Fits and starts

Joshua woke up lively yesterday and came downstairs at 6.45, with no apparent side effects from his seizures or his  dose of rescue medication, much to my relief. He was pleased to see me and Yorkshire Grandma and was full of beans, so he had breakfast as usual and I got him dressed for school. Although I sent him off for school, with a note in his diary to explain what had gone on, I still had an uneasy sense of anxiety all day at work that I may be called by school at any moment to hear about more seizure activity. I jumped each time the phone rang and I was never far from my mobile, just in case they needed me to leap in my car.

The worst calls that we have had in the past are when the emergency medication has been given,but when it has not worked and so an ambulance has been called. That is a terrifying call to receive and on several occasions we have had to meet Joshua already at A&E and then, even through his post-seizure, drugged-up state, the relief on his face to see us,his parents among a sea of strangers’ faces, is visible. That must be a bewildering time anyway, coming round from a daze, to find yourself in a hospital bed, would be terrifying. The trouble is that at A&E, the doctors do not know Joshua or his epilepsy, and so they are working blind. In trying to establish if he has recovered sufficiently well to discharge him, the medical staff ask him questions that he could not answer on a good day, let alone post-seizure. In the end, they tend to ask us, as his parents, if he has returned to normal, normal for Joshua that is.

This will be yet another thing that will change after March, he will be classed as an adult and so will no longer go to the relatively pleasant environment of Children’s A&E, he will have to fight his corner with other adults. I was told that once he was 18, there would be no provision to  stay overnight with Joshua in hospital, should he be admitted onto a ward. I will have to fight that battle if it comes to it, but even as an adult, Joshua would need a chaperone , someone with him to be his voice and someone there to keep him safe too. I suspect the nurses would be begging us to stay with him to try to keep him in bed, to reassure him and to take care of his needs. Joshua would not be the first adult with learning disabilities to require a hospital bed, so there must be precedents.

But thankfully, on this occasion, the emergency medication did its job and there was no re occurrence of the night before’s seizures and he has promised me that he will also try to keep them at bay this weekend while he is away, in respite.

Welcome Back

We left our holiday accommodation, all tidy and sparkling, at 11am and we finally arrived home at 6pm, with one ferry crossing and three train changes later. It was a fun journey and the dogs behaved like angels all of the way, mostly curling up under the seats and going to sleep.They took strangers in their stride and were even calm when either of us got up to go and buy coffee from the buffet car. I could not have wished for better behaved pets, particularly given that Kevin is just 5 months old. He was wide-eyed , taking all of the new experiences in and only occasionally would he forget himself, as he let out a little bark, more in fear rather  than bravado.

When we arrived home, Joshua was upstairs in his bedroom getting changed, as we called out that we were back home. He squealed with delight and ran to the top of the stairs, where he grinned , posed on one leg like a flamingo and shouted in a high, excited voice ” I like you!”. We brought him downstairs where he could do himself less harm and he continued to shout for joy.  I received several bear hugs and I heard stories from Yorkshire Grandma and I read in the school diary and his respite diary too, so as to get fully briefed on events. I enjoyed a quick cup of tea and then it was straight upstairs for an early bath. Joshua remained excited and animated all night, he was clearly delighted that we were all reunited back at home.

Joshua has just four more days at school for 2018 and I have just two more days of work. I have booked tomorrow off on leave too, in order to attend Joshua’s school Christmas play. which will be fun I am sure. I am back at school on Friday morning for our final Parent Coffee Morning of 2018 too, on the last day of term so I need to find some baking time before then. This can be a mad, busy time of year which gets bogged down with shopping, wrapping and parties but Joshua reminded us last night that all he wants for Christmas is everyone to be at home together. His Christmas wish will be granted, plus some bonus family appearances from Granny for Christmas and his Aunt, Uncle and cousin, with her boyfriend, on Boxing Day.

So as he counts down the last few days of term in 2018, he can look forward to the year when he turns 18 years old, the year when he becomes adult in the eyes of the law! During next year, many things will change, but not, hopefully, how excited he gets when he sees his parents after a separation of five days, as I do not want that ever to alter.

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!



Together again

It seeemed a long time since I had seen Joshua, as I had packed him off to school on Friday morning, with his respite bag, and so I was looking forward to seeing him yesterday afternoon after school. I had a meeting there at 1pm so I had asked if I could travel home with Joshua in his taxi, as my husband dropped me off at school on the way home from our weekend away, so I was car-less. So when Joshua first saw me, waiting in reception for him, he beamed, gave me a hug and pointed at me and he must have assumed that I would be driving him home. So he looked rather startled and confused when I followed him to his taxi and helped him in, in the rain, then climbed in next to him. He kept grinning and pointing alternately at me and the taxi driver, trying to work out what was going on.

However, within two minutes of leaving school, Joshua began to have seizures , sitting next to me. I held his hand and reassured him, as they came one after the other, and his face took on a familiar pale, drawn appearance. They continued for several minutes and I began to reach for the rescue medication, sad that I was going to have to administer it so soon after being reunited. Thankfully, the seizures slowed then stopped on their own and so I cuddled my subdued son for the rest of the 30 minute journey home, while chatting to the taxi driver.

I recalled that he had suffered seizures when I had last seen him on friday morning too, so it occurred to me that I was the common factor here. Could seeing me be just too exciting? As excitement is a familiar trigger for epilepsy, or perhaps he was just so exhuasted from a busy weekend at respite and so finally when he had relaxed, the seizures had crept up on him. It is useless to speculate as we will never know the cause I suspect, so I should just be grateful that they stopped on their own.

Once home again, Joshua whizzed straight upstairs to his bedroom, where he wanted his boots removed and he requested ‘Shrek’ on the ipad, while I prepared his evening meal. He seemed to be delighted to be home again, amongst familar surroundings and with the two people who he loves most. I really hope that he understands why he goes away from us one weekend in four and that the break in routine does him as much good as it does us, as we love it.

A Friendly Day

I had 5 hours all to myself yesterday, which is rare and I made the most of it. As soon as I had waved Joshua off in the car with his Direct Payments worker, I grabbed my coat and went out. I went shopping to our nearest market town, where I was able to wander in and out of shops of my choice, freely. I collected some DVDs that I had had transferred off VHS videos – our wedding tape from 1995 and lots of footage of baby Joshua. I have not yet dared to look, as  I am expecting some of them to be emotional as neither of our fathers are alive anymore and little fat toddler Joshua, with his young, hopeful parents, will be quite a sight too. I try not to wallow in the past too much, rather to look forwards but there are times when I need to wallow and I wanted these images to be digitally preserved.

We often take Joshua to this market town at weekends so it felt odd to be there without him or his dad. I even found myself drawn to the impressive buskers, thinking how much Joshua would enjoy their music. I deliberately went into shops that he would not tolerate or that were not accessible, just because I could.

After browsing, I then went to my friend’s boutique where we had a perfect combination of each up dating each other on events in our lives and of me trying on clothes. We gossiped and we giggled and I had a lovely afternoon. sharing with someone who understands our struggles due to her having an autistic son. The last time I went to her shop, I had Joshua in tow and we lasted ten minutes as he was throwing cushions and pulling clothes off the racks, so this was a much more fun, relaxing experience.

The time flew by in her shop, so much so that I was only home ten minutes before Joshua arrived back from his outing. He had been out in sea air and so, soon after arriving home, he enjoyed an apple then we snuggled on the settee, while tea was cooking. A couple of hours later, friends arrived for an evening meal. Joshua said hello then retreated to the Den, but he did keep coming out to see what he was missing and he joined us, with encouragement, for homemade lasagne.

So I spent my Saturday with good friends, both with and without Joshua and I really felt as though I made the most of my DP weekend break too. I had got Joshua ready , with his boots on, early and he spent the ten minutes waiting time, at the front door, kicking it, ready to go out – which he has never done at home before. I tried distracting him but he was very clearly communicating what he wanted and when she arrived, he dashed out of the door towards the car, giggling. So that arrangement is clearly working for him now, no more shyness with her, which is lovely to see. Today I plan to visit another friend for lunch, so we will see how cooperative he is there, although we have not yet decided where we will eat, but she has already suggested ‘Donalds’ to make Joshua happy! Lets see how it goes, I am hoping that we can go somewhere nicer but it is good to know that we have it as a back-up plan to employ if necessary. So bring on friendly day, part 2…….

Game Plan

Yesterday I began what will be a busy weekend combining both work and fun, which has required a lot of planning and a lot of flexibility and assistance from others. I am working today and tomorrow morning in the North West, but when I ‘clock off’ at midday tomorrow, then I will be going to the theatre, to see the musical ‘Matilda’ , with Joshua and a friend and her son. So I will need to be adaptable to switch from work to play mode, from employee to mother/friend mode and back again, as I revert to working again on Sunday. I bought these theatre tickets as last year’s Christmas present for us all, so it has been a long time coming. But in August I won a contract and the client insisted that this was the only weekend that the project needed to take place. At first I said no, it was impossible as I had a prior commitment that I was not prepared to miss. The client was insistent, so I then began to work out if I could combine the two things and if so, how it could happen.

So Joshua and my friends will be arriving by train tonight and I will meet them at the station as my work commitment will be over by 7.30pm and we will have what is left of the evening together. I hope that Joshua behaves during the two hour train ride, but she is armed with the ipad if ’emergency Shrek’ is required as a distraction. H eis often exhausted by friday so he may sleep on the train ride. I imagine that he will be surprised to see me pop up at the railway station. I will sneak out of the hotel tomorrow morning as I have to work again, leaving  them all to play and I will be able to join them from midday for the rest of the day.

But then on Sunday I will have to leave early as I have to drive to London and to work again, leaving my friend to take her son and my son  back by train, where he will be met by staff from our respite provision , who will take Joshua off her hands, as this should have been our respite weekend. So I have only been able to achieve this weekend through the cooperation of both my friend and the flexibility of the respite provision, who will keep Joshua all Sunday day and night, sending him to school on Monday morning as usual. By the time Joshua will get home from school on Monday afternoon, I should be well on my way home!

It is complex plan and I have left my husband with a detailed list of where Joshua and me are at any point over the weekend and who is in charge of him. We are lucky that Joshua is adaptable as this weekend would be a test for anyone, let alone someone who may not understand plans. I am hoping that he will just go with the flow and enjoy the variety of carers that he will experience this weekend. Watch this space though……

Home from Home part 2

I left work early yesterday to take a look around a second possible adult respite provision, which is just 25 minutes drive from home, so is very convenient. Each time I do this, it reinforces the fact that Joshua will have to leave his current provision too soon and start again elsewhere, which is always a daunting prospect. So I am looking around, trying to picture a grown-up Joshua in this setting:

My first impression was not great as on entering, there was a reception desk and then a long corridor with offices off it, so it felt more like a hospital than a homely environment. Then it opened up into a large lounge area, which  felt like a hospital waiting room to me. There were two young men in there, lounging in armchairs, gazing at a television in the corner and I have to say, my heart sank. Then the lady showing me around, explained that they were awaiting their evening meal in 15 minutes, so I decided that perhaps I had caught them in a lull. The tour continued through double-doors into a large adjoining daycare facility and I was told about the activities that ‘service users’ enjoy there, although it was deserted when I was there.

Then she showed me one of 7 downstairs bedrooms, which were purpose built and very luxurious : the room was roomy, with tracking on the ceiling for a hoist and it had an ensuite bathroom, a television and a view out onto a large courtyard area outside. There were another 7 bedrooms upstairs and another quiet lounge. So then I had seen everything and she was able to answer all of my many questions, they are very comfortable with epilepsy and administering emergency medication. There was more flexibility over dates than at his current provision, in that you could save up your annual allocation of days and book a longer stay, potentially enabling us to go for a holiday longer than a weekend at some point in the future.

I felt uneasy about the ‘service users’ that I saw there however, as they were drifting around unsupervised. Joshua would need more direction than that and he would need close supervision for his own safety, he could easily have a seizure and fall down the stairs or burn himself in the kitchen. He would also need to be kept away from the reception and office areas for their protection, as he likes nothing better than to play on the telephone or computer keyboards and to scatter important papers and hide things – we have lost our TV remote control for over a month now! Perhaps the young people that I saw were more capable and independent than Joshua, but I cannot picture him in that large lounge, lolling in an armchair waiting patiently for his tea, he wreaks chaos at home in the run up to mealtimes, when I am distracted in the kitchen.

So my gut reaction is that it was not right for Joshua and I still have two more options to review, so I am keeping an open mind. I fear that we have all been spoilt by the excellent care that Joshua receives at his current provision and perhaps there is not as adult equivalent in our region, but I continue to seek it out.

I Second that Emotion

I expect today to be an emotional day for three main reasons : firstly, this morning will be the last time that I will see Joshua until Monday evening and that is a really long time without seeing or being with him. This is his short breaks/respite weekend and we are going away on a trip overseas tonight, so I have been busy packing both for his weekend away, buying pet food in bulk to leave behind and our packing – although ours is still incomplete and can be finished off this afternoon before we catch our ferry. I have been talking about Joshua’s weekend away with him but I am never sure if he understands, but he does recognise his overnight bag that always goes with him and he seriously studied me packing it last night on his bed. I am optimistic that I will receive timely text updates throughout his weekend, which will keep me updated , preventing me from worrying and wondering.

Secondly, I am having my first ever mammogram this afternoon and I am not really sure what to expect, other than discomfort. So that will be a new procedure in my life, now that I have reached that age in my life when the risk of breast cancer is highest. It has coincided with a diagnosis for an important lady in my life, as she begins her chemotherapy next week and I wish her well and a speedy recovery.

Thirdly, this morning is the harvest festival at Joshua’s school and I have always loved this celebration. I recall the first one that I went to back in 2011, back then the whole school walked down to the local parish church, which was a feat in itself. I sat at the back of the church and was overwhelmed by the singing, signing, joyand care in the church and I cried throughout it. Lots of concerned staff stoppped me on the way out to check that I was OK and I sobbed that I “loved it” through my uncontrollable tears. I am made of stronger stuff 7 years later, as I have seen several more school performances like that since, and although I may shed a tear or two at something poignant, I am ready and armed with tissues.


We are Family

We all fulfill many roles in our lives : I am a mother,  wife,  employee, friend,  Director,  school governor and  a dog-owner, amongst other things. But this weekend, I am a daughter and a sister primarily. For a treat, I have come away with my Mum and my sister and we have stayed away overnight, leaving my husband in charge of Joshua .It has been a real break to mooch around a stunning town, without worrying about wheelchair access and where the nearest disabled toilets are and to not have anyone grabbing the sunglasses off my face regularly, but to think about myself and what I want to do more than usual.

We met around midday yesterday and we have laughed a lot since then. Having checked into our apartment, which is both modern and luxurious, we headed up the hill to a famous tearoom for our pre-booked afternoon tea. It was held in a beautiful bright room and we were seated in prime position by an open window overlooking parkland and a pianist played, as we absorbed the special atmosphere. We giggled, took photographs and enjoyed the most delicious food and drank endless cups of tea from bone china. It was a perfect way to spend an afternoon together and our two hours in there, just flew by and we swore that we would never need to eat again!

We walked around a park on the way back to our flat, which was also stunning and the weather helped as it was a balmy evening, so we felt like we might be abroad, rather than less than two hours from home. We collapsed on the leather settee, compared photographs and Mum wrote her postcards from her holiday. After resting and digesting, we  were renewed and we changed and headed out again for drinks on the terrace of the large hotel opposite. We observed and speculated about a black-tie function that was being held there and we planned our next jaunt next year! We decided that we could fit in some more food after all and at 9pm we sourced a very tasty sharing platter to keep us going.

We were back at the apartment for 10.30pm after our big night out, then it was bath and bed. We have another big day of family fun today, before we each head back to our respective homes and lives. But this has been a wonderful mini-break  : a holiday with the only two ladies who have known me all of my life and a real break from some of my daily responsibilities. So I am feeling  very fortunate and grateful this morning.

“Your Josh”

As I left to pick Joshua up from respite, I was fairly certain that he would be pleased to see me but I underestimated by just how much. When I arrived he was sitting on his own in the conservatory, and  a member of staff said that he had just had to tell him off using his full name, for hiding the landline telephone again! As I came out of the darkness for him, repeating his full name and wiggling my finger at him, he was squinting, trying to see who it was! It was only when I got closer that he recognised me and he leapt off the settee and ran towards me, beaming. He squoze me tight and would not let go for ages, grinning from ear to ear.

He ran down the corridor towards the exit and leapt into the car, I do not think that he had had a bad stay, just that he knew where he would rather have been this weekend. He shut the passenger door behind him leaving me to load his luggage and wheelchair. When we set off, he kept grinning at me, getting his face really close to mine and he said ” Your Josh!” and I agreed, that he was indeed ‘My Josh!’. For the first 45 minutes of the journey home, he was very giddy, talking constantly, high-5ing and eating an apple and a packet of crisps. Then he suddenly drooped and went sleepy, but he had second wind when we were almost home, as he recognised the familiar roads and he began shouting “Back home!” adn got excited again.

When we pulled into the drive, he did not wait for me to shut the gate, but he leapt out of the car and ran into the unlocked house. He scanned the house, going into every room and playing with everything briefly – so at one point he was playing the piano, with Robbie Williams singing in the background, with Shrek on the ipad and the cordless hoover both lying on the floor and surrounded by tennis balls to throw for Ruby. There was absolutely no doubting that he was happy to be home. He devoured his lunch and then wondered about a nap,but was too busy to fit that in.

I love how Joshua shows his affection and his emotion, it would be impossible to miss even by someone who did not know him that well. He has very limited language but he still managed to talk all the way home. There was no hint of a sulking teenager or an epileptic who had recently had emergency medication after a bad cluster of seizures, this  was a happy young man who had all that he wanted in life.