in need of help as even when one issue is resolved, it seems another one rears it’s ugly head to bite you on your backside . No wonder there is a patron Saint of Disabled people, Saint Giles, who I had not heard of until recently – probably because Giles is known as the Patron Saint of the Crippled, Beggars and Lepers so he doesn’t sound much like someone that I would turn to these days! But it would be good to think that there was some higher force looking out for Joshua’s interests and who we could turn to. I am glad that In my lifetime ,the handicapped are now referred to as the disabled or as having special educational needs, but previously he would have been described as being crippled!

If he had been born in earlier times, he would certainly not have survived his birth and if by some miracle he did, he would not have been able to live in his community, but he would have been kept away in an asylum, where he would have been left to fester. Nowadays there are special schools to encourage him to reach his potential and to give him some independence skills ,so that he could live in his local community. These days disability is not always understood, but it is not generally feared or regarded as a curse on the parents, a punishment for previous misdemeanours. I am sure that Joshua did not suffer a stroke because of anything that I did wrong, nobody needs to carry that guilt around with them all of their life.

So we have much to be grateful for that Joshua was born in 2001 and I am going to keep Saint Giles up my sleeve in case I need his help in the future 😉